Some weeks go by and I don't spend much time reflecting on my transplant. Life goes on a a seemingly normal pace.
But these weeks are rare.
Usually the transplant experience occupies a prominent place in my consciousness. As well it should. Reminders are constant, like being alive for starters. And being alive and not being tethered to a dialysis machine.
The symbology of Easter is always cause for reflection with its stories of death and renewal of life. Transplant surgery is by definition renewal of life. The drastic and extraordinary act of taking a vital organ from either a living or deceased donor and placing it in another body would not be undertaken unless the recipient was otherwise at the point of death. In my case it was "end stage renal failure."
End Stage. End of the line. Point of no Return.
Good Friday is always cause for encounter with grief. The music is monastic and medieval, the setting stark. As a chorister it is the most emotionally dynamic music we sing. Sadly, it has the smallest attendance of any of the Easter Week services in which we sing, but somehow that seems to intensify the spirituality and changes performance into emotion. Through life is death. Through death is life.
Ten years ago I finally began to accept the stark reality of my diagnosis and made an appointment with a vascular surgeon to create the fistula that would allow my veins to carry the increased blood flow necessary for dialysis. Dialysis which was always inevitable, but now imminent.
My nephrologist had told me to schedule the appointment eighteen months previous and had brought the surgeon in to see me while I was hospitalized for a blockage caused by my enlarged polycystic kidney. The date is anchored by the Texas Rangers failed pennant run which collapsed when Frankie Francisco threw the legendary chair into the stands in Oakland. 2004, look it up. We watched it in the hospital.
Of course, my response to my nephrologist was classic. I didn't see a doctor for the next eighteen months. I finally collapsed from anemia and spent two days in the ICU receiving blood transfusions and the next two weeks hospitalized.
Finally, in April 2006 I had vascular surgery to create my fistula.
The fistula matured for six months and was still developing when in November Dr. Rinner told me that while I had fought a valiant fight, it was time to start dialysis. Either that or wind up in the ER at some point during the holidays. My natural kidneys had failed. My options were dialysis or death.
Two years of dialysis were followed by a deceased donor transplant in November 2008;
Now, ten years later my strength and vitality surprise me every day. In 2006 I had no idea I was as sick as I was.
The fistula is still working and still maturing. My vein, which was deep and difficult to stick is now strong and prominent. It is my lifeline and constant reminder that everyday is a gift and a blessing.
Crux Fidelis, King's College, Cambridge.
Showing posts with label Kidney Transplant. Show all posts
Showing posts with label Kidney Transplant. Show all posts
Wednesday, April 6, 2016
Saturday, February 27, 2016
"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!
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!
Tuesday, September 16, 2014
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!
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!
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.
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!
Thursday, August 26, 2010
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!
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!
Saturday, June 19, 2010
It's Not a Rejection (But why don't I feel better?)
When I was a salesman, I hated making cold calls. I dreaded rejection. When I was a young man, I hated calling girls for dates. I dreaded rejection. In fact I still don't like making phone calls. Fear of rejection runs deep.
And now I live in Post-Transplant land and rejection has a whole new meaning.
The subtext of growing up in the 50's and 60's was the over-arching fear of nuclear war. In Post-Transplant land the subtext is fear of graft rejection. The walls of the Transplant Clinic are plastered with the signs of rejection: clammy hands, cold sweat, squeaky voice, stammering... No No NO! Stay focused. Repeat after me, "The signs of graft rejection are: pain in the area of the new organ, slight fever, decreased urine, rapid weight gain. If you notice these symptoms, Call the Clinic!"
Whatever the symptoms, all signs are ultimately confirmed by lab reports which show increased levels of creatinine in the blood. Which means the kidney ain't workin' as good as it should. So that was me, getting my labs back on Tuesday with creatinine level up to 2.2 (Normal is 0.2 to 1.2) The elevated result was confirmed by Thursday's labs.
And that was me, walking into the hospital early Friday morning for a Kidney Biopsy. A small amount of kidney tissue is removed which will tell the nephrologist exactly what's going on in the kidney so the doctor can make the proper diagnosis and prescribe the proper courses of treatment.
The procedure sounds a lot worse than it really is. A long needle with a grabber attachment is inserted into the kidney. It grabs a tissue sample which is removed. A local anesthetic is used to deaden the area. A sonogram is used to guide the procedure. Tension is way worse than the pain. I was alarmed and startled twice. First, when the tech asked for a Spinal Needle. (Yikes! I've heard horror stories about such things.) Second, when the doctor activated the grabber. It was very sudden, very loud and visceral. SNAPCLICK! And then it was over. Very quick and routine. I was not the first kidney biopsy nor the last for the lab today. I think they did four, back to back. All transplanted kidneys. (The photo is from the Columbia University fact sheet kidney biopsy patients.)
Then it was back to my room where I had to stay flat on my back for four hours, or until the blood cleared from my urine. (Bleeding issues are the most frequent and serious complication of the procedure.) I never did show any blood in the urine. By all means, schedule this procedure during World Cup and the US Open, especially if it's at Pebble Beach. Just me and the TV. Laid out with no interruptions except for the occasional nurse. Father's Day should be so good.
