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rosemarya

We were able to communicate with "home" support via computer. Look into

Posted by @rosemarya in Just Want to Talk, Jul 17, 2012

We were able to communicate with "home" support via computer.
Look into Gift of Life Transplant House. This is where you and your caregiver will find support beyond description! My husband and I were fortunate to make that our "home" for the 10+weeks we were in Rochester.
The follow-up care (at a distance) is great. I can call at anytime and talk to a real person!!! I also have a post trxp nurse who returns phone calls promptly. My lab results are faxed from here directly to Mayo. And my local doctors are willing to/and do communicate with Mayo if the need arises. I have met many other trxp recipients thru volunteering with our local organ donor ambasador group, and a lot of them seem to be sent home without much follow-up. Some of them are envious of me in that regard.
BTW - I recommend that you keep a basic log of what you go thru - It is amazing how quickly you forget . @lnerrr

lnerrr

Posted by @lnerrr, Aug 9, 2012

Rosemary, I am going thru a period with fever, chills, all gone now but dizziness, nausea, and I struggle with fatigue. My question is , how strong was the fatigue for you? What did it make you feel or not want to do? How long did it go on for? Thx. Rod

rosemarya

Posted by @rosemarya, Aug 9, 2012

Rod,
The fatigue was ongoing and constant. It was like nothing I've ever experienced before. It began as occasional tiredness and naps helped. As my liver got worse, the tiredness became more often, and naps did not do much good. I would even take a nap, then after dinner fall asleep on couch and sleep until bedtime, then go to bed and fall right to sleep - but never feel rested.
After a while, I spent my days on the couch. It felt as if I melted into the couch, I just had no energy to do anything at all - just lie there, mostly dozing. I quit going out except for clinic appoints. I did not drive. Friends came for short visits. Our church friends relieved my husband by bringing in meals.
Both my husband and I were retired at that point, so we were able to adjust our schedules accordingly. I did not want to do anything at all. My husband had to remind me that I had to eat to stay healthy.
I remember my first visit to the waiting room at the transplant clinic when I was still feeling pretty good - I thought that it was odd that there there were so many patients sleeping in the waiting room; now I know that they were all liver patients. I had never witnessed anything like that before.
You are not alone in dealing with the fatigue. Every liver patient I have ever met will first ask, 'did you have fatigue?'
Hope this is helpful.

rosemarya

Posted by @rosemarya, Aug 10, 2012

I feel that I have to add: I suffered kidney failure, too , and I'm not sure what effect that complication had on my situation. But I feel certain that it complicated things.

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