Surviving PKD

PKD: Options. Anyone? Anyone?

2011-02-11T08:55:00.001-06:00

I received an email yesterday from a woman with PKD. She was looking for a doctor who specializes in PKD. I didn't have an answer. Here is the exchange:

I was researching a doctor who specializes in PKD in Texas. I have not been able to find anyone and am hoping that you might have some information... I come from a family of PKD sufferers, my mother is 70 and had a transplant 18 years ago and just recently went back on dialysis, my sister died in 2006 three days after her kidneys were removed, my brother has it but is early in the stages and I myself have it. Only one child from our family was free of PKD and she donated her kidney to my mom. I have been going to the same doctor since 1993 however, I do not feel that her level of knowledge in PKD is as expansive as I would like. Since this is my life and I can only be in control of certain circumstances I want to be in charge of what I can. Do you have any suggestions on physicians that specialize in PKD?

Ouch. Tough question. We all want to be "in control of certain circumstances," but that's tough with PKD. My reply:

I wish I had some information for you. I assume you've talked to the folks at the local chapter of the PKD Foundation. You can reach them at northtexaschapter@pkdcure.org.

I was the first in my family to know of PKD...The doctors actively treated symptoms (mainly swelling and blood pressure, I never had major pain issues) and that was about it. Which suited me as I tend to be rather stoic and ignore symptoms. (Some would say I deny...) The result was that I never even knew anyone else with PKD until someone reached out to me through Facebook. Then I started to blog, just to provide a shared experience.

Throughout the whole experience I have been a patient of Dallas Nephrology Associates. I have had a good relationship with my doctors, though I wish there had been more that they could done.

So. That's my story. I would be interested to hear what you find, please stay in touch.

I confess, since my transplant, I have not thought as much about PKD. Susan went to the PKD Foundation's National Convention a couple of years ago when it was here in Dallas and their focus seems to be on research. You can check out some of the clinical trials here., look for studies which are recruiting, check status. Here's one from NYU Med School that shows promise: drinking lots of water slows cyst development. For real! They finished recruiting volunteers almost two years ago, but but haven't posted the results. It sounds silly, but what are cysts but 'ugly bags of mostly water?' There are lots of trials and lots of research and it's encouraging.

But, what of treatment? I can't find much that's new. Same as it's always been. Treat the symptoms. Watch out for any sign of high blood pressure. Kidneys are pretty resilient, the cysts can squeeze them like a sponge, but high blood pressure is what does them in.

The New Base Line

2011-02-09T02:17:00.000-06:00

It's a clear wintry afternoon. The warmth of the sun has given way to shade. Another round of ice and snow is predicted for tomorrow. But it's almost mid-February, and in Dallas, spring is just a few weeks away, though with all the ice we might not have daffodils for Valentine's Day.

And I am ready to be over being depressed by the bout with BK Virus, because I think that depression has been my recent base line. Looking back at my BK experience I can see that I've gone through a classic sequence of the stages of grief.

What are the stages of grief? The Kubler-Ross model was outlined by Elizabeth Kubler-Ross in her 1969 book On Death and Dying. (It's great to know that some of the great visions of 1969 had some validity!)

     Denial: lasted through diagnosis and early stages of treatment
   Anger: when treatments didn't work and blood pressure started fluctuating
     Bargaining: through the end stages of treatment, eradicating the last bit of virus
   Depression: when I realized that the kidney was not going to heal itself.
     Acceptance: when I accepted the fact that the kidney is not going get better and that I am back to living with Chronic Kidney Disease. Fatigue, swelling, shortness of breath, water retention. All of which leads back to cycles of Anger and Depression.

Which is where I am on this winter day. My last labs were two weeks ago. Creatinine clearance was 3.6, better than the 3.9 of Jan 4. Other numbers corroborated the creatinine clearance. Still a touch anemic, but that's been consistent for the last six months. The good news is that the kidney function seems to be stable. Some variation is to be expected. The suspicion of rejection has been cleared and they don't see the need for a biopsy. That's good news. And my visits are now four weeks apart which is also good news.

All of the antiviral treatments were expensive and the copays are going to take time to pay off. The deductibles for insurance more than doubled with the new year, so the less I see the inside of a hospital the easier life will be.

Here's to Stability!!!

Is It Really that Bad?

2011-01-18T22:51:00.000-06:00

Wow, the last post caused some concern.

Going back and rereading it I can see why. I was hoping for an unlikely outcome and it didn't happen.

Was I surprised?

No.

Was I disappointed?

Yes.

Maybe that's why they call transplant a 'treatment' and not a cure.

BK Virus: Won the Battle but Lost the War?

2011-01-04T14:38:00.000-06:00

That's the way it looks after today's visit to the clinic.

It was a great holiday season. Business was good, days were busy, filled with visits from good customers stocking up for the holidays. At home, we had a gorgeous Christmas tree and Travis and his friends filled the house and kept things hopping! Family and friends overflowed into the back yard on a cold New Year's Day all eating chili, tamales and blackeyed peas to bring good luck to the new year.

I went into the clinic briefly a couple of weeks ago to provide samples for lab tests to monitor kidney function and went to Baylor yesterday for a serum test to measure the BK virus. Should have gone to Baylor last week, but late nights made for short mornings during the busy week. Timing was not critical, it just means that the results weren't back when I was at the clinic today.

However, results of the labs were not encouraging. Creatinine was 3.8 two weeks ago and 3.9 today. Clearance was 25% a month ago when the creatinine was 3.3, so clearance is approaching the 20% mark, when is when we can start the transplant process all over again. The suspicion is that the decline is due to scarring during the BK inflammation. It could be caused by low-grade rejection caused by the reduction in immuno-suppressants, but rejection is not thought to be likely. I'll go back in three weeks and they'll recheck the labs and then in all probability they'll do another biopsy of the kidney to confirm that the scarring is BK related, not rejection.

And then I guess I just wait for the kidney to gradually stop working.

Should have eaten more blackeyed peas.

BK Angst

2010-12-10T08:19:00.001-06:00

Yeah, I felt pretty down in the dumps last week. My eye was screwed up, kidney function wasn't great. Emotional vectors were definitely pointing down. But I'm still getting up, going to work, laughing, scratching, and having a good time. And so is my friend and colleague Eric. Only he's got an inoperable tumor in his liver, the latest blow in his four year battle with colon cancer. He's the one with courage. "Back where I come from, we have men who are called heroes..."

Me, I'm doing OK. This week's labs show the creatinine's down a bit, so that's a good thing. The 24 hour urine test confirmed the results of the glofil test: kidney function's not great. I can feel it. I get tired more easily than I have in the last couple of years, but I just have to watch myself. The BK Virus can always flare up as can the iridocyclitis in my eye. They are now part of the background radiation of my life.

I asked if the kidney will possibly heal as time goes on without active inflammation from the BK Virus or the toxic effects of the Cidofovir but was not given much encouragement. Stability would be good, she said.

But I can hope; take care of the little kidney. Watch my blood pressure, try to limit caffeine and alcohol, and hydrate, hydrate, hydrate.

Does Three Make a Collection?

2010-12-07T02:05:00.001-06:00

I hail from a family of collectors. Collecting Curteich postcards was an early foundational activity with my wife. It has grown into numerous, highly specialized collections for which we are continuously searching. My sisters have collected men with penchants for curiously curated collections. One in particular has collections that exceed any notion of reason, but visiting his house is always memorable event. But the standard has always been 'three.' Whatever you have, if you three you can call it a collection.

My newest collection seems to be exotic diseases. The mainstay has been PKD. Polycystic Kidney Disease. Which morphed into End Stage Renal Disease, dialysis and transplant. I went for a year with no kidneys. Did I still have PKD even though I no longer had Polycyctic kidneys? The disease is genetic and I still suffered from its effects... I never knew anybody with PKD until I met people through the Internet after my transplant. And until my son was diagnosed.

Then I discovered BK Virus. Or it woke up. I had positive antigens at the time of my transplant, so I guess I first acquired the virus 55 years ago. Current tests show no copies of the virus are swimming around in my blood, but it feels like it's still lurking in the shadows. I have yet to talk to someone with BK Virus. I've read a couple of blogs, but that's about it.

Then last week in the middle of a nasty cold, my eyes turned bloodshot and painful. The left eye cleared but the right eye got worse. The orbital area ached and was sensitive to touch and the eyeball itself ached and throbbed with pain. Tearing was constant and vision was blurred. Adjusting to light took forever. The assumption was that it was a nasty case of conjunctivitis, but the eye didn't feel gritty and the secretion was not sticky and yellow. All this transpired over the Thanksgiving weekend and I just endured until doctors opened up Monday. I was able to get in to see my opthamologist Monday afternoon.

After the exam, his first question was whether I had rheumatoid arthritis. No, I said. He asked about several other conditions, the answer to all being the same No. Then "We'll give you a pass this time, but the next time this happens we'll start testing to find the cause. What you have is Iridocyclitis." I said, "What"

Iridocyclits is an inflammation of the iris and the muscles that control the iris. It is caused by either chemical irritants or is a complication of certain infectious or auto-immune diseases such as rheumatoid arthritis. Treatment is by dilation and then a strong dose of topical steroids (prednisone eye drops) and seems to have worked fairly quickly. Symptoms are much relieved and I'm slowly tapering the dosage.

An interesting coincidence is that Dr. Nesser had recently increased the dosage of Arava (Leflunimide). The main purpose of the drug is to treat rheumatoid arthritis, but it also has anti-inflammatory and anti-viral effects and so I was taking it for the BKV. I had an appointment at Dallas Transplant the day after I saw the opthamologist and they stopped the Arava.

The cold and eye are much better now, thank you very much.

Other news is not so good. High blood pressure continues to be a problem, with nighttime spikes climbing to dangerous levels despite increased dosages of meds. And creatine continues to climb. The clearance number was up to 3.7. The glofill test results were equally discouraging. Kidney function is almost to the point where I would qualify for another transplant, though not to the point of dialysis. Kidney failure causes high blood pressure which further damages the kidney. I've been down this road before. Damage from the BK Virus inflammation and from the Cidofovir infusions have also contributed to the loss of kidney function. Ouch.

So, I have a prescription for a new blood pressure medicine and go back in a week with a 24 hour urine sample. The irony is that with the cold gone, and the eye feeling better, I haven't felt so good in weeks!

Little Kidney: 1, BK Virus: 0

2010-11-18T11:34:00.000-06:00

BK Virus: 0 copies in last two blood serum tests.

It looks like the antiviral forces of Cidofovir and Leflunomide have scored at least a temporary knock-out of the BK Virus. I don't know whether the BK can come back, I guess that's the next area of inquiry, but for now it's gone. The test was taken Tuesday before my last Cidofovir infusion. As of now, no more infusions are scheduled. For the time being I will stay on Leflunomide. My next appointment at the Clinic is in two weeks, so some of these questions should be answered at that time. As usual I didn't think of these questions while at the Clinic yesterday morning. (I never think of questions while I'm with doctors, they always come later, just like smart things to say in conversations at parties!")

The next step is to see if the kidney recovers from the ravages of the viral inflammation. Creatine was 3.5 yesterday, up from 3.1 a month ago. My blood pressure has been running high the last couple of months, that can't have been helping. I have new dosages of meds to control that problem. Remember that the main side effect of Cidofovir is its toxic effect on the kidney. I'm hoping that stopping the infusions will gradually allow the kidney to recover. Another topic to investigate.

But for now, I'll take a deep breath, smile and relax.

One more thing for which to be thankful next Thursday.

Happy Thanksgiving!

Beginning Year 3 Post Transplant

2010-11-03T01:15:00.001-05:00

It was between verses of the last hymn Sunday as we (the choir) stood alongside the congregation that I realized that I had just passed the second anniversary of my transplant. It was strange that I hadn't been aware of the date as the first anniversary had been such a huge emotional event for me. It's not that I just forget about it, but rather that being a transplant recipient has become an integral part of the natural fabric of my life.

So rather than look back a second anniversary, I will look ahead to beginning year 3.

Besides, the big date this year was turning 60 a few weeks ago. Ouch, that hurt. 60 might be the new 50 and that's middle age, but 70 is next and that just damned old!

BK Virus is still the medical news. The number of copies in the serum tests have been as high as 3150 and the last number was 650, a new low. Had a Cidofovir infusion today and will repeat in two weeks before I see the doctor again and get results. They also doubled my leflunomide prescription to see if we can get this thing eradicated.

Yikes, the nurse today was so stiff. Today was the third infusion he's administered and the second in two weeks. Yet he never smiled or showed any sign of recognition. Jeez! I work retail and remember customers and I see way more customers than he sees patients! Other nurses greet me by name so it doesn't seem so unreasonable...

Anniversary also means it's time for a Glofil test. Glofil gives a detailed look at the Glomular Filtration Rate which is the ultimate measure of kidney function. Hydration is the name of the Glofil game. Preparation involves drinking water until it's leaking out your ears and then ingesting an Iodine stain and receiving an injection of radioactive sodium iothalamate. Then as you drink more water over the next three hours, blood draws and urine collections measure how well the kidney filters the solution out of the blood. Dallas Transplant administers the test several times during the first year post transplant, then it's done on an annual basis after that. I'll get the results when I go back to the clinic in a couple of weeks.

For Those Living Without a Net

2010-09-10T00:11:00.006-05:00

We ran into some friends at the store last Sunday. She used to teach with Susan but took a position at another school and they drifted into different circles. After a few minutes of high spirited catching up, her face got serious and she broke the news. She had been diagnosed with breast cancer and would be having surgery, a lumpectomy, on Friday morning. In just a few hours actually as I write late Thursday night.

"It's no big deal," she said. "They'll do the surgery, blast me with a treatment of radiation and that should be it."

"Oh no," I said. "Anything like that really is a big deal."

But I didn't push it.

She is going into the surgery and treatment with a strong show of laughter and optimism, determined to conquer the disease with the sheer strength of her will. I hope she can maintain.

* * * * *

My cousin had a debilitating hemorraghic stroke several years ago. She was feeling bad, went to the doctor and was found to have extremely high blood pressure. The stroke hit before they had totally found the right combination of drugs to keep it under control. She's lucky to be alive, though it's not every day that she considers it luck. The left side of her body is still paralyzed.

Yet her struggles to regain a semblance of normal life have been heroic. She now drives and has returned to teaching school. She swims, rides horses, and even skis and blogs. You can read her story here My Stroke of Fate or click on the link to the right.

* * * * *

Another good friend, a colleague of mine, has been battling colon cancer for a number of years now. He was diagnosed about the same time that my Polycystic Kidney Disease was getting bad enough to impose its presence on my stubborn consciousness. For a while we would kid ourselves that we were just trying to stay sicker and more critical than each other. But his cancer kept metastasizing, first in his lungs, then his liver, then his liver again. Each of these stages was treated with chemotherapy and radiation and he was pronounced clear of all but the last attack on his liver.

