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Ruth and Cindy:
Thank you so much; I am crying already just knowing there are other people out there who are going through this. I am 32 and my husband is 48. It just seems like our life has been turned upside down by all of this; my husband is a difficult man to begin with and we fight over the most unimportnat things, like laundry, grocery shopping, even feeding our cats. I know or at least I think I know that it is an exercise of control because he has no control over this disease. He had never had health issues like this before...he was always up and doing things, the lawn, improvements around the house, etc. Now its just this illness over and he has had every complication it seems possible (though I am sure there are a ton more). You raise very good points about making sure that I find out what drug they plan on substituting for the cyclosporine because he could not handle it. I know it sounds awful, but I am dreading the treatment for him and the aftereffects, dealing with the PICC line, the weekly blood draws, the lethargy, the nausea and the bone pain he feels. He goes through a pain management center. We have been very lucky to find the doctor that we have at Mayo but sometimes I think he thinks of my husband as more of a puzzle he cannot quite piece together...he is a researcher first, a clinician second...but he has taken a significant interest in our case. He had us consult with NIH and Karmonos and has been so patient with my incessant questioning.
I did visit the AAMDS website after he was diagnosed and did receive the information packets. I am looking primarily for support for myself and to understand more about this disease and what other people have experienced.
Thank you for replying so quickly and your kind words....
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