"So, What's It Like Being You?"

"So, what's it like being you?"

That's the question an old friend used to ask. Often in a randomly aggressive manner. Usually with humor, but really, you never knew.

Another old and mutual friend used the phrase as the topic of a post on his blog Philosophy for Real Life. He remembers several answers, but suggests that the answer of a university professor is the correct answer. "I don't know. I have no basis for comparison."

My answer: "Pretty damn good."

Of course I really have no comparison, but after battling PKD, two years of dialysis, a year with no kidneys, and now being seven years post transplant, I know the alternative. And as of today, I have no wish to explore the alternative. Life seems more and more miraculous with every new day.

Last week was check up time at Dallas Transplant Institute. I've been going in every four months for the last couple of years, though this visit was delayed a couple of months by the Holiday season. It was also time for two annual tests, a 24 hour urine sample and the dreaded Glofil test, so it was a long, cold Thursday morning, drinking iodine laced diet coke and countless glasses of water.

But I passed, all conditions are stable. Kidney performance was the best it's been since the onslaught of the BK Virus some years ago. Historically it's been variable with creatinine hovering between 3 and 3.5. It measured 2.85 in September, 2.55 last week, so that's two labs in a row showing improved performance. Not that I can read anything into the numbers except to say, "Great!"

My blood pressure was excellent, my pulse was unusually low, but it has been for some time now. I saw a new doctor and she seemed concerned, she decreased my blood pressure meds and knocked my Prograf down 0.5 mg. We'll see what happens. So I'm back to tracking blood pressure a couple of times a day and an appointment with a cardiologist for a routine check. I go back to the Clinic in a month, so we'll know more then.

I have much bigger news on the ophthalmic front. The Doctor has decided that its time to go after my cataracts, so I am going in for a new lens (len?) in one eye Monday morning. He will also do a laser adjustment for my small astigmatism. Since my right eye is my weak eye, he will adjust the lens for close to medium range. In two weeks he will install a monocular lens for distance in the left eye. The combination should pretty much eliminate the need for glasses. So that's like, HUGE!

The other problem with the right eye is scarring and chronic iritis which stemmed from one of the treatments for the BK Virus. They attempted to use two meds to rid me of the virus. Cidofovir, which is toxic to the kidney, and Leflunomide. Both eyes, my right eye in particular, became inflamed immediately. I have had erratic but chronic inflammation ever since. However, the doctor is not concerned with complications from the surgery.

That's my news for now. I'll report back after my next appointment!

Post Transplant Weight Gain

Checking in after another three month check-up. And everything remains the same, creatinine is stable, although it is high compared to normal kidney function. The last BK virus showed a count of 250. When the virus was causing problems it was well into the tens of thousands of copies in the serum sample. Other numbers are normal. Well, except cholesterol. It was wa-a-a-ay down.

 

Not coincidentally (in the opinion of Dr. C) was the fact that my weight was down 20 pounds. He asked if the weight loss was intentional. Of course, I said. He asked if was going to continue. Of course, I replied.

 

Weight gain has been a lifelong issue, I've always been on the heavy side. My grandmother said I had her big bones. I was heavy in high school, but lost the weight during the hippie years in Austin. The pounds have accumulated slowly and steadily through my adult years.

 

When PKD finally did in my kidneys, my first transplant application was rejected because I was too heavy. I was told to lose 15 pounds and reapply then. But that was not going to happen, my condition was too far gone to exercise and my will was not enough to change my eating habits.

 

When I started dialysis treatments, I started shedding pounds immediately. Apparently a good amount of my weight was due to kidney failure and water retention. Lester, one of my dialysis nurses used to pinch my legs and gleefully talk about how much water they could pull out with the day's treatment. It wasn't long before I had lost enough to reapply for a transplant.

 

As the pounds continued to fall off, I felt better and better. I was already doing Tai-Chi before my dialysis treatments and I began walking. Losing weight became an obsession. Before long I was walking several miles at a time and charting my progress on Excel spreadsheets complete with graphs.

 

After a year my last Polycystic kidney was removed. That was over eight pounds gone right there!

 

At my lowest weight, I had lost 40 pounds and was loving it. Then I slowly started gaining a little weight. Maybe I had dried out too much? The doctors suggested that the muscles I was beginning to build weighed more than the fat. I don't know. I didn't worry too much.

 

Then I received my transplant.

