Transplant Saturday +3

Today was another nice day in Rochester. Spring is in the air. Tonight rain with thunderstorms are predicted.

Jackie had a good morning. She felt reasonably well until early afternoon. The doctor's appointment went well with no surprises. I don't think I've mentioned this, but she gets a shot of Fragmin each day in the stomach. Fragmin is a blood thinner. It is given to keep her blood thinned so as to avoid any kidney problems. She is scheduled to get these shots daily for the next 100 or so days. As you might imagine it is not much fun getting a shot (even if it is a subcutaneous) each day.

This afternoon the only thing she felt like eating was a steak. We went to a local restaurant and she ordered a steak. Unfortunately it did not agree with her stomach and she was only able to take a few bites. For the rest of the day it caused problems and she fought nausea all day. By late evening she was better but I think she will have to stick to soft, easy to digest, foods. The problem is nothing looks, smells, or tastes good. Tomorrow I have to begin keeping a log of everything she eats or drinks. This will allow the nutritionist to calculate the caloric intake.

I forgot to mention, but yesterday was our one month anniversary in Rochester. I guess the good news is that it doesn't seem like a month. Perhaps the remaining 97 days will go as quickly.

Jackie's blood counts mostly continue to drop. Today her hemoglobin was 12.3. This was actually up from yesterday's 11.8. However, her white blood cell (WBC) count was down to .7 from yesterday's 1.0. Her platelet level dropped from 80 to 61. Just as a reminder she will receive red blood cell (RBC) transfusions when her hemoglobin drops below 8.0 and platelet transfusions when her count drops below 20-25. It is likely she will require platelets soon.

One of the problems she experienced last October and November was thrombocytopenia. Her platelets fell to as little as 2 and remained under 10 for quite a long time. At the time we did not realize how dangerous this condition could be. Unfortunately the doctor in Tulsa did not impress upon us the gravity of the situation. Looking back I realize how shocked I am by how little the man knew about Jackie's disease!!! The Internet is a great leveling tool. With some time and research it is possible to know as much about a subject as someone who is a supposed expert. The lack of knowledge by the doctor in Tulsa was inexcusable and verged on the edge of medical malpractice - in my opinion!

Until tomorrow...

Bruce and Jackie
From Rochester, MN