Thursday, October 1, 2009

Just a recap

I keep starting and stopping this post, frustrated at my inability to collect and order my thoughts, so it's probably going to be a bumpy ride from here on out.

My transplant doctor reduced the amount of tacrolimus that I've been taking from 1mg a day to .5mg a day and I'm already starting to see the difference. My opening statement not withstanding, I've felt more capable on a mental level. I don't feel quite as slow as I did on the higher dose and I'm looking forward to getting off of the drug completely.

Since the immunosuppressant dose has been reduced, I've had a GvHD flare of the skin. The backs of my hands are fairly raw and red and look like they belong to an eighty year old woman. The texture is scaly and if I don't keep them constantly moisturized, they get really irritated and start to hurt.

A small rash appeared on top of my left foot Sunday night. It's a small patch no more than an inch and a half long of slightly raised red skin. If you apply pressure to the spot it feels like a minor bruise. When something brushes lightly against it, there's a burning sensation like someone is holding a flame too close to the skin. When I wear shoes that cover the spot, the burning sensation is constant. I've been applying cortisone cream to no avail. There hasn't been any change. I sent an email to the team and spoke to my nurse a short time ago. My doctor's out today, so I should know something tomorrow. It's a non-emergency, so I'm not worried.

Tuesday I started feeling queasy mid-day and by late afternoon I had vomited once. I haven't been feeling sick and I haven't been running a temperature. If you've been following the blog for a while, you'll remember the bout with PTLD(pre-lymphoma). Whenever I vomit for no discernible reason, I always worry that it might be coming back. This doesn't feel the same and I have to remind myself that I've had two CT scans in the last two months, so if something was going on, it would have shown up.

The same thing happened today. I don't feel unwell and I felt perfectly fine after I was sick. I'll let the team know and see what they want me to do. I suspect that I'll be seeing my local oncologist just to get looked over.

On a much more positive note, the pain in my chest has resolved. I can take a deep breath and only feel a slight tightness at the bottom of my rib cage. Yesterday, I got a case of hiccups and it was a very surreal moment when I realized that only the left side of my chest was fluttering. This leads me to believe that my doctor's suspicions are correct and that I do have a partially paralyzed diaphragm.

I'd like to thank everyone for weighing in on the chiropractor. I've really been thinking it over and after talking to a friend who's specializing in internal medicine and taking my doctor's reluctance in approving the move into account, I've decided to forgo it. In my mind, the cons outweigh the benefits.

I'll post when I hear from the team tomorrow.

4 comments:

Susan C said...

In spite of all the bumps (both literal and metaphorical), it's great news to hear that the chest pain has resolved.

Anonymous said...

Congrats on the lowered doe!!! I am sure there will be flare ups and the team will lead you in the right direction! Keep on going!
Lea

Nancy said...

Hi Ann. I think the gvhd will resolve. I hope the area on the foot is nothing and I am glad that your lungs are better.

I didn't post this to my blog, but my prograf (tacrolimus) was also reduced at my last visit. I'm now on .5 mg every other day. Two weeks after changing the dosage, my face was beat red and bumpy, as were my arms. Definitely gvhd. It's beginning to dry up (as it always has) but my skin feels like a snake shedding it's layer. gross.... My point is that I think the skin issues will resolve. I'm using a prescription steroid cream called Triamcinolone for the skin gvhd which seems to help.

Take it easy and hang in there!
nancy

Ronni Gordon said...

I know what you're talking about when a symptom, like vomiting, makes you worry about relapse . (In my case it's fatigue or a bruise.) I guess we need to keep reminding ourselves that one symptom can signal many things, most likely not a relapse. There are a lot of reasons for vomiting. I'm not sure I have the chronology straight, but if you lowered the prograf and then started vomiting, it could be a reaction to the decrease.