Kidney Teansplant and CMV

[Sister9555]

My husband is 14 months post kidney transplant. He just tested positive for the CMV virus and has a lot of fatigue. Has anyone else had CMV and what were your symptoms. He’s on Valcyte.

[alanteague]

Yes I got CMV sevenonths post transplant. I had diarreah, but the worst part was back pain. Everytime I moved it was like a pinball machine, with painful spasms all over my back.

[chicago17]

Yes I also had c.m.v I couldn't stop going to the toilet I had it in the first 6month of my transplant I was put on valganciclovir I was ok after I finished the course. & I'm glad to say I haven't had c.m.v since I'm 4yrs in December of having my transplant there's been a few bumps in the road but I'm doing OK now . I hope your husband gets sorted out soon.

[Redbone55]

Hello, sorry to hear that your husband has CMV, well yes I ended up getting CMV about six months after my transplant I had ALOT of fatigue but I also had gotten the cove it 19 vaccine a week before and I thought that might’ve been one of the side effects until I got the call from my transplant team telling me that I tested positive for CMV at that point I had to be admitted into the hospital because the levels were so high and Valcyte would not have been doable for me so I had to get intervenous therapy, I was able to go home but I had to go home with a pick line in my chest so that I was able to do IV therapy at home for 10 days. As you could imagine it was not fun at all but I got through it I had a home nurse come in and change my bandages every 5 days. It cleared up after the 10 days IV therapy….. then Lord and behold here it comes again four months later but the values were so low that they did not have to treat me they just did more lab works to make sure that the values did not go up. I hope that your husband gets better!! Blessings and happy Easter 😊

[Mema3]

So sorry your hubby is going through the CMV virus, I also got it about 10 months post transplant, and my symptoms were more like a terrible stomach virus. I was hospitalized and put back on valcyte, and after about 10 days it cleared up and I pray it never returns. It’s been about 2 years now. Hope both he and I will build an immunity to it!

[Gardner-NY]

HI , I am sorry to hear that your spouse has the CMV virus. My spouse got CMV 10 months post transplant and was on that same Valcyte medicatoin from Aug2019-Jan2020 and was tested often. Late Jan2020, the CMV was gone. He was very tired from this, but from Feb2019 to Jan 2020 he was feeling alot of fatigue due to a rejection of organ and major red blood count problems for months and then CMV. The first 14 months were very challenging for his health. THen covid19 arrived in March 2020. He is tested every so many months for this virus for it can return. I wish your spouse all the best

[Suki85]

Hi, I’m 1 1/2 post transplant. I have CMV as well and was put on Valcyte. The CMV when away and was taken off Valcyte but unfortunately once off the medication the CMV came back. Now is put on a small maintenance dosage. Which makes the stomach pain, diarrhea and cramps better. But Valcyte will cause your white cell count to go down.

[Gardner-NY]

Hello, I am sorry to hear about the CMV virus. My spouse had his transplant Nov 2018 and 9 months after contracted CMV also and the drug you mentioned was the one used. His fatigue was evident many months prior due to so many other problems after transplant and then this also had the fatigue continue. He was a couch potato able to shower, move in the house, take care of himself, but not do normal things he enjoyed due to no energy. THe medication for CMV was given about 4-5 months. He is still tested for CMV every so many months now. CMV virus is a common one to get and not because your spouse did something wrong, it just happens. THings should improve. Just continue to be supportive of his situation. I don't know what people do without a caregiver in the house for the first 18 mos after transplant.

[Sister9555]

Thank you - he is finally feeling better and getting his strength back.