The chemotherapy is not working so well this time, but he is a stubborn fighter.

* * * * *

When the BK Virus was causing increasing kidney failure and I was going in for the first treatment of Cidofovir and immuno globulin, he once again joked about me one-upping him again. His concern for my condition was real.

But there is a big difference between my situation and his. If the BKV wins and causes the failure of my grafted kidney, I just go back on dialysis. Life's routines change, but the quality of life is still good. We joke, but I've got a safety net. He's working without a net.

* * * * *

I remember years ago when we first encountered the severity of PKD. It was a scolding from the doctor we consulted for a second opinion when I faced my first kidney surgery. "The kidneys are already virtually useless," he told us. "Don't you know you have a progressive, uncurable fatal disease." No, we didn't know that, and crept in tears and fear to our car and back to work.

The shock was intense, but faded over time, only to return with a sense of anger and futility each time the disease reared its ugly head. But I've always had confidence and my strong sense of denial has enabled me to stay positive in the face of the negative prognosis.

My friends with cancer and my cousin with her stroke have no doubt had many moments of shock, anger and grief over the blows that life has dealt them, but they have battled back with great showings of confidence.

* * * * *

We heard about another old friend a few weeks ago. He and his wife and children (who were about the same age as our children) had moved back north a number of years ago. With no apparent illness beforehand, he died in his sleep of a massive heart attack.

Boom. Just like that.

BK Virus: 9.8 Treatment Continues

2010-09-09T00:52:00.000-05:00

Another early morning rainy drive. This time through a heavy downpour as the remains of Hurricate Hermine pass through North Texas. As I'm about to turn towards the hospital parking, I remember that that's where I went yesterday for another infusion and today I'm going to the transplant clinic for followup.

Yesterday the Cidofovir infusion had gone smoothly with no incident and I was out by lunchtime. Today I found out some results, with more good news. The number of copies of the virus was down to 850! A considerable improvement from 3,150 two weeks ago and from the initial count of 497,000 back in June. The blood test is drawn BEFORE the infusion, so the number is the result of the last treatment. We'll know the effects of yesterday's treatment when blood is drawn before the next treatment in two weeks.

Everything else is stable. Creatinine was up a little at 3.3, but Dr. Nesser was not too concerned. Blood pressure is up, so he is restarting one of the blood pressure meds that had been put on hold. Hemoglobin and Red Blood cell numbers are both up. Still low, but improving, so the Procrit injection was put on hold again.

All in all a good day, with steady improvement in the fight against the virus. I was a surprised that the creatinine wasn't better. I've sure been feeling a lot better the last couple of weeks with a lot more energy.

BK Virus: 8.25 The Weather Turns

2010-08-26T00:11:00.001-05:00

It was a relatively cool and definitely a rainy morning when I left the house for an early lab time and doctor's appointment at the Dallas Transplant clinic. Relatively cool means 72 rather than 85 at 7:30 in the morning. The first cold front of the season had finally broken through the long run of 100+ degree days.

The wind switched to the north early yesterday soon after I got home from my second infusion of Cidofovir. The morning in the hospital went quickly and smoothly and I was not experiencing any of the wrenching side effects from my last infusion. So the culprit was definitely the immuno-globulin, so if it's ever offered, watch out! (Although I don't think it has that effect on everyone.) I was extremely nervous about the infusion. My pulse was racing and my blood pressure was high all morning, but it came down quickly once I got home.

The early lab today was to monitor the effects of the drug on my kidney. (Remember that Cidofovir's primary side effect is its nephrotoxicity.) I received the lab results from both this morning and last Friday and the results from both were good. The creatinine was way down from 5.1 to 3.5 on Friday and it improved to 3.0 today. The hope is that the inflammation from the virus is going down allowing the kidney to function. The other possibility is that the kidney is recovering from the trauma of the immuno-globulin reaction. The family logic is "both." Whatever. It's going down and I'm feeling better. 'Nuff said.

I mentioned to Dr. Nesser that "it's ironic to be so happy about a 3.0, when just a few weeks ago we were so alarmed I was in the hospital the next day to check it out!" He just smiled and said, "It wasn't so good the other day, but it's pretty good today." Hmm. I guess the meaning's always in the vectors.

Even bigger news was the progress against the BK Virus, the number of copies of the virus cells was way down. From 54,500 (from a plasma sample taken just before the LAST infusion) to 3,150 (from a sample taken just before the infusion yesterday.) So that's huge! The difference is mainly due to the Cidofovir infusion. It's definitely working.

So unless I start showing really bad symptoms I'll go a couple of weeks without seeing a doctor. Another infusion is scheduled in two weeks with labs and a doctor's visit the following morning.

On the third front, I'm still somewhat anemic, but the numbers are getting better as well. Insurance finally approved the Procrit injections, but I'm feeling OK, so we decided to see if I continue to improve without incurring the expense.

And with that I ventured home through the cool, cloudy August morning, had some breakfast and a nice morning nap!

BK Virus: 8.16

2010-08-17T23:25:00.001-05:00

The weekend started last Friday with a restful day in the hospital dozing after the biopsy. Travis drove up from his new home in Boerne, Texas (in the hill country just north of San Antonio) to get another carload of stuff, so it was a very pleasant weekend. Too much to eat, too much to drink.

After the trauma of the immuno-globulin reaction, the big jump in creatinine and all the anxiety that I experienced leading up to the biopsy, it was somehow relaxing to hear that the inflammation was being caused by the BKV and that my body was not rejecting the kidney. I had almost convinced myself that I would be back on dialysis in a matter of days. I'm thinking now that while I might wind up back on dialysis eventually, it won't be for a while and it won't be without a fight.

And with that positive frame of mind I walked into the clinic Monday afternoon for labs and a visit with the doctors.

And for a change the news was good.

Creatinine was down significantly, from 5.4 to 4.1. Everyone breathed a big sigh of relief. Of course what caused the improvement in kidney function is not necessarily clear. It could just be that the kidney is recovering from the shock of the reaction to the IVIG. It could be that the increased dosage of prednisone over the weekend reduced the inflammation.

The number of copies of the virus was 54,500 vs 45,000 a couple of weeks ago. It sounds like a significant difference until I remember that the initial count in June was 497,000. So the virus is holding steady, creatinine is coming down, time to go back on the attack.

I'll go in for another round of labs at the end of the week and then back into the hospital next Tuesday for another infusion of Cidofovir. And then back for a another visit to the clinic the following day.

And no doubt do it all over again!

(The image shows the cell structure of a rejected renal transplant.)

BK Virus: Biopsy Two

2010-08-13T23:08:00.001-05:00

The day went very smoothly once we got to the hospital. Check-in was smooth and easy and unlike last Friday which was a mob scene in the waiting room, today the room was virtually empty. Even nicer was the room which was opened to the north side of one of the older buildings, so the north light was filtered through large old live oak trees (and no direct sun!)

Dr. C monitored the biopsy which was nice. He's a good doctor who is willing to discuss every facet and listens to what the patient is saying. He performed some of my pre-transplant exams, post-transplant immediately after the transplant and I have seen him a couple of times for my routine check-up's as well.

The biopsy nursing crew consisted of the same crew who was there last time. They take pride in what they do and I think they like to think of themselves as the "pros from Dover." It's a relaxed but professional environment. When I wanted to see the needle, they showed me the needle. When I wanted to see the tissue samples, they tried to show me the tissue samples. Unfortunately I couldn't raise my head high enough to see them, but the effort was made.

And then it was the mandantory six hours of bed rest. Timing was good, I caught the PGA championship. (The first biopsy was during the U.S. Open - nothing like a golf nap!)

Dr. C came by late in the afternoon. The cell-count was not back yet, nor were the results of the stains. We'll get that information Monday when I go back to the clinic. The samples had been examined under the microscope and the feeling is that although most of the inflammation is from the BK Virus, there could be an overlay of inflammation from a smoldering rejection. To combat that possibility, he prescribed an increased regimen of steroids over the weekend, going back to normal dosage on Monday.

So, the good news is that my body is not rejecting the kidney despite the drastic reductions in immuno-suppressants. The bad news is that the BKV is still wrecking havoc on the kidney. I expect we'll do another Cidofovir infusion in a couple of weeks, but predicting the future in this BK Battle has been pretty iffy.

But I'll take today's news. I was really nervous and upset going into the test after the disastrous reaction to last week's infusions. I think the frustration and depression came through in the last post.

4:20 finally came around and I was able to get up and out of bed. I got dressed and the nurse rolled me down to street.

And with that, Susan and I headed out for a plate of Nachos and a Margarita to start the weekend!

BK Virus: 8.12

2010-08-12T11:15:00.000-05:00

Went in for a blood draw this morning to see if the creatinine miraculously dropped overnight, but no. It seems that things get suddenly worse more than things get suddenly better.

So I go in for the biopsy tomorrow and find out whether the damaging factor is rejection or BK Virus and to determine the next course of action. It's a tough conundrum. Treat the rejection and the BKV increases. Treat the BKV and the door is open for rejection.

Miraculous improvement not anticipated anytime soon.

BK Virus: Murky Waters

2010-08-11T11:04:00.000-05:00

Another day, another set of labs. Some good news! The creatinine is down a bit: 5.3 from 5.6. Not much, but it's better! Now the question is, "Why?"

Of course the answer is tied to the cause of the increase and we are faced with the same multiple choices as yesterday: 1) reduction in BK Virus, 2) recovery from impact of Cidofovir or 3) recovery from the massive reaction to the immunoglobulin.

And the favorite choice is 3) recovery from the massive reaction to the immunoglobulin. The action plan is to delay the biopsy a day and run another set of labs tomorrow. IF the creatinine falls below 5 the assumption will be that the kidney is recovering from the infusion and we will go into a wait and see mode. If the change is minimal, we'll go ahead with the biopsy.

In addition more meds are being removed from the cocktail. Myfortic was removed in favor of Leflunomide which is mainly used to treat rheumatoid arthritis. It is an immuno-suppressant which is also anti-inflammatory and will help the kidney recover. Two blood pressure drugs were removed and the one remaining was increased. I should start back on a round of Procrit treatment to bring my anemia under control. That's good news. I need more meat and protein to feed the Procrit (aka Epoegen, Epo).

So it's off to work. My other direction was to hydate like crazy to keep fluid flowing through the kidney. But it's good general advice on these August scorchers.

HYDRATE OR DIE!!!!

BK Virus Lands a Crushing Blow!

2010-08-10T14:46:00.000-05:00

Went into the clinic today to see how things fared after last week's infusions. When the dust settled, it became apparent that the creatinine level had jumped to 5.6, a whopping 54% increase over last week's number. Just for reference, normal ranges between 0.3 and 1.1. That sucks!

Now the question is what caused this week's jump. Three options. One, the BK Virus is really ramping up. That was last week's theory and was why we did the infusions last Friday. Two, based on the extreme reaction to the IVIG, it is possible that the IVIG did damage to the kidney. Three, the Cidofovir, itself a noted nephrotoxin, did damage.

The early favorites are the first two options. The BKV was already on a roll as evidenced by last week's numbers. The reaction to the IVIG was so strong and off the charts and it can damage the kidney. The dosage of Cidofovir was very low and controlled and the results are usually stable and predicitable. But really it's anyone's guess.

So now the plan is for me hydrate like fool today and to go to the clinic tomorrow and hope for better results. Assuming the numbers stay the same or continue to worsen, I'm scheduled for another biopsy on Thursday. The small sample of kidney tissue will tell us the nature of the damage to the kidney and give us true cell count of the BKV in the kidney itself.

And then????

I don't wanna think about it.

BK Virus: Having Pressed the Attack, Who Won?

2010-08-10T00:28:00.002-05:00

So I arrived at the hospital, early for my appointment, armed with two new books, ready for a day of various infusions. Check in was smooth, apparently being setup as a serial patient means your paperwork stays done! Good news I guess... if it's good news being here that often. It was a busy day in the morning unit and surgical patients get the priority, so it was a while before the nurse came in to get things going. I should have had a clue about things to come when one of the bags said "Chemotherapy."

First up was a bag of saline to flush and hydrate the system. The nurse set the pump to dispense the bag in an hour and we were underway!

Next on was the Cidofovir, an anti-viral. It was set to drip through in two hours. This is the drug whose prime side effect is damage to the kidney. They kept close tabs on my condition, checking vitals frequently. Everything went smoothly and I was feeling fine.

Lunchtime came along with a turkey sandwich. There was another chair in the room and it was interesting visiting with my roommate and his wife. They'd gotten married when they got out of the Navy after the war and now live near a lake about an hour south of Dallas. They've been in and out of Baylor Hospital many times over the years, first for their children and more recently for his liver transplant, his battle with throat cancer and now his impending battle with lung cancer. He was in receiving two units of blood, his second treatment of transfusions. They've been lucky, she's had good insurance since her first job and doesn't know what they would have done without it. They worry about their son who has a small business with just two or three employees and there's just not enough money to cover the cost of insurance. So the son just does without.

When the Cidofovir was done, they emptied the previous bag of saline then began the IVIG (IntraVenous ImmunoGlobulin) infusion. (IVIG, that's what they call it, those in the know!) Because it was my first treatment, they took it slow, taking about three hours for the infusion. And that was it! They gave me the standard Out-Patient list of symptoms to look out for and I gone. Happy to be walking and stretching and getting the hell out of there.

The aches started about ten minutes from the house. It felt like when you're getting the flu. I was shaking and breathing heavily when I got home and the aching was really starting to hurt. I lay down on the bed hoping things would calm down, but the aching, shaking and breathing just intensified. I was feeling feverish and nauseous. I got up and called the nurse at the clinic and really don't remember much of that conversation. I remember she asked about my temperature. I remember saying that even if I could find a thermometer, I was shaking so hard the chances of getting it in my mouth were about as good as poking it in my eye!

After that clever retort, I headed to back to bed and managed to fall into a deep sleep. I awoke and the phone started to ring (or maybe it was already ringing.) It was Susan, calling from San Antonio, and she caught me at my absolute groggiest. I still hadn't reached the point of rationality. She had the good sense to call my sister who came over and sat with me. The shaking had stopped. I was able to drink some ginger ale and take some pain-reliever. The reaction had reached a plateau.

I thought I felt good enough the next morning to get dressed, scramble an egg and go to work. After wandering around like a zombie for an hour, I decided to go home, much to the relief of my coworkers. The rest of the day was spent with a splitting, throbbing headache which caused its own nausea which lasted through most of the next day. Three days later I almost feel normal.

So, which drug was the culprit?

Poking and googling points to the IVIG therapy. One study shows 83% of the patients reported headaches lasting from 4 hours to several days. Some were considered mild, most were described as having severe intensity with a throbbing, pounding, pulsating quality with some causing fever, nausea and vomiting. Sounds pretty familiar.

So, OK. Why wasn't I prepared?

