Monday, December 8, 2008


I had a CBC this morning and I will admit that I thought the results would be a forgone conclusion. I'd resigned myself to thinking that my magnesium levels would be low, yet again. They weren't. Well, technically, they were lower than they should be, but my level had gone up over last Thursday's results. My doctor told me if I could maintain 1.5, she'd be happy. It was 1.6 and I have to believe that the vitamin C that I've been taking had something to do with it.

Now the bad news. My liver enzymes have started going up again. One of the three that gets checked tripled over the weekend. That's bad news for me, since my team was hoping to take me off of the IV anti-fungal in order to restart the oral anti-fungal that started the whole shebang. Chris let my APN know that I'd started taking vitamin C and she said to stop. I did a google search involving vitamin C and liver enzymes. There are actually studies available on the subject and it would appear that vitamin C does impact liver enzyme levels. Who knew?

I'm in a holding pattern until my transplant doctor makes a decision on the matter. I should know something later today. I know that I can still be released to go home even if Dr. Kebriaei decides to continue me on IV cancidas. I'd get it delivered to the house in Denham and just do what we've been doing for the last month. My frustration stems from having to keep my catheter if that happens to be the case.

By no means is the catheter a hardship. It makes having blood drawn and getting infusions really easy. Unfortunately, catheters tend to be very susceptible to infections. I've been very lucky in the last two years and haven't had a problem. My frustration comes from the little daily rituals associated with having a catheter. All the lumens have to be flushed with blood thinners on a daily basis and if I have to have an infusion, they have to be flushed with saline in addition to heparin.

When I want to take a shower, I have to make a patch to cover the catheter. It's like wrapping meat. I have to tape cling wrap over my chest and hope that I've created a good enough seal to keep water out. You never know how well you did until after you take the patch off and check for moisture. I have permanent red marks on my chest from the tape that's used to hold the plastic to my skin.

There are weekly bandage changes to contend with. Chris has to clean and sterilize the catheter once a week. It usually takes half an hour and there's a small amount of discomfort associated with swabbing the stitches and insertion site. The catheter site also tends to get itchy and I can't scratch it.

The lumens hang down really low thanks to the new caps MDA is using. The tube clamps are also a bit on the large side and dig into my chest when I sleep, since I'm a side/stomach sleeper. It's just a lot of small things that are starting to add up. I have a catheter scar on each upper arm and on the left side of my chest. When my current catheter comes out, I'll have a fourth scar. At least I'll be somewhat symmetrical.

When I step back and look at the big picture, I know I'm very lucky. I've had minimal problems, PTLD and relapse aside. I'll post more as soon as I know what the game plan will be going forward.

1 comment:

PJ said...

%#$& is right. I know this feels like one step forward and another one back, but this will eventually all sort out.

Let's compare battle scars some day ...