Life is always different when you look at it from Santa Fe. The clear air gives clarity to thought raising questions like, "What did I do in a previous life that means I live in Dallas rather than Santa Fe." Ok, ok. maybe it was something done or not done previously in this life, but that gets depressing real quick.
And BK Virus is not quite so depressing as it was a week ago. Life is really not any different. I don't feel different. I did find a blog that helped quite a bit. You'll find a link to it just to the right of this post. Chronic Positivity - Life with Polycystic Kidney Disease. Jeff is a nurse, his writing gets a little involved with lab numbers and such, but his judgement is sound. He battled PKD for a number of years and is two years post-transplant. He was diagnosed with BKV last summer and has been treating it for the last year and is now hopefully on a final round of antiviral.
I gained two things from Jeff's blog. The first is the surprising efficacy of Ciproflaxcin as an antiviral. It really knocked down the cell count of the virus. I'm going into the seventh day of treatment, Blood samples will be drawn next week and we'll have results a few days after that.
The second thing was that his clinic tests for BK Virus without waiting for symptoms. His creatinine level was 1.1. upon discovery, with the normal range of kidney function. Mine was 2.2, high, not alarming, but definitely showing a decrease in kidney function. My current feeling is that I would rather have been able to begin treatment earlier. I'll discuss this with Dr. Nesser on the next appointment and report in my next post.
Until then, I'm on vacation in Santa Fe and heading for the slick rock canyons of Utah and then on to the Great Salt Lake. Right now it's lunchtime and I'm thinking about a bowl of green chili stew.
Monday, June 28, 2010
Monday, June 21, 2010
BK Virus Day 6
So after hitting the clinic 3 times in the last three months, it's been 3 times in the last 6 days. Plus a day in the Outpatient Clinic at Baylor Hospital. Combined with the broken foot, the medical front is getting intense again.
A little good news for a change! Creatinine was down to 2.0 from 2.2. Don't know if it means anything, but it sure beats another increase. Everything else was in the normal range except the red blood numbers are a little low. So I need to eat more steak and creamed spinach, I can do that!
Had an interesting conversation on the suject with Dr. Nesser, he's the director of the Dallas Transplant Institute (DTI) clinic. (Dr. Melton, who performed the biopsy and met with me in the hospital is the head Nephrologist for the Baylor Transplant Program.) Dr. Nesser correctly assumed that I had been googling BKV over the weekend and was curious as to what I had learned. Evidently I passed the test and was relieved to find out that the information that I've propagated in the blog has been correct.
One point of clarification. Acquisition of the virus is usually accompanied by a mild cold after which antibodies are formed and the virus retreats to the urinary tract where it lies dormant until allowed to become active again by a round of immuno-suppressants. Thus BKV occurs mainly in kidney transplant patients and occasionally in HIV patients and bone marrow transplant recipients.
When researching it is important to look only at the most current studies. The field of inquiry is young and studies are usually limited to individual transplant clinics, so sample sizes are very small. Different clinics follow slightly different protocols, but results are about the same. For instance Dr. Nesser told me of a clinic that tests all patients regularly for BKV starting soon after transplant. Dallas Transplant Institute (my clinic) waits until the creatinine starts to increase to start testing. The early testing sounds like a good idea, but it's a lot more expensive and has not produced improved results. Bloodwork is a good indicator and works for measuring progress, but diagnosis can only be confirmed by a biopsy.
So for now I will be following Dr. Melton's course of treatment. He cut back my dosages of prednisone and Myfortic and left the Prograf intact for now. Dr. Nesser said that occasionally a mild urinary tract infection can aggravate the virus so he prescribed a regimen of an antibiotic to eliminate any possible infection.
We're heading out on the road to Santa Fe and Salt Lake City at the end of the week. When I get back I'll go the Outpatient Lab at Baylor for a blood draw and then a few days later (three weeks from today) I go back to the Dallas Transplant for another checkup and we will know if any progress has been made.
So. Everyone's up to date!
A little good news for a change! Creatinine was down to 2.0 from 2.2. Don't know if it means anything, but it sure beats another increase. Everything else was in the normal range except the red blood numbers are a little low. So I need to eat more steak and creamed spinach, I can do that!
Had an interesting conversation on the suject with Dr. Nesser, he's the director of the Dallas Transplant Institute (DTI) clinic. (Dr. Melton, who performed the biopsy and met with me in the hospital is the head Nephrologist for the Baylor Transplant Program.) Dr. Nesser correctly assumed that I had been googling BKV over the weekend and was curious as to what I had learned. Evidently I passed the test and was relieved to find out that the information that I've propagated in the blog has been correct.
