General
Has anyone received a new illness or new diagnosis from their donor?
I was wondering if anyone has ever been diagnosed with a new illness or disorder from their transplant organ. Something like my donor had hypertension so now I do. I know they do all kinds of screening and test before transplant but sometimes things just happened.
TransplantLyfe Favorite
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I had cmv also but they knew my donor had. I’m now ok no signs of it but they arch for it in my labs. Also my hemoglobin dropped really low about a year ago I was 6 months post transplant and they didn’t know why. Was hospitalized for a week with lots of transfusions and finally decided some of my meds were attacking my marrow. I was so weak but finally bounced back. None of this was a major thing for me thank goodness just minor setbacks.
I had EBV from my donor (they'd been exposed to it and I never had) as well as IBS. I had digestive issues before but with the history of my donor and the complexity of my transplant, it launched into full uncontrolled IBS
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Valley fever
Wow! I'm sorry to hear that.
Awesome! I as well have been blessed so far but I do know this is a possibility post transplant.
Cmv, almost lost my life. They had to take the kidney. The donor had been exposed to it and I had never been exposed
My husband is post liver transplant 20 years. Has had no problems but after transplant starting craving spinach and Avocados. And has eaten them ever since something he would never eat before. He has been very blessed.
Oh my! I’m sorry to hear that. I’m glad your still with us.
I’m glad you are doing well. Those medications we take are rough.
Wow! I’m sorry to hear that. I don’t think this topic is talked about enough.
Oh I totally believe I got new likes and dislikes from my heart donor.
Three months post liver transplant my Hep C levels were on the rise. My donor was consider a high risk and showed no signs of it before I received it (I also didn't have it either). They believe my donor had it, but was never tested and treated for it. I took a new medication for three months (three pills in the morning) and it wasn't a cheap medication either. I no longer have it in my body, but have to get checked for it yearly.
Deb, I also have had hemoglobin problems. I’ve had two iron infusions, they think it’s anemia. Wondering what medications you were on that you think caused your issues with your blood. I’ve wondered if that is what is also causing my issues. I contracted BK virus from my donor. Changed my meds to allow my body to fight it. After three months there is no trace of it in my blood work.
I had the BK virus, but have had a weeks worth of Infusions. Now we just track my BK numbers in blood & urine labs. And those numbers keep going down.
I had CMV 13 months after transplant and it took them a month to diagnose it. It took 4 months to kick it. Turns out the donor had had CMV but it wasn’t detected before transplant.
My kidney donor had covid, but that was not an issue. I already had covid plus got 2 vaccines.
One month after transplant, I developed EBV. My numbers are extremely high. CT scans were ok when checking lymphnodes. My team is referring me to hematology/oncology for evaluation. I am a little scared, but trying to be positive.
Does anyone know how they get this under control (already decreased prograf & Cellcept dosage to have my own immune system fight it) does anyone know how long it can last?
Transplant Patient
I developed EBV post transplant. I had severe EBV for around 6 months (I think) and am still being closely monitored. I decreased the meds, was in and out of the hospital for a bit, tried holistic remedies, was on antibiotics for it... I still struggle a year post transplant but I'm doing better now for the most part
Wow, I had no idea EBV could last that long. I've had it for almost 2 months. The number for it is well over 1million
I am 7 years post transplant and got CMV from my donor but it was known before transplant. It took over a year of on and of Anti-Viral Meds to finally kick it. I have had no reoccurrences since then.
Transplant was 6/4/21. On 7/1/21, EBV was detected in bloodwork. It has climbed to over 1million (which is not good). They completely took me off one anti-rejection and lowered the dosage of the other one. This was so my own immune system could 'kill' it off. Did not happen. Kept getting higher. I have had oral thrush for a month now (extremely painful). Tomorrow I have surgery to remove lymph nodes from my neck (became swollen).
Don't know if it's from the virus or if it's something else. I will say. I am scared to death about this. My mouth and throat already are painful and this will make it worse.
Oh yeah, my new kidney is trying to reject. My numbers are tanking.
Sorry such a long reply. Funny how they don't tell you about this stuff beforehand.
Transplant Patient
@staylor1225 OMG! Sending you all the love and good vibes. Keep us posted on how it goes!
EBV is a beast, and can so easily manifest as something else. I’ve been looking into it and so many things can have a root cause in EBV. I get the doctors don’t want to scare us but some information would be nice!
High blood pressure and Cholesterol and Diabetes type2 all from the meds!
But still feeling great, and feeling blessed!
No and any complication I have seen in people (or comorbidity) is driven by the drugs not the transplanted organ!
Transplant Patient
@Liv a lot are driven by other things we are at higher risk for because of transplant. But infections, virus… also are transferred through the organ. My doctor educated me on this. Usually it appears immediately post transplant but everyone is different
So, after biopsies and other testing, they determined I have lymphoma (cancer). This started with contracting mono from donor. It's called EPV, Epstein Barr Virus. The numbers in bloodwork got extremely high. I start treatment next week (6 hrs). I have so many emotions about this whole cancer thing. But, I have a lot of confidence in my doctor and the whole team involved. Hoping and praying this treatment targets all the lymphoma in my body. If not, then I go to chemo (depressing).
Transplant Patient
@staylor1225 my heart goes out to you! EBV is a beast post transplant not many people understand. Wishing you all the best
I’m very sorry for those of you who have had to deal with EBV. Didn’t really know what it was until I looked it up just now. Will keep you in my thoughts and prayers.