Getting CMV from my donor's Kidney... What to expect??

[Neo]

My donor was CMV positive and im negative.. The docs found it in my lab-work and have me on valcyte, but also they took me off my Myfortic. Should they do that? I know Myfortic is one of my main transplant meds.. Im nervous i could have a rejection that way... I know why they're doing it though.. I know they want to be able to raise the immune system a bit so i can fight the effects from the CMV but Im really nervous...What are the symptoms? I already have a few I have very low energy right now.. If you've had this experience please tell me what you went through and if your doc eased up on your transplant meds too... Thanks..

[cariad]

Sorry to hear this, Neo. I've not had the experience myself, but I have heard that with this virus and the BK virus that really the only thing to be done is to lower the immunosuppresant doses.

Knowing that your donor was CMV+, I am not sure why they did not have you on Valcyte from the start. But anyway, there are people who do just fine on only one immunosuppresant - I am assuming you are also on Prograf or similar. Tacro seems to be the more important drug of the two classes of immunosuppressant that most recipients are on.

Good luck.

[Chris]

Each person is diferent with their experience, but my first bout was painful because it effected my liver. Liver levels were high, liver was enlarged. However I did not develop CMV until the clinic stopped my Cytovene after 3 months. After getting treated and put back on Cytovene after my hospital stay and IV treatments at home. I developed CMV again after stopping the Cytovene again after 3 months. This time the effects were different. I was extrememly tired all the time, nauseated, more cold than usual. What I learned is each clinic has their own different protocol on monitoring for CMV. My clinic didn't monitor for it, but my first center I choose to have a transplant did check every month for CMV for 6 months and in center while my clinic had to send theirs out.
 
I was CMV- while my donor was CMV+

[okarol]

Jenna and her donor were both CMV negative but she still got 6 months of Valcyte. And after her rejection they had her on it for another year.

[kellyt]

The day before transplant I was told that I was + and my donor was -.  Then the day after transplant I was told that my donor was + and I
was -.  Grrrrr!      I was on Valcyte for about six week, but I also did 9 weeks of IVIG.    Good Luck, Neo!  I hope it doesn't cause you too much pain or trouble   

[Sugarlump]

Hi I got CMV infection with my first transplant.(Donor +, Me - ) First signs were a bit like flu, fever, shakes and was sick once over weekend. On Monday had bloodtest and was recalled straightaway back to hospital. Had to have central line put in for 3 months of iv drugs, which they taught me to do myself so I could get out of hospital! They dropped my other drugs down and I went into rejection, firstly acute attack, then continuing chronic rejection from which the kidney never recovered. This time with transplant no 2, Donor +, ME now +) had treatment right from start, to go on for 6 months
I believe the Myfortic drops your white cell count too low if a risk, although i am currently on low dose of it.
Depends a lot on how your immune system responds. Some people do fight it off.
Hope that helps.

[coravh]

My first symptom of the CMV was a massive drop in my white count. It was almost nonexistant. I did get nauseated but that did go away. They also lowered my immunosuppression significantly. I didn't have any rejections even though I went through this for 6 months.

Cora

[Neo]

Thanks guys... so far ive been too tired to do much and ive had cold symptoms and now a massive headache..  God i hope this doesnt get worse...

[Sugarlump]

Neo I also got bad joint pains particularly in my shoulders don't know if it was the CMV or medication for it but they hurt.

[natnnnat]

Gregory is newly diagnosed with CMV, which has manifested recently for the second time in 19 years, manifesting as the Diarrhea form.  When I say "newly diagnosed", he commented this morning that he thinks he had a bout of it just after his transplant when he was really sick for awhile.

I've been googling (as you do) and scaring myself, finally thought to check what people have already said here and found this thread and several others.  Paris gave me the idea, by mentioning that others have had it.

Looks like it can flare up in nasty ways for some people, but it generally behaves itself while your system is strong.  So the following list of symptoms which I have found, are about the flare ups, while the general day to day stuff sounds like its .. well, day to day.


from http://www.nlm.nih.gov/medlineplus/ency/article/000663.htm:

Symptoms

The symptoms of CMV infection are similar to those of mononucleosis. In fact, in a small percentage of people with mononucleosis, CMV is the cause. The symptoms of primary CMV infection are:

    * Fatigue
    * General discomfort, uneasiness, or ill feeling (malaise)
    * Joint stiffness
    * Loss of appetite
    * Muscle aches or joint pain
    * Night sweats
    * Prolonged fever
    * Sore throat
    * Swelling of the lymph nodes
    * Weakness
    * Weight loss

In immunocompromised people, CMV can attack specific organs. The major symptoms of these organ-specific infections are:

Eye:

    * Blindness
    * Floaters in the eye
    * Visual impairment

Lung:

    * Pneumonia with impaired oxygen uptake (hypoxia)

Gastrointestinal:

    * Diarrhea
    * Swallowing difficulties or pain
    * Ulcerations with bleeding

Brain:

    * Coma
    * Encephalitis with behavioral changes
    * Seizures

confusing ay?  Life threatening... and ordinary.  On anther small dialysis group I am with, a fellow described a really bad bout of it involving holes in the intestines.  So its not to be f*d with.  But as he said, that was 10 years ago, its been dormant ever since.

So my take home conclusion is:  keep a good healthy weight, eat properly, rest.... and it will probably be alright. 

[natnnnat]

Other IHD threads I found about it, which helped me in various ways:

http://ihatedialysis.com/forum/index.php?topic=22417.msg369064#msg369064

http://ihatedialysis.com/forum/index.php?topic=18471.msg318079#msg318079

http://ihatedialysis.com/forum/index.php?topic=18859.msg327834#msg327834

http://ihatedialysis.com/forum/index.php?topic=6086.msg90059#msg90059

see also, these:
http://www.nlm.nih.gov/medlineplus/ency/article/000663.htm
http://www.nlm.nih.gov/medlineplus/ency/article/000667.htm

[paris]

Nat---thanks for posting all those together.  The next person who has questions about CMV will look to you for the answers.  Saying some prayers for Gregory.   

[Jie]

The worst case scenario for CMV occurrence is donor + and patient -. For such a case, Valcyte should be taken right after transplant. When a patient has one of these three Vs: CMV, BKV, and EBV, the rejection risk increases due to reduction of the immu. medicines. We just don't have much choice and have to walk a fine line between preventing rejection and fighting the V.  Before I have BKV, my target range of prograf is 8-10 with a normal dosage of myfortic. Now with it, the target range for prograf is 4-6 without any myfortic. Just have to watch the rejection symptoms carefully and do labs more often.

[natnnnat]

Saying some prayers for Gregory.   

Your prayers are working Paris:  things are looking up.
We were back in clinic today to see if Gregory's system is traveling okay, we're on very frequent clinic visits at present while they oversee his progress.  He was at "1000", which is some measure of CMV in the system.  I google and find that "A value of 1000 implies that, while present, the level of CMV DNA is below the linear threshold of 1000 CMV DNA copies/mL plasma but above background levels. The clinical significance of CMV levels in this range is uncertain."   http://www.uams.edu/clinlab/Procedures/UAMS%20CMV.pdf  I don't actually know if this is what the registrar meant, but they *were* saying it was "threshold".
The question was whether or not to medicate for the CMV.  I raised the issue that Gregory was still on 12.5mg prednisalone, if they lowered that to 10mg (which was his normal dose for about 18 years or so) then maybe that would calm the CMV.  Before we went in, an alarm had sounded in the ward, signifying an "arrest".  Doctors and nurses had scurried off.  So we were being seen by a nurse, a very fine lady who we love and who has been part of Gregory's team for 21 years.  She went off to see the neph next door and came back saying:  Yes, lower prednisalone to 10mg, and change him off daily Bactrim and onto weekly trimethoprim and Dapsone. 

Gregory's creatnine, usually in the range of 280, has moved as follows:
2 weeks ago:  265
last week:  217
Today:  263

Apparently the Bactrim raises creatinine, so being taken off it might lower his creatinine. 
We were delighted with 217.  Its been a long time since we heard a figure like that.  It can be done!  Maybe we can get it under 200?  [ I think 200micro mol = 2.3 mg/dL - implies a formula 1 micro mol = 0.0115 mg/dL, or alternatively, 89.95652 micro mol = 1 mg/dL ]

After the smart-arsery regarding prednisalone and CMV, I decided not to ask big questions; anyway, I already think we've worked out what CMV is and what we should do about it.  I limited my fact finding to: "so we just keep Gregory healthy, and the CMV shouldn't be a problem, is that right? So for example, get a bit more flesh on his bones?"  The registrar (the fattest man I've met for awhile) nodded, yes.  And we were out into the relative sunshine of the hospital pharmacy.

We go back Thursday for another blood test.