One point of clarification. Acquisition of the virus is usually accompanied by a mild cold after which antibodies are formed and the virus retreats to the urinary tract where it lies dormant until allowed to become active again by a round of immuno-suppressants. Thus BKV occurs mainly in kidney transplant patients and occasionally in HIV patients and bone marrow transplant recipients.
When researching it is important to look only at the most current studies. The field of inquiry is young and studies are usually limited to individual transplant clinics, so sample sizes are very small. Different clinics follow slightly different protocols, but results are about the same. For instance Dr. Nesser told me of a clinic that tests all patients regularly for BKV starting soon after transplant. Dallas Transplant Institute (my clinic) waits until the creatinine starts to increase to start testing. The early testing sounds like a good idea, but it's a lot more expensive and has not produced improved results. Bloodwork is a good indicator and works for measuring progress, but diagnosis can only be confirmed by a biopsy.
So for now I will be following Dr. Melton's course of treatment. He cut back my dosages of prednisone and Myfortic and left the Prograf intact for now. Dr. Nesser said that occasionally a mild urinary tract infection can aggravate the virus so he prescribed a regimen of an antibiotic to eliminate any possible infection.
We're heading out on the road to Santa Fe and Salt Lake City at the end of the week. When I get back I'll go the Outpatient Lab at Baylor for a blood draw and then a few days later (three weeks from today) I go back to the Dallas Transplant for another checkup and we will know if any progress has been made.
So. Everyone's up to date!
Sunday, June 20, 2010
Father's Day: in a Reflective Mode
Enjoying a peaceful Father's Day. No one here but myself. Michael called from his backyard in Santa Fe, enjoying their garden. While we talked he was watching a huge black and yellow butterfly flit about three feet in front of him. It's blazing hot in Dallas today. That butterfly would spontaneously self-combust if it were here. Susan's at the Natural History Museum in New York. Travis is working on his Math dissertation at his apartment in Brooklyn. They're meeting up with friends for dinner somewhere in New York. I'm drinking a beer and flipping between the Open at Pebble Beach, the World Cup and a baseball game.
And thinking about the last couple of weeks.
Heard talk on the radio the other day about how it was 16 years since the big OJ Simpson chase across Los Angeles. I remember that well. We watched it from a New York City hotel room while the family was on a choir trip. It was on that trip that I discovered I had super high blood pressure and PKD began to have a dramatic affect on my life. Up until then I had thought of my life as normal.
I went back and read all my postings on this blog last night and after I got over the many minor edits and the goofy spacing Google Blogger puts between paragraphs that have to be deleted to make it look halfway decent, I decided I rather liked a lot of the things I said. I really did give short shrift to the time spent on dialysis and I need to work on that. When I've tried to write on dialysis it always turns into informational reporting. Which would be good except that I'm just drawing on information that's already out there on the web. There's a gillion web sites, doctors, nurses, dieticians, handouts and posters that tell why it's a bad idea to eat foods high in potassium and things like that. My writing is at its best when the information comes from personal experience, and that's been difficult.
But what really stood out was the period of denial and uncertainty when I was fighting a tendonitis of the achilles which wouldn't heal because of the aggravated swelling caused by the chronic kidney disease. I limped around in a walking boot for months in a state of constant pain and exhaustion. The future of dialysis and transplant was dark, murky and uncertain.
Now I've been limping for a couple of weeks. It was something of a relief to find out that the cause is a broken bone which has a finite period of healing. The BK Virus is another thing. It's a threat to the graft and the treatment is filled with uncertainty. Treatment is more successful than it used to be, but it's nowhere near 100%.
The combination of the limp and the virus creates a veil of depression and the temptation is to succumb. To some degree I have over the last few days. It shows when I step on the scales in the morning. But to yield to depression is the easy path. I have to remember that I've been living in open ended stoppage time for the last three and a half years. Each setback has to be a path to a new well of strength.
Well, I guess the blog just got personal again.
And thinking about the last couple of weeks.
Heard talk on the radio the other day about how it was 16 years since the big OJ Simpson chase across Los Angeles. I remember that well. We watched it from a New York City hotel room while the family was on a choir trip. It was on that trip that I discovered I had super high blood pressure and PKD began to have a dramatic affect on my life. Up until then I had thought of my life as normal.
I went back and read all my postings on this blog last night and after I got over the many minor edits and the goofy spacing Google Blogger puts between paragraphs that have to be deleted to make it look halfway decent, I decided I rather liked a lot of the things I said. I really did give short shrift to the time spent on dialysis and I need to work on that. When I've tried to write on dialysis it always turns into informational reporting. Which would be good except that I'm just drawing on information that's already out there on the web. There's a gillion web sites, doctors, nurses, dieticians, handouts and posters that tell why it's a bad idea to eat foods high in potassium and things like that. My writing is at its best when the information comes from personal experience, and that's been difficult.
