Trials and tribulations of a patient in search of a bone marrow transplant

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Monday, March 10, 2008

Onward and onward

Steve has been just too exhausted to post since last week. So I will again try to fill in a blank or two. His blood counts are just not coming up, so every other day he has platelets and frequently blood. Friday it was two units of blood and a unit of platelets. Monday he got just platelets and fluids. I can't even tote up how many bags of blood and platelets he has been through since the start of all this in November. Thank you to every single person out there who donates blood from the goodness of their hearts.

His blood pressure has been quite low. We wonder if it could be the result of two doses per day of blood pressure medicine they gave him since his pressure was frequently elevated in the hospital. Have to call the heart doctor tomorrow and see what he thinks. That might be part of the reason for the extreme fatigue. Plus the last chemo he had the day he left the hospital. Other than that, no fevers thank goodness. Blood oxygen is good. No recurrence of the diverticulitis. He hasn't gotten his platelets high enough to allow the colonoscopy the doctors want to do to check out his intestines before starting the transplant.

The doctors want to make a decision this week on what route to take on the marrow donor situation. They have made Steve a priority with the cord banks. Since last posting, they found two more "cords" that are a bit further off from a perfect match, but are larger cords. If time were only on his side, cord blood might find a perfect match before adults would show up and register. There is the one international donor that we should know something about this week. And they requested draws on some donors that were already one antigen off on the initial testing in hopes that the further testing might line up with Steven's tissue type. Two of these samples were supposed to come in the end of last week. Full results take up to ten days, but they usually know sooner if they aren't going to match. We are waiting on needles and pins.

I wouldn't say Steve has much of an appetite, but he has managed to gain about 6 pounds since he left the hospital. The chemo destroyed most of his taste buds and they are slow to come back. About the highest compliment he has for food is "neutral". Meat tastes bad, and it is protein that he needs most for rebuilding his system. There are powdered protein supplements to stir into things and protein drinks that he is taking religiously. Eggs are tolerable. Water which was OK before now tastes metallic. The one thing that tastes good is ice cream, Ben & Jerry's and Haagen Dasz. He has been trying to push himself a little more each day to gain back some muscle, but the fatigue isn't helping accomplish that.

Steve managed a couple of hours at his house on Saturday to see the kids. Thank goodness everyone is well now, cross your fingers. It was Alexa, all 5'6" who sat in his lap most of the time. Andrew has a birthday coming up tomorrow. Steve wants to go see him if possible.

I have been working to arrange Steve's Social Security Disability benefits. He certainly qualifies and has paid in all his life. But the SS Admin doesn't make it easy. Endless paperwork, then waiting for calls from them that never come through. It has been over two weeks since the local office was supposed to call within two days and we haven't heard a word. I keep calling the main office, where they have been very helpful, but it is the local office that administers it. It won't be enough, but at least it will be something. In exasperation, tomorrow I plan to gather up the pounds and pounds of paperwork they require and march in to the local office where I'm told you wait four hours and stand there until they give me an answer. Once accepted, it still takes four months to start receiving benefits. It's not easy to be sick.


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