I have been on a waiting list for a P & K for a year now. I received a call week before Thanksgiving to go into the hospital because I was the alternate. I didn't get chosen. Yesterday I got a call about a Donor. I was told she was a High Risk Donor. She had used drugs and had sex for money or drugs. They told me all her test were normal. But again she was a high risk donor. Has anyone had this to come up or received organs from a HR donor. If so how are you doing. I turned the organs down. It was a hard decision but I felt like she had already abused her body. What kind of headaches would I be taking on.
I'm not trying to sound upset, but I am a little bit about your statement. Yes, that donor may have made some mistakes, but that doesn't mean that they where not a good person. They saddly died, and we don't know why, but they where an organ donor. A transplant team will not give you an organ if they believe it will intentionally harm you.
My donor, before I was going into surgery, I was told had been exposed to Hep B. I freaked out, I was like what?!? You're going to give me a Panc with Hep B? Well there wasn't anything wrong with that Panc, I later found out it's just in the Liver, and this past week as I'm in school to be a nurse I found out that "exposed" could be that he got Hep B before he was vaccinated for it.
My pancreas failed, but I still love my donor and his family. They haven't responded to me letter, and they may not, but I still love them. That was my 2nd call.... My first call was on Jan 19th 2008, and yes I know all the dates for every event of my transplant. I was "backup" and they called at 12pm, I had to wait around all day, and night till 8 am when they told me that I wasn't getting it. (I didn't get my other tx until April 10th 2008.) I was like why did they have me wait soo long?!? My aunt who is a RN told me that the patient may have been on life support. They wait for the family to say good bye, but they know that they're a donor so they prepare.
Since my aunt was an RN at the hospital I was considered a "gem" So a lot of the time I was treated differently, and everyone on ICU wanted to meet me, even though I felt like crap. It was kinda annoying, but a lot of them are my friends now. I found out wayyy tooo much that I should have known. I saw a family outside the room next door saying goodbye to their loved one because they died. They where an organ donor, and the look on their faces broke my heart. I started crying like a baby. I wont go into details about the donor for respect, but I did find out his cause of death, and it was very sad. He was on life support, but the family wanted to say goodbye.
In April I was admitted for rejection. April is organ donor month, well my mom wanted me to do downstairs to the lobby, she said she had a surprise, I hated it. They where having a meeting, and I think a buffet for all the donor families. There where a lot of pictures, quilts, art. I don't thnk my mom intended for me to see the families, but I was looking at the photos and my heart broke again. Than it became even worse because I saw all the families, and I started to cry like a baby and I was having a breakdown, so we left. (It wasn't easy going all over the hospital with my IV pole and Cath.)
Don't disrespect anyone for being a donor/a donor family.
My Pancreas was my baby, seriously he was soo important to me. I would have named him, but I still don't know the name of my donor. They said that they wanted to surgically remove my Panc after it failed. They wanted to take it to Pathology, and I was upset. I didn't want it out of my body, He was my pancreas and I love him just like the donor. They ended up not doing the surgery and he's turning to scar tissue, but I love my pancreas.
Sorry CatAnne what I said upset you. I just asked the question to see if anyone had this to happen. You did what was best for you and I am doing what I feel is best for me. You know nothing about my medical history or my morals. Somebody else was able to receive the kidney and pancreas.
No, I didn't have that happen to me. Perhaps the good news is that you must be close to getting the organs that are right for you.
.My friend did take one from a person who had accidentally overdosed on prescription drugs that he was addicted to. She was a little hesitant about it, but I think she's doing alright. She has some other problems (not from the transplant) and just generally has never been too healthy. She had major medical problems before the transplant which were not connected to her diabetes.
I too got a call similar to yours. The donor was a drug user. The way I had it figured is they would not offer me the organ and spend all of their time and money placing a bad organ for another bad organ. Just me. I asked my team about it rmultiple times before my transplant and they assured me they felt all would be fine. The donor organ was also 8 years younger than I am so that was a plus. I have had no problems with my new organ. As far as any headaches that you would incur as you know that all depends on your body. Personally I have had no bad experiences. Good luck!
On Sept 13, 2010 I had a call from TX coordinator telling me there was a long shot for a kidney, so she wanted to make sure I was okay. She said it probably won't happen, but that I'm on top of the list so be ready cause it could happen any day now.