 

And I knew that my 'skinny' days were over. I would be taking steroids as part of my anti-rejection medication and weight gain is a side effect of most the other meds as well. And I began to slowly put on the weight. About 8-10 pounds a year. For 6 years.

 

Until this summer. In order to keep getting the lower rate for 'health-conscious' patients, United Health Care insisted that I enroll in a weight loss program called Naturally Slim. So I did. Susan followed the program as well, so we were able to support one another and between the two of us we were able to stay through the program for the last ten weeks of the summer.

 

The program has no tricks or magic diet. It teaches you to change your eating habits to mimic the eating habits of people who are naturally thin. Only eat when you're hungry. Only eat as much as you need. Chew slowly and enjoy every little bite. Eat slow, take pauses. Watch your portions. Take leftovers home. Eat whatever you want, but NO SUGAR! That's it. Exercise is encouraged and emphasized, but for health purposes, not for weight loss. I'm happy to say that it works and Susan and I both are close to our 10 week goals.

 

It's too late to stop now!

Still Here

I know it's been a while since I posted.

I do check in from time to time and readership of the blog is at an all time high. BK Virus and Fistula are the two most frequent search words used to find the blog which would indicate that readers are new to BKV and dialysis and are searching to hear from a fellow patient. The occasional comment bears that out. I can't say how moving that is. When I started telling my story, I had never talked to someone with PKD, let alone BVK.

But that's a good thing. No news is said to be good news and that's the case here.

Had a checkup at the Transplant Center this morning and labs were great. Well, for me they were great. The big number is creatinine clearance which shows how the little kidney is working and today it was 2.8, which is the lowest I've had since my bout with BK Virus a couple of years ago.  Normal for a healthy kidney is 0.6-1.3. My clearance seems to fluctuate between 2.8 and 3.3 and that's my new norm. The kidney was scarred and damaged by the BKV inflammation so I live with some of the tiredness and ankle swelling that goes with chronic kidney disease. Aggressive medication keeps my blood pressure down, that's what really damages the kidney.

I go back in three months. We'll do a 24 hour urine sample, a Glofil test and a bone density scan and get a detailed profile of just how the little kidney is performing. That will be just after my 6th anniversary. See you then.

Right now I'm off to set up my next colonoscopy. Fun times coming up!

More Lab Reports

I hope posts like this continue to appear, but less and less frequently.

Went to the clinic bright and early this morning for my three month check-up, and everything was great! Cholesterol, sugar, red blood count, potassium, etc etc etc, all normal. Creatinine continues to be out of normal for anyone but me. It was down from last time (3.3 from 3.6) but the 3.6 was up from where it's been over the last year. So, normal for ME!

Note to anyone who has not read the blog. My transplanted kidney was damaged during my struggles with the dreaded BK Virus. Whether the damage is due to inflammation from the virus or from the neurotoxic drugs used to fight the virus is not clear, but whatever, the damage has been done. The good news is that the kidney function has been stable for sometime.

I was to have had the BK serum level checked, but lost my prescription and did not have the test performed. So I will get that taken care of next Monday on my day off. I'll post the results when I have them.

My next checkup will be in four months, that's March. 2013. That will be the day for my annual Glofil test which uses radioactive tracers to get an accurate measure of how well and kidney is clearing toxins.

Happy Holidays to All!!!

Four More Years!

Four more years of normal life is what I've been blessed with by my kidney transplant.

Four years preceded by two years of dialysis, two years of intermittent ill health and hospital visits, and before that, eight years of declining health following the removal of my first kidney. all due ultimately to Polycystic Kidney Disease.

In the last year before transplant, I finally came to grips with being on an artificial life support system, i.e.: dialysis. In other words, I came to see dialysis as a blessing, not a curse. I was fond of saying that my new birthday should be the day I started dialysis. My old kidneys had failed me and in any other century of mankind I would have been dead. Instead, I had been blessed with two years of machine-assisted living.

That realization came just weeks before my transplant. No one was more supportive of my "new birthday"  than the person who was intimately involved with my first birthday, my Mother. Every year on the last day of October, she would send me a birthday card to remember these extra years of precious life.

Until September. She died a peaceful death at home in the arms of her family as hospice helped her struggle to breathe with her cancerous, smoke-damaged lungs.

And I passed through this anniversary of my transplant without giving it a thought.

Your Three Months are Up, Back to the Clinic!

It's been three months so I went back to Dallas Transplant bright and early for my periodic check-up.

