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If you have had an organ transplant then you may want to also become a member of these communities if they are applicable to your condition to share your experience:
Diabetes and Kidney Community
Kidney Disorders Community
WebMD Diabetes Community
WebMD Hepatitis Community
WebMD Heart Disease Community
Welcome 20Survivor05
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mrscora01 posted:
How are you doing now? I'd love to hear about your experience. While I have transplant experience (kidney tx in 02, pancreas in 08) I was fortunate enough to have something that could keep me alive long enough to wait for an organ. Dialysis wasn't fun, but it was do-able and insulin had been my companion since 1966. How do you feel it is different for folks like you that are much more on the edge of life and death? It must be much more nerve wracking and in some ways you must feel such strong emotions after you receive the gift.

Cora
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20survivor05 responded:
Hello Cora,
On the edge of life...Good way to describe it!!!! I was diagnosed in Nov of 2004 with acute alcoholic liver failure. It started with me passing out, then finding out my ammonia levels had shot up over 200. Then I began to gain weight...fast. I would gain 10 lbs in a matter of 3 days. After consulting my Gastroenterologist, I began paracenthesis and thoracenthesis to remove large amounts of fluid from my abdomen and upper thoracic region. I must have gone throug 15 of these procedures about every two weeks. them my body began to react to touch...everytime I touched somethin or rubbed against something, my skin became blackened in much the same manner as a black and blue mark..only worse. I had wounds that would not heal and started to bleed profusely. My entire body became blackened with bruise marks. Whan a band aid or dressing were put on my wounds, my skin would peed off when the dressings were changed. Towards the end, I developed a herniated belly button and fluid began leaking through. I was life flighted to the University of Pennsylvania Hospital in Critical condition where I waited to either get a tranplant or ...Die! Fortunately for me, my blood type(A ) was a good match I was about 2 days away from certain death when I received word I was being transplanted the next morning. Soon after, my body began to heal, my organ was performing very well, and I was on the road to recovery.
During my recoup in the hospital I began having a lot of emotional issues, Hallucinations..etc. I attribute those episodes to high doses of Prograf, Prednisone, and Cellcept. Believe me when I tell you that Hallucinations(to me) seemed very real. I was seeing people coming out of the walls, seeing dead relatives over my bed..etc. I had to go on risperdal while in recovery, get visits from a psychiatrist to get over those episodes. I was extremely violent to all those who loved me and came to visit. I got to the point where I was telling my wife and my children not to visit me because I knew that I would say something or do something to hurt them...and I could not control it! After 3 weeks of recovery in the hospital those feeling left, my personality changed for the btter and I was finally ready to go home! I haven't touched any form of alcohol since June of 2004, and I did it without counselling, without the AA! I really believe I cured myself by being Scared to Death of Dying! There is much more I could tell about why I bacame an alcoholic, but it would take up too much time to explain. At any rate, it is 5 years later, I an doing extremely well, and am on minimum doses of Antirejection meds. So Cora, there you have it....Life...once again is good!!!!
 
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mrscora01 replied to 20survivor05's response:
Thanks for your story. I think that each transplant story is different, but in some ways the same as well. With both my transplants I had hallucinations too. After the kidney it wasn't too bad - I had seen a friend go through it and was prepared. After the pancreas, it lasted for a few weeks. I was lucky though because it wasn't too bad. My fiance had drawn me some cartoons of my dogs - they kept moving and kept me entertained. lol

Take care.

Cora
 
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Sandy28678 replied to 20survivor05's response:
Hello! Can u please help us? Where did you get your transplants?
My nephew needs a liver and a kidney transplant. He was trying to meet the criteria for Mayo Clinic to put him on the list for the transplants, before he could fulfill the requirements, he fell ill with sepsis, etc. He is suffering brain damage from the toxins, and the hospital has released him to hospice because Mayo has now denied him for the transplant because he has not been able to fulfill all the requirements and that his body is not healthy enough to be a candidate. We are wracking or brains on what to do next. He walks with a walker, and has some cognitive trouble, remembering things, etc., but otherwise he can talk and act normal. Can you please help us? We're desperate where to go next.
 
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Sandy28678 replied to mrscora01's response:
Cora...this is my reply to 20survivor05: Is there any way that you can ask him to contact me? My nephew needs a liver and a kidney transplant. He was trying to meet the criteria for Mayo Clinic to put him on the list for the transplants, before he could fulfill the requirements, he fell ill with sepsis, etc. He is suffering brain damage from the toxins, and the hospital has released him to hospice because Mayo has now denied him for the transplant because he has not been able to fulfill all the requirements and that his body is not healthy enough to be a candidate. We are wracking or brains on what to do next. He walks with a walker, and has some cognitive trouble, remembering things, etc., but otherwise he can talk and act normal. Can you please help us? We're desperate where to go next.
 
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Sandy28678 replied to 20survivor05's response:
My nephew had all the same problems you did..passing out, high ammonia levels, the fluid needing to be drained. Right now he is in a hospice center in Las Vegas. Mayo in Phoenix has rejected him as a candidate....my niece is with him (both parents are gone) trying everything she can to find a place for him to go, but the hospital will not transport him anywhere because they say he's too sick. He's walking with a walker and smoking cigars! That doesn't sound too sick for me, plus they say his body is too weak for a transplant! You were in critical condition! We just don't know what else to do!
 
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mrscora01 replied to Sandy28678's response:
Hi Sandy. I had my transplants at the U of Mn in Minneapolis. I know that in some cases with things like liver function, they feel that the person is not a good candidate. Which of the requirements has he not been able to pass? Is it something that may get better with a bit of time?

Sorry I can't be more help

Cora
 
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lainsky replied to Sandy28678's response:
Hi Sandy. I'm a recent liver transplant recipient. I too was incoherent, confused etc. I'm going to give you the number of Northwestern Memorial Hospital in Chicago where I go for after care. Northwestern did my surgery & saved my life. It's good your nephew has you to help him. I wish all the best of luck. If they ask him to be a part of their study on the liver, he should agree. I did. 312-695-8900. God bless
 
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lainsky replied to 20survivor05's response:
Hi 20survivor05. I'm a recent liver transplant recipient. 3/21/13. I accidently stumbled onto this page! Glad I found it. I used to be an emotional wreck after surgery because I kept thinking, "Wow! someone had to loose their life for me to have life!" Then a friend said "Don't look at it like that. Look at it as Their life is living on through you." I thought that was a beautiful way to put it. And it has helped me with the emotional part.
Have a blessed day.
 
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dontkr replied to lainsky's response:
I had guilt feelings too, my trans date was 11/1/13. What I tell myself is too pay it forward by being kind to others, and help when you have a chance to.I will never be worthy of such a gift, but if I can impact someone else's life in a positive way,even if it's something as simple as a smile or encouraging someone, that's on the right track for me. I just have to remind myself to make it a daily effort.
 
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lainsky replied to dontkr's response:
Thank you dontkr for your response to my post. Just knowing that what I'm feeling & going through is perfectly normal helps. Now, everytime I can touch someone's life, I feel blessed! And yes, I do try to make it a daily effort too. Have a blessed day.


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