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Author Topic: 15 months later & still don't feel well  (Read 8481 times)

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15 months later & still don't feel well
« on: March 23, 2011, 07:38:58 AM »
I am hoping that someone can help me... I donated over a year ago and after my donation they discovered that I was extremey anemic.  I wasn't before the surgery.  I was exhausted beyond belief.  Anyway, they gave me iron supplements to take (that was about 6 months ago) and now my iron levels are normal, however I am still tired and get bouts of dizzyness and nausea.  Kind of like having morning sickness all day long, it comes and goes.  I am not pregnant!  Has anyone else experienced this?  Will it go away?  It comes on suddenly and I have to lay on the couch until it passes, about 45 mins or so.  As you can imagine, it gets in the way of life, working and taking care of my dad who lives with me.  I am so very happy that I donated my kidney and don't regret it for a moment!!  I was just wondering if anyone else has experienced this and could give me some info.  Thanks so much!!

Offline ohtobeahayes

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Re: 15 months later & still don't feel well
« Reply #1 on: March 23, 2011, 08:29:25 AM »
I am not a doctor, but how is your blood pressure? And your blood sugar? And your thyroid? Have those things been checked lately?
Be the change!

Offline Rob_h

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Re: 15 months later & still don't feel well
« Reply #2 on: March 23, 2011, 05:15:34 PM »
I developed some symptoms after becoming a donor in 2005.  For a while I thought they might be donation related but regardless they were causing me a lot of difficulty and needed to be addressed.   I found it simpler to skip the question of could it be donation caused but important to remind doctors of the one kidney situation.  Don't give up even if it takes a while.  best wishes, Rob Halverson

Offline Aries7

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Re: 15 months later & still don't feel well
« Reply #3 on: March 23, 2011, 05:31:09 PM »
I am not a doctor, but have you had your Vitamin D level checked? I have been feeling fatigued for the last couple of months. I went in and found out I had a low vitamin D level. I do not however, think that would cause nausea and dizziness (at least it did not with me.) It could possibly help explain the fatigue.

Also, if you are female, is it possible you have ovarian cycsts? I have heard of those causing nausea and/or dizziness for some females.

I would be persistent with my doctor - let him or her know if you are still not feeling well. I hope you get some answers and start feeling better very soon!

« Last Edit: March 23, 2011, 05:55:39 PM by Aries7 »
Donated left kidney to Husband
October 8, 2009 at UW Madison


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Re: 15 months later & still don't feel well
« Reply #4 on: March 23, 2011, 08:56:08 PM »
thank you so much for the suggestions,  I am going to see my doctor in a couple of weeks and he will be running tests, I guess I'll find out then what the culprit is.

Offline Donna Luebke

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Re: 15 months later & still don't feel well
« Reply #5 on: March 25, 2011, 06:14:46 PM »
Get a copy of your medical records and any labwork related to the donation. Look at your hemoglobin or hematocrit prior to donation and afterward.  Look at the operative report and see if any bleeding complications. If they sent you home with low blood count, would call them. Being anemic this far out is a concern, might suggest seeing a hematologist who can look at your detailed labwork to spot the issue.  Could be bleeding somewhere internally and not know it like the stomach or bowel (not related to the donation).  Have you had any workup with endoscopy or colonoscopy?

Kidney donor, 1994    Independent donor advocate
MSN,  Adult Nurse Practitioner
2003-2006:  OPTN/UNOS Board of Directors, Ad Hoc Living Donor Committee, Ad Hoc Public Solicitation of Organs Committee, OPTN Working Group 2 on Living Donation
2006-2012:  Lifebanc Board of Directors

Offline PhilHoover

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there are numerous things
« Reply #6 on: April 17, 2011, 06:54:12 AM »
that may be causing your fatigue.  Get everything checked.
Donated to a former college professor, October 28, 2009. Would do it again in a nanosecond.


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Re: 15 months later & still don't feel well
« Reply #7 on: April 17, 2011, 01:51:12 PM »
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,



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