In the interim I had my annual physical exam with my primary care physician a couple of months ago and assume everything went OK. As usual, they asked if I wanted to access my results online. As usual I screwed it up. As usual the time window expired before I got the information. If it had been dire, they would have called me. I hope.

I seem to be a little more tired these days, ankle swelling seems a little worse, my feet hurt more and I put on some stubborn pounds over vacation. (Well, what's vacation for, anyway???) Extra pounds explain all ills. I didn't expect to find many changes.

And there were no drastic changes. Hemoglobin, Blood Sugar, Calcium, Phosphorus, Blood Pressure, Protein, Sodium; all these measure and more were normal and unchanged. What's missing? OOPS. Creatinine. Up to 3.6 from 3.1. The PAC (who has seen me many times) didn't show concern today. Let's hope the creatinine is not up again when I go back at the end of November.

What causes change in creatinine? After all, it is a measure of kidney function. As before (see 'Surviving PKD: It's not a Rejection, but...), it could be rejection, it could be BK Virus, it could be degradation of the little kidney due to the previous BK inflammation.

It's been a year since the BK serum level was checked, so it's time to do a BK test again. The test has been prescribed. It is done at Baylor Hospital's Outpatient Lab. One of these mornings, probably next week, I'll get that done. I'll post the results as soon as I have them. (Family Warning: It might not be until my next appointment!)

The other test I need is a colonoscopy. (Did I say NEED???) Well, it's been five years and I did have a couple of small polyps, it's definitely the thing to do. I'll need to get that scheduled, probably in mid to late September or October.

I can't remember if I talked about my last colonoscopy in a blog post. It was done in October 2007 as part of my transplant evaluation, just before my last polycystic kidney was removed. At the time the kidney was the size of a basketball and its size distorted the normally straight lines of the colon. I can painfully attest to the great difficulty Dr. H. had forcing and manipulating the scope through the distorted canal. He apologized after the procedure and said that if he had known it was going to be so difficult, he would have put me under anesthesia. At that point I think he just gave me another valium. That puts an interesting wrinkle into the next procedure.

I'll let you know in the next post.

BK Virus: A Recap

Good news! I found the missing email. It had been filed under Important. Who knew there was such a folder. The reader asked how high my numbers had been, so I've been tracking them down through my blog pages. Here's what I found along with creatinine levels:


The BK was discovered after elevation of creatinine to 2.6 was noted during a normal visit to the clinic. A kidney biopsy was performed to determine whether the cause was rejection or BK Virus. BK was confirmed with 497,000 copies of the virus found in the serum test.


Dr. M reduced dosage of both Prograf and Myfortic and prescribed a round of Ciproflaxcin. After two weeks serum test copies were reduced to 73,000. Creatinine was slightly elevated, blood pressure was becoming more difficult to control.


Two weeks after the Ciproflaxcin, the serum test revealed an increase to 156,000 copies. Moreover, Creatinine was continuing to rise (3.1) indicating the inflammation was doing damage to the kidney.


Dr. M reduced the Prograf again and discontinued the Myfortic. Two weeks later, the serum test revealed reduction to 45,000 copies, but two weeks after that it was back up to 54,000. Creatinine continued to slowly elevate.


Then he began a series of treatments with Cidofovir, an antiviral that had been developed to fight aids. Its primary use was to treat retinal inflammations in HIV patients. Its primary side effect is its toxicity to kidneys. He also administered an infusion of IVIG (intravenous immuno-globulin) which produced fever and convulsions (I reacted horribly to the drug.)  


Serum tests revealed a reduction in copies, first to 3150, then to 650. However creatine was up to 5.6. We don't know whether it was the toxicity of the cidofovir or the reaction to the IVIG that caused the damage, or the continued damage from the BK Virus. Dr M then prescribed treatment with leflunamide,  an antiviral whose primary use is to treat rheumatoid arthritis. It caused a retinal inflammation and was discontinued.


The next two serum tests, however, revealed 0 copies of the virus. A test twelve months later revealed the same result. So I hopefully remain free of the virus. Creatine came down to 3.1 and has been steady for the last year. I have had no further issues with high blood pressure.


The reader asks about a safe level of BK Virus. I don't know if there is one. My doctors chose to keep fighting even when the level was low. If the virus is active I think it's doing damage. Anyway, good luck. Your doctors should be willing to discuss all options with you. The response to BK was not set in protocol when I was undergoing treatment.

Latest Update From the Lab and Would the Reader...

OOPS!


