HealingWell
Search Close Search
☰

Post transplant issues

Support Forums
>
Hepatitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 11/13/2015 5:32 AM (GMT 0)
My spouse received his liver in 2014. Unfortunately it was CMV and EBV positive and he was negative. There have been numerous complications and it now seems he might be rejecting the graft as well as a concern for PTLD. Scary stuff. It never seems to end. Does anyone have experience with CMV EBV or PTLD?
Posted 11/13/2015 6:06 AM (GMT 0)
Welcome Diamonte, While I can't answer your questions I'd bet one of our members can help you. We have a quite a few members who have received a transplant. I myself have not. Just seen your post and wanted to tell ya to sit tight until others see your post. If you'd like to do some research, type keywords into search (just above JOIN HEALINGWELL tab at the top of this page).

Ziff
Posted 11/13/2015 7:25 PM (GMT 0)
I had CMV and FBV, which were discovered after I got into the transplant program. Got a new liver 4 years later. Both were dormant/gone by then.

What anti rejection meds is he taking? I have a bunch of prograf to give away as they switched me to cellcept.
Posted 11/13/2015 8:09 PM (GMT 0)
He is taking Tacrolimus.

So, David, if I understand correctly, you had CMV and EBV prior to transplant? Is that correct? If so, your body already had resistance to both. My spouse did not have it prior to transplant. It came from the Donor liver and is now causing complications. He's had many complications. Weeks after transplant he was hospitalized for several weeks with GVHD. He wasn't expected to make it, but he beat it. It's been a continual battle for him. It's difficult to complain about it, as if not for the Donor liver he would have been gone over a year ago. He is alive, so we can't complain. We just worry, a lot. And live in fear of what's next.
Posted 11/14/2015 3:46 PM (GMT 0)
Yes, I was already over both viruses by the time of my transplant.

A transplant doesn't fix everything and there are almost always complications, but it beats the alternative. I have had over 6 years that I wouldn't have had, without a second chance.

I'm happy every day...
Posted 11/14/2015 7:06 PM (GMT 0)
Mike had EB before TP and has had a high count post TP with other complications. No one has checked lately. He is feeling well just now. He has never been diagnosed with CMV.

ML.
Posted 11/16/2015 3:14 AM (GMT 0)

A.Ziffle said...
If you'd like to do some research, type keywords into search (just above JOIN HEALINGWELL tab at the top of this page).

Ziff



I did and I'm not finding any results of anyone who speaks of CMV post transplant. Google results in case studies and medical journals but I was hoping to hear/read about/from real people.
Posted 11/16/2015 3:34 AM (GMT 0)
i searched another way: cytomeglavirus or cytomeglavirus and transplant

There are lot of old posts.

I am sorry this isn't getting sorted out.

I hate to tell you how may times Mike has been in the hospital post TP. He is 4.5 years now and he has had HUGE reaction to an antirejection drug added when he had an episode of acute organ rejection, 4 ortho surgeries (related/not related to liver disease?), an aortic valve replacement (related/not related to liver disease???), 2 giant incisional hernia repairs, eye surgery (related/not related to liver disease?), and the elevated EB thing mentioned before. It is not a smooth sail.

Hugs,

Mama Lama
Posted 11/16/2015 3:39 AM (GMT 0)

MamaLama said...
i searched another way: cytomeglavirus or cytomeglavirus and transplant

It is not a smooth sail.

Hugs,

Mama Lama



It certainly is not that. Jeez. It's been one thing or another since day 20 Post TP.

Thanks for your response, ML. I'll keep researching.
Posted 11/16/2015 2:42 PM (GMT 0)
diamonte,

I found this thread that may offer something helpful. My husband is pre-transplant, so I have no post experience. I do want to give you a late welcome to the forum! Glad you are here. Big Hugs

www.healingwell.com/community/default.aspx?f=25&m=3069711
Posted 11/16/2015 3:55 PM (GMT 0)
I read the thread. There was one poster who said her donor liver had CMV; though she did not discuss how that had an impact on her in anyway. I'll keep looking. Thanks.

All of what I seem to find with Google searches is blanket statements like this :

Cytomegalovirus (CMV) infection accounts for significant
morbidity and mortality in solid organ transplant recipients.
It can not only cause tissue-invasive infection in
immunocompromised hosts but may also be associated
with allograft injury, rejection, opportunistic infections,
and development of malignancy via immune-modulating
effects.

But WTH does that mean??

At this point he is 16 months post TP. He was symptomatic with night sweats, headache and extreme fatigue which prompted the testing resulting in the positive CMV diagnosis.

Post Edited (diamonte) : 11/16/2015 9:05:22 AM (GMT-7)

✚ New Topic ✚ Reply