I hope posts like this continue to appear, but less and less frequently.
Went to the clinic bright and early this morning for my three month check-up, and everything was great! Cholesterol, sugar, red blood count, potassium, etc etc etc, all normal. Creatinine continues to be out of normal for anyone but me. It was down from last time (3.3 from 3.6) but the 3.6 was up from where it's been over the last year. So, normal for ME!
Note to anyone who has not read the blog. My transplanted kidney was damaged during my struggles with the dreaded BK Virus. Whether the damage is due to inflammation from the virus or from the neurotoxic drugs used to fight the virus is not clear, but whatever, the damage has been done. The good news is that the kidney function has been stable for sometime.
I was to have had the BK serum level checked, but lost my prescription and did not have the test performed. So I will get that taken care of next Monday on my day off. I'll post the results when I have them.
My next checkup will be in four months, that's March. 2013. That will be the day for my annual Glofil test which uses radioactive tracers to get an accurate measure of how well and kidney is clearing toxins.
Happy Holidays to All!!!
Showing posts with label Gamma globulin. Show all posts
Showing posts with label Gamma globulin. Show all posts
Tuesday, November 27, 2012
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, August 10, 2010
BK Virus: Having Pressed the Attack, Who Won?
So I arrived at the hospital, early for my appointment, armed with two new books, ready for a day of various infusions. Check in was smooth, apparently being setup as a serial patient means your paperwork stays done! Good news I guess... if it's good news being here that often. It was a busy day in the morning unit and surgical patients get the priority, so it was a while before the nurse came in to get things going. I should have had a clue about things to come when one of the bags said "Chemotherapy."
First up was a bag of saline to flush and hydrate the system. The nurse set the pump to dispense the bag in an hour and we were underway!
Next on was the Cidofovir, an anti-viral. It was set to drip through in two hours. This is the drug whose prime side effect is damage to the kidney. They kept close tabs on my condition, checking vitals frequently. Everything went smoothly and I was feeling fine.
Lunchtime came along with a turkey sandwich. There was another chair in the room and it was interesting visiting with my roommate and his wife. They'd gotten married when they got out of the Navy after the war and now live near a lake about an hour south of Dallas. They've been in and out of Baylor Hospital many times over the years, first for their children and more recently for his liver transplant, his battle with throat cancer and now his impending battle with lung cancer. He was in receiving two units of blood, his second treatment of transfusions. They've been lucky, she's had good insurance since her first job and doesn't know what they would have done without it. They worry about their son who has a small business with just two or three employees and there's just not enough money to cover the cost of insurance. So the son just does without.
When the Cidofovir was done, they emptied the previous bag of saline then began the IVIG (IntraVenous ImmunoGlobulin) infusion. (IVIG, that's what they call it, those in the know!) Because it was my first treatment, they took it slow, taking about three hours for the infusion. And that was it! They gave me the standard Out-Patient list of symptoms to look out for and I gone. Happy to be walking and stretching and getting the hell out of there.
The aches started about ten minutes from the house. It felt like when you're getting the flu. I was shaking and breathing heavily when I got home and the aching was really starting to hurt. I lay down on the bed hoping things would calm down, but the aching, shaking and breathing just intensified. I was feeling feverish and nauseous. I got up and called the nurse at the clinic and really don't remember much of that conversation. I remember she asked about my temperature. I remember saying that even if I could find a thermometer, I was shaking so hard the chances of getting it in my mouth were about as good as poking it in my eye!
After that clever retort, I headed to back to bed and managed to fall into a deep sleep. I awoke and the phone started to ring (or maybe it was already ringing.) It was Susan, calling from San Antonio, and she caught me at my absolute groggiest. I still hadn't reached the point of rationality. She had the good sense to call my sister who came over and sat with me. The shaking had stopped. I was able to drink some ginger ale and take some pain-reliever. The reaction had reached a plateau.
I thought I felt good enough the next morning to get dressed, scramble an egg and go to work. After wandering around like a zombie for an hour, I decided to go home, much to the relief of my coworkers. The rest of the day was spent with a splitting, throbbing headache which caused its own nausea which lasted through most of the next day. Three days later I almost feel normal.