Dr. Melton came by late in the afternoon to discuss the findings. I sell wine, he buys wine. I'm always a lot more comfortable when our conversations are on my turf.
First the good news. He doesn't think it's rejection. (Eyes close. I enjoy a small smile while tension flows from my body.) Reality wakes me up. What's driving the loss of kidney function?
And the bad news. Have you ever heard of BK Virus? Neither had I. Well, it's pretty widespread. 80% of the population has it, but natural resistance is developed at an early age. It was first isolated in the urine of a post-renal transplant patient named B.K. in 1971. The use of immuno-suppressants as anti-rejection medications allows the virus to become active. And there's a special something that allows it to be especially active in renal transplant patients. It's always difficult to read these papers, but it looks like the virus becomes active in a relatively smallish percentage of patients and actually causes renal failure in a smallish percentage of the affected group. The virus can cause scarring of tissue throughout the urinary tract and in the kidney itself and can lead to kidney failure.
Hmm. Sounds like the same number games I encountered when I started learning about PKD. ONLY a smallish percentage of a smallish percentage are chosen. So, not only am I not rejected, I'm also a winner! Only being a winner with PKD and BKV is an extremely dubious distinction.
So, what can they do about BK Virus? Well, the problem is that it's a virus..... Everyone knows you can't treat a virus.
The first step is to reduce the dosage of immuno-suppressants. The goal is to fine tune the dosage level to prevent rejection, but allow the body's natural defenses to work. Dr. Melton game me instructions and I started with tonight's meds. Frequency of labs will be increased so we can monitor the effect. There are anti-viral medications that can be used down the line, but they have their own issues. The most desirable goal will be to find a dosage that will keep all factors in balance.
No one said it was easy. The last year of relatively carefree existence sure was sweet!
And now I live in Post-Transplant land and rejection has a whole new meaning.
The subtext of growing up in the 50's and 60's was the over-arching fear of nuclear war. In Post-Transplant land the subtext is fear of graft rejection. The walls of the Transplant Clinic are plastered with the signs of rejection: clammy hands, cold sweat, squeaky voice, stammering... No No NO! Stay focused. Repeat after me, "The signs of graft rejection are: pain in the area of the new organ, slight fever, decreased urine, rapid weight gain. If you notice these symptoms, Call the Clinic!"
Whatever the symptoms, all signs are ultimately confirmed by lab reports which show increased levels of creatinine in the blood. Which means the kidney ain't workin' as good as it should. So that was me, getting my labs back on Tuesday with creatinine level up to 2.2 (Normal is 0.2 to 1.2) The elevated result was confirmed by Thursday's labs.
And that was me, walking into the hospital early Friday morning for a Kidney Biopsy. A small amount of kidney tissue is removed which will tell the nephrologist exactly what's going on in the kidney so the doctor can make the proper diagnosis and prescribe the proper courses of treatment.
Then it was back to my room where I had to stay flat on my back for four hours, or until the blood cleared from my urine. (Bleeding issues are the most frequent and serious complication of the procedure.) I never did show any blood in the urine. By all means, schedule this procedure during World Cup and the US Open, especially if it's at Pebble Beach. Just me and the TV. Laid out with no interruptions except for the occasional nurse. Father's Day should be so good.
Dr. Melton came by late in the afternoon to discuss the findings. I sell wine, he buys wine. I'm always a lot more comfortable when our conversations are on my turf.
First the good news. He doesn't think it's rejection. (Eyes close. I enjoy a small smile while tension flows from my body.) Reality wakes me up. What's driving the loss of kidney function?
And the bad news. Have you ever heard of BK Virus? Neither had I. Well, it's pretty widespread. 80% of the population has it, but natural resistance is developed at an early age. It was first isolated in the urine of a post-renal transplant patient named B.K. in 1971. The use of immuno-suppressants as anti-rejection medications allows the virus to become active. And there's a special something that allows it to be especially active in renal transplant patients. It's always difficult to read these papers, but it looks like the virus becomes active in a relatively smallish percentage of patients and actually causes renal failure in a smallish percentage of the affected group. The virus can cause scarring of tissue throughout the urinary tract and in the kidney itself and can lead to kidney failure.
Hmm. Sounds like the same number games I encountered when I started learning about PKD. ONLY a smallish percentage of a smallish percentage are chosen. So, not only am I not rejected, I'm also a winner! Only being a winner with PKD and BKV is an extremely dubious distinction.
So, what can they do about BK Virus? Well, the problem is that it's a virus..... Everyone knows you can't treat a virus.
The first step is to reduce the dosage of immuno-suppressants. The goal is to fine tune the dosage level to prevent rejection, but allow the body's natural defenses to work. Dr. Melton game me instructions and I started with tonight's meds. Frequency of labs will be increased so we can monitor the effect. There are anti-viral medications that can be used down the line, but they have their own issues. The most desirable goal will be to find a dosage that will keep all factors in balance.
No one said it was easy. The last year of relatively carefree existence sure was sweet!
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