I thought I'd done my research. But I really focused on the Cidofovir and that was my mistake. But the doctors didn't say anything about possible side effects from either drug. The infusion was under the supervision of a doctor, but all I saw was his/her name. Never had a chance to visit. The handout at discharge was generic and primarily concerned about infection.

Shoulda known better....

BK Virus: 8.04

2010-08-05T01:03:00.001-05:00

Fighting this damn virus is like herding cats. When one number is under control, another goes wacky. The strategy set one week is changed the next week as the numbers change. But the core element of the strategy is to prevent further damage to the grafted kidney, so as the kidney is threatened, there is less patience to let a treatment run a slower course.

It was good news/bad news at the clinic this morning. The cell count was down to 45,000, the lowest concentration of virus since it was first discovered. That's the good news. It could mean the reduction in immuno-suppressants is working and allowing the body to fight the virus. The bad news is that the creatinine level jumped to 3.0 after being level the last two visits. That probably means that the virus is scarring the delicate tissue of the kidney and preventing it from doing its job. It could also mean rejection, but there are no other symptoms, such as high temperature, rapid weight gain, pain in the grafted kidney, nausea and vomiting.

So Friday I'll check into the outpatient clinic at 7 am for a long morning of infusions. Two hours of saline provide a cushion for the infusion of Cidofovir, which is an antiviral whose main use to treat the symptoms of cytomegalovirus infection of the eyes in patients with acquired immune deficiency syndrome (AIDS). CM Virus is in the same family as BK. By all accounts the drug is pretty nasty stuff. Besides virus fightin' Cidofovir also destroys kidneys so the treatment is administered in low, carefully monitored dosages every two weeks. How many weeks? If I thought to ask I forgot the answer.

The Cidofovir will be followed up by an infusion of Gamma globulin which will shore up the stores of antibodies to help the body fight the virus. So after 5-6 hours of hanging around on an IV I'll either go to work or go home. (I'm hoping I feel up to going to work.) I go back to the clinic Tuesday to monitor the kidney function. And find out the next plan of attack.

From all I've read on the Internet, the incidence of BK Virus is a growing problem among renal transplant recipients. No one seems to know why. It is suspected that the main culprit is the increased effectiveness of new, more powerful immuno-suppressant drugs, most notably tacrolimus (Prograf) and myfortic acid (Cell-Cept and Myfortic). But there is still much to be learned. There are no established 'by the book' treatments. Everything is a touch experimental. I mean my situation is that we're using a drug developed to treat a virus that occurs in patients with AIDS that is a nephrotoxin (translation: kidney-poison).

What continues to surprise me is that I had not heard of the virus before I had it. I wrote in earlier blogs some rationale about why my clinic doesn't test for BK Virus, but at this point I have a hard time accepting it. If there is a serum test that can be administered before damage is done to the kidney, it seems it should be done. Once again the emotional logic of the patient runs into the cold logic and established points of view of the medical profession.

BUT.... if I were a new transplant recipient knowing what I know now, I would be asking about BK from day one.

Readers with new transplants, you KNOW who YOU ARE!

A Sentimental Shot

2010-07-25T23:50:00.000-05:00

We finally got new phones today and I now have a way to get images off my phone and into circulation. Which not only means we got 'smart' phones, but plonked down the bucks for data connection...

So, this is a picture of my fistula in action for the last time during my last dialysis treatment the day before my transplant. It was taken around 7 am on a Monday morning. We had received the call about 4 hours earlier and had made the decision and wandered around the hospital in the wee hours before we finally found the outpatient lab for the final blood draws to confirm the match.

I would have used the photo on the blog, if it had been available at the time. When I posted about my first dialysis treatments I had to google-search images to use as illustrations.

So, this is a sentimental photo and a sentimental post.

Things seem OK on the BKV front. Blood pressure seems to be more controlled now that the virus count is not so high. I'll get my new lower dose myfortic tabs Monday or Tuesday which will give me about a week at the full lower immuno-suppressant dosage before the next blood draw.

BK Virus: 7.21

2010-07-21T11:16:00.003-05:00

And now for this week's BK Virus Update.

Started Monday morning with a trip to Baylor for a blood draw to check the viral cell count. Which is to say it started with aggravation. Checking in for the lab work (just a needle stick and 1 vial of blood) took an hour and a half. The check in was the same as checking in to the hospital, only just one woman seemed to be working. Maybe others were on vacation. Sign countless consent forms, get a bracelet, the whole nine yards. It wasn't like I hadn't this just two weeks ago and had a biopsy done two weeks before that all over the same diagnosis...

The good news is that I am now checked in for a series of tests (I guess that makes me a serial patient.) When I check in at the desk, they should give me a copy of my orders and a bracelet right there at the gitgo and off I go dancing down the hall to the lab. We'll see if that works.

So today I went to the Transplant Clinic for the rest of the story.

The best news was that the creatinine did not go up. It's been stable the last three visits at 2.7, 2.6 and 2.7. There was little expectation that it would go down, there was fear that it would go up. It stayed flat, so that means we can concentrate on the virus.

The viral cell count went up. From the initial count of 497,000 copies of the cell, the first reduction of immuno-suppressants combined with a dose of ciproflaxcin dropped the count to 73,000. This week, two weeks after the cipro treatment stopped, the count has risen up to 156,000. The suspicion is that the cipro reduced the count to below the 'new' normal level with just reduced immuno-suppressants. What we don't know is what the new baseline count should be. We'll know a little more about that next time.

So, what's the next step?

There's a little more room to play with the immuno-suppressants, so that's what Dr. Melton wants to do next. We're cutting the Prograf by 25% and cutting the Myfortic another 50%. If the kidney had been a 6 antigen match, there would have been even more room to play, but it's been 21 months since the transplant and no sign of any rejection, so he feels comfortable with the reduction.

And we check everything again in two weeks. Hopefully the creatine will remain stable and the BK cell counts will start going down. If not, he will probably begin treatment with cidofovir. Cidofovir is an antiviral agent developed as treatment for AIDS. Its drawback is its nephrotoxicity. So it is carefully administered in low-dosage to renal transplant patients fighting the BKV. It is infused via IV over several hours in a hospital on an out-patient basis. Once a week for several weeks.

So that's the news for today. Time to stop here, get dressed and get to work!

Added later that afternoon.

Janet just called from the clinic. My prograf level was up today, so they're cutting my dosage by 50% instead of 25%. All these numbers and levels and dosages. Just watching the gauges and making the adjustments to keep everything in balance!

BK Status: Holding Steady

2010-07-14T10:19:00.000-05:00

Just back from the clinic. This morning's lab results are very consistent with the results a couple of days ago. Creatinine is 2.6 today versus 2.7. All other numbers are very consistent. Red blood count and hemoglobin are still just a hair low, just as they have been for the last month.

The action plan for now is just to hold steady. The thinking is that if the creatinine level holds, we can concentrate on controlling the virus.

So I'll continue to stay hydrated and keep my fingers crossed and we'll do it all over again next week. Blood draw next Monday at Baylor to check the serum BKV count and follow up appointment at the clinic next Wednesday to check results.

Until then, have a great week!

Back from Vacation, Time to Recheck the Virus!

2010-07-14T00:18:00.000-05:00

So we made it back from vacation. Successfully, albeit in retreat.

Susan's been fighting toothaches for longer than she likes to remember and it really flared hours before we were to hit the road. So of course we went anyway. (She had seen the dentist and had an appointment with an endodontist for when we returned, it's not like the problem had been ignored.) To make a long story short, she obtained antibiotics and pain meds which helped, but instead of going on to the Great Salt Lake, we made the retreat back to Big D, where she immediately had two root canals.

And while she was having her morning in the dental chair, I wound my way through the maze that is Baylor Hospital, found the outpatient lab where they drew blood samples to check the serum BK Virus cell count. Yesterday I went to Dallas Transplant for the usual drill: labs and a check-up.

Good news bad news. The Ciproflaxcin really knocked down the serum cell count of the virus (That is the cell count in the blood). From close to 500,000 to 73,000. Normally the follow up here would be to wait and see if the reduced immuno levels would allow the body's antibodies to fight the virus before moving onto anti-viral infusion. Except that my creatinine took a stiff increase, from 2.0 to 2.7 (normal is under 1.1.) OUCH.

Information note: Creatinine is waste product from the muscles that the kidney clears from the blood. It is quick and easy to measure with a blood sample, so it is the most common measure of kidney function. It is not totally accurate as the appropriate creatinine level varies according to mass, body type and fat, age and even race. When put through a complex formula that's over my head, it becomes the Glomular Filtration Rate which is a much more accurate gauge of kidney function. But because of the ease and low cost of the test, measuring creatinine is the most common measure. And mine, which was high, just went higher.

So, what's next? I go in tomorrow for a recheck. Maybe I was dehydrated, maybe this, maybe that. A number of alternatives were floated that would have produced the elevated creatinine. They sounded like pie-in-the-sky to me.

Bottom line: I go in for a recheck. If it's down, we'll go into a 'wait-and-see' mode or go to the anti-viral. If it's up, it's back to the hospital for another biopsy. What would the biopsy show? Possible rejection due to the reduction of immuno suppressants. Possibly the Cipro knocked down the BKV in the blood, but the virus count is still high in the kidney. And possibly damage to the kidney by the BKV.

And yes, it is depressing to be back in this murky medical malaise. And then I remember. The last four years of dialysis and transplant have been such a blessing. Stoppage. Extra time.

Stay tuned!

On Vacation with a Little Perspective

2010-06-28T11:47:00.002-05:00

Life is always different when you look at it from Santa Fe. The clear air gives clarity to thought raising questions like, "What did I do in a previous life that means I live in Dallas rather than Santa Fe." Ok, ok. maybe it was something done or not done previously in this life, but that gets depressing real quick.

And BK Virus is not quite so depressing as it was a week ago. Life is really not any different. I don't feel different. I did find a blog that helped quite a bit. You'll find a link to it just to the right of this post. Chronic Positivity - Life with Polycystic Kidney Disease. Jeff is a nurse, his writing gets a little involved with lab numbers and such, but his judgement is sound. He battled PKD for a number of years and is two years post-transplant. He was diagnosed with BKV last summer and has been treating it for the last year and is now hopefully on a final round of antiviral.

I gained two things from Jeff's blog. The first is the surprising efficacy of Ciproflaxcin as an antiviral. It really knocked down the cell count of the virus. I'm going into the seventh day of treatment, Blood samples will be drawn next week and we'll have results a few days after that.

The second thing was that his clinic tests for BK Virus without waiting for symptoms. His creatinine level was 1.1. upon discovery, with the normal range of kidney function. Mine was 2.2, high, not alarming, but definitely showing a decrease in kidney function. My current feeling is that I would rather have been able to begin treatment earlier. I'll discuss this with Dr. Nesser on the next appointment and report in my next post.

Until then, I'm on vacation in Santa Fe and heading for the slick rock canyons of Utah and then on to the Great Salt Lake. Right now it's lunchtime and I'm thinking about a bowl of green chili stew.

BK Virus Day 6

2010-06-21T19:16:00.001-05:00

So after hitting the clinic 3 times in the last three months, it's been 3 times in the last 6 days. Plus a day in the Outpatient Clinic at Baylor Hospital. Combined with the broken foot, the medical front is getting intense again.

A little good news for a change! Creatinine was down to 2.0 from 2.2. Don't know if it means anything, but it sure beats another increase. Everything else was in the normal range except the red blood numbers are a little low. So I need to eat more steak and creamed spinach, I can do that!

Had an interesting conversation on the suject with Dr. Nesser, he's the director of the Dallas Transplant Institute (DTI) clinic. (Dr. Melton, who performed the biopsy and met with me in the hospital is the head Nephrologist for the Baylor Transplant Program.) Dr. Nesser correctly assumed that I had been googling BKV over the weekend and was curious as to what I had learned. Evidently I passed the test and was relieved to find out that the information that I've propagated in the blog has been correct.

One point of clarification. Acquisition of the virus is usually accompanied by a mild cold after which antibodies are formed and the virus retreats to the urinary tract where it lies dormant until allowed to become active again by a round of immuno-suppressants. Thus BKV occurs mainly in kidney transplant patients and occasionally in HIV patients and bone marrow transplant recipients.

When researching it is important to look only at the most current studies. The field of inquiry is young and studies are usually limited to individual transplant clinics, so sample sizes are very small. Different clinics follow slightly different protocols, but results are about the same. For instance Dr. Nesser told me of a clinic that tests all patients regularly for BKV starting soon after transplant. Dallas Transplant Institute (my clinic) waits until the creatinine starts to increase to start testing. The early testing sounds like a good idea, but it's a lot more expensive and has not produced improved results. Bloodwork is a good indicator and works for measuring progress, but diagnosis can only be confirmed by a biopsy.

So for now I will be following Dr. Melton's course of treatment. He cut back my dosages of prednisone and Myfortic and left the Prograf intact for now. Dr. Nesser said that occasionally a mild urinary tract infection can aggravate the virus so he prescribed a regimen of an antibiotic to eliminate any possible infection.

We're heading out on the road to Santa Fe and Salt Lake City at the end of the week. When I get back I'll go the Outpatient Lab at Baylor for a blood draw and then a few days later (three weeks from today) I go back to the Dallas Transplant for another checkup and we will know if any progress has been made.

So. Everyone's up to date!

Father's Day: in a Reflective Mode

2010-06-20T21:10:00.000-05:00

Enjoying a peaceful Father's Day. No one here but myself. Michael called from his backyard in Santa Fe, enjoying their garden. While we talked he was watching a huge black and yellow butterfly flit about three feet in front of him. It's blazing hot in Dallas today. That butterfly would spontaneously self-combust if it were here. Susan's at the Natural History Museum in New York. Travis is working on his Math dissertation at his apartment in Brooklyn. They're meeting up with friends for dinner somewhere in New York. I'm drinking a beer and flipping between the Open at Pebble Beach, the World Cup and a baseball game.

And thinking about the last couple of weeks.

Heard talk on the radio the other day about how it was 16 years since the big OJ Simpson chase across Los Angeles. I remember that well. We watched it from a New York City hotel room while the family was on a choir trip. It was on that trip that I discovered I had super high blood pressure and PKD began to have a dramatic affect on my life. Up until then I had thought of my life as normal.

I went back and read all my postings on this blog last night and after I got over the many minor edits and the goofy spacing Google Blogger puts between paragraphs that have to be deleted to make it look halfway decent, I decided I rather liked a lot of the things I said. I really did give short shrift to the time spent on dialysis and I need to work on that. When I've tried to write on dialysis it always turns into informational reporting. Which would be good except that I'm just drawing on information that's already out there on the web. There's a gillion web sites, doctors, nurses, dieticians, handouts and posters that tell why it's a bad idea to eat foods high in potassium and things like that. My writing is at its best when the information comes from personal experience, and that's been difficult.

