October 2010 BK Virus/Transplant Update

Busy end of summer, so I missed posting last month. I’ve had 2 straight months of negative BK in my blood, so next month, they will just  check the BK level in my urine.  I’m still on the Leflunomide; not sure how long I’ll be on that.

I had my quarterly appointment with the Transplant Surgeon and Transplant Nephrologist 2 weeks ago, and everything else is fine.

I did discuss the surgery to revise my dialysis fistula, and I decided to not go through with it yet, as it’s not causing any problems; it’s just huge, bumpy, and curvy-I can live with that.

My creatinine is holding stable at 1.1, and my blood counts are fine.  My urine protein and creatinine are still slightly elevated, but the Nephrologist wasn’t at all worried about it.  See the image below.

In other news, I’ve been walking without my AFO’s (ankle foot orthoses),and that’s been rough. I was stepping over something, came down on the forefoot, and my orthotic cracked.  I went to the Orthotist, and he temporarily fixed it, and fitted me for a new one.  The new orthotic won’t be ready until next week or the week after, and being that I’ll be on my feet a lot at work this weekend, I’m not wearing the AFO’s in case the fix doesn’t hold.  I can get by without them, but I’m likely to trip, and without them, my knees are starting to bother me as I don’t have the support of the AFO’s, and thus my knees are in a different position than when I wear them.

We live in a rural area, so we tend to put a lot of miles on our vehicles.  My wife only drives about 3 miles each way to work, but I drive 23 miles each way.  Thus, I tend to keep our vehicles until they die.  My 17 year old Chevy Astro (with 206k miles) finally went to it’s eternal rest, so we just bought a 2008 Chevy TrailBlazer with 18k miles on it.  It’s nice to once again ride in style.  In addition, it has 4 wheel drive, which will be useful when I have to go to work in the snow.

‘Til next month……

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

Attitude Is Everything

As many of my readers know, I work in a large Pediatric clinic, and we share space with a Family Practice clinic.

Yesterday, one of my Family Practice co-workers asked me to speak to a 70 year old gentleman who has many health problems, who is “considering” getting a fistula for dialysis.  He’s ruled out getting a transplant, although he tells me his Nephrologist is encouraging him to do so.

I say considering, because he’s very down and discouraged over his overall situation.  He tells me that he had a quadruple bypass 2 years ago, and told me he will no longer shoot his shotgun because he’s afraid his sternum will rip open at the surgical site from 2 years ago (it won’t; they wire it shut, and the bones are already healed).  He has vision problems, and nerve damage to his non-dominant arm from the surgery.  His wife of 52 years was with him, and her eyes were red (I assume from crying).

I explained what a fistula is and why he needs one; a catheter is a poor choice for dialysis and only used as a temporary fix or as a last resort.  Of course, I was upbeat about the process,  as I truly believe that he will feel so much better once he starts dialysis (he didn’t say at what point he is at with his kidney failure). Compared to my other surgeries, fistula surgery was not that big a deal, as it didn’t even require general anesthesia for me; I stopped at McDonalds for lunch on the way home from the hospital.

Granted, dialysis is no walk in the park, but it sure beats the alternative.  During my 9 months on dialysis, I saw a wide spectrum of reactions to dialysis, just as there is a spectrum of how people deal with day to day life. For me, dialysis allowed me to feel SO much better, so it helped me greatly (and the transplant had exponentially even more of an effect).

I’ve had my share of medical “speed bumps”, but as you know, I’ve used my attitude and determination to overcome them. I have pain every day from neuropathy (hereditary), but don’t even think about, and rarely take pain meds (unless it gets bad)

But I could tell he’s a long way off from “believing”.   I do think that our talk did help his wife somewhat, and told both of them not to hesitate to contact me if they had any questions or needed to talk.
So for those of you who tend to have a bleak outlook, just remind yourself,  as I always do:  there is always someone worse off than yourself.  If I were this gentleman, I would be thinking of the people who go through life paralyzed, who have terminal cancer, who have mental illness that makes them outcasts in society through no fault of their own…

The key to dealing with chronic illness, enjoyment of day to day living, and survival is to be positive.  It’s an attitude that’s sometimes difficult to maintain at times, but one worth striving for.

Note: I met this gentleman not in the course of work, (I was never involved in his care, as I work in Pediatrics) and am not disclosing his name, so I feel comfortable that I am not breaching confidentiality, and only know the details above based on what he and his wife told me. I wish them both well.

Labs and Today’s Office Visits

I had labs yesterday and office visits with the Transplant Nephrologist and Transplant Surgeon.

My labs are excellent. My Prograf level is within the expected 8-10 range, Hemoglobin is up to 10.6 (up almost 1 gram since starting Procrit 2 weeks ago), creatinine is 1.2,  Magnesium is normal (although I’m on 3 doses/day), Platelet count still normal but creeping downward, PTH elevated but lower than before transplant, Iron a little lower but not problematic, and my Lipid panel is excellent; cholesterol is 104.

As for the visit, I first saw the surgeon (Dr. Varma). I did ask about the stent needed for my fistula, and he called in the other surgeon who is the fistula “expert” (Dr. Kotru).  He explained that since it still has the “buzz” that can be felt, he would suggest it be left alone. Stenting it would predispose it to clots, and being that I’m not on dialysis, it’s an unnecessary risk. He also gave me the option of having it tied off (“ligated”). I would consider that, but I use it for drawing blood and would prefer to keep it for now. He was fine with that, and further explained that since my fistula is so well developed all the way up to my shoulder, if I did  have it ligated, he would need to remove the whole vein. In those with fistulas that are not prominent, this is not necessary. You may remember that the surgeon who did my transplant wanted to eventually ligate it after about a year. I forgot to ask about this, but since Dr. K is the fistula “expert”, I have faith in his opinion (and after all, different doctors have different approaches and opinions).  As for the rest of the visit, Dr. Varma was very happy with the way things are going.

The Transplant Nephrologist was also happy with my progress. He ordered the Procrit, and said that I will probably only be on it for a little while longer. He also said my PTH will probably come down over time. I like the way he did the visit; he turned the computer screen towards me so that I could see everything he was typing in. His rationale is that if I had a question, I could ask it right then and there. So many people leave the office with a misconception, and worry needlessly about something, and their perception is not correct. I like this openness. His theory is that he is up front with the patient about everything, and will then at least have a plan on dealing with it, rather than hiding anything.

The nurse managing my Procrit called yesterday. Although my Hemoglobin is coming up, it’s still under 11, so they increased the dose 15% to 11,500 units weekly. I’ll have my hemoglobin checked in 2 weeks again, and my Transferrin Sat/Iron studies in 1 month.

I just have to be careful that I don’t overextend myself. I’m back to work full time, and working my weekend job as well.  I feel so much better, and am trying to do a lot. I’ve decided to pace myself and prioritize. This week won’t work with that, as I’m at work until 9 tonight (started at 8:15 today with my appointments and then right to work) and am  here from 8am-9pm tomorrow night as well. We have a training both nights, which is why I’m working so long.  I did go to bed early last night, knowing what I had ahead of me.

Judging from the way things are at work, there is definitely a full moon coming. I won’t go into specifics, but there is a tension that I can’t describe, and some of the parents in general are more uptight than usual.