Friday, February 20, 2009

Day +24 - Clinic appointments

After a quick blood draw and a visit to the snot guy this morning, my parents and I left the car at the SCCA and walked about 3 miles up and around Capitol Hill, stopping at a spacious Starbucks to fuel up and enjoy the morning. There is an overpass we walked along that overlooks the entire SCCA campus, and my dad snapped a picture of me in front of the main building. I can point out about a dozen windows that I've been in.

After lunch, I had another transfusion of Mesenchymal stem cells and a clinic visit by the attending physician. I learned a few new things I didn't know about. For example, my white blood cell count is continuing to skyrocket and is much higher than the normal range now. It's at 24 and should normally be between 4 and 10. The doctors explained that the Prednisone steroid is responsible for this, which causes the bone marrow to forcefully push white blood cells into the blood stream. Unfortunately, these white blood cells aren't really functional, and he explained that my immune system is still heavily depressed and essentially non-existent. I guess I sort of knew that, but part of me was hoping that my new stem cells were just rocketing along and taking care of business, fixing damaged tissue and gearing up to fight bacteria in their new home.

My doctors were happy with my walking, and I learned that the steroids only cause muscle atrophy from your waist down. In fact, they recommended not doing any upper body strengthening since it can cause the Hickman catheter to move around unnecessarily inside your body, which could possibly cause a blood infection. I've noticed my arms are a little thinner, but we'll just have to wait to work on that until I get the Hickman line removed, which won't be for several months.

This is my 4th of 6 transfusions for these Mesenchymal stem cells, and even though the transfusion only takes about 30 minutes, there is a 2-hour follow-up to monitor your condition to make sure there are no adverse side effects. So by the time we were done, it was 4:30 pm, and we picked up Johanna and headed home. I treated Johanna to a takeout bowl of Pho noodles since she's been getting jealous of the various fun foods I've been taking home while she's been working hard, and it hit the spot.

I got really tired after dinner and took a solid nap for 2 hours, during which I received a phone call and had no idea what was going on. For some reason I get this post-Benadryl hangover several hours after it's administered, and sleep so heavily that I can't tell what day or time it is when I wake up. The good news is that the phone call was from the SCCA, and they are lowering the dose of my Tacrolimus, one of the drugs that prevents GVHD. This is good since the side effects from this drug include tremors and blurry vision, both of which I'm experiencing regularly now. It also suppresses magnesium in the body, which is why I'm required to infuse a small IV bag of magnesium each night. I'll be on this drug for a while, but if the dose becomes low enough I'll be able to replace the magnesium IV infusions with an oral pill.

Next Monday I'm going in for the milestone "Day 28" bone marrow biopsy (they actually scheduled it for Day 27), which will accurately determine how well the new stem cells are engrafting and whether there is any sign of the disease. I'm excited and anxious, but mostly excited that the days are flying by and that things are continuing to look good.

Here are some pictures from our walk. On the way back we meandered over into North Capitol hill on the west side of Broadway, which is near where I used to live and still one of my favorite areas of town.

Mom on top of the world

The Space Needle is right behind my head


The hoody + floppy-hat look


Beth said...

All seems good. Keep it up. I'm not yet comfortable with the snot guy -- I'd watch out for him if he approaches on the street.
Jeff and Beth

George said...

Your eyes are looking clearer and clearer with each picture.

And you look like you have the skin of a baby.

How's the mouth? I bet it's starting to replenish itself. So awesome you didn't have to do the package feeding. How awesome are you!!