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TransplantBuddies.org Forums » Kidney - Pancreas Transplant » CMV - what has been your experience « Previous Next »
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Zosimos
Member
Username: Zosimos

Post Number: 2
Registered: 10-2011
Posted on Friday, May 11, 2012 - 06:20 am:   Edit Post Delete Post Print Post

Hi everyone. I am very much interested in your experiences with CMV. Since I am currently CMV negative, I am concerned with contracting CMV via the transplanted kidney and the inevitable side effects. My doctor said not to worry because it can be controlled with antivirals. This will be my second transplant and am not sure if it would be better to wait a little longer for a CMV negative kidney to become available or maybe it is not a big deal. Doctors feedback is very helpful but the members of this board are the true experts. Thank you for the consideration.
Cora
Member
Username: Cora

Post Number: 476
Registered: 06-2007
Posted on Friday, May 11, 2012 - 07:12 am:   Edit Post Delete Post Print Post

I got very sick despite the antivirals and spent months in hospital. I had other issues though (like gastroparesis) that were made worse by the cmv. All in all for me I wish I had waited for a cmv negative pancreas. I would have been better off.

Cora
Dx with T1 in 1966
Kidney tx in Minneapolis 2002
Pancreas tx in 2008
CiscoKidney07
Forum Leader
Username: Gregg

Post Number: 5452
Registered: 03-2008
Posted on Friday, May 11, 2012 - 07:21 am:   Edit Post Delete Post Print Post

As you have said you are, I was CMV negative and my donor was CMV positive. They put me on valcyte for this very reason for nine months after transplant. I was also made aware of what the symptoms were, so when I got it within a month of stopping valcyte, I called my post transplant coordinator I had it. Because it was mild for me (I think that part of this was my realizing what I had quickly) they had to have it confirmed by blood work. When it came back, they knew I had it. I was taken off cellcept (due to wbc) and put back on valcyte until my numbers improved. I was then put back on cellcept at half dose. When wbc started to be a problem again, it was off of cellcept for good. I do think that they increased my prograf in order to make up for no cellcept, but I currently take 2mg a.m. and p.m., which I don't think is too much considering I was able to dump the cellcept. Good luck!
Never underestimate what you can do if you believe

Check out my daily fitness blog postings
sssteph
Member
Username: Sssteph

Post Number: 11
Registered: 12-2011
Posted on Friday, May 11, 2012 - 12:32 pm:   Edit Post Delete Post Print Post

I was also CMV neg, but received CMV positive kidney. I was on Valcyte for 6 months and have been off of it for 2, but so far knock on wood, CMV tests have come up negative. I have talked to a few people who have had it and said that it wasn't too bad, but I know that everyone has different experiences with it. Just know the symptoms like Cisco said and you can deal with it quickly. I was never told about CMV prior to tx and I was also not told that my donor was CMV positive until 2 months after tx. I think I might have waited for a negative kidney had I known about it. We really don't need more to deal with than we already do.
Kidney/Pancreas 9/13/11
Scripps Green Hospital, La Jolla CA

"Dream like you will live forever,
Live like you only have today"-unknown
CiscoKidney07
Forum Leader
Username: Gregg

Post Number: 5453
Registered: 03-2008
Posted on Friday, May 11, 2012 - 04:09 pm:   Edit Post Delete Post Print Post

Actually sssteph, remember that about 80% of the public has had CMV by the time they are adults, so I don't necessarily think that waiting for a CMV negative kidney would necessarily be a good thing--you might wait for too long. I know that having so many things to deal with is not a good thing, but never getting a kidney would be worse.
Never underestimate what you can do if you believe

Check out my daily fitness blog postings
sssteph
Member
Username: Sssteph

Post Number: 12
Registered: 12-2011
Posted on Friday, May 11, 2012 - 06:18 pm:   Edit Post Delete Post Print Post