A few hours went by (8 to be exact) and a TX Dr called me. He wanted to tell me a little more about the donor. He said it was very young high viral infection risk donor. He said it had been tested a couple times and came back fine, but small chance of AIDS and Hep C existed. I asked the Dr "if this was you, would you take it" He said yes. I then said "okay I will take a chance." luckily he kept talking to me and explaining the situation, that's when I started having second thoughts, and told him so. I turned it down.
I deal with diabetes and renal failure, I don't want to be at risk for AIDS and Hep C as well.
ALL of the people I have talked to have agreed that it was a wise decision.
The right one will come to us when it's meant to happen, hang in there!!
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Hi,First post folks. I'll begin with quick background: My 15-year old daughter had a heart transplant 6 months ago after having severe dilated cardiomyopathy with left ventricular noncompaction (now known to be a result of a genetic mutation original to her). Anyway, transplant was at the highly acclaimed Columbia/NewYork-Presbyterian Hospital - to which we moved for waiting for the heart, transplant, and follow-up care. Now, 6 months after transplant, we moved back to our home. Our medical team has a different protocol for checking for organ rejection.Whereas NYP's protocol is cardiac biopsy every month for first year, every 2 months for second year, and every 3 months for third year, our hospital's protocol moves to every 3 months after 6 months, then every 6 months after a year and every year after 3. Bottom line- much fewer cardiac biopsies.I'm wondering if you know the different protocols in checking for solid organ rejection / heart - and how they differ from different medical…See More
Hi, My wife had a double lung transplant, 16 years ago this Sunday. At the age of 27, dying from CF, she was gifted life by the transplant team at MGH in Boston, and two non-related living donors. We've been together for 8 years and I play both roles of husband and caregiver.Although her sweet 16 "Lungaversary" is Sunday, on Monday she goes for a major surgery (not pulmonary related). I sure am nervous. I've witnessed her resilience, self efficacy and recovery from multiple pneumonias, illnesses and painful secondary ailments caused by medications. But this total open abdominal procedure will really immobilize her and expose her to infection (inpatient or out). I'm scared, but can't fully express it because she is scared and seeks emotional comfort and strength from me. Every day I "should" be grateful, not worrying.I apologize for writing so much on my first post. I hope to find some support and insight here.StefanSee More
I recently injured my hand and now have to have surgery on it to repair it. They are going to be putting me out for the surgery. Now grant it, I, on a regular basis go to my transplant center for different procedures(ie;allomap, biopsies, heart caths, etc) and feel completely at ease in doing so, it has been 4.5 years since my heart transplant, Yet I have found myself with a lot of anxiety going into this surgery, one that they are putting me under, two, it is not at my transplant center but at another hospital. It is really weird that i seem to have more anxiety concerning this surgery then I did about my transplant. The faith I have been granted affords me to have confidence in my eternal destiny to be with Christ and that is what/and has guided me through my entire transplant journey. Can anybody shed some light on their experience they have had with other surgeries following transplant. With a grateful heart, JeffSee More
"Hi Phil, Before transplant I had hepatic encephalopathy which my gastroenterologists treated with medication. My reflexes were slow and my judgement was often faulty. Until the fall before my following Spring transplant these episodes were few. They…"
"Hi there! I notice people are not that active on this page. I had acute liver failure, had a transplant in 2011. I take 3mg of Prograf only. I also, on the advice of my Mayo Clinic transplant surgeons take the vitamins Calcium, E and magnesium. I…"
I lived with stage 4 (end stage) liver disease for 15 years. The fall of 2010 was the beginning of a rapid decline. I received a transplant in May of 2011. As you know a transplant gives you a new life but does not cure the hepatitis C, it begins its damage of your new liver immediately. Thanks to the incredible staff of the Mayo Clinic Liver Department and new drugs Solvaldi and Olysio I have been virus free for over 5 months and hope that my 6 month blood test will be still be negative. Interferon and ribovarin would show no virus and then a month or so it would rear it's ugly head. I had no side effects from the two new drugs. These drugs are very very expensive but I was fortunate that Mayo knew where to go for help with these two drugs whose combined costs is $58,000 per month for 3 months. $174,000.
A group for those of us who had a liver transplant due to acute / fulminate liver failure. Here we can discuss our experience with this unexpected form of organ transplant including psychologically, physically and all else that goes with it.