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1750760 tn?1411486076
Good News, Not So Good News - CMV
Hello All,

The good news is that I got my new liver on August 23rd, 2014 - surgery want well and I am recovering quickly.

However this past Friday I learned that my donor was CMV+, and that I am CMV-.

This is not good because not only do I not have the developed anti-bodies the most of the population has (>80%), now my immune system is greatly suppressed.

I am on the anti-viral Valcyte for the next 6 months, but the virus often appears after the Valcyte is stopped.

What I have read about this is a kind of scary -  http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2739936/

I am hoping to hear from some of you that might have experience with this or greater knowledge (mikesimon, hector, orphaned hawk, ?)

Thank you all so much in advance !

Brian
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317787 tn?1473362051
Hey there! I am so happy for you!
I did not know what CMV was so I looked it up, found someone asking a question and a doctor answering, not sure it will help you, I hope so
I think it would be a wonderful idea to post this on the cirrhosis forum as well.
Take Care my friend, Dee

http://www.medhelp.org/posts/STDs/CMV/show/1543074
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I didn't have an issue with CMV so I really know almost nothing about it. I did look at the article you posted and see reason for optimism.

If I understand your situation you do not yet have clinical symptoms of the disease. Therefore your treatment would be characterized as preemptive therapy which is the preferred approach.

"....Three meta-analyses that collectively analyzed data from prospective clinical trials confirmed the efficacy and benefits of preemptive therapy in the prevention of CMV disease[34,35,62]. When conducted properly, preemptive therapy, with the use of oral ganciclovir, IV ganciclovir, or valganciclovir resulted in reduction of CMV disease by about 70%[34,35,62]. Moreover, preemptive therapy is not associated with late onset CMV disease (unlike with antiviral prophylaxis, as discussed below)[55,59]. Currently, valganciclovir is the most commonly used drug for preemptive therapy, and in one study, was demonstrated to be as effective in terms of clinical and virologic response, when compared with IV ganciclovir[55,59]. In addition, preemptive therapy may be beneficial in reducing the indirect effects of CMV. In one study, the incidence of major opportunistic infections, bacteremia, bacterial infection, HCV recurrence, and rejection were not significantly different between liver transplant patients who received preemptive therapy and those who did not have CMV reactivation[63]...."

The only thing I have to offer is that the most important factor is that you have confidence and trust in your doctor(s). If you do, then follow their directions to the letter - absolute compliance - and then try not to agonize over your situation. I can tell you from my experience that worrying about every conceivable negative eventuality never helped me one little bit but I sure wasted a lot of time doing just that.

I want to congratulate you on your transplant and allow me to wish you the very best going forward. Expect the best Brian!

Be well,
Mike
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Congratulations on getting your liver transplant!  You are one of the very few lucky ones who have been blessed with a gift of life from a special donor. May he or she rest in peace.

My husband received his liver transplant in June, 2012. He, too, was negative for the CMV virus but his donor liver was positive. He too was put on Valcyte for 6 months. Although undetected for the virus when he completed treatment,  he was tested for the virus until March of this liver. He remained undetected.  CMV can be dangerous for transplant patients. This link actually states it should not be given to liver transplant patients.
http://www.valcyte.com/patient/disease-information/transplants-and-cmv

I think doctors weigh which is the bigger risk - giving the patient Valcyte or letting the patient develop CMV disease (which can lead to graft loss). In my husband's case, the doctors made the right decision giving it to him.

I hope his story will give you confidence in your doctor's decision.
Keep us posted.
Nan
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Correcting some typos in my post above:
Although undetected for the virus when he completed treatment,  he was tested for the virus until March of this year. He remained undetected.  CMV can be dangerous for transplant patients. This link actually states Valcyte should not be given to liver transplant patients.
http://www.valcyte.com/patient/disease-information/transplants-and-cmv

I think doctors weigh which is the bigger risk - giving the patient Valcyte or letting the patient develop CMV disease (which can lead to graft loss). In my husband's case, the doctors made the right decision giving it to him.