I agree with you Cisco. My Neph told me I could turn down organs since I still felt well with 17% working kidneys and she said that since they had been holding steady for some time I could probably go one for several years until I felt sick, I considered it, but once I got "the call" turning them down did not even enter my mind or seem like a good idea. I am glad that I chose to take the ones that were given. They responded right away and so far I have not had an issues. Yes, that # of 80% positive adults is kinda shocking because I hear about a lot of tx people who were neg before tx. And...if 80% have it I wonder why not more people know they have it (I didn't know what it was till they told me my donor had it), even tho in healthy people they are usually never affected by it.
Kidney/Pancreas 9/13/11
Scripps Green Hospital, La Jolla CA

"Dream like you will live forever,
Live like you only have today"-unknown
missamber
Member
Username: Missamber

Post Number: 110
Registered: 05-2008
Posted on Monday, May 14, 2012 - 02:38 pm:   Edit Post Delete Post Print Post

My donor was positive, I was negative. My doctor and nurse never told me about CMV and wasn't put on antivirals when I was transplanted. Long story short, I was in ICU for a week and in the hospital for a month after getting cmv pneumonia. I think if the clinic had put me on antivirals I wouldn't have such a serious consequences.
Kidney Transplant 2008. My brother donated.
Alaskagal
Member
Username: Cheathers

Post Number: 107
Registered: 06-2011
Posted on Monday, May 14, 2012 - 03:11 pm:   Edit Post Delete Post Print Post

So far, as I am only 8 months out, and 2 months since dropping Acyclivar and Bactrim, I haven't tested for it. Both my donor and I were tested positive, so that makes us a moderate risk. I also didn't know about this until after the transplant. It's hard to know what questions to ask, especially since I am in Alaska and the communication with the transplant center in Seattle wasn't all that good.
Kidney tx Aug. 23, 2011 Seattle Swedish Hospital.
Morley905
Member
Username: Morley905

Post Number: 109
Registered: 07-2009
Posted on Sunday, May 20, 2012 - 01:14 pm:   Edit Post Delete Post Print Post

In Canada, positive organs are not transplanted into negative transplant patients and vice-versa.
Simultaneous Kidney/Pancreas Transplant - Aug 2008
grace
Member
Username: Graceb

Post Number: 13
Registered: 02-2012
Posted on Friday, June 08, 2012 - 11:52 pm:   Edit Post Delete Post Print Post

How long is the risk for getting CMV? They generally put you on anti-virals for 6 months post transplant? My brother too just got a K/P transplant; he was negative, and the donor was positive for CMV....As long as you are on the anti-virals, will this prevent CMV? Why don't people stay on anti-virals long term?

Also, What are the symptoms of CMV?
still alive
Member
Username: Carl

Post Number: 92
Registered: 01-2011
Posted on Sunday, June 17, 2012 - 11:05 pm:   Edit Post Delete Post Print Post

Hi Grace - I was CMV negative and rec'd a CMV negative organ but caught it along the way - i am super clean but picked it up somehow in a hospital/public transport, work who knows? Anyway I have CMV in the Bowel which gives me Ulcers in the lower bowel... I am on and off Valcyte - pretty strong drug that knocks you around with some nasty side effects (main one i get is anaemia as interferes with the production of haemoglobin. Also the tablets make me really tired and dizzy up to 4 hours after taking one. CMV is a bastard - can get in your lungs, eyes, bowels etc -make you blind, pneumonia/death etc if not treated...Sometimes hard to find whether you have CMV- They could not detect CMV in my blood but stayed in bowels happily creating mayhem...Despite the anti-viral side-effects they keep the virus under control as once when it got a bit out of control i had vomiting, diarrhea and massive pain (9/10 in pain scale) in my lower torso (bowels) for about 2 weeks till the Valcyte got it under control - If you look up Valcyte you will see all the possible side effects - this is why you dont stay on it long term unless you really have to
Alaskagal
Member
Username: Cheathers

Post Number: 115
Registered: 06-2011
Posted on Monday, June 18, 2012 - 01:51 pm:   Edit Post Delete Post Print Post

