Sunday, October 25, 2009
Cloudy with a chance of acute rejection....
He slept better last night. He is depressed I think cause he doesn't communicate. Even the nurses asked him today what happened to his positive funnies. He pooped this morning! Yahoo! That means he can eat. He ate half a toast and jam and said he was full. He walked to get his own water last night(it is quite a hike) His creatine is up to 400 this morning and they are not happy with it. He has some tenderness around the kidney and chills and High blood pressure. So many of the signs of Acture rejection. We are told this is common in the first 3 months of transplant and easily treated with the steriod Prednisone. They are not sure and can't tell until they do a biopsy but can't until tomorrow morning because nobody is here to do it today. The results won't be in until tomorrow night. TAC stays in the kidney at toxic levels for 2-3 days so it may just be that but there is no way of knowing so they are doing a pre-emptive strike. It won't hurt him to have the steriod. Side effects are many but not guaranteed! So here we go. She says many patients get depressed here and upset but we must remember that this is common and normal and easily treated. It doesn't mean he is losing the kidney! It just means that he is healthy and strong and he immune system is fighting them! Time to fight back. It all seems to messed up and backwards. I figured out where the church is so I am going to go to 1st ward today. I think I am having a rough go cause this morning they made me pay for jam for my toast and it made me cry. hahahahahaha. I have an interesting thought process that seems selfish when I type it out and think about it. I know it all logically and realize there are many emotions that happen in a situation like this. I am very mad at something. I don't like that he can't sit up and play cards or talk or just feel better. I want to take one of the doctors by the ear and carefully explain that they need to know they can't just drug him! You can't take away his ablitity to work and play hard. He is better off on dyalisis and feeling good than on all these drugs that make him lay in bed. I just want to try to help them realize that his is not okay with minimum, or disablity, substandard is not an option. Failure is better than that because at least you can do it again or fix it. Just existing and enduring is not okay! Tommorrow will be better.
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4 comments:
OK! well if he is on prednisone enjoy that one! I am sure side effects vary a lot with each person but it can make someone totally hyper and hungry. Those were always the main side effects the boys had. The real pain you know where is getting them back off of the stuff eventually. It was always a real tough decision of when and how much for how long. Cla didn't have it much but Benjamin had to have it often. He'd be on it long enough to stablize him (supress his immune system to managable levels) and then on it weeks more to gradually with draw it a bit at a time - but he was a wild guy on it. He ate nonstop and never slept for long. They both were very 'busy' boys on it. I hated how lethargic Ben got as it was withdrawn. He then would stop playing and just watch the world go by. The bonus was he lived AND lived a normal life (for all appearances at least)L Mm
Lots of ways to do the cortizone. The Dr. will choose the kind that is best for him. Maybe for a short time only. Part of the process, not the end of anything. This is just a bump in the road, not a broken bridge. Tomorrow will be sunnier, probably.
Nancy
hang in there you guys..it's quite the journey you're on.
We're all thinking of you ♥
Ginger, I'll buy you your own jar of jam.
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