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.
Friday, December 10, 2010
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!
Wednesday, November 3, 2010
Beginning Year 3 Post Transplant
It was between verses of the last hymn Sunday as we (the choir) stood alongside the congregation that I realized that I had just passed the second anniversary of my transplant. It was strange that I hadn't been aware of the date as the first anniversary had been such a huge emotional event for me. It's not that I just forget about it, but rather that being a transplant recipient has become an integral part of the natural fabric of my life.
So rather than look back a second anniversary, I will look ahead to beginning year 3.
Besides, the big date this year was turning 60 a few weeks ago. Ouch, that hurt. 60 might be the new 50 and that's middle age, but 70 is next and that just damned old!
BK Virus is still the medical news. The number of copies in the serum tests have been as high as 3150 and the last number was 650, a new low. Had a Cidofovir infusion today and will repeat in two weeks before I see the doctor again and get results. They also doubled my leflunomide prescription to see if we can get this thing eradicated.
Yikes, the nurse today was so stiff. Today was the third infusion he's administered and the second in two weeks. Yet he never smiled or showed any sign of recognition. Jeez! I work retail and remember customers and I see way more customers than he sees patients! Other nurses greet me by name so it doesn't seem so unreasonable...
Anniversary also means it's time for a Glofil test. Glofil gives a detailed look at the Glomular Filtration Rate which is the ultimate measure of kidney function. Hydration is the name of the Glofil game. Preparation involves drinking water until it's leaking out your ears and then ingesting an Iodine stain and receiving an injection of radioactive sodium iothalamate. Then as you drink more water over the next three hours, blood draws and urine collections measure how well the kidney filters the solution out of the blood. Dallas Transplant administers the test several times during the first year post transplant, then it's done on an annual basis after that. I'll get the results when I go back to the clinic in a couple of weeks.
So rather than look back a second anniversary, I will look ahead to beginning year 3.
Besides, the big date this year was turning 60 a few weeks ago. Ouch, that hurt. 60 might be the new 50 and that's middle age, but 70 is next and that just damned old!
BK Virus is still the medical news. The number of copies in the serum tests have been as high as 3150 and the last number was 650, a new low. Had a Cidofovir infusion today and will repeat in two weeks before I see the doctor again and get results. They also doubled my leflunomide prescription to see if we can get this thing eradicated.
Yikes, the nurse today was so stiff. Today was the third infusion he's administered and the second in two weeks. Yet he never smiled or showed any sign of recognition. Jeez! I work retail and remember customers and I see way more customers than he sees patients! Other nurses greet me by name so it doesn't seem so unreasonable...
Anniversary also means it's time for a Glofil test. Glofil gives a detailed look at the Glomular Filtration Rate which is the ultimate measure of kidney function. Hydration is the name of the Glofil game. Preparation involves drinking water until it's leaking out your ears and then ingesting an Iodine stain and receiving an injection of radioactive sodium iothalamate. Then as you drink more water over the next three hours, blood draws and urine collections measure how well the kidney filters the solution out of the blood. Dallas Transplant administers the test several times during the first year post transplant, then it's done on an annual basis after that. I'll get the results when I go back to the clinic in a couple of weeks.
Friday, September 10, 2010
For Those Living Without a Net
We ran into some friends at the store last Sunday. She used to teach with Susan but took a position at another school and they drifted into different circles. After a few minutes of high spirited catching up, her face got serious and she broke the news. She had been diagnosed with breast cancer and would be having surgery, a lumpectomy, on Friday morning. In just a few hours actually as I write late Thursday night.
"It's no big deal," she said. "They'll do the surgery, blast me with a treatment of radiation and that should be it."
"Oh no," I said. "Anything like that really is a big deal."
But I didn't push it.
She is going into the surgery and treatment with a strong show of laughter and optimism, determined to conquer the disease with the sheer strength of her will. I hope she can maintain.
My cousin had a debilitating hemorraghic stroke several years ago. She was feeling bad, went to the doctor and was found to have extremely high blood pressure. The stroke hit before they had totally found the right combination of drugs to keep it under control. She's lucky to be alive, though it's not every day that she considers it luck. The left side of her body is still paralyzed.
Yet her struggles to regain a semblance of normal life have been heroic. She now drives and has returned to teaching school. She swims, rides horses, and even skis and blogs. You can read her story here My Stroke of Fate or click on the link to the right.
When the BK Virus was causing increasing kidney failure and I was going in for the first treatment of Cidofovir and immuno globulin, he once again joked about me one-upping him again. His concern for my condition was real.
But there is a big difference between my situation and his. If the BKV wins and causes the failure of my grafted kidney, I just go back on dialysis. Life's routines change, but the quality of life is still good. We joke, but I've got a safety net. He's working without a net.
