I spoke with Kim today, my Transplant Coordinator, and my BK Virus levels have come down!
I just finished a 10 day course of Cipro, due to my BK levels rising (my CellCept has been on “hold” since July(?), and I’m only on Prograf for now). Cipro is believed to reduce viral replication, so it is being used by some Transplant Centers for BK reactivation. (BK virus is a virus found in 80% of the population, and only “flares up” with immunosuppression)
Last month, my serum (blood) level of BK Virus had increased to 2500. Now, I’m down to 800 copies of virus, and 226,o00 in my urine. I haven’t had a urine BK done in several months, and at the time, I was told it was >39 million copies. The nurse today told me it had been 739 million copies. Anyway, it’s decreased, and that’s all that matters. I’m getting another level in a month (blood only, since it’s in the urine first, and then the blood), so hopefully it will go down further.
I must admit that I got a little freaked this week, because I started reading too much. Keeping it in perspective, most of the articles are on patients who already have Nephropathy (kidney damage) from the virus; as far as I know, I don’t have any damage from it. I believe it was caught early; thank God that my Transplant Surgeons are compulsive, and screen for it every few months.
My Transplant Coordinator said that any of the treatments are pretty much guess work; some docs feel that the Cipro doesn’t do anything, and some feel it helps. Apparently, it worked for me, since this is the first month in the past 3 that the levels went down, and that was significantly (close to 70% reduction of the virus in my blood).
My creatinine remains at 1.2 (my baseline since transplant), and everything else looks good as well.
I had my yearly skin cancer screening with the Dermatologist, and didn’t have to have any moles removed. She did freak out a little when she saw my foot, though. My hereditary neuropathy (Charcot Marie Tooth) causes degeneration of the muscles and nerves in my arms and legs. I wear hard plastic orthotics that keep my foot from dropping, and allow me to walk with confidence. When I don’t wear them, I’m very tentative with walking, as my foot will drop without me knowing, and I’ll trip and end up on the floor. Years ago, I fractured the outside bone on my left foot, and there is a protrusion from the healed callous on the bone. Since my foot tends to have a lot of pressure on the outsides, I have a thick skin callous there on top of the bone callous. The problem is that I have no sensation in the foot, and am at risk for an ulcer (similar to a diabetic). She wants me to see the Orthopedic Surgeon to fix this, but after talking to my PCP, I decided I don’t want foot surgery. So I’ll call the guy who made my orthotics, and see if he can come up with a solution.
Keeping with the “Chronic Positivity” theme of this blog, I want to congratulate a young woman named Tedesha, who will graduate from college this month. I met her at our clinic 7+ years ago, when she came from outside the country to get treated for the first time for a devastating Dermatologic illness calledEpidermolysis Bullosa. She’s blind from the disease, so she deserves a lot of credit for overcoming a lot of adversity. (I had an update by the staff Dermatologist at my appointment)