So, which drug was the culprit?
Poking and googling points to the IVIG therapy. One study shows 83% of the patients reported headaches lasting from 4 hours to several days. Some were considered mild, most were described as having severe intensity with a throbbing, pounding, pulsating quality with some causing fever, nausea and vomiting. Sounds pretty familiar.
So, OK. Why wasn't I prepared?
I thought I'd done my research. But I really focused on the Cidofovir and that was my mistake. But the doctors didn't say anything about possible side effects from either drug. The infusion was under the supervision of a doctor, but all I saw was his/her name. Never had a chance to visit. The handout at discharge was generic and primarily concerned about infection.
Shoulda known better....
First up was a bag of saline to flush and hydrate the system. The nurse set the pump to dispense the bag in an hour and we were underway!
Next on was the Cidofovir, an anti-viral. It was set to drip through in two hours. This is the drug whose prime side effect is damage to the kidney. They kept close tabs on my condition, checking vitals frequently. Everything went smoothly and I was feeling fine.
Lunchtime came along with a turkey sandwich. There was another chair in the room and it was interesting visiting with my roommate and his wife. They'd gotten married when they got out of the Navy after the war and now live near a lake about an hour south of Dallas. They've been in and out of Baylor Hospital many times over the years, first for their children and more recently for his liver transplant, his battle with throat cancer and now his impending battle with lung cancer. He was in receiving two units of blood, his second treatment of transfusions. They've been lucky, she's had good insurance since her first job and doesn't know what they would have done without it. They worry about their son who has a small business with just two or three employees and there's just not enough money to cover the cost of insurance. So the son just does without.
The aches started about ten minutes from the house. It felt like when you're getting the flu. I was shaking and breathing heavily when I got home and the aching was really starting to hurt. I lay down on the bed hoping things would calm down, but the aching, shaking and breathing just intensified. I was feeling feverish and nauseous. I got up and called the nurse at the clinic and really don't remember much of that conversation. I remember she asked about my temperature. I remember saying that even if I could find a thermometer, I was shaking so hard the chances of getting it in my mouth were about as good as poking it in my eye!
After that clever retort, I headed to back to bed and managed to fall into a deep sleep. I awoke and the phone started to ring (or maybe it was already ringing.) It was Susan, calling from San Antonio, and she caught me at my absolute groggiest. I still hadn't reached the point of rationality. She had the good sense to call my sister who came over and sat with me. The shaking had stopped. I was able to drink some ginger ale and take some pain-reliever. The reaction had reached a plateau.
I thought I felt good enough the next morning to get dressed, scramble an egg and go to work. After wandering around like a zombie for an hour, I decided to go home, much to the relief of my coworkers. The rest of the day was spent with a splitting, throbbing headache which caused its own nausea which lasted through most of the next day. Three days later I almost feel normal.
So, which drug was the culprit?
Poking and googling points to the IVIG therapy. One study shows 83% of the patients reported headaches lasting from 4 hours to several days. Some were considered mild, most were described as having severe intensity with a throbbing, pounding, pulsating quality with some causing fever, nausea and vomiting. Sounds pretty familiar.
So, OK. Why wasn't I prepared?
I thought I'd done my research. But I really focused on the Cidofovir and that was my mistake. But the doctors didn't say anything about possible side effects from either drug. The infusion was under the supervision of a doctor, but all I saw was his/her name. Never had a chance to visit. The handout at discharge was generic and primarily concerned about infection.
Shoulda known better....
Thursday, August 5, 2010
BK Virus: 8.04
Fighting this damn virus is like herding cats. When one number is under control, another goes wacky. The strategy set one week is changed the next week as the numbers change. But the core element of the strategy is to prevent further damage to the grafted kidney, so as the kidney is threatened, there is less patience to let a treatment run a slower course.
