My experience post donation:
My recovery was difficult which began immediately after kidney donor surgery post-op with ending up in ICU for 9 hours after post-op. A team of specialists (otolaryngology) were there ready to perform a tracheotomy (I was not awake-my husband informed me later) because I was so swollen/edema that they were afraid that I wouldn't be able to breathe when they removed the tubes. The outcome was that I was able to breathe and a tracheotomy wasn't necessary.
After returning home, I experienced back pain which continued for a long time and, to put it VERY mildly, I just didn't feel good.....The fatigue was hard to deal with... Approximately one year post donation I became very ill - moderate to severe nausea daily -every single day without any known sensible reasons - which lasted approximately 5 months (no pattern to ingested foods or allergies), rashes on different parts of my body, facial and neck severe flushing (developed facial spider veins - telangiectasia - which are still visible to this day). I went through several different kinds of testing - bone marrow/bone biopsy, cat scan, endoscopy, colonoscopy, 2 MRI's (one because of back pain), numerous blood & urine tests (one of which =24 hour urine test with result =histamine= 647/normal=0-321), facial biopsy (dermatology doctor biopsied my cheek with suspect of having Rosacea=resulting in negative). At that time my internal med doctor suspected having Systemic Mastocytosis..... I came through it all without knowing what was causing these problems.
I continued to feel quite ill at times - In the year 2005 I had more tests including an endoscopy and biopsies...I was diagnosed with Celiac disease...Gluten in foods being the culprit....I suspect that even though an endoscopy was done during that time approximately one year after the nephrectomy surgery, and it didn't diagnose Celiac disease then (how much was know about Celiac disease at that time?
)- that 'illness' I had 1 year after surgery could have been from Celiac disease??...Of course, I still have Celiac and will always have to contend with it among other medical issues that I have....(If you care to read them - I have posted other messages in this site regarding my health issues, and "my story" is in kidney donor experiences - 3rd from the top under Debbie).
My response with my own experiences may not help you at all, but I am hoping to encourage you to investigate through your medical facility/doctors and testing to continue to get the help you need and get answers.....Also, I encourage all donors to ask for and keep all of your medical records.
I hope you find your answer as to why you have been ill....And, I hope there is something you can do to make you feel better....Nausea isn't easy to deal with...I have been there many times....
My best hope & wishes for you,
Debbie
Topic: 15 months later & still don't feel well (Read 8460 times)