But what really stood out was the period of denial and uncertainty when I was fighting a tendonitis of the achilles which wouldn't heal because of the aggravated swelling caused by the chronic kidney disease. I limped around in a walking boot for months in a state of constant pain and exhaustion. The future of dialysis and transplant was dark, murky and uncertain.
Now I've been limping for a couple of weeks. It was something of a relief to find out that the cause is a broken bone which has a finite period of healing. The BK Virus is another thing. It's a threat to the graft and the treatment is filled with uncertainty. Treatment is more successful than it used to be, but it's nowhere near 100%.
The combination of the limp and the virus creates a veil of depression and the temptation is to succumb. To some degree I have over the last few days. It shows when I step on the scales in the morning. But to yield to depression is the easy path. I have to remember that I've been living in open ended stoppage time for the last three and a half years. Each setback has to be a path to a new well of strength.
Well, I guess the blog just got personal again.
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!
Thursday, June 17, 2010
Fear of Rejection, More than Just a 'No'
Hello again. Seems like life's been real normal lately. The weeks have their routine and seem to slip by ever so quickly. It's been a long time since I went eight months with only 3 doctor visits.
Until a couple of weeks ago. I somehow hurt my foot moving case stacks of wine around the store. After a couple of days of limping through increasing pain I waved the white flag and sought medical attention. The doc at the 'urgent care clinic' noted my history of ESRD and and said she would look closely for a fracture due to the possibility of ESRD related osteoperosis. After the X-ray she said there was nought but contusion, gave me an ankle brace and said to take two tylenol and come back the following week.
Skip forward a couple of weeks to my three month check up at the Transplant Clinic. It was time for my annual bone density scan which showed that my bone density has actually increased over the last year (4% in the hip bones!) So much for notions of osteoperosis.
The doctor wanted to x-ray the foot to make sure the swelling was injury related and not kidney-related edema and sure enough, there was a small fracture in the first metatarsal. Which didn't come as a surprise since the foot was still painful and extremely resentful of being strapped into a shoe! (In defense of the first doctor, the foot was really swollen and the fracture is tiny which no doubt made it difficult to read the x-ray.)
But of much more serious concern was the elevation of creatinine in the blood. It was up three months ago and mo' up on this visit. Tested twice, with consistent results. (For the record 1.7 in March, 2.2 in June.) A sonogram test this week showed good blood flow through the kidney. There was a thought that I might be slightly dehydrated, so I drank gallons over the next couple of days before labs today. But the results showed no change.
So, tomorrow the fun starts. I check into the outpatient lab for a biopsy of the kidney to see just what's going on. The biopsy is taken with a large needle guided by the light of the sonogram under a local anesthetic. I'll be held for a few hours to make sure there's no bleeding and then be released in the afternoon. The treatment plan will be determined by what the biopsy reveals. Apparently different types of rejection show different types of cell structure. For information (and photos!) follow this link.
So, that's the up-to-the-minute situation. Will post as soon as I know something new!
Until a couple of weeks ago. I somehow hurt my foot moving case stacks of wine around the store. After a couple of days of limping through increasing pain I waved the white flag and sought medical attention. The doc at the 'urgent care clinic' noted my history of ESRD and and said she would look closely for a fracture due to the possibility of ESRD related osteoperosis. After the X-ray she said there was nought but contusion, gave me an ankle brace and said to take two tylenol and come back the following week.
Skip forward a couple of weeks to my three month check up at the Transplant Clinic. It was time for my annual bone density scan which showed that my bone density has actually increased over the last year (4% in the hip bones!) So much for notions of osteoperosis.
The doctor wanted to x-ray the foot to make sure the swelling was injury related and not kidney-related edema and sure enough, there was a small fracture in the first metatarsal. Which didn't come as a surprise since the foot was still painful and extremely resentful of being strapped into a shoe! (In defense of the first doctor, the foot was really swollen and the fracture is tiny which no doubt made it difficult to read the x-ray.)
But of much more serious concern was the elevation of creatinine in the blood. It was up three months ago and mo' up on this visit. Tested twice, with consistent results. (For the record 1.7 in March, 2.2 in June.) A sonogram test this week showed good blood flow through the kidney. There was a thought that I might be slightly dehydrated, so I drank gallons over the next couple of days before labs today. But the results showed no change.
So, tomorrow the fun starts. I check into the outpatient lab for a biopsy of the kidney to see just what's going on. The biopsy is taken with a large needle guided by the light of the sonogram under a local anesthetic. I'll be held for a few hours to make sure there's no bleeding and then be released in the afternoon. The treatment plan will be determined by what the biopsy reveals. Apparently different types of rejection show different types of cell structure. For information (and photos!) follow this link.
So, that's the up-to-the-minute situation. Will post as soon as I know something new!
Subscribe to:
Posts (Atom)