I hope his story will give you confidence in your doctor's decision.
Keep us posted.
Nan
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29837 tn?1414538248
Ironically, I had a problem as well. A weird one... My donor had syphilis, which they found in the donor's liver, but they decided to transplant anyway.. Naturally I was sweating bullets and asked the doctor if this was a possible death sentence or if I would have to have a different liver put in. Sweat gathered on my forehead, my pulse was at least 120, and a strange frightened look on my face, reminiscent of some Twilight Zone episode faces, a dark frown filled my forehead with nurses looking at me in horror. The doctor said not to worry. What? I said what? After a couple of shots of penicillin, streptomycin and some anti-biotic drips, away it went. I hope your situation goes away as well...

Magnum
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163305 tn?1333672171
Congrats on your new liver and welcome to the survivor's club.
I wish I could offer advice on CMV but I know nothing about it. However, I think you've gotten some good advice from  Nan, Mike and Dee.

Don't worry ! You are on your way to a renewed healthy life. Yes, there's an obstacle but at least your liver is healthy and you can beat this !!!
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1750760 tn?1411486076
To Dee1956; mikesimon; nan535; Magnum; orphanedhawk

Wow ! I am a bit over whelmed, though not surprised, by the wonderful advice and support all of you have shown me. Thank you all so much. This is just another reminder of how truly blessed I am, and I am quite grateful.

I apologize for the delay in my reply, and will reply to each of you.

Brian



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1750760 tn?1411486076
Dee,

Thank you so much for your continuing support. I think I have known you the longest and we went through HCV triple treatment around the same time.

I always smile when I see your "picture" around here and you have been an amazing continuing presence in more than one community, always ready to answer a question and offer support.

Always good to hear from you. Let me know what your hepatologist said when you have a minute.
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1750760 tn?1411486076
Mike,

Thank you very much for your reply and support. It means a lot, as I consider you to be one of the "elder statesmen/stateswomen" around here.

It turns out that my team went with antiviral prophylaxis because of my D+/R- status, and I have been on anti-virals since the beginning, and will continue for a total of 6 months, ending around next March.

I hope to speak with some of my team next visit in more detail about all this and I will keep you updated.

I hope you are doing well and hope to talk to you further sometime - thanks again.
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1750760 tn?1411486076
Nan,

Wow - thank you so much for your reply. It is good to be reminded how truly lucky and blessed I am to have gotten this very special gift of life. I am struck by this nearly everyday, especially when learning of other people's stories, people who have been through much more than I have and are still waiting, or those who have been transplanted and are struggling with much more serious problems.

Thank you for sharing the story of your husband's experience with CMV and valcyte. It was exactly what I need to hear.

The valcyte link was a little sobering - I knew that valcyte wasn't approved for use in liver TP's by the FDC from the article I read, but I hadn't seen that before. But I agree that the doctors weigh the pro and cons and make the best the decision they can. From the articles I've read it sounds like this is the way the majority of TP centers handle this situation.

I am so glad that your husband has come through CMV negative !

I was sorry to read in your profile that he has not been successful in eliminating his HVC....yet, and that it was a pretty rough ride during treatment. I wish him and yourself all good thoughts in continuing this fight.

If there is anything I can do please let me know - thank you both.

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1750760 tn?1411486076
Magnum,

Thank you for your reply and your story and your good wishes.

I hope this finds you doing better and in less pain.

re your post on spinal columns:
I had a lumbar lamenectomy at L5/S1 around 25 years ago. It went well, it cured the pain. I was a telephone lineman at the time and was back to work (light duty) in 3 weeks and climbing poles in 3 months. Of course this was not quite the same as the surgery you mentioned elsewhere but I wish you similar luck, a speedy recovery, and hope to hear you are skydiving real soon !
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1750760 tn?1411486076
Hi orphanedhawk

Thank you so much for your reply and good wishes. I consider you another "elder stateswoman" (you are 114!), so I always have a high regard for your posts.

You were kind enough to correspond with me in April of 2013, just after I found out about my HCC and as I was being referred for my first TP evaluation and first TACE treatment. Seems like so long ago...

I just re-read that exchange and wanted to thank you again.

I was struck by your last post in that exchange where you mentioned: "When my husband saw me after my transplant, he remarked on how he'd forgotten the 'real' color of my skin. The change was that quick. "

Numerous people have commented to me since my TP, "wow...your color looks great.., your color is so good now..."etc.  It is quite amazing indeed.

I hope all is well with you and your family - thank you again
Brian
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