I had an email tonight from a reader who after a successful transplant has been diagnosed with BK Virus. I made the mistake of opening her message while pouring Pinot Noir to 125 customers at a wine tasting tonight and accidentally deleted the message. So, if you sent me and email and didn't hear back, I apologize so much, I know it's a difficult thing to do. 


Please resend. I know the importance of communication. As I have said before, I never communicated with anyone who had PKD or BK Virus until I began blogging. So far Surviving PKD has had 10,621 pageviews, over 30 google searches in the last few days on issues such as weight gain with PKD, fistulas for dialysis, and yes, BK Virus.


My story continues on a positive track. Visits to the Dallas Transplant Center's clinic are now quarterly. The most recent was 4/17/12. Lab results were good. Hemoglobin is normal, blood pressure is under control, weight gain has stabilized, and creatinine is stable at 3.1. Which is not great, but it was as high as 5.8 during the onslaught of the BK Virus. I feel great. There are daily reminders of how sick I was during the last days of PKD and End Stage Renal Disease.


So, thank you for reading. If the blog has helped please let me know. If you have questions, please let me know. If you sent me an email today, please resend.


THANKS,
Dave.

Wondering Why After a Mild Cold

At some point I started noticing that when I get a cold, it goes away quickly. I don't seem to generate gallons of pflegm for days on end and wind up with a racking cough. I sneeze and sniffle for a day or two and then maybe wheeze a bit.


I also started noticing that paper cuts I get and work and nicks received from the kitchen knives don't seem to get as infected as much. They just heal over and that's that.


And then one evening a customer was asking me what might be in a specific wine that causes his wife to have an allergic reaction. (Allergies are a surprisingly common topic in wine departments, headaches are the most common symptom. No one suspects allergies when vodka or whisky is involved!) What was interesting here was that it was a specific vintage of a specific estate that was causing the problem.


The speculation was quick and wide ranging. P is a pretty smart guy, he's a Ph.D who's worked for a long time in the semiconductor industry. I mentioned my light response to colds and he proposed an interesting theory.


That the production of mammoth amounts of mucus is our immuno-reaction to the cold virus. Since my immune system is repressed by drugs so they won't attack my kidney, it doesn't have as much a response to the cold virus as a 'normal' system would have. 


I remember some horribly long asthmatic reactions previously to colds after my transplant, but those occurred during my initial levels of medication. When I encountered the BK Virus,  the dosages of immuno-suppression medications were radically reduced. The goal was to leave enough immuno-response to fight the virus, but not enough to fight the kidney. It was a tricky balance, but it seems to be working. 


And ESPECIALLY against the cold. And WITHOUT a huge, snotty, overly pflegmatic mess. Nice!


I then wondered if anyone else had noticed this same reaction, so I looked to the blog o-sphere and found a thread on a bulletin board named "I Hate Dialysis." The thread contains comments from a number of transplant patients who are surprised that they don't seem to get as sick as those around them.


The key seems to be finding the balance in the immuno-suppression medication. Which could be difficult. The doctors tend to over-medicate for obvious reasons. Under-medication results in rejection.

A Year Later

It's hard to believe that it's been a year since I posted.


Writing the blog came fast and furious in the year following the transplant. I was highly charged to relate my story. I wanted to spread the news of the miracle of transplant. I wanted to talk about my struggles with Polycystic Kidney Disease, End Stage Renal Disease and dialysis.


I had never been in contact with anyone who had had PKD Until I came home from my transplant and found an email from Amy about her husband Bruce's struggles with the same issues I had faced. Through my blog and the blogs of others we developed a small community in several states of people dealing with PKD and transplants.


Our blogs are now voices floating in cyberspace waiting to speak to those who search them out. And search them out they do. This blog has had more readers in the year of inactivity than in the years I was writing!


My posting did slow down after my story reached the transplant, but it picked back up after the BK Virus reared its head and I had another story to tell. And, after almost a year and treatment by reduced immuno-suppressants and Cidofovir infusions the BK count has been negative for over a year.


Now my health is good, well it's stable. The BK did its damage. Creatinine is steady but high 3.2% on the last lab, but better than it was a year ago. The Glofil test is slightly improved as well, but the kidney is still not functioning near 100%. Fluid retention is a problem and that's lead to weight gain, but energy and strength are good, better than they were in the 5-6 years before transplant.


Life is good. I am certainly in no position to complain. My natural organs failed over five years ago. It's a miracle to be alive!

BK Virus: Won the Battle but Lost the War?

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.

 

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.

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: 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: 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!

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!

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!

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!