But what really stood out was the period of denial and uncertainty when I was fighting a tendonitis of the achilles which wouldn't heal because of the aggravated swelling caused by the chronic kidney disease. I limped around in a walking boot for months in a state of constant pain and exhaustion. The future of dialysis and transplant was dark, murky and uncertain.

Now I've been limping for a couple of weeks. It was something of a relief to find out that the cause is a broken bone which has a finite period of healing. The BK Virus is another thing. It's a threat to the graft and the treatment is filled with uncertainty. Treatment is more successful than it used to be, but it's nowhere near 100%.

The combination of the limp and the virus creates a veil of depression and the temptation is to succumb. To some degree I have over the last few days. It shows when I step on the scales in the morning. But to yield to depression is the easy path. I have to remember that I've been living in open ended stoppage time for the last three and a half years. Each setback has to be a path to a new well of strength.

Well, I guess the blog just got personal again.

It's Not a Rejection (But why don't I feel better?)

2010-06-19T01:10:00.001-05:00

When I was a salesman, I hated making cold calls. I dreaded rejection. When I was a young man, I hated calling girls for dates. I dreaded rejection. In fact I still don't like making phone calls. Fear of rejection runs deep.

And now I live in Post-Transplant land and rejection has a whole new meaning.

The subtext of growing up in the 50's and 60's was the over-arching fear of nuclear war. In Post-Transplant land the subtext is fear of graft rejection. The walls of the Transplant Clinic are plastered with the signs of rejection: clammy hands, cold sweat, squeaky voice, stammering... No No NO! Stay focused. Repeat after me, "The signs of graft rejection are: pain in the area of the new organ, slight fever, decreased urine, rapid weight gain. If you notice these symptoms, Call the Clinic!"

Whatever the symptoms, all signs are ultimately confirmed by lab reports which show increased levels of creatinine in the blood. Which means the kidney ain't workin' as good as it should. So that was me, getting my labs back on Tuesday with creatinine level up to 2.2 (Normal is 0.2 to 1.2) The elevated result was confirmed by Thursday's labs.

And that was me, walking into the hospital early Friday morning for a Kidney Biopsy. A small amount of kidney tissue is removed which will tell the nephrologist exactly what's going on in the kidney so the doctor can make the proper diagnosis and prescribe the proper courses of treatment.

The procedure sounds a lot worse than it really is. A long needle with a grabber attachment is inserted into the kidney. It grabs a tissue sample which is removed. A local anesthetic is used to deaden the area. A sonogram is used to guide the procedure. Tension is way worse than the pain. I was alarmed and startled twice. First, when the tech asked for a Spinal Needle. (Yikes! I've heard horror stories about such things.) Second, when the doctor activated the grabber. It was very sudden, very loud and visceral. SNAPCLICK! And then it was over. Very quick and routine. I was not the first kidney biopsy nor the last for the lab today. I think they did four, back to back. All transplanted kidneys. (The photo is from the Columbia University fact sheet kidney biopsy patients.)

Then it was back to my room where I had to stay flat on my back for four hours, or until the blood cleared from my urine. (Bleeding issues are the most frequent and serious complication of the procedure.) I never did show any blood in the urine. By all means, schedule this procedure during World Cup and the US Open, especially if it's at Pebble Beach. Just me and the TV. Laid out with no interruptions except for the occasional nurse. Father's Day should be so good.

Dr. Melton came by late in the afternoon to discuss the findings. I sell wine, he buys wine. I'm always a lot more comfortable when our conversations are on my turf.

First the good news. He doesn't think it's rejection. (Eyes close. I enjoy a small smile while tension flows from my body.) Reality wakes me up. What's driving the loss of kidney function?

And the bad news. Have you ever heard of BK Virus? Neither had I. Well, it's pretty widespread. 80% of the population has it, but natural resistance is developed at an early age. It was first isolated in the urine of a post-renal transplant patient named B.K. in 1971. The use of immuno-suppressants as anti-rejection medications allows the virus to become active. And there's a special something that allows it to be especially active in renal transplant patients. It's always difficult to read these papers, but it looks like the virus becomes active in a relatively smallish percentage of patients and actually causes renal failure in a smallish percentage of the affected group. The virus can cause scarring of tissue throughout the urinary tract and in the kidney itself and can lead to kidney failure.

Hmm. Sounds like the same number games I encountered when I started learning about PKD. ONLY a smallish percentage of a smallish percentage are chosen. So, not only am I not rejected, I'm also a winner! Only being a winner with PKD and BKV is an extremely dubious distinction.

So, what can they do about BK Virus? Well, the problem is that it's a virus..... Everyone knows you can't treat a virus.

The first step is to reduce the dosage of immuno-suppressants. The goal is to fine tune the dosage level to prevent rejection, but allow the body's natural defenses to work. Dr. Melton game me instructions and I started with tonight's meds. Frequency of labs will be increased so we can monitor the effect. There are anti-viral medications that can be used down the line, but they have their own issues. The most desirable goal will be to find a dosage that will keep all factors in balance.

No one said it was easy. The last year of relatively carefree existence sure was sweet!

Fear of Rejection, More than Just a 'No'

2010-06-17T15:49:00.000-05:00

Hello again. Seems like life's been real normal lately. The weeks have their routine and seem to slip by ever so quickly. It's been a long time since I went eight months with only 3 doctor visits.

Until a couple of weeks ago. I somehow hurt my foot moving case stacks of wine around the store. After a couple of days of limping through increasing pain I waved the white flag and sought medical attention. The doc at the 'urgent care clinic' noted my history of ESRD and and said she would look closely for a fracture due to the possibility of ESRD related osteoperosis. After the X-ray she said there was nought but contusion, gave me an ankle brace and said to take two tylenol and come back the following week.

Skip forward a couple of weeks to my three month check up at the Transplant Clinic. It was time for my annual bone density scan which showed that my bone density has actually increased over the last year (4% in the hip bones!) So much for notions of osteoperosis.

The doctor wanted to x-ray the foot to make sure the swelling was injury related and not kidney-related edema and sure enough, there was a small fracture in the first metatarsal. Which didn't come as a surprise since the foot was still painful and extremely resentful of being strapped into a shoe! (In defense of the first doctor, the foot was really swollen and the fracture is tiny which no doubt made it difficult to read the x-ray.)

But of much more serious concern was the elevation of creatinine in the blood. It was up three months ago and mo' up on this visit. Tested twice, with consistent results. (For the record 1.7 in March, 2.2 in June.) A sonogram test this week showed good blood flow through the kidney. There was a thought that I might be slightly dehydrated, so I drank gallons over the next couple of days before labs today. But the results showed no change.

So, tomorrow the fun starts. I check into the outpatient lab for a biopsy of the kidney to see just what's going on. The biopsy is taken with a large needle guided by the light of the sonogram under a local anesthetic. I'll be held for a few hours to make sure there's no bleeding and then be released in the afternoon. The treatment plan will be determined by what the biopsy reveals. Apparently different types of rejection show different types of cell structure. For information (and photos!) follow this link.

So, that's the up-to-the-minute situation. Will post as soon as I know something new!

PKD and 'Fistular' Responsiblity

2010-04-03T00:06:00.004-05:00

My fistula was created in my arm by a vascular surgeon about six months before I began dialysis. That's the minimum time needed for the fistula to grow large enough to carry the volume of blood required for dialysis. Mine was a 'baby' and hitting it with a needle was complicated by the fact that my veins run deep in my arms. Whenever a new 'patient tech' had to stick me, it frequently required several sticks and help from the nurses to set the needles so the blood would flow smoothly.

I did have a complication. The 'aneurysm' was building in two spots and the vein wasn't expanding between them. The flow was poor and the machine couldn't run at the proper speeds. A second 'day' surgery was required. The surgeon did the repair leaving me with two 2" scars running perpendicular to the fistula. Each scar has 8 very neat stitches. Right below the wrist. Very Frankenstein. Very successful. Ease and quality of treatment were greatly improved.

Readers of the blog might remember that my struggles with PKD and Chronic Kidney Failure were largely characterized by a spectacular run of denial. My nephrologist had advised having the fistula surgery over a year and a half before I had it done, but I ignored his advice.

But what if my kidney had failed during this time of denial? Dialysis cannot take place without an access. Needles cannot reach blood veins large enough to handle the flow. Ports are surgically installed under the collar bone that allow permanent access to main trunk arteries. The same ports are used for other therapies requiring the repeated infusions of large amounts of fluid. Chemotherapy is probably the most common.

So if at any time during that year and a half, my kidney had failed (remember, I was down to one at this point) and I entered the emergency room with acute kidney failure, I would have had to undergo surgery before receiving the life-saving dialysis treatment. I think this path is extremely common. I don't remember seeing any first-time patients at my dialysis clinic who didn't receive their dialysis through a port.

That's one of the relative blessings of PKD. There is usually plenty of warning. Diagnosis should come long before the need for dialysis. If you have PKD, how did you find out? Have your kidneys failed? How long did you battle PKD before it won out?

My diagnosis came during an episode of kidney stones ten years before my first kidney was removed and twenty years before my transplant. During that time my blood pressure skyrocketed, largely due to PKD. An acute bout with flank pain led to the first nephrectomy. Pressure from the large size of the kidney cut off urine flow in my ureter causing renal failure. A stent restored urine flow and kidney function. All these episodes were clues, but I still didn't believe my kidney's would fail. There's a lesson here....

Acute flank and abdominal pain took my son by surprise a while back. He blamed a famous fast food chain's new Angus burger, but the big surprise came from the emergency room doctor, "Have you ever heard of Polycystic Kidney Disease?"

He is still young and hopefully has many years before the possibilities of renal failure, dialysis and transplant complicate his life. But he can be under long term care. Routine blood work will let him and his doctors know how his kidneys are functioning and let him know when it's time to start taking things more seriously.

I can only hope that he's more responsible about managing his disease than I was.

My Fistula, My Constant Reminder

2010-03-28T19:51:00.001-05:00

My fistula is my constant reminder that transplant is treatment, not a cure.

It's still alive to the touch and buzzes with the flow of blood. The technical term is the "thrill." Even though a year and a half have passed since my last dialysis, my fistula never lets me forget. It started aching a while back and seemed to grow weak, but renewed flexing and exercising the forearm have brought it back and I think it's even stronger now than it was. I can feel its presence almost up to my elbow. In quiet moments, I find myself running my fingers over the vein, feeling life pulsing through my arm. A touch-point.

The fistula is the access for dialysis needles, created by joining a high pressure artery and a low pressure vein. The veins are chosen for their relative pressure and proximity to the surface to facilitate ease of the sticks. Mine is in my left fore-arm just above (below?) the wrist. It originally diverted about 50% of the blood going to my hand and turned it right around back to the heart. Like in Star-Trek when they looped an orbit around the sun to pickup speed, it's designed to carry huge volumes of traffic at high-speeds. During treatments, the needles were placed in different locations over the 6" span. The main access points are raised over the normal surface of the arm and are visibly prominent. The aneurysms of most fistulas are much larger than mine. My veins run deep in my arm which made life difficult when needles were placed by someone not familiar with my access.

A rejection episode could begin tomorrow, next week, next month or next year. Rejections are usually treated by adjustments to medications made in a hospital under close observation. But if the graft kidney should fail, dialysis is always there as a life-saving alternative.

The darned thing can keep me awake at night if the fistula is in contact with a pillow or the mattress. The pulse is so strong that it resonates through the bedding and vibrates in my ear. Loud and demanding. Not unlike a jackhammer or a bad hangover.

But, I adjust. It's my lifeline.

Hello Blog. It's Me Again...

2010-03-25T11:32:00.002-05:00

Hello Blog, it's me again. Do you remember me?

It's been a while. I've read my last post a number of times and each time I'm surprised at how final it seems. It wasn't really my intention, but the muse has been difficult to find. The story reached premature catharthis last fall with my involvement in the National Health Care Debate (CNN did call Sunday afternoon when it looked like the vote was going through. They were tentatively going back to people interviewed in the fall for reaction, but decided to go in a different direction.) And of course the story reached its culmination and emotional peak at the first anniversary of my transplant.

That's when the blog started drifting. I tried going back to the story of dialysis, but that was becoming a series of lectures on dialysis and that's not how I want the blog to read.

Today is a cool, damp spring morning in Dallas. We had 5" of snow Sunday, two warm, sunny, glorious Spring days and then a day of intense thunderstorms. I just returned from a brisk walk which followed a session of tai-chi in the ump-teenth time I have tried to resume regular exercise. I really need to now. I've put on too much weight and my blood pressure is rising. Two things that really mess up kidneys. (At least PKD is no longer a concern!)

Since the anniversary of the transplant, I have really relaxed and have just tried to enjoy a normal life. I feel great, my energy is good. I can work long days without getting exhausted. I notice the difference singing in the choir at church. I can reach both higher and lower notes and sing with more volume and intensity. Not always a good thing, I have noticed a higher correlation between my mistakes and the stoppage of rehearsal! I didn't worry too much about weight during the fall and put on a few pounds. Then the battery on my bathroom scale died in the middle of December and I put on more than a few pounds!

While on my walk this morning my thoughts went back to the one time in my life when I really paid attention to exercise and diet and that was during dialysis. The secret to not being devasted by the treatments is to put on as little weight as possible between treatments. It's difficult because the kidneys are not removing excess fluid and that's especially true if both kidneys have been remvoed! But the less weight ones gains, the less fluid has to be removed during dialysis. Believe me, the recovery from treatment is much easier!

I became obsessive about exercise, weight, and blood pressure. I kept a daily spreadsheet which tracked everything, down to daily, weekly and overall percentages of changes. I would walk as often as possible, increasing distances and even starting running. If you've known me all my life, you would realize how radical this behavior was!

When I started dialysis, I needed to lose 15-20 pounds to be considered for transplant. I had lost 35 by the time of transplant and was in the best physical condition of my mature life. Except for the fact that I had no kidneys and without dialysis I would have been dead!

So need to return to the good life. Diet does not need to be as strict, but it needs to be controlled. Exercise needs to happen. And now, after entering my vitals on my spread sheet, a session of tai-chi and a brisk walk, it's time for a little breakfast, a shower and off to work!

Community and Support

2010-02-20T07:57:00.000-06:00

I was in a seminar a couple of weeks ago on utilizing blogs and social networking as tools for selling wine. On the panel of experts was one of the first (and still one of the best) winebloggers Alder Yarrow who writes Vinography: A Wine Blog. The question was how can you tell whether the blog is 'for real'. He said to watch out if the first sentence is "I'm sorry I haven't posted recently but...."

OOPS!!

A little guilty here!

I did want to thank Sean and Amy for their kind comments after my last posting. It made me feel that the blog was worthwhile in the greater world, which is not something I expected when I started writing.

I started writing for myself. I was thinking about PKD and the miracles of dialysis and tranplant constantly and needed a personal outlet. The telling turned out to be struggle, untangling the tangled time line of memories, looking through insurance records and even the boys' graduation diplomas to confim dates.

