I get worried now about running errands or picking Johanna up from work that I might not make it. It's an awful feeling and generally just causes me to stay indoors even more. When standing or walking there is a general ache down there all the time, not unlike the after-ache of being gently kicked in the testicles. I've found that sitting and lying down are the only way to make it feel better. So that's caused a lot of problems in my daily routine since I'm not walking as much, which makes me feel even worse. It's an awful cycle. Drinking massive amounts of water helps the pain by diluting the amount of blood in the urine, but this just causes even more trips to the restroom :(
The tests last Tuesday showed that it's not a bacterial infection, which is good, since it means it's not something that can spread into the kidneys and cause more problems, but it's not as good since bacterial infections can be treated with antibiotics relatively quickly. A bacterial infection is the kind of urinary tract infection most people get, especially women. In my case, I'm suffering from a reactivated BK virus which is a virus present in more than 80% of the population. Normally it exists in a dormant state, but in patients who are immunosuppressed this virus can reactivate and cause an infection. The downside is that the treatment for BK virus can cause havoc on one's bone marrow, so the doctors prefer not to treat it. Tests were run for the BK virus in my urine and in my bloodstream, and they found incredibly high levels in my urine but not in the peripheral blood, which is good. If they had found high levels in the blood they would have consulted with the infectious diseases team and considered giving me the treatment anyway. But they didn't find high levels in the blood, so I'll just have to suffer through it. For most patients, it goes away after a few weeks to a month, sometimes longer. Here's hoping it goes away sooner than that.
The doctors have been watching my skin for GVHD now that I'm tapering off the Prednisone steroid, and we've started noticing just a little bit on my arms, thighs, and hands again. When I was in the hospital, I got graft-versus-host disease (GVHD) very quickly after the transplant. They called it hyper-acute GVHD, and loaded me up with a super high dose of steroids (180mg/day). The GVHD went away a day or two later, and the purpose of the taper schedule is to slowly reduce the steroids until the GVHD just starts to return, but not give it a chance to flare up again. If it flares, we'd have to restart with another high dose again to get it under control. So it's a delicate balancing act. Right now I'm on a very coordinated dose of 60mg one day, then 15mg the next day, then 60mg, then 15mg, then 55mg, then 10mg, etc. This taper dose is more slowed down than even before, and there is no end date anymore. Before it was going to end in March, then April, and now it's indefinite, so that's a little bit of a bummer.
One of the doctors suggested that the skin rash may be due to the anti-fungal antibiotic I've been taking for months, the visual disturbance-inducing Voriconozole, so the doctors brainstormed and ordered a skin biopsy on my thigh to rule out one or the other. During the biopsy, they use a razor-sharp hollow tube to basically take a little core sample of your skin. The biopsy went great, but the sterile tape used to cover the wound made a mess of the delicate skin on my thigh. All of the skin on my body is really thin right now, and when I went to peel off the tape from the biopsy spot 24 hours later, several pieces of skin came off with it along with a lot of hair. Argh!! If it's not one thing, it's something else. I could barely walk around the day I took it off.
Here's a picture of my inner thigh below. See that nice little hole in the middle? That's where the skin was biopsied. No pain there at all. See all those little bacony strips? That's missing skin. Those hurt like crazy.
I've had to be creative with gauze and stretchy hose to cover the whole thing. Johanna even suggested using a maxi-pad which worked well too. I'm still annoyed that the tape caused more problems than the stupid biopsy itself.
On a good note, I'm off the IV magnesium! I've been loading up on more and more of the oral magnesium pills, and so far my gut and stomach have tolerated it just fine. They'll be looking at my magnesium levels closely after the blood draw tomorrow, so being off the IV magnesium may be short-lived. But at least we're making progress. The groin rash and armpit rash are finally resolving too. I've also started a taper schedule on the Tacrolimus drug, another drug that prevents GVHD. Instead of 1.5mg twice a day, I'm down to 1 in the morning and 1.5 in the evening. The Tacrolimus drug depletes magnesium which is why I need supplemental magnesium to keep me going, so reducing the Tacrolimus dose should help things as well. I really like it when progress is made to reduce the amount of drugs going in me.
In other good news, I'm at Day 51, halfway to Day 100 when folks are normally discharged! I still can't believe how fast time is flying by.
Tomorrow I have a blood draw, a visit to the snot guy, then a clinic visit and that's it. I'm hoping I can get back on the bandwagon again and get a good walk in tomorrow. Each day I don't walk it makes a huge impact on the way I feel, from being motivated, to having energy, and just my general well-being. It's amazing how much of an impact it makes.