"It's no big deal," she said. "They'll do the surgery, blast me with a treatment of radiation and that should be it."
"Oh no," I said. "Anything like that really is a big deal."
But I didn't push it.
She is going into the surgery and treatment with a strong show of laughter and optimism, determined to conquer the disease with the sheer strength of her will. I hope she can maintain.
* * * * *
Yet her struggles to regain a semblance of normal life have been heroic. She now drives and has returned to teaching school. She swims, rides horses, and even skis and blogs. You can read her story here My Stroke of Fate or click on the link to the right.
* * * * *
Another good friend, a colleague of mine, has been battling colon cancer for a number of years now. He was diagnosed about the same time that my Polycystic Kidney Disease was getting bad enough to impose its presence on my stubborn consciousness. For a while we would kid ourselves that we were just trying to stay sicker and more critical than each other. But his cancer kept metastasizing, first in his lungs, then his liver, then his liver again. Each of these stages was treated with chemotherapy and radiation and he was pronounced clear of all but the last attack on his liver.
The chemotherapy is not working so well this time, but he is a stubborn fighter.
The chemotherapy is not working so well this time, but he is a stubborn fighter.
* * * * *
When the BK Virus was causing increasing kidney failure and I was going in for the first treatment of Cidofovir and immuno globulin, he once again joked about me one-upping him again. His concern for my condition was real.
But there is a big difference between my situation and his. If the BKV wins and causes the failure of my grafted kidney, I just go back on dialysis. Life's routines change, but the quality of life is still good. We joke, but I've got a safety net. He's working without a net.
* * * * *
I remember years ago when we first encountered the severity of PKD. It was a scolding from the doctor we consulted for a second opinion when I faced my first kidney surgery. "The kidneys are already virtually useless," he told us. "Don't you know you have a progressive, uncurable fatal disease." No, we didn't know that, and crept in tears and fear to our car and back to work.
The shock was intense, but faded over time, only to return with a sense of anger and futility each time the disease reared its ugly head. But I've always had confidence and my strong sense of denial has enabled me to stay positive in the face of the negative prognosis.
My friends with cancer and my cousin with her stroke have no doubt had many moments of shock, anger and grief over the blows that life has dealt them, but they have battled back with great showings of confidence.
* * * * *
We heard about another old friend a few weeks ago. He and his wife and children (who were about the same age as our children) had moved back north a number of years ago. With no apparent illness beforehand, he died in his sleep of a massive heart attack.
Boom. Just like that.
Thursday, September 9, 2010
BK Virus: 9.8 Treatment Continues
Another early morning rainy drive. This time through a heavy downpour as the remains of Hurricate Hermine pass through North Texas. As I'm about to turn towards the hospital parking, I remember that that's where I went yesterday for another infusion and today I'm going to the transplant clinic for followup.
Yesterday the Cidofovir infusion had gone smoothly with no incident and I was out by lunchtime. Today I found out some results, with more good news. The number of copies of the virus was down to 850! A considerable improvement from 3,150 two weeks ago and from the initial count of 497,000 back in June. The blood test is drawn BEFORE the infusion, so the number is the result of the last treatment. We'll know the effects of yesterday's treatment when blood is drawn before the next treatment in two weeks.
Everything else is stable. Creatinine was up a little at 3.3, but Dr. Nesser was not too concerned. Blood pressure is up, so he is restarting one of the blood pressure meds that had been put on hold. Hemoglobin and Red Blood cell numbers are both up. Still low, but improving, so the Procrit injection was put on hold again.
All in all a good day, with steady improvement in the fight against the virus. I was a surprised that the creatinine wasn't better. I've sure been feeling a lot better the last couple of weeks with a lot more energy.
Yesterday the Cidofovir infusion had gone smoothly with no incident and I was out by lunchtime. Today I found out some results, with more good news. The number of copies of the virus was down to 850! A considerable improvement from 3,150 two weeks ago and from the initial count of 497,000 back in June. The blood test is drawn BEFORE the infusion, so the number is the result of the last treatment. We'll know the effects of yesterday's treatment when blood is drawn before the next treatment in two weeks.
Everything else is stable. Creatinine was up a little at 3.3, but Dr. Nesser was not too concerned. Blood pressure is up, so he is restarting one of the blood pressure meds that had been put on hold. Hemoglobin and Red Blood cell numbers are both up. Still low, but improving, so the Procrit injection was put on hold again.
All in all a good day, with steady improvement in the fight against the virus. I was a surprised that the creatinine wasn't better. I've sure been feeling a lot better the last couple of weeks with a lot more energy.
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!
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