I had no connection, no support throughout the early years of the onset of PKD. That was wayback before the discovery of the Blogo-sphere and the Internet had little to offer other than many pages with the same basic information. I gained ESRD support and connection through my dialysis community that gathered every Monday-Wednesday-Friday at 5 in the morning. While we visited some, we mainly napped. The Facebook connection that Amy had made while I was receiving my transplant was the first contact I had ever had with someone else who was struggling with PKD.

And so, through 'social networking' our little community has expanded.

I thank everyone who is part of it for sharing my experience and above all, I thank you for sharing yours.

Love to you all.

Transplant Convergence Continues

2010-01-26T05:50:00.000-06:00

The January 2010 transplant continues as three people I have 'met' since beginning to blog on PKD are receiving living donor transplants this month.

Sean Hoefling (Living with PKD) had his transplant early in January and is doing great and already going back to work. He's had some issues with Potassium levels but that seems to be working out. Diet is way less restrictive than with dialysis, but it is still very important. The thinking is, if it is difficult for the kidney to process or maintain proper levels, then help the kidney out by watching what you eat.

His brother Bruce (pkd sucks) is not having such an easy go. There were unusual complications with blood flow to the kidney which required a second surgery, a longer stay in ICU and now 'sleepy kidney syndrome'. He is producing urine, but they are waiting for the creatinine to start going down. Bruce just doesn't seem to go down the easiest path! Everything, from PKD to dialysis and now to transplant has been extremely difficult. As difficult as my path seemed, I almost feel guilty about how easy it was compared to what Bruce, Amy and their family has been through.

Neal Branson ("...in sickness and in health...") and Candy (his donor and co-worker) are in surgery this morning. A local news outlet did a great story which you can see here (Deputy's Kidney Fight). The surguries should be starting soon.

These are all miracles of people donating living parts of their flesh, blood and bodies to give another the gift of life. Please keep them all in your prayers.

Dialysis: Learning to Adjust

2010-01-13T00:19:00.000-06:00

So it turned out that adjusting to the reality of dialysis was the easiest adjustment to make. The reality of dialysis involves more than just adapting life to a new schedule. It involves a total surrender of lifestyle to the demands of treatment. Weight control, fluid intake restrictions, diet restrictions are just a few of the new issues that dominate life with dialysis. The driving goal in life becomes getting good lab results.

The most important issue is managing weight gain between treatments. A treatment removes a minimum of 1.8 kilograms of fluid waste and a maximum of 6.0 kilograms. The waste includes excess water that is normally removed by the kidneys along with various waste materials produced in the body. Each patient is assigned at 'dry' weight and the goal of each treatment is to remove the necessary amount of fluid to reach that weight.

So the first thing a patient does when called to the treatment area is step on a scale and relay the weight to the patient care technician who then subtracts the 'dry' weight from the actual weight. The difference is the amount of fluid to be removed.

In my case, I'm a big guy. My dry weight when I started dialysis was 115 kg. If I weighed 120 kg. when I arrived, the treatment would have to remove 5 kg. That's 11 pounds for you non-metric folks! AND that's a LOT of fluid to pull out of a body! The results of taking off that much fluid are headaches, nausea, cramping and loss of blood pressure, any one of which can cause the machine to be set on minimum, which means that the job of blood cleaning is not getting done.

Thus the most important goal between treatments is weight control. The easiest way to put on weight if your kidneys aren't working is to consume fluid, so fluid intake should be restricted to one quart per day, 32 ounces, 4 - 8 oz glasses of water. I repeat, restricted to one quart combined of any liquid: water, tea, coffee, gravy, soup, ice cream, hot sauce, popsicles, not to mention beer, which has so many other things that cause problems with dialysis that it's totally out of the question. Well, out of the question if effective dialysis treatments that don't cause illness are the goal.

Unfortunately, the amount of food consumed impacts weight gain as well. (Is that really true??? DAMN!!!) That leads to the question of which foods contribute to more successful treatments and which ones don't. Now the path leads to chemistry of nutrition and things really get complicated.

And that's a story for another night.

Transplant Convergence

2009-12-30T02:10:00.001-06:00

Sean Hoefling, the first of three online friends scheduled for donor transplants received his transplant today! All went well, the donor is doing great and Sean is resting in ICU. Jeremy, his donor, came to Nashville prior to the surgeries and spent time with the Hoeflings over Christmas.

Sean's brother Bruce is scheduled for January 14 and Neil Branson is confirmed for January 26. We have been connected through blogs and Facebook for the last several months and I can't tell you how exciting it is to see receive treatment through transplant after their struggles with PKD.

I apologize for the lack of posts during the last few weeks. It's a demanding task keeping folks supplied with enough beverage to celebrate the holidays. Long days, no days off, and then I have to celebrate with my family in the precious time not spent on the job.

When life calms down, I'll begin to document the ups and downs of my experience with dialysis and the transplant application process.

Happy New Year to All!

Dialysis: Starting a New Routine

2009-12-16T00:18:00.002-06:00

I had finally leaped the big hurdle and started dialysis. After years of denial, dread, and refusal to look at the inevitable future, the treatments had started and for the first time in years, I actually felt better. Even after just four treatments, my creatinine was lower than it had been ten years earlier, when I had my first PKD crisis and my left kidney had been removed.

(Creatinine)

My second week of dialysis started with the same schedule I would keep for the next two years. I was lucky to get on the first shift, so my scheduled treatment was at 6 am. My days were Monday, Wednesday and Friday. I am the director of the wine department of one the largest wine and liquor stores in the DFW area, so I was able to tailor my work schedule to my dialysis schedule. Wednesday's would be my day off, with a choir practice in the evening. I would go to work on Monday's and Friday's after dialysis (and some recovery time) work a closing shift. It was really quite a busy schedule! 45 hours of work, 15 hours at the dialysis center, and 4 hours of choir at church.

But I proceeded to keep the same strategy that I used to deal with kidney disease. If I would just ignore the pain and keep on keeping on, everything would work out in the end. And so far I guess it has!

Back to Work: Life Begins with Dialaysis

2009-12-14T09:35:00.000-06:00

So on Thursday, November 9, 2006 I went back to work after three days of hospital supervised dialysis. I felt great, energy was good and the dark clouds of fear surrounding the great unknown had been dispersed. My left arm around the fistula was a mess, though. It was swollen, purple and had over 20 holes where the nurses had been unable to hit the mainline.

Friday was the day of my first appointment at the dialysis center. I expected to go in, dialyze for a few hours and then head in to work. As ususual, my expectations were ill informed and a little naive! A long meeting with the Director accompanied by reams of forms and releases was followed by a long exam by the center's nephrologist and then more meetings with the dietician and social worker.

Finally in the early afternoon I was shown into the lab. The patient technician's and shift nurses were super friendly and supportive and would become good friends over the next two years. The nephrologist had shown concern over my fistula and Fe, the queen of the needles was brought over to place the needles and, working slowly and carefully, she slipped them right in on the first try. My chair was next to a window and I basked in the warm late afternoon sun. I did have some cramping toward the end of the treatment, but got in the full four hours.

By the end of the treatment, I had been at the center 6 hours, had not had lunch and I was exhausted. I called the store and said, "See ya' tomorrow" and headed home.

Dialysis: The Third Day

2009-12-10T13:06:00.004-06:00

The third and last day of hospital supervised dialysis began three years ago with a very sore and swollen left arm. My veins run deep and the fistula was not fully formed. My forearm resembled a pincushion from all the failed attempts to stick the needles into the fistula. (The needles were approximately the size of a four penny nail!)

I was wheeled into the lab early in the morning and the sticking was no easier. The head nurse campaigned with my nephrologist to install a catheter, that there would be no way the technicians at the dialysis centers would be able to hit the vein. Dr. Rinner examined my arm, squeezed it and said the fistula felt just fine. He looked at the direction she had been sticking and suggested that she angle to the right. She hit it right away. This would be a continuing theme over the next two years. I got a full treatment and it went smoothly.

So other than needle problems, my first days of dialysis had gone extremely well. I was delighted to be feeling so much better. In fact, I was wondering why I had been so resistant for so long. Of course my life was severely changed. I had spent the days in the hospital reading reams of information on the need to restrict fluid intake (a major handicap in the wine business!) and severe dietary restrictions. And I could never stray too far from my new friend for life the dialysis machine.

Now we can start the tales of miscommunication and confusion that seems to be part of the American standard of health care. I was through with three successful days of dialysis and was ready for discharge. Except that the social worker who was supposed to have been working on arrangements with a dialysis center for my future treatments didn't get started until the last minute. So instead of being discharged, I sat in my room and waited, incurring another day's charge on the hospital bill.

Finally she came in with arrangements and schedules and I called Susan to come pick me up. Then the social worker called back and said my insurance wouldn't cover the treatment. I told her that was wrong, I had their approval letter with me. It turned out that she made arrangements with a center that is not on my insurance's approved list. Nice. She went back to work. Susan showed up and we both had a warm nap in the sunlit room.

Eventually the social worker called and asked if a Monday-Wednesday-Friday schedule at 7am would be acceptable. I said that would be perfect. Which it was! The center was about a mile from the house. I would be able to keep working full time by working closing shifts on Monday and Friday. I could take my day off on Wednesday and be able to go to choir rehearsal on Wednesday evenings. My first appointment at the dialysis center would be the next Friday at 11 in the morning.

Dialysis: The Second Day

2009-12-09T10:27:00.002-06:00

Much to my great surprise the first day of dialysis did not instantly transform my life into eternal darkness and despair. Instead I actually felt better! I took a nap when I got back to the room and when I awoke, I felt great. Went for a walk under the trees outside the hospital in the crisp November afternoon, did some more tai-chi and went back to the room and read. Susan came by for dinner, we no doubt watched some Law and Order in as normal as semblance of real life as can be managed in a hospital room. The hospital was relatively quiet. I had a semi-private room, but was the sole occupant!

The second day started with the usual round of vital signs and blood draws and an earlier than expected trip to the dialysis lab. Things didn't go so smoothly this time. Some swelling around my relatively immature fistula made it difficult to find the vein. Ouch. I can't remember how many sticks it took to hit the mainline. They couldn't hit it sideways. After a number of tries, the nurse called her supervisor in to try. After a few more sticks, she finally hit it. The session went three hours this time. The flow was iffy and the machine kept shutting down. Staying still was imperative. Reading a book one handed lying flat on your back and keeping still is impossible. The tv's were on Good Morning America. Nerves prevented sleep. Three hourse seemed like six and I was happy to get back to my room. Now the future did not seem so bright, having to repeat this three times a week for the rest of my life.

Dialysis: Life Begins Anew

2009-12-07T10:10:00.002-06:00

To recap, I entered the hospital the morning of November 6, 2006 to begin dialysis. It was a crisp cool day with blue skies and I walked in by myself instead of being wheeled into the emergency room in a wheel chair. The doctors like to start dialysis treatments in a hospital so that everything can be closely monitored. I checked in and waited in my room for things to get going. I had a book and did tai-chi to relax. My arm was shaved and after a bit I was wheeled down to the dialysis lab.

Two of the biggest needles I have ever seen were inserted into the baby fistula in my arm and for the next two hours, my blood was circulated and recirculated through the dialysis machine where excess fluid was removed along with urea, creatinine, other waste products which diffuse into the dialysis solution.

I had to lie very still and keep my left arm absolutely stationary. The needles tend to float and fluctuate in the currents of the blood flow. When the open end touches the wall of the vein, the flow slows and the machine shuts down. Flow rate is everything. Blood pressure is monitored very closely. The cuff stays on throughout treatment and the dialysis machine checks pressure at regular intervals. The whole process went smoothly and was closely monitored by my nephrologist and the nurses. The needles were removed, my arm was bandaged and I was wheeled back to my room.

After a short nap I awoke and felt fine. Outside it was still a beautiful fall day. After months and years dreading this day, everything seemed calm and relaxed in a very surreal way.

Thanksgiving

2009-11-27T03:30:00.000-06:00

A beautiful Thanksgiving day here in Dallas. A wonderful relaxed afternoon with family and some old friends, great food and drink and deep notions of how blessed we all are.

Late in the day, after the crowd had dwindled, we were talking about parents and aging. Susan's mother is battling severe arthritis in her legs and back and slowly losing her powers of concentration and memory. Her world has shrunk greatly in recent years, but she can still be a delight to be around. My parents lead an amazingly active life for their years, but they have their issues as well. Mom recently starting sleeping connected to an oxygen supply, a fact with which she does not seem totally comfortable.

I commented that it's not easy to admit that one's life is technologically dependent.

Helen laughed and said, "Yeah, you're one to talk!"

She's absolutely right of course. If you look back at my earlier posts, the over-arching themes are stubborn denial and resistance to increases in the level of treatment.

It was then I realized that I'm still fighting technological dependence. I was able to recount my history up to the first dialysis session and then the telling stopped. I was able to write a day-by-day account of my transplant, but it's been difficult to starting telling the story of two years on dialysis.

I guess I'm still resisting that damned life-giving machine. But I am thankful for it.

Back to Work

2009-11-25T00:56:00.000-06:00

Sorry for the delay. That last week, the last month was way intense! And then it culminated in a cold and four weeks of upper respiratory crud which finally seems to be clearing after a couple of weeks of antibiotics and asthma inhalers. Yuck!

Great news for the Hoefling families. Bruce's donor is 'official' and transplant is in the works. His brother is now kidney free. When the damn polycystic things stop working, all they can do is cause pain, discomfort and misery. The only thing that made me happier than getting rid of that last basketball sized kidney was getting a new one, well, getting one that was previously owned, to use the current nomenclature.

My story will pick back up after that first day of dialysis two years and two weeks ago. As I recall, it involved a nurse, a needle and a fistula that didn't want to be found....

First Anniversary: A Special Day.

2009-10-29T03:06:00.000-05:00

My apologies, the time line gets crazier as I make the jump from this day last year to the first anniversary of my transplant. Tuesday morning, I received a call from Randy at the office asking if I could help at a Bordeaux Dinner Wednesday night at The Mansion on Turtle Creek. This question came as quite a surprise. I was not even aware of the event. But I wasn't too surprised to decline. The dinner was with a small group of customers honoring the proprietors of two estates that have become cornerstones of Sigel's Bordeaux portfolio, Alfred Tesseron of Chateau Pontet-Canet from Pauillac and Alexandre and Francois Thienpoint of Vieux Chateau Certan and Wings from Pomerol.

I will omit my notes on the meal and the wines. Needless to say, it was all very special. And quite delicious! If you want to see notes on the dinner and the wines you can read them on my wine blog, Greenville Avenue Wine.

It's difficult to write about the last toasts of the evening. John turned the floor over to Dr. Goran Klintmalm, who started the Baylor Organ Transplant Program 25 years ago. He spoke softly and eloquently of the 'double blessing' made possible by organ transplants. He finished by turning and offering me a toast on the first anniversary of my transplant. I was totally overwhelmed. And he is right. Organ donation and tranplantation is a gift of life and I have been doubly blessed to be a recipient. The knowledge and awareness of this gift grows deeper with every passing day.

