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!!!
Tuesday, November 27, 2012
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.
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.
Wednesday, August 22, 2012
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.
I'll let you know in the next post.
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.
Friday, May 4, 2012
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.
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.
Tuesday, May 1, 2012
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.
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.
Wednesday, March 14, 2012
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.
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.
Monday, February 13, 2012
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!
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!
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