BK Angst

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?

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

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

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

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

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

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

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

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

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

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!

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?

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

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

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

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

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!

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

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

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

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?)

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'

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

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

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...

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

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

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

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.