I took the opportunity to thank Dr. Klintmalm and his team of miracle workers who do this work. I thanked the donor who died and because of his family's decision to give, I and many others lead fuller, more productive lives. Without the miracles of modern medicine my life would have ended three years ago. It is humbling to be the recipient of such a great gift and it truly gives my life new meaning and purpose.

As Mr. Tesseron and Mr. Thienpoint and others came up to offer congratulations and thank me for what I said, I was once again overcome.

What a special day!

Transplant! (Almost)

2009-10-28T07:58:00.000-05:00

It was an exciting 30 minute drive to Fort Worth. The surgeon had called me while I was on dialysis and said we had made the correct decision to accept the kidney. It was a terrific match and the big news was I was the primary recipient. He would visit more with me later in the day when we were checked in. We travelled light. We were told not to bring personal belongings as I would be changing rooms several times. We checked in through the emergency room, they were ready for us and it went quickly. I noticed another patient checking in for a kidney transplant and it was poignant moment. If the day went as planned, I would be receiving a kidney and she would be going home disappointed.

It was a busy day, as I was taken for X-rays and met with the anesthesiologist, the doctors would be doing followup, doctors who would be designing my cocktail of immuno-suppressants and assorted medications, the chaplain, the social workers and who knows else, all the while talking and texting about the news to family and friends.

Towards the end of the afternoon we met with the surgeon who explained the current situation. Evidently arrangements were still being made as to other recipients of organs from the donor. The donor's body was being kept alive on machines and when everybody was ready, the organs would be removed and transported to the recipients for immediate transplantation. The goal is to minimize the time the organs are not connected to living tissue. At this late point in the day, we were still several hours aways from surgery. He recommended getting started early the next morning so everyone would be fresh and rested. Who was I to disagree with that! So we spent the night in the hospital. The sofa converted into a bed, so Susan was able to sleep in relative comfort and would not have to drive to Dallas and back.

Early surgery was set for Tuesday, October 28.

Receiving the Call

2009-10-27T06:57:00.001-05:00

So, there I stood, October 27, 2008. At 3 am. In the middle of the bedroom with a telephone to my ear, shaking Susan violently to wake her up, trying to hear and understand what Bettina was saying, and now trying to tell Susan what was going on and talk to Bettina. All at the same time. It was quite confusing. And exciting.

So the gist was this. She was making the offer of a kidney, BUT it was considered a high-risk kidney. She would give us a few minutes to make a decision.

WHAT??? Is this a reality show???

The risk involved the life history of the donor. He had gone through a period of IV drug use, but the family said he had been sober for the last four years. During that time he had married and had a young son. The blood was clean and there was no evidence of HIV, hepatitis or any other blood born pathogens. We were not the first to be offered the kidney. Bettina did tell me that I was an excellent match and that she would call back in a few minutes.

Now, Susan and I had a quick, life-or-death conversation, putting quite a strain on our not-yet-awake brains. Our initial instinct was to take the kidney. We were not biased by the history of drug use, but my concern was the reliability of testing for blood born pathogens. So, off to the internet!

Initial Google searches produced a lot of generalized numbers and professional sites where you pay for access to hard data, but real numbers meaningful to real folk like us were hard to find. So we turned to the ultimate source of reliable data for the masses, Wikipedia. Here were numbers, lots of numbers, all footnoted to various medical journals, and easy to read. Best of all, the numbers showed that medical science seems to have blood testing down, well, to a science. At least as far as HIV, hepatitis and worrisome pathogens were concerned. Performance enhancing cocktails for athletes is another story.

We looked at one another and hugged. Our decision was made. But I cautioned Susan that the deal was not closed. There would be many more blood checks and matching tests before transplantation could occur. Several possible matches are brought in for every organ and the kidney goes to the best match. During the course of dialysis I had seen a number of patients be called in for a transplant only to come back to dialysis after the kidney went to a someone else.

It seemed like hours before Bettina called back. It was difficult to keep emotions in check as I told her we would accept. She seemed to be as excited as we were.

Time for logistics. I was scheduled to be at dialysis at 5 am, which was great timing as my blood would be cleaned prior to surgery which they hoped would happen late that afternoon. But first I had to go to Baylor Dallas for blood draws. Then I would go to dialysis and then we would drive straight to Baylor All Saints in Fort Worth late in the morning.

Time for a little technical transplant talk. UNOS (the national organ-sharing bank, check them out) divides the nation into regions around transplant centers. When organs become available they look first at that region. If a suitable match is not found, the search area expands. Each center and region has a list and patients can be listed on more than one list. The catch is that you have to be able to get to the transplant center quickly and remain in that area for 6-8 weeks after transplant for monitoring. Dallas and Fort Worth are centers of two different regions and Baylor Transplant Services administers programs in both cities. It was easy for me to be on both lists.

Now it was a mad dash to throw on some clothes and head to the hospital, which is about 10 minutes from the house. Once there it took 20 minutes to find the right lab. We finally found life in maternity where a kind nurse took us right down the hall to the lab. They quickly drew many vials of blood and we headed to dialysis. I had called and told them why I was going to be late. After many hugs I was rushed into the center and hooked onto my machine for the last time.

A New Day

2009-10-26T09:06:00.001-05:00

It was a long glorious October weekend with cool sunny days and blue skies, but filled with death and sadness.

Sunday night (or Monday morning - I have always maintained that it's night until either you wake up or the sun comes up - whichever happens first!) I woke up to hear the telephone ringing. Damn, it was 3 am! At that time of day it's either bad news or a wrong number. Since I was awake, I got up and stumbled through the house looking for the cordless phone. Of course the phone stopped ringing right before I found it, so I took it back to the bedroom. Before I got there it rang again. It was 3:18 am.

"Hello, is this David Waddington?"

"Yes it is."

"Hi, I'm Bettina Goin with Baylor All-Saints Transplant in Fort Worth. I have a kidney offer for you...."

In Memoriam

2009-10-25T20:57:00.000-05:00

As detailed in the last post, October 2008 was turning into a month of deep emotional reactions to my experience with kidney failure and dialysis. It was about to get deeper.

I think it was Monday the thirteenth that I came into work after dialysis. One of the managers was due back after a week of vacation, I was greeted with the news of his unexpected death. Charles was a few years younger than I was, but he had died alone in his apartment from a massive heart attack. While Charles did not live a retiring lifestyle, the news came as a great shock, he was not a man who was used to backing down to much of anything. A few days later we received news of the unexpected death of a former colleague who had long been a fixture on the local wine scene. Mike was 56 when he died, the same age I had been when I started dialysis.

Both men were mourned at gatherings of friends and colleagues. Many bottles of wine were shared with tales and memories. The service for Mike was on Saturday, October 25. The following day, some of us from the store gathered Sunday afternoon with Charles' family and friends for a meal and a time together to celebrate and remember. The month had started with deep reflections and the realization that I was living on borrowed time. The death of two friends drove the point into my heart.

Jump to October, 2008

2009-10-24T00:11:00.001-05:00

Please forgive this two year jump in the timeline. Obviously dialysis was successful and there are more bumps of learning and adjustment to cover in the story. But by October, 2008, I had totally adjusted to life on dialysis. I was feeling so much better and more alive than I had been in the preceding years of trying to ignore Stage V Renal Failure. The improvement was dramatic.

October has always been a momentous month in my life. Both in Atlanta and in Dallas, it is when the heat finally abates, the weather shifts and summer is really over for another year. Days are either cool, rainy and meditative or sunny and glorious, with blue skies and brisk northern winds. The first of the month sees my birthday and in Dallas we get the great State Fair of Texas.

It was after my birthday last year that I fully realized what had happened when I started dialysis. The time that had been allocated to my life by my incurable Polycystic Kidney Disease had been 56 years. According to the doctors, it was doubtful I would have seen New Year's Day, 2007. Without the miracle of technology, Susan would have been a widow and my sons without a father.

I began to have a glimmer of the blessings I had received.

Life Begins With a Needle

2009-10-20T23:41:00.000-05:00

Monday, November 6 2006 was a clear fall morning, cool crisp air, pale blue skies with wispy clouds as Susan dropped me off at the hospital on her way to school. It was very casual, she might have been dropping me off at the store. It was my third hospital admission of the year. The first was through the ER, the second she dropped me off for day surgery to create my fistula. Today the fistula was going to be tapped for dialysis.

We have developed a ritual whenever I go into the hospital. She gave me a flat gold chain right before we were married. The only time I am without it is when I am hospitalized. She takes the chain from my neck and puts it around hers for safekeeping. And it keeps me with her.

Check in was smooth and I soon found myself in my room. The TV was terrible, but I had brought several books and occupied my time reading, napping. Doing tai-chi helped as well. Soon the nurse came in and shaved my arm and eventually took me to the dialysis lab. I had done some research and had a general understanding of what was going to happen and had enough knowledge to make me the dread the process.

However I was not prepared for the size of the needles, and they would start with small ones! Apparently my veins run deep in my arms. For years I had been flattered by nurses who were relieved to encounter 'an easy stick' when it came to drawing blood or installing an IV. But the fistula was small and deep. It only took a few sticks to hit the fistula... the first time.

And then, there I was: hooked up to a machine. It's a powerful moment. I was no longer an independent being. I was totally dependent on advanced modern technology to stay alive.

A Bleak Fall

2009-10-16T09:40:00.000-05:00

Fall 2006 started dark when I was turned down for transplant because I was too heavy. Reality was beginning to crash into my stubborn will. Losing 15 pounds seemed impossible. I was already eating minimal meals and was trying my best to at least not gain more weight. Exercise was out of the question. Just getting through a day's work took maximum effort. I was always exhausted. Driving home without falling asleep in traffic or at red lights was a struggle. My days off work were just spent resting. I knew that dialysis was inevitable, but I continued to reject the notion and kept living my life with grim determination and a smile on my face.

I should add at this point that I was not in complete denial. In the spring I had seen the vascular surgeon and had surgery to make a fistula in my left arm. The procedure involves selecting a large artery that takes about 50% of the blood that goes into the hand and connecting it directly to a large vein, creating a super-highway to carry the large amount of blood at the high volume required for hemo-dialysis. As blood flows through, the vessel grows larger. It takes about 4-6 months before the fistula is large enough to be used for dialysis. If emergency dialysis is required, a surgeon installs a port in the upper chest with tubes that connect to the dialysis machine. In my typical style, I had the surgery on my day off, was discharged about 10:30 pm, and was at work the following morning!

I was seeing my nephrologist and receiving Procrit injections and IV Iron infusions every two weeks. The treatments certainly kept me going. I continued to work full-time and sing in the choir at church which meant both weekly rehearsals and several hours every Sunday. Not to mention the occasional work related wine tastings and wine dinners and the occasional bottle of wine (professional obligations, don't ya' know!) I don't remember going to the State Fair that year. I'm sure we did go, but not for long. Just a brief walk-around for a look at the Horned Toads (hand-painted cast replicas, check this guy out!), and a corny dog and a cold beer. It was a struggle through all those years. I can even remember waiting for Susan to get the car and come pick me up. Those who know us will realize the extremity of the situation.

Finally, at the end of October, I went in for an appointment. After waiting for the lab results, Dr. Rinner looked me in the eye and told me that while I had fought a valiant and courageous fight, I was not going to make it through the holidays without a trip to the emergency room with Acute Kidney Failure.

Arrangements were made to enter the hospital the next Monday to begin dialysis. It was the first Monday of November, 2006.

Back to the Story

2009-10-13T15:15:00.000-05:00

When we last saw the patient, he had been discharged from the hospital. Cauterization had stabilized bleeding from a duodenal ulcer. Transfusion of 8 pints of blood had restored hemoglobin to a stable and survivable level. The ureter stent had been replaced to allow urine to flow from the remaining kidney to the bladder without impedence from the grotesquely enlarged and deformed polycystic kidney. Feet and ankles were swollen and painful to the point where a walker was required for standing and walking. The kidney was functioning, but barely. The diagnosis had progressed from chronic kidney failure to End Stage Renal Disease. Stage 5 out of 5.

The leg and ankle swelling which was so painful on release from the hospital improved to a livable level. I could walk without pain, but ankle swelling and leg cramps persisted. Fatigue was constant. Every day was a struggle. The next 8 months would see the gradual deterioration of remaining kidney function. While there was no treatment for the PKD which was crushing the kidney, pursuit of several therapeutic avenues could help prolong kidney function.

High blood pressure was most critical as high blood pressure destroys the tiny capillaries where the kidney performs filtration of blood. Capillary damage is the direct cause of kidney failure. The damage is similar to capillary damage done in the brain when high blood pressure causes hemorrhagic strokes. I was taking 4 different drugs plus diuretics to control the blood pressure. Both the drug cocktail and dosages continued to change and increase as the kidney continued to fail.

Fatigue and cramps were symptoms of anemia. I was taking iron supplements, but was not producing red blood cells. The first step of the therapy was to convince my insurance to cover a series of injections of Epoetin (Procrit and Epogen are the brand names) which simulates the protein produced by kidneys that tells bone marrow to produce red blood cells. The drug is expensive, but the injections were eventually approved. However, the anemia continued to persist. Normally the production of blood cells is a gradual process, but now it was occurring in massive spurts. The periodic injections were depleting iron reserves faster than iron supplements could be absorbed. Eventually (again!) my insurance approved IV iron infusion which improved the anemia.

In addition, my regimen of drugs included Calcium, Potassium, and Vitamin D, as well as medication for ulcers and high chlorestorol. There may have been more, I really can't remember. The kidney performs many complex functions other than removing toxins and excess fluid from the blood. It monitors and regulates numerous minerals and vitamins and levels of several different hormones and proteins.

I did feel better after several weeks of Procrit and Iron therapy and proclaimed myself 'Ironman' when I walked into the store after an iron infusion. But maintaining a courageous front through sheer bluster could not mask the medical reality. Even at this point I was determined to avoid dialysis through sheer will and stubbornness.

On advice of my nephrologist we began the application for transplant, although it was too late to realistically hope that I could have a transplant before I would need dialysis. There was hope as allocation of kidneys is a little different than other organs. The difference is the existence of dialysis, which allows someone to live with total kidney failure. This option does not exist with hearts, lungs, or livers. Those organs go to the most critical. Kidneys go to the best matches. Usually kidney failure is a secondary effect of another disease such as diabetes which has other dibilitating effects on the body. Since PKD affects only the kidney, PKD patients have a better longevity with a successful graft.

However I was initially turned down as a candidate for transplant. I was too heavy and needed to loose weight to be considered. It was September, 2006 and the future was dark.