It was good news/bad news at the clinic this morning. The cell count was down to 45,000, the lowest concentration of virus since it was first discovered. That's the good news. It could mean the reduction in immuno-suppressants is working and allowing the body to fight the virus. The bad news is that the creatinine level jumped to 3.0 after being level the last two visits. That probably means that the virus is scarring the delicate tissue of the kidney and preventing it from doing its job. It could also mean rejection, but there are no other symptoms, such as high temperature, rapid weight gain, pain in the grafted kidney, nausea and vomiting.
So Friday I'll check into the outpatient clinic at 7 am for a long morning of infusions. Two hours of saline provide a cushion for the infusion of Cidofovir, which is an antiviral whose main use to treat the symptoms of cytomegalovirus infection of the eyes in patients with acquired immune deficiency syndrome (AIDS). CM Virus is in the same family as BK. By all accounts the drug is pretty nasty stuff. Besides virus fightin' Cidofovir also destroys kidneys so the treatment is administered in low, carefully monitored dosages every two weeks. How many weeks? If I thought to ask I forgot the answer.
The Cidofovir will be followed up by an infusion of Gamma globulin which will shore up the stores of antibodies to help the body fight the virus. So after 5-6 hours of hanging around on an IV I'll either go to work or go home. (I'm hoping I feel up to going to work.) I go back to the clinic Tuesday to monitor the kidney function. And find out the next plan of attack.
From all I've read on the Internet, the incidence of BK Virus is a growing problem among renal transplant recipients. No one seems to know why. It is suspected that the main culprit is the increased effectiveness of new, more powerful immuno-suppressant drugs, most notably tacrolimus (Prograf) and myfortic acid (Cell-Cept and Myfortic). But there is still much to be learned. There are no established 'by the book' treatments. Everything is a touch experimental. I mean my situation is that we're using a drug developed to treat a virus that occurs in patients with AIDS that is a nephrotoxin (translation: kidney-poison).
What continues to surprise me is that I had not heard of the virus before I had it. I wrote in earlier blogs some rationale about why my clinic doesn't test for BK Virus, but at this point I have a hard time accepting it. If there is a serum test that can be administered before damage is done to the kidney, it seems it should be done. Once again the emotional logic of the patient runs into the cold logic and established points of view of the medical profession.
BUT.... if I were a new transplant recipient knowing what I know now, I would be asking about BK from day one.
Readers with new transplants, you KNOW who YOU ARE!
So Friday I'll check into the outpatient clinic at 7 am for a long morning of infusions. Two hours of saline provide a cushion for the infusion of Cidofovir, which is an antiviral whose main use to treat the symptoms of cytomegalovirus infection of the eyes in patients with acquired immune deficiency syndrome (AIDS). CM Virus is in the same family as BK. By all accounts the drug is pretty nasty stuff. Besides virus fightin' Cidofovir also destroys kidneys so the treatment is administered in low, carefully monitored dosages every two weeks. How many weeks? If I thought to ask I forgot the answer.
The Cidofovir will be followed up by an infusion of Gamma globulin which will shore up the stores of antibodies to help the body fight the virus. So after 5-6 hours of hanging around on an IV I'll either go to work or go home. (I'm hoping I feel up to going to work.) I go back to the clinic Tuesday to monitor the kidney function. And find out the next plan of attack.
From all I've read on the Internet, the incidence of BK Virus is a growing problem among renal transplant recipients. No one seems to know why. It is suspected that the main culprit is the increased effectiveness of new, more powerful immuno-suppressant drugs, most notably tacrolimus (Prograf) and myfortic acid (Cell-Cept and Myfortic). But there is still much to be learned. There are no established 'by the book' treatments. Everything is a touch experimental. I mean my situation is that we're using a drug developed to treat a virus that occurs in patients with AIDS that is a nephrotoxin (translation: kidney-poison).
What continues to surprise me is that I had not heard of the virus before I had it. I wrote in earlier blogs some rationale about why my clinic doesn't test for BK Virus, but at this point I have a hard time accepting it. If there is a serum test that can be administered before damage is done to the kidney, it seems it should be done. Once again the emotional logic of the patient runs into the cold logic and established points of view of the medical profession.
BUT.... if I were a new transplant recipient knowing what I know now, I would be asking about BK from day one.
Readers with new transplants, you KNOW who YOU ARE!
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