So I get a call from the transplant clinic this afternoon...

[kellyt]

and I'm soooooo disappointed!   Apparently, when they told me I was CMV "positive", they were wrong!  I'm negative and my donor was positive!

Now I have to go through the IVIG bullsh&t for the next, what,...long time!!!!!!!!!!  I was so mad I didn't really pay close attention.  Can someone verify this for me?  I think she said I have to go to the hospital for the 1.5 hr treatment every other week for 7 sessions and then once a month for a few times.   Does that sound right?

So disappointed!   

[pelagia]

Oh, sorry to hear this.  My husband was cmv negative and his donor was cmv positive.  He had to take Valcyte (an anti-viral) for three months.  He did not have the CMV-IVIG treatment.

Here's a relatively recent CMV thread.  I put some info on the CMV-IGIV therapy there (to keep it all together):

http://ihatedialysis.com/forum/index.php?topic=8934.0

[kellyt]

I think I'm already on Valcyte.  Bactrim and Valcyte.

[paris]

I am furious!   How could they have messed this up?  They had plenty of time, with a living donor to figure this out.  I just want to hit someone        I am sorry, Kelly.  Just let out a good scream!   Sending you big hugs and lots of love   

[Sluff]

Oh man what a mess, hopefully it won't effect you negatively long term.  I'm not real familiar with CMV.

[Wattle]

   Kelly that is one big stuff up! They had plenty of time to work it out.

I am also CMV negative and my Neph said that most of the population is positive. I seem to catch every other virus, just not the one I want. 

I hope they have worked out a suitable plan of action and you wont have any negative side effects.

[xtrememoosetrax]

OMG, that is unbelievable.  I'm so sorry, Kelly.  I can totally understand your disappointment and anger; this is infuriating.  I hope that once you get past this major disappointment and inconvenience, things will be okay and you won't have any long-term problems.  I'm sending you hugs, sympathy, and some righteous indignation!  Hang in there, sweetie. 

[paul.karen]

I dont know what this means Kelly. 
But it looks like it is a mess............

Please stay positive
Just casue your home doesnt mean the prayers for you have stopped.