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!

PKD: Options. Anyone? Anyone?

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

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

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

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

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

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

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

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

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

The New Base Line

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

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

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

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

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

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

Here's to Stability!!!