Things are pretty much still the same. Jim has been home 1 month tomorrow and we don't see a lot of progress. Jim mostly remains in our room. He has been down to our family room twice since he has been home. He generally feels pretty crappy. We continue to go to the clinic at LDS Hospital once or twice a week. That is a huge ordeal because his mobility and energy is very limited. It takes at least 15-20 minutes to get him from our room and down the stairs to the car. Once we get to the hospital it is quite a comical routine. I drive to the front, run in and get a wheelchair, help him into it, wheel him to the lobby, go back out to the car, park it across the street, walk back across the street, then we are off to his many appointments. You don't realize what people go through that are mobility challenged, handicapped or as my son Brendan puts it handicapable. Its not very convenient and things take twice as long. At one of our appointments last week Jim needed to use the rest room. It was not a standard appointment so we were not aware of the facilities. We were directed to the hall. Keep in mind Jim is in a wheelchair. We can not find a handicap accessible restroom. We see a men's room and a women's restroom. What to do, what to do. Well, I do what needs to happen. I enter the men's restroom with my husband. We take care of business and I am just happy no one has come in. Just as I am wheeling him to the sink to wash his hands, a man walks in. I apologize and explain that we are just finishing. The man is friendly and states "no problem." He then proceeds to the urinal and relieves himself right in front of me. At that point I know I have hit the bottom. Funny!
We found out last week that Jim has a virus that has reactivated. About 80% of people have CMV virus in their blood. It is not a problem with a healthy immune system. Jim and his brother who gave the stem cells both had it dormant in their blood. Now because he is on steroids for the graft vs host, the CMV has activated. He has it in his blood and in his gut. So that could also be contributing to alot of his issues.
We wheeled into the clinic last week and helped Jim into a chair. He has to wear a filtration mask so it is obvious he has had a transplant. There is a brother/sisterhood at the clinic. A woman was sitting in a chair. No mask but obvious her hair was not fully in. She asked Jim how far out of transplant he was and he stated 50 something days. She watched him struggle from the wheelchair to the regular chair. It is pretty rough on him. She stated that she was a year and a half out. She looks at Jim and says "Can I just tell you, the first year just sucks." It actually was good to hear because it took the pressure off. Jim was frustrated that he had been home 3 weeks but did not feel any progress. So now we just know, it is a very sloooooooooooow process.
We made it through mine, Sarah's and Nates birthdays. Also through Mother's day. I have not been back to work yet, but I have a shift scheduled for Friday. Jim's sister Nedra is going to come and take care of Jim. I am nervous to leave him. I know Nedra will do fine, I am just used to taking care of him. I know it will be good for me to work a shift once a week though.
Today I AM THANKFUL FOR continued health and mental strength to carry on. I asked Jim what he was thankful for and he also agreed that he was thankful for my mental health.
Monday, May 10, 2010
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I am thankful for your mental health as well! Just thankful for you and that my breother has you there!
ReplyDeleteThanks for taking the time to post. We've been thinking aboout you guys :)
ReplyDeleteAs always, good job, Suzanne!
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