Wow still alive! Here I was thinking that I am doing fine because my labs are clear of cmv..... but I still have pain and fatigue a lot. Both my donor and myself had were positive..... I had some rashes, stabbing muscle pains, as well as the fatigue, and so they put me back on acyclovir for a period..... rash went away, but still fatigue.
Kidney tx Aug. 23, 2011 Seattle Swedish Hospital.
Alaskagal
Member
Username: Cheathers

Post Number: 116
Registered: 06-2011
Posted on Monday, June 18, 2012 - 02:27 pm:   Edit Post Delete Post Print Post

And also, I wanted to ask you, still alive, how did they finally diagnose that you had CMV, if it wasn't through the blood test?
Kidney tx Aug. 23, 2011 Seattle Swedish Hospital.
still alive
Member
Username: Carl

Post Number: 93
Registered: 01-2011
Posted on Tuesday, June 19, 2012 - 06:35 pm:   Edit Post Delete Post Print Post

Alaskagal - they finally diagnosed CMV after a second colonoscopy - They took something like 40 tissue samples along the bowels and tested 8 samples for CMV - One sample came back positive - They already started treating me for CMV - they were uncertain for a while if i had chromes as same sort of symptoms but just took and educated guess that CMV even though they could not find it for quite some time.
grace
Member
Username: Graceb

Post Number: 17
Registered: 02-2012
Posted on Wednesday, June 20, 2012 - 10:10 am:   Edit Post Delete Post Print Post

Carl/Still Alive -- CMV sounds so yucky! That's amazing they were able to diagnose yours during the 2nd colonoscopy. Have you gotten off the Valcyte? My brother is still on valcyte because it is only month 2 post transplant; he's having a slew of other complications (still at Cedar's in ICU after 30 days post transplant). K/P surgery is a major ordeal!

Once you have CMV, are you always trying to avoid a flare-up or outbreak? How do you deal with it now?

Thanks
Grace
still alive
Member
Username: Carl

Post Number: 94
Registered: 01-2011
Posted on Wednesday, June 20, 2012 - 08:18 pm:   Edit Post Delete Post Print Post

Hi Grace - I used to be on and off Valcyte depending when the CMV flared up but as i get older and being over 20 years on immunosuppressant each subsequent flare up got worse. The last flare-up (early this year) resulted in 6 weeks off work and many clinic visits so it looks like i will be on Valcyte for a long time (years) now - hopefully one tablet a day down the track - I deal with the side effects by taking my morning tablets when i get to work so i am not going to work feeling spaced out (on trains, walking in crowds) and can just do my work sitting at the computer where it doesn’t really matter if i get real tired or dizzy on and off for a few hours.

I am not a naturopath and very sceptical about natural remedies/aids but i found taking 100% Aloe Vera juice and virgin coconut oil really helped with CMV related stomach/bowel cramps - more than probiotics. There is some research with coconut oil and CMV treatment and Aloe Vera juice for stomach and bowel wellbeing. I take what i read on heath sites with a grain of salt as they are looking to sell you products. Either it's consequence or mind over matter but the first time i took Aloe Vera juice on empty stomach within 30 minutes spasmodic pain in bowels was gone. I don’t know if the coconut oil is helping but hopefully it is aiding the Valcyte -Been taking both for about 3 weeks now and fell better overall and have less pain than i did before

Everyone is different - I have CMV+ friends have only had to go on Valcyte on one 3 months course in the past 10 years - The virus must just effect people differently. Hopefully your brother will only be on Valcyte till he gets stronger and his body will be able to suppress the virus. Unfortunately you cannot avoid flare-ups as far as I know besides the normal things - exercise, try to minimise stress, try to eat healthy most of the times, try not to get run down, take things slow when you have cold/other health issues etc - from what i understand CMV is an opportunistic virus and will multiply when you’re sick/rundown/stressed as your body is less able to fight it off

I would bring in your brother some natural honey (darker the better - make certain its not honey that bees are just feed sugar water), Aloe Vera juice and virgin coconut oil and get him to have a bit each day if you can afford to. Ask doctors beforehand like any supplements if it is ok for him to have it. No clinical trials say it works and i don’t know if it works but it seems to help me. My doctor said its fine as long as i continue to take my medication -He is sceptical of it all but said anything that may help is never a waste of time - but maybe money :-)

All the best to your brother
John S
Member
Username: John_s

Post Number: 90
Registered: 06-2007


Posted on Saturday, June 15, 2013 - 01:26 pm:   Edit Post Delete Post Print Post

I had an infection that near killed me and caused me to go into rejection. I will search for it. I really don't want the whole thing up again. It was 1year after my transplant.
PKD
Kidney Transplant April 9 2007
Living Donor Judy, My angel on the left.
The Johns Hopkins Hospital
John S
Member
Username: John_s

Post Number: 91
Registered: 06-2007


Posted on Saturday, June 15, 2013 - 04:52 pm:   Edit Post Delete Post Print Post

As promised. Not easy searching for previous post.
One year after transplant I was admitted to the hospital with a CMV infection that had spread to my lungs. I was intubated for 22 days and 9 transfusions later I was transferred out of MICU. I was complaining prior to that of a spiking fever swollen gums diarrhea and malaise. CMV of the lungs requiring intubation is usually fatal. The short story is they had to take me off my immune suppression that untimely led to a 1B rejection. After two steroid pulses and crippling Mylopathy I was able to walk again without a walker. Bottom line CMV in an immune suppressed patient can be fatal. Foscarnet is hard on the kidney and is used if Valcyte is not effective and the CMV shows resistance to it. Before the infection my creatinine was 1.0 now id is 1.5. My cellcept levels were very high 2X what was expected. After the bout in ICU the CMV kept coming back. My new doctor reduced my cellcept from 1000mg twice a day to 500mg twice a day. I do not get as sick as I did my first year and my cellcept levels are where that should be.

That’s why they call it the practice of medicine. Creatinine now 1.2
PKD
Kidney Transplant April 9 2007
Living Donor Judy, My angel on the left.
The Johns Hopkins Hospital
CiscoKidney07
Forum Leader
Username: Gregg

Post Number: 5524
Registered: 03-2008
Posted on Monday, June 17, 2013 - 09:32 am:   Edit Post Delete Post Print Post

One of the things that I am glad about is that I was informed about what the symptoms of CMV were early on. I was on an antiviral for 9 months post transplant. As soon as I started to feel different-mild fever and a little more tired than what I had been, I knew I had it and informed my tx center that I thought that was the case. They did testing with my regular lab work and confirmed it. They took me off of cellcept, put me back on the antiviral until everything went away, then put me back on cellcept at half dose. It started to come back, so they put me back on the antiviral and took away the cellcept. Once the antiviral did its work, they decided not to do anything except increase my prograf. I no longer take cellcept.
Never underestimate what you can do if you believe

Check out my daily fitness blog postings
Baldur
Member
Username: Baldur

Post Number: 1
Registered: 07-2013
Posted on Sunday, July 07, 2013 - 08:13 am:   Edit Post Delete Post Print Post

I got CMV pneumonia back in 2009 (and I had my transplant back in 1997). It almost killed me. I stayed in the ICU for two weeks under the ventilator until they figured out what it was. Also, my kidney function started decreasing after this infection. I was put on anti-viral for some period of time, and I feek OK now but my kidney is slowly failing and I would need a another transplant soon.
missamber
Member
Username: Missamber

Post Number: 112
Registered: 05-2008
Posted on Wednesday, January 15, 2014 - 11:05 am:   Edit Post Delete Post Print Post

Baldur and John S,

I too had CMV pneumonia in 2008 and ended up in ICU, nearly died. I guess we are very lucky to be alive :-)
Kidney Transplant 2008. My brother donated.

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