Home > April 2010, Health > Transplant Anniversary, BK Treatment

Transplant Anniversary, BK Treatment

Happy Kidney-versary to me; it will be my 2 year anniversary of my transplant on Monday!

I had my quarterly Transplant follow up today with the Surgeon (Dr. Maloo) and Nephrologist (Dr. Schultz).

Dr Maloo was a bit miffed that I hadn’t been treated yet for the BK virus (other than the course of Cipro last Fall).  I’ve been BK + since last July, and have been off CellCept since then.

So, today I start Leflunomide. This is a drug used for Rheumatoid Arthritis, but also has anti-viral properties.  It’s also starting to be used for BK Nephropathy (damage to the kidney from BK virus).  While it’s not know if or how much damage I have from BK, I think that Dr. Maloo is using this since the virus is remaining in my blood, although at a low level (with higher viral levels in the blood, they treat with IV Cidofovir).  For those following my blog that are interested in more detail, the dose is 100 mg for 3 days, then 20 mg daily.  I had a BK level done today, but it’s not back yet from the lab. I also have an ImmuKnow Immune Cell Function pending as well.  This is done in order to get an idea of the level of immunosuppression. Much like a Hemoglobin A1C for diabetics, this test gives an overall idea of my level of immunosuppression over the past few months.  From what I gather, it’s a way for the docs to also monitor those who aren’t compliant with their medication (some will start taking their meds a few days before labs and then stop for awhile).

I was the last appointment of the morning, so Dr. Maloo was sort of rushed.  I discussed my dialysis fistula with him, because lately, it’s gotten much larger, and I get some intermittent pain with it.  At the time of my transplant, I was scheduled to have a balloon fistuloplasty/stenting done, because there are areas of stenosis (narrowing) along the fistula.  This causes other areas behind the stenosis to get larger.  Dr. Maloo was in full agreement that I should keep the fistula, in case I need it in the future; fistulas are usually good for 20-30 years if properly cared for (his colleague wanted to “tie it off” when it became a problem).  Another reason I want to keep it is because I am able to draw my own labs from the fistula.  This is very important, because the veins in the other arm suck, and with getting monthly labs, that will quickly turn into 1 big monthly ordeal.  I’m hoping my kidney lasts my lifetime (or at least until retirement), but there is always the possibility it won’t.  If I had to do dialysis again, there wouldn’t be many more options for another fistula site (other then my thighs), so keeping this is best.  I had asked him to have it fixed, thinking the Interventional Radiologist would balloon and stent (similar to what they do with people whose heart arteries are blocked), but he thought I meant surgery.  He said my idea was ok, but after thinking about it, I’m going to wait until my next appointment in July to discuss my options; surgery to fix it may be better in the long run.  Having it stented in IR would run the risk of an infection at the stent, so I’m leaning more towards surgical repair.

I also had my first appointment with the new dentist today.  I had a filling that fell out and broke part of my tooth, and will probably need a root canal.  That will be done this summer (unless I have problems beforehand) and he also prescribed a prescription toothpaste with a higher concentration of fluoride to use once at night (and use regular toothpaste in the morning).

Despite the BK, everything is going well, and hopefully the Leflunomide with put the BK virus in remission.

For those whose immune systems aren’t suppressed, you probably have BK virus dormant in your kidney as well (it’s a respiratory virus that most get as a child). The difference is that a non-suppressed immune system will keep it dormant.  This is similar to chicken pox-once you have it, it’s dormant in the nerve tracts (reactivation of chicken pox virus is called Shingles).

Labs:

Creatinine         1.1
Prograf            9
PTH                72
Hemoglobin         13.4
Immune Cell Function:     Pending
Serum BK Virus        Pending

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  1. Molly
    May 18, 2010 at 4:57 pm

    i am overwhelmed! Do not like what i am reading, and do not know what BK is??
    Thank you for your blog.

    • May 18, 2010 at 6:43 pm

      Hang in there Molly.

      BK virus is a virus that most people have; when the immune system is suppressed, it multiplies and can cause damage.

      It’s a Polyoma virus, and the initial infection is thought to be in childhood, presenting as a respiratory illness. After infection, it goes dormant in the urinary tract. It’s “cousin” is JC virus, which is also a respiratory infection. JC goes dormant in the brain. When it reactivates, that is known as PML.

      Most likely, many kidney transplants were lost due to BK virus. Doctors would think that the patient was rejecting the kidney, so they gave massive doses of steroids. This further lowers immunity, thus allowing the virus to replicate even further.

      If your Transplant doctor is not screening for BK virus, INSIST THAT THEY DO.

      I had low levels in my blood, and by not taking CellCept, it backed off, but was still at low levels in my blood. I took Cipro, which seemed to help a bit, but not totally. Recently I started Leflunomide, which has antiviral properties, and will often put the BK back into dormancy. Time will tell.

      Think of the BK virus in terms of the chicken pox virus: both never leave your body after infection, and both can reactivate later on. The difference is that BK requires suppression of the immune system to reactivate, and causes damage to the urinary system. Chicken pox virus (Varicella/Herpes Zoster) usually reactivates with stress, is dormant in nerve tracts, and causes Shingles when reactivated. Hope this helps.

  2. Molly
    May 18, 2010 at 8:27 pm

    Thanks, I am looking for a transplant process because I dont think I can take the dialysis routine

  3. May 18, 2010 at 10:00 pm

    Good luck. I was listed prior to dialysis. I only did 9 months of dialysis, but can certainly understand you wanting to get off of it.

    I feel SO much better with my new kidney. Yes, there are risks, but for me, the quality of life was well worth the trade off.

    Some things to look for in a transplant program: do they use Tolerogenic Immunosuppression? (minimal steroids) Do they screen for BK virus? What meds do they use for immunosuppression? (the usual meds for Tolerogenic Immunosuppression are Prograf and CellCept).

    There is an excellent group on Yahoo that will answer many of your questions: http://health.groups.yahoo.com/group/kidney_transplants/

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