A New Week

2009-10-12T12:27:00.000-05:00

Last week was just a rush! Thanks for everyone's support and encouragement. One last interview is scheduled to take place. Michael will be on Countdown with Keith Olbermann on MSNBC at some point. The interview has been postponed twice because Keith is taking care of his father who has been suffering Acute Kidney Failure among other issues. Because of the bond of kidney disease he wants to conduct the interview personally. At this point, scheduling is day-to-day. I will post when the schedule is definite.

Mr. Olbermann did a moving piece on the need for health reform last week where he discussed his father's trouble. Here's a link:

Keith Olbermann on Health Care Reform

Tomorrow I plan to return to the story of my struggle with PKD.

An Exhausting Day

2009-10-07T00:41:00.000-05:00

It's been a long day. Up at 4:30 to shower and iron a shirt. Barely got coffee into a cup before the driver was here to take me downtown for the CNN remote. Home again, catch up on emails and Facebook, update the blog, and off to work.

Then the phone calls start. The first one is a request for an interview from Keith Olbermann (MSNBC) who's doing an hour long special on health care Thursday night. A round of phone calls and emails to family members ensues. Then a call from KABC Talk Radio in Los Angeles. They want a morning drive time interview. Another round of communiques.

Susan watched some talk shows tonight to take a reading. Evidently we paddled at just the right time and have caught a huge wave approaching its peak. It feels awkward to be at the center of attention when so many are so much more devastated. There many families caught in the health care pinch much worse than we are. We (I) have been taken care of to this point. We got into this whole thing when Susan responded to a Kristof column about a couple devastated beyond belief. There are many responses to Kristof's column about us that were written by individuals in far more tragic circumstances. But here we are and it is our time to carry the torch. The most uncomfortable aspect is being the pawn of so much flamboyant rhetoric.

I do want to make one thing clear. When we agreed to talk with Nicholas Kristof, we did not anticipate being a focal point for national debate. The issue is a moral one and one that should be discussed and resolved with a minimum of grandstanding hyperbolic rhetoric. I hear a lot of talk and opinions thrown around without regard for the subtler issues of the nature of diseases and how they affect the lives of individuals, and what medicine can do to enrich our human community, if indeed human community remains.

While our family faced a crisis when it came to investigating the potential of Michael or Travis as a possible donor for myself, in the end insurance provided two successful years of dialysis and (so far) a very successful transplant. Without dialysis or transplant my life would have ended almost three years ago.

The substance of the current healthcare debate is how Travis and Michael will be taken care of in the future.

A Bigger Forum

2009-10-06T10:30:00.000-05:00

We wondered what, if any, reaction there might be to Nicholas Kristof's NY Times column on Sunday. The response was a little overwhelming. When I walked into the choir room for rehearsal on Sunday, it was being discussed. A friend heard about from a friend who saw it in Copenhagen. Friends of a friend read about it in New York. And of course it spread rapidly and virally on Facebook.

I could not resist reading the comments on Mr. Kristof's blog. Most of his audience approved and thanked him for sharing our story. A few called us "stupid," "ignorant," "negligent" among other things, but that's to be expected. Most were ignorant of the effects of PKD or the realities of dialysis and transplant. The moving fact is that 12% (33 out of 277) of those commenting had issues relating to the relationship of diagnosis (preexisting conditions) to insurability. The 33 broke down as follows:

16 were related to PKD
5 were related to other kidney disorders
2 were related to disclosure of HIV
5 were related to other diseases
5 were related to other private insurance issues

Of the PKD related issues, most were families just like ours, parents with PKD reluctant to have their children tested; siblings with parents with PKD, frustrated by their inability to help.

All of this feedback was very reassuring. I felt very exposed as we went out on this limb with Mr. Kristof. We were sure of ourselves but we didn't really know how many others there were who shared our concerns. Evidently quite a few and the response was gratifying. The column was certainly noticed and seized upon by individuals active with groups such as the PKD Foundation, fighting to find treatments and a cure.

The big surprise came early Monday when CNN called. Evidently they wanted to interview Kristof on Monday, but he wanted to do it Tuesday with us. So yesterday was a day of massive communications, arranging logistics, and making arrangements. They arranged cars to pick us up and get us to the studios and to take Travis all the way to Stony Brook for his class. We did screening interviews. I prepped by taking Anthony, my drum prodigy nephew to see Jack White and his new band, The Dead Weather. Always best to go on national TV exhausted, slightly hungover and hearing impaired!

The interview went smoothly. The David Letterman story was OUR lead in story! (Dave and Dave, Back to Back.) Travis and I each got in a couple of sentences, but it was Kristof's show. We were just pawns in his game, but we knew that going in. Travis was on a real set in New York with Kristof. I was remote from a small room on the 15th floor of building in downtown Dallas on a stool in front of a Dallas morning backdrop with lights, a camera and sound plug in my ear. An observer would hear nothing, then I would speak, then silence, then I would speak again. End of drama. Out the door, down the elevator, into the waiting limo and back home.

But I think we made a splash! The PKD people seem to be thrilled with the exposure and want to put our story on their website. It was extremely courageous of Travis and Michael to put themselves on the line, especially Michael in light of his diagnosis.

I hope it proves to have been worth the risk and effort and that meaningful health care reform is accomplished.

A Bigger Forum

2009-10-04T09:29:00.000-05:00

A few weeks Susan posted a beautifully written comment on a column on health care reform in the New York Times by Nicholas Kristof about the dilemma my need for a new kidney placed on my sons who each have a 50/50 chance of being blessed with a diseased inheritance from their father. He was moved by Susan's words and asked if he could talk with us and possibly use our situation as a column. We agreed and after several weeks discussion among ourselves and with Mr. Kristof, the column was published today. It captures the poignancy of the boys dilemma and relates it to the current national debate.

Here's the link:

Nicholas Kristof: Dad's Life or Yours?

Hitting the Bottom

2009-10-02T08:34:00.000-05:00

So 2006 was off with a BANG!

From the selling floor to Champagne on New Year's Eve, to Chili and Black-eyed Peas on New Year's day, to passing out and nearly bleeding to death, through the ER to ICU and now confined to a hospital bed with a multitude of tubes going every which way. I guess it beat the alternative.

As I lay there in the dark of night unable to sleep with the night noises of the hospital echoing down the halls I had plenty of time to grapple with the reality of the future. The days of Stubborn Stupidity had run their course, thankfully just short of their logical end. I was alive thanks to the generosity of the many who had donated blood. My kidney was still working, barely. My future would at some point be dependent on either machines or a living organ from another person. The psychological adjustment was not easy. The path led through dark nights of depression and despair.

Depression and despair was aggravated by my intense desire to go home. Some doctors would soft pedal and say it was possible, but the final decision was my neprologist who for some strange reason, didn't trust me to follow up. It was a long weekend in the hospital capped off by the decision to administer another round of transfusions.

The next question became the ureter stent that was now almost 6 months past the time it should be been replaced. (Damn, stents are just temporary?) The surgery was scheduled for the middle of the week, which meant a couple of days in a hospital bed. At this point I had been on IV's for over a week. My feet and ankles were so swollen and sore that standing was extremely painful. Just hobbling to the bathroom was difficult. The old stent came out smoothly (evidently salt and mineral deposits from continued exposure to urine can make removal of an old stent a little difficult and damaging to the internal tubing.)

After almost two weeks in the hospital, I was finally discharged. I was taken to my parents' house so I could have continuous care. I had to use a walker.

I had finally hit the bottom.

ICU and Beyond

2009-10-01T10:49:00.000-05:00

And so, early the next morning, we called the doctor. Surprise, surprise! Off to the ER.

Predictably, I wasn't in favor. I felt weak, but not dizzy. I don't remember, but I would be surprised if I didn't dress for work! But on we went. At the initial triage, my blood pressure was 84 over 64! Wa-a-ayyy low. I was checked into a room in the ER, dressed for hospital success, hooked up to IV's and the tests began. My nephrologist came in and I had to address the fact that I hadn't seen him in sixteen months. For some reason he treated me like a misbehavin' teenager and didn't show much sympathy. Evidently the reason I was dizzy and passing out was that I was very low on blood and especially red blood cells. I was about to receive a complicated lesson on the redness of blood.

The diagnosis was complicated, but let's back up a bit to lay some groundwork. Despite my resolve not to wear the walking boot, the year had not been without chronic pain in my left ankle and foot. Continuous swelling had kept the tendinitis from fully healing and pain had been more or less constant. I knew that some painkillers were deterimental to kidney function and that aspirin thinned blood, so I consumed aspirin. A lot of aspirin.

What I didn't know was that aspirin was acid and the acid can cause bleeding ulcers. Bleeding was confirmed by the black sticky stools I had been having for several days. The blood loss was aggravated by severe anemia caused by kidney failure. Kidneys have many functions. Everyone knows about the filtering of toxins, but few are aware that the kidney monitors hemoglobin levels in the blood. When more red blood cells are needed, the kidneys produce a protein called erythropoietin which causes bone marrow to produce more red blood cells. Biotech companies now produce these proteins for use in treating anemia. Athletes requiring extreme stamina (cyclists, long distance runners) like to use 'EPO' to produce abnormally high numbers of red blood cells to supply extra oxygen to their muscles, aka 'blood doping.'

So, kidney failure means no 'epo' which means no red blood cells which means anemia! Internal bleeding plus severe anemia means no red blood. I was bleeding to death. I had passed out in our living room from lack of red blood cells.

And so the transfusions began. In the afternoon I was taken to the endoscopy lab for more fun and games. Here they ran a tube down the esophagus, took pictures of the ulcer and cauterized it. Hopefully that would stop the bleeding. Eventually that night I was moved into the ICU where they could closely monitor my condition during the transfusions. Initially I received 6 units of blood. The good news was that it stabilized. The bleeding had stopped and I was moved to a regular room. By now I had IV's for ulcer medication, pain medication, blood thinner, blood transfusions and who knows what else. I had three or four IV's in my right arm and one or two in my left. It's not good when a nurse is surprised by the number of IV's.

The next couple of days were just observation and I began to make plans for going home. But I was continually denied by the doctors. More transfusions were being discussed, which came as a surprise as my hemoglobin level was running stable at around 8 units. I asked a nurse what was normal and she said 12 to 14. I knew I had received 6 units, so I did the math and reviewed it with the nurse. "I was THAT low?" I asked. "Yes, you're a lucky man," she replied. I was beginning to see how close a call I had had with death.

As the days were on, my thoughts ran on two paths. The first was coming to grips with reality, not easy after years of stubborn stupidity. The kidney was failing. The rest of my life was going to depend on either dialysis or transplant. I could not conceive of how we could handle what would no doubt be staggering costs. I couldn't conceieve of how we could pay for this hospital stay! The other thoughts were the units of blood. They would have all come from different individuals who had given blood for whatever reasons. At this point I had received blood from 6 different individuals. I was beginning to understand what is meant by "the kindness of strangers." The notion of receiving these gifts was humbling.

Instant Karma's Gonna Get You...and Did!

2009-09-29T21:53:00.000-05:00

Famous last words, Dr. Karma. I think Mr. Lennon was closer to the truth, "Instant Karma's gonna get you... You better get yourself together, Pretty soon you're gonna be dead!"

I really gave my all to resisting the onslaught of PKD. I went to work every day, worked the floor, rolled stock, lifted cases of wine but I was continually exhausted. Some days it was difficult to walk from one end of the store to the other, but I pushed on. Many days it was a struggle just to drive home from the store. Looking back, I really don't understand my thinking. It was as if I just worked hard enough, the problem would just get tired of fighting me, that my stubborn drive would just break on through to the other side.

There were some good times. We met up with the boys in Santa Fe for a fun few days of vacation during the summer. In Los Alamos we visited the sites including The Black Hole, a salvage store in an old Safeway that sells surplus equipment from the labs. That's a lot of used exotic stuff! We met the legendary proprietor "Atomic Ed" Grothus. We went walking through the ruins at Bandolier National Monument. Progress was hindered because I had to sit down and rest every few hundred yards. During the trip my urine was tinged with blood. It was scary, but cleared up after a couple of days. I guessed it had something to do with the stent, but I kept it to myself and until today have never mentioned it to anyone. Talk about stubborn stupidity!

Back in Dallas, the year moved into fall and the holidays, the busiest time of year for any retail endeavor, but especially for wine and spirits. I was working long hard hours in the store and spending long hours at choir rehearsals and services as we neared Christmas. Certainly a season that makes huge demands on time and energy. Time I had, but energy was in short supply. But, yes, I hung in and worked my double shifts, got off work and still went to dinners and parties and somehow came through the holidays intact.

Or so I thought.

I woke up unusually exhausted on my first day off in January, after the holidays. Exhausted and dizzy, I just collapsed into an easy chair in front of the television and napped on and off. Every now and then I would get to use the bathroom, do a load of laundry, get something to eat or drink, but the exhaustion and dizziness seemed to get worse and worse as the day went on. I remember bouncing off door frames, lurching from chair to chair for support until I could collapse in my chair. Any guesses as to whether any alarms were going off in my brain? Did I call anybody for help? Did I call a doctor? Did I even look up symptoms on the Internet? No, of course not.

Finally late in the afternoon, Instant Karma "knocked me right in the head" and I blacked out and collapsed on the living room floor. Somehow I established a link to consciousness and dragged myself up into my safe haven, the chair. "Susan would be home soon," I reasoned, "so I'll just sit here until she does." And that's what I did. When she got home I did a surprising thing, I told her about the dizziness and collapse. I was feeling more stable now. We decided to call the doctor first thing in the morning.

Another Crisis

2009-09-28T10:42:00.000-05:00

Curiously, one of the problems I've faced piecing this memoir together is figuring out when things happened. I remember images and scenes from events but putting them on a time line is surprisingly difficult!

One clear memory is being in the hospital when the Texas Rangers were in the hunt for the playoffs (that's so rare it's easy to pin down!) and Frankie Francisco threw their fading chances along with a couple of folding chairs into the stands in Oakland. Michael was in town taking a semester off from school and we watched the games together in the hospital. So there you have it, the time was fall of 2004, several months after the ankle episode. I was still wearing the damned walking boot.

The pain began the same way as my kidney stones and the bleeding cyst, a stitch in the side that wouldn't go away. By Sunday afternoon, the pain was getting serious. I felt really bad and was vomiting. I felt the need to urinate, but could not produce any urine. Susan called the doctor who told us to go to the emergency room. What I remember most are the morphine injections and the warm blankets. I lay there, barely conscious wrapped in a dark, warm, velvet cocoon; the kind of pleasure that totally explains addiction to narcotics. They did x-rays and scans and there was talk of a possible kidney stone, which is what the pain felt like. But evidently kidney stones didn't explain the vomiting and the lab results which showed acute kidney failure.

I guess I need to back up a little. At this point I was in the early stage of chronic kidney failure. I don't remember discussion of numbers or stages, but even going back 6 years to the first nephrectomy, clearance numbers were out of the normal range and through the intervening years my kidney function had been in a very shallow rate of decline. The hospital visit showed a big spike in the level of toxins, which indicated acute kidney failure, not stones. Of course the kidney was enlarged and distorted by the cysts, small stones would be difficult to see.

Eventually I was moved out of emergency and into a room. Frankly I don't remember much. I remember being told I was going to have surgery and I have a brief memory of being in the operating room, but the morphine makes memories fuzzy. Evidently what had happened was that pressure from the size of the polycystic kidney had blocked the ureter so that urine could not pass from the kidney into the bladder. Urine backed up in the kidney, causing the kidney to fail, along with pain and vomiting. The solution was to insert a stent into the ureter to keep it open and allow the urine to flow. I will leave it to the reader's imagination as to the point of insertion (or not, as the reader wishes!) I found myself back in my room with a catheter hooked up to a bag of bloody urine. The stent worked, and after several days my kidney function improved to the level it had been before the crisis.

My nephrologist told me it was time to start making preparations for dialysis. A vascular surgeon came to see me to make plans for the creation of a fistula in my arm. The fistula is created by connecting a large artery to a large vein to make a high-speed loop to carry the high volume of blood necessary for hemodialysis. It takes 6-8 months for a fistula to mature to a point where it can be used, so it's best to have it done before dialysis is actually necessary. Of course all of this news came as a total shock to me, as I had been totally denying the possibility of this eventuality for years. (See earlier post on Stubborn Stupidity.

I had other plans. I was scheduled to go on a company trip to visit wineries in Napa Valley (I wound up not going due to the surgery.) The holidays are the busiest time of year for wine sales and busy days with long hours were just ahead. There was certainly no time to schedule vascular surgery in November or December as the doctor suggested.

We did go to Hell's Backbone in the Canyonlands of Utah for my sister's wedding. Travis flew to Las Vegas and spent the night sipping bourbon and grading papers in the bar at the Bellagio where we picked him up and and drove through Zion and Bryce Canyons and had an amazing weekend.

At the end of the holidays, after a long New Year's Eve in the store, I threw the walking boot into the trunk of the car and resolved never to wear the damned thing again, no matter how bad the pain. I was sick of being sick. I was sick of being hurt and disabled.

In February we went to New York and spent the weekend with the boys wandering through Christo's fabulous Gates in Central Park in the snow. After a long weekend walking the sidewalks of New York, through museums, up and down stairs in Subway stations, and through Central Park, I was walking and feeling better than I had in a year.

And I never made a followup appointment with my nephrologist. I didn't see the vascular surgeon. In fact, I didn't see a doctor for the rest of the year.

Mind over matter. You don't mind, it don't matter. An old friend, Dr. Karma told me that in about 1971.

The Long Slow Slide or Stubborn Stupidity Rules the Day

2009-09-24T10:40:00.000-05:00

As I write, the good news is the improvement of Bruce Hoefling, whose crises caused by PKD have caused several hospitalizations due to burst and bleeding cysts, removal of both kidneys, a difficult time with dialysis and now many days in ICU due to undiagnosed seizures. Amy has been faithful in keeping her blog up to date. Link it up and keep them in your prayers.

pkdsucks 9/22 It's Getting Better

To return to my story, after the left kidney was removed, life slowly returned to normal and my PKD, unlike Bruce Hoefling's, receded into the background. High blood pressure and occasional swelling of the ankles were the biggest medical issues. Of much more importance were unforeseen job changes which led me out of the packaging industry into first rock and roll memorabilia and then the wine business. (That was a nice change!) Our sons were finishing high school and heading to college and Susan and I were adjusting to the prospect of the empty nest. I was happy to stick my head in the sand and believe that my diseased kidney would somehow keep on doing its thing and life would just go on. Yeah, I know. Just me being stubbornly stupid again. (Why did I have to be so good at that???)

The next problem was aggravation of the swollen ankles. I somehow strained my Achilles tendon. I think it was at a wine tasting at a friend's house. I had a glass in my hand of a hard-to-find Pinot Noir when I unknowingly stepped down into his sunken living room. I stumbled, stayed upright and, most importantly, didn't spill a drop! The tendon started aching the next morning and the pain didn't go away. Selling wine retail is not a job you can do sitting down and I worked in a very large store. That didn't help the healing either. In fact as I tried to ignore the pain and kept working over the next couple of months, the pain just kept getting worse.

It was the day after Father's day. My sons were in town and we were going with my dad on a barbecue excursion to Central Texas to celebrate when the pain finally became too intense. I bailed on the trip and asked Susan to call a doctor. Yep, tendonitis of the Achilles. I found myself on pain meds in an easy chair with my lower leg in a walking boot. The problem was, the ankle wouldn't heal. The swelling, due to progressive kidney failure, kept aggravating the damaged tendon. The other side effect of kidney failure is fatigue. I was continually exhausted dragging around a bum ankle in a walking boot.

Was I seeing a nephrologist? NO.

Did I connect any of this to kidney failure? NO.

Did I acknowledge the possibility of dialysis or transplant? NO.

Stubborn Stupidity was the rule of the day.

PKD has a Much Darker Side...

2009-09-17T10:50:00.000-05:00

As I've been recollecting thoughts and timelines working on my next post, I've been reading the blogs of other victims of PKD. I've posted a few links and urge you to check them out. Particularly pkd sucks. The blog is written by Amy Hoefling. Her husband Bruce is currently sedated to prevent seizures in an ICU in Florida. He is on dialysis and I believe both native kidneys have been removed. They have two young sons each of whom may have PKD. My struggle with PKD has been nothing compared with theirs. I almost feel guilty writing about my own experiences. Please check it out and keep them in your prayers.

I was first contacted by Amy while I was in the hospital getting my transplant. The first time I logged onto Facebook after coming home, I found her message. She had seen that I had PKD and asked how I was dealing with it. At that time Bruce was approaching the need for dialysis but was very resistant to the notion, just as I had been. She wanted to know how I had approached it and overcome the resistance. The difference between Bruce's path and mine is unimaginable.

Receiving a transplant has proved to be deep well of emotions and the plight of the Hoefling family is tragic and inextricably linked to my own transplant experience. They have been looking for transplant donors, though the immediate concern is Bruce's current health. Please read her story and keep them in your prayers.

Remember that kidney transplantation can be done before dialysis is necessary. While both procedures are expensive, the cost of 6-8 months of dialysis is the same as the cost of a tranplant. ORGAN DONATION SAVES LIVES!

Under the Knife

2009-09-11T23:50:00.000-05:00

And so it was decided that David would undergo an exploratory surgery to determine the nature of the baseball size mass on his left kidney...

Sounds simple enough. Decisions like this are made everyday to undergo massively invasive surgical procedures. But reason is difficult at these times of high stress. There is no way to avoid the stess. The baseline condition that causes one to consider surgery is stressful in and of itself. The tone of the doctor who gave us the second opinion had been devastating. We faced four possibilities and none of them were good.

The mass could be cancer. Not good, but probably no need to worry about PKD.
Removing the mass would destroy the kidney, leaving 1 kidney still ravaged by PKD.
The blood filled cyst could be drained. Better, but 2 kidneys are still ravaged by PKD.
Everything's fine on the inside. Unlikely, but 2 kidneys are still ravaged by PKD.

Not a pretty picture, but the fear of cancer drove the decision and I went into the hospital in the middle of June, 1996. Sure enough, removing the mass, a blood filled cyst, destroyed the kidney, so it was removed. Oh, well. The remaining kidney functioned just as well as both kidneys had been functioning, and the once failing redundant system was now just a single failing system.

The surgery was traumatic. The kidney was the size of a small football and the long incision went around the side and through abdominal muscle. Any movement was extremely painful. Being moved around and taken for X-rays was excruciating and I learned the value of a morphine pump. ER was a brand new show and as I forced myself to walk the halls, it was on in every room. I couldn't watch it. It was too real!

I gradually healed and went back to work and life resumed. I lost a little weight and felt good about that. But the weight came back and the blood pressure kept needing more and more medication. And the remaining kidney kept growing in size. PKD just doesn't stop.

Trying to Hang on the Downslope

2009-09-07T11:30:00.000-05:00

The next few years were characterized by determination just to go on with life as if everything was normal. But the blood pressure kept climbing higher and there was occasional discomfort sleeping on my side; seatbelts and airline seats put pressure on my enlarging kidneys. Stoicism, determination and deep currents of denial kept me going.

In the spring of 1997, Susan and the boys were off on spring break. I awoke one night with intense throbbing pain in my left flank. The only similar pain I had experienced were my kidney stones, so that was my self-diagnosis. Remembering the staggering cost of staying in a hospital for several days just to flush the stones by myself, I took a good slug of tylenol with several large glasses of water and went back to bed to just tough it out. Another bout of good thinking by the Dave-man!

The pain was somewhat better the next morning and I went on to work. My next action did show some intelligence and I called the doctor and made an appointment. An X-ray with dyes revealed some issues, and after a CT scan, I was referred to a urologist. The problem was what appeared to be a solid mass of indeterminate origin the size of a baseball on the left kidney. It could either be cancer or a blood filled cyst. (Sidenote for those who don't know: Polycystic Kidneys spontaneously develop many fluid-filled cysts. They continue to grow and squeeze the kidney like a hand squeezing a sponge. Just as a compressed sponge will not absorb water, the compressed kidney will not filter blood.) The pain was either from compression or bleeding into the cyst. He saw surgery to take a biopsy as the best option. Wow! I was not ready for this option. Cancers of the kidney are nasty. They rarely show up at an early stage becaues they are just not symptomatic!

We went for a second opinion and the doctor's opinion was a good deal less than sugar-coated. Basically he said my kidney's were trashed and I was lucky to be alive or words to that effect. We left his office devasted. My urologist said things were not that bad, because despite how distorted the kidney's appeared they were still functioning a a fairly high level. He did say there was a possiblity that the kidney might not survive the surgery and he would have to remove it, but that the remaining kidney would continue to function well. And we agreed to the surgery.

Coming to Grips, Sorta...

2009-09-01T23:57:00.000-05:00

Coming home from the trip I did something I had never done as an adult. Make an appointment for a physical. Other than the kidney stone, I only saw a doctor every other year or so when bronchitis set in after a bad cold. The physical yielded nothing unexpected. I had really high blood pressure and my cholesterol was beginning to creep up, but hey, I was in my mid-forties, that was normal. But the blood pressure was anything but normal. Despite changing medications, using a cocktail of medications and changing dosages, the blood pressure kept creeping up. We'd get it under control for a while and then bingo! Back up it would go.

Side effects were major issue. I felt bad afer taking the big med's with headaches, dizziness and weakness. Fatigue became constant with frequent naps after work. Occasionally I'd fall asleep in traffic and have a couple of dented bumpers to show for it. My ankles were contantly swelling and I started taking diuretics but they were limited in therapeutic value.

Expense was another issue. At the beginning I paid for expenses upfront and was reimbursed by the company's insurance carrier after filing claim forms and receipts. Eventually the insurance changed to a PPO which was better. Now I just had to pay the copay's, which were still expensive since most were top tier brands.

We gave some thought to PKD during all of this, but I refused to consider the option that I would face kidney failure. The very words would just stop my thinking process. Of course, there is very little you can do. I started trying to improve my eating habits, mainly by avoiding salt and cutting way back on coffee and caffeine, trying to exercise more and keep tabs on the blood pressure. High blood pressure is the biggest destroyer of kidneys.

But that's the problem with PKD. When it starts causing problems, you can just treat the symptoms. And then hang on and see where it goes.

Life can be Normal

2009-08-31T08:22:00.000-05:00

And the following years were good. Active family life centered around two great young boys. I was helping coach soccer, football and baseball teams. They both were singers so there were rehearsals and performances. Susan did graduate studies and became the first in the family to get an advanced degree. Vacations took us camping in the Rockies from the desert Southwest north to Canada. Rocky Mountain National Park became a second home. Taking the boys on an overnight hike over the Continental Divide was a spectacular highlight. It was mighty struggle getting up and over the 13,000+ mountains, but a triumphal march back into civilization. Our other destination was Manhattan where my parents had moved into a nice apartment on the Upper West Side, just across from Lincoln Center. The Big Apple became another home away from home. I did return from one vacaction to find an unexpected career change was at hand, but by the end of the summer I had a better job, so basically it just was a summer off!

At this point PKD was an vague afterthought. My health was great. Blood Pressure was normal. Well, I was a little overweight, but so what. And then in the mid 90's we decided to take a trip to New York. The church choir was to perform in a choral festival at Lincoln Center. Michael was a huge Civil War buff at the time so we decided to visit battlefields along the drive. The first night we drove through harrowing misty fog to stay close to Shiloh, The next morning, the visit to the battlefield was just what we had hoped it would be. As we drove on, I noticed an oily mist on the rear window. We weren't losing oil, but it was worrisome. I remember feeling nervous, antsy and edgy. It was not proving to be a relaxing trip.

Camping that night at the Cumberland Gap I stepped into a culvert and badly scraped my shin. The next morning, against my violent protests, Susan insisted we go to the emergency room in the nearest town. Leaving Susan and the boys asleep in the car, I went into the clinic where they were really not concerned with my shin, but were extremely concerned with my blood pressure which was 225/180. I had no idea of the severity of the situation. No doubt my anger was pushing it up even higher as they hooked me up to IV's and machines and worked to get things under control. Several hours later Susan came wandering in to see what's up. Thank goodness she had the sense to understand the nature of the emergency. Finally, the pressure came down enough that they would let us leave with prescriptions for medication and the understanding that we needed a cuff to monitor the blood pressure frequently and head for the nearest emergency room if the numbers got too high.

Though we didn't connect the dots at the time, PKD had struck its first blow.

Discovery

2009-08-30T23:02:00.000-05:00

In December of 1989 I woke up to severe pain in my right side. It felt like kink and I could stretch in just the right way it would clear up and I could take the boys to school and go to work like a normal day. Instead it just got worse and Susan insisted on calling the doctor who said to just go straight to the emergency room. It seemed silly to me, but the pain was getting worse. After dies and scans I was diagnosed with a kidney stones and after many IV bags and a many clicks of the morphine button, I gave birth to a pair of spiny stones.

But the weird thing I noticed through the haze of the painkillers was the procession of specialists coming in to see the condition revealed by the scanner photos with their paragraphs and arrows on each one telling all about them. And I remember Dr. Rinner sitting on the window sill telling me that I had an incurable disease that would likely cause no more difficulty than possibly difficulty obtaining insurance. And that was my introduction to Polycystic Kidney Disease.

I did a modicum of research and the odds were slightly in my favor of it never causing problem. It was genetic, but there was no history in the family of kidney disease. It was Christmas. When I was released I helped distribute my company's Christmas cakes and went to Christmas Eve dinner at my sister's house. Like nothing had happened.

And life went back to normal. Except I sure was pissed at how much those specialists charged to come in and see my X-rays. It seemed like I should be charging them!