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!!!

Is It Really that Bad?

Wow, the last post caused some concern.

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

Was I surprised?

No.

Was I disappointed?

Yes. 

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

BK Virus: Won the Battle but Lost the War?

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.