Post transplant advice! and CMV

[whiskeyfrank]

I had my transplant from my mum in January and things have been fantastic, my mums great and back to normal (if there is a normal). I was up walking the day after the transplant and home after 6 days - and back at work after 10 days (yes I know that’s silly) but there it is. creat is 120 - 122 always and all results great.

After a month I changed to 10 minute hospital visits every 2 weeks.  Even after having to go back for a hernia repair I was still up and running 2 miles a day and swimming every day, even got back to the gym after 7 weeks.

I know this sounds great however, people like me (and there are lots unfortunately) who have been sick for so long, once you get a transplant and it works, I personally felt indestructible - and I wasn’t.

7 days after coming off valgancyclovir I started to feel ill, sickness and diarrhea constantly, but I pushed on ignoring it and after 10 days found myself in hospital again on an I/V of gancyclovir as I now have CMV. This was last Friday and im only just coming to terms with more drugs and starting again.

Im not saying people shouldn’t exercise, in fact the opposite, but also don’t do what I did and ignore symptoms of illness after a transplant . I have been a very stupid boy (as the nurses told me). I looked at symptoms and just thought I had a bug - but we as kidney patients don’t get simple bugs do we!

I now know im not a super hero and will listen to my body just that little bit more from now on.

Im much better now and mums still telling me off (and im 40!)

[kellyt]

Surprisingly I was CMV negative and my donor was positive.  I was told pre transplant that I was positive, so you can imagine my slight anger when I was told post transplant that I was not positive.  I did 9 weeks of a weekly IVIG treatment at the hospital starting the week after I was discharged.  I was a huge pain, but I have not been sick one day post transplant, other than allergies which usually last a day or two.

Send a message to Wenchi.  She had a bought with CMV post transplant, as well as Chris (I think).

Hang in there!

[jbeany]

I think moms reserve that right in perpetuity....

I think I'm doing the opposite.  Every sneeze and twinge and my mind instantly jumps to "OMG, something's wrong with the transplant!"  I got a screaming headache the other day, and was completely freaked out.  Then I looked at the clock, and realized I'd been so busy I hadn't eaten in 7 hours.  I've only had a working pancreas for the last 8 and half months out of the last 26 years, so I'm not used to being able to skip meals without my blood sugar bottoming out to remind me!  (The doc just recently lowered my prednisone, too, so I'm not used to going that long without trying to attack the fridge, either.)

[cariad]

I am CMV negative, while my donor was positive. I was put on Valcyte (valganciclovir) as soon as my WBC was up high enough. Supposedly I only have to take it for a year.

Sorry you went through that, whiskeyfrank, but congrats on the transplant and on feeling so well after the fact. I'm a wee bit envious of that superhero feeling, even if you were eventually forced back to earth somewhat.

Hope you have a swift and full recovery.

[kellyt]

I was also on Valcyte, but only for the first four months following transplant.  Thank goodness, cause that stuff is expensive!

[lou]

Had bloods this morning and they think I have CMV    (am 10 weeks since transplant) Does anyone know if this is anything to get too worried about??? Am waiting for results, they said I will know by thursday..... ahhhh!!! worry worry worry.....

[okarol]

So sorry you've had trouble with CMV whiskeyfrank. I have heard some centers are extending the period of Valcyte after transplant now.
lou - do you have any symptoms?

Jenna was put on Valcyte immediately following her transplant (for 3 months) even though she AND her donor were both CMV negative. They said it's precautionary. Now that she has been treated for rejection they once again started the Valcyte to protect her after crashing her immune system. I keep asking - why are you doing this ...?.... she and her donor were CMV negative, she is not involved in any relationships where there is an exchange of bodily fluids, and she's not exposed to anyone who is CMV positive, but they still think it's better to be cautious.

From: http://www.cdc.gov/cmv/facts.htm -- _
Transmission of CMV occurs from person to person, through close contact with body fluids (urine, saliva (spit), breast milk, blood, tears, semen, and vaginal fluids), but the chance of getting CMV infection from casual contact is very small.
Between 50% and 80% of adults in the United States are infected with CMV by 40 years of age

[jennyc]

My donor was CMV+ whilst i'm CMV-, they are planing to possibly keep me on val for 12 months, after reading this i'll be encouraging them to do it!

Good luck i hope it all works out. Like you i've been running the gauntlet since the transplant, after 7 years i forgot how it felt to be "healthy", i thought i was doing well on D but wow did i get a shock after the surgery. During the first week whilst my labs were high i though the food at the hospital tasted great, OMG when my creat hit about 250 i started spitting it out and getting hubs to actually cook for me (so sweet, he made me apricot chicken (from a packet, but this from the man who has only ever cooked 2x in his life).

Now i've started walking 4 kms a day and can't wait for the next surgery to be over to get back on the motorbike and cycle and run etc. A girl at the centre got a pre emptive living donor transplant and wont do much so i can totally see the difference, she is very hesitant (very happy though and really positive, just scared i guess).

Wonder if i should get hubs tested for CMV, i mean if he is positive they might want to do something else?

[BrandyChloe]

Wow, I'm so happy to find this thread. I am 5-1/2 months post transplant. Had everything checked at 4 months and all was well. No signs of rejection, etc. Creatinine still hanging at 1.5 - 1.7 but doctors think it will continue to drop.

I had been feeling bad for about a week (headaches off and on, etc. but never felt like I had a fever.) Well, after about a week, I checked my temp and I was running a fever of 100.4. Went to doc next day who sent me to emergency room, who sent me to neph when they couldn't find anything, who sent me to Mayo for extra blood work and turns out I tested positive for CMV.

I also took Valcyte for 3 months after transplant but they told me to keep my remaining pills in case I had to go back on them. Well, now I do! Was a very sobering experience since I had valid reasons for the headaches and was caught off guard when it turned out I had a virus that could hurt my transplant.