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.
Friday, February 11, 2011
Wednesday, February 9, 2011
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!!!
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!!!
Tuesday, January 18, 2011
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.
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.
Tuesday, January 4, 2011
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.
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.
Friday, December 10, 2010
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.
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.
Tuesday, December 7, 2010
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!
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!
Thursday, November 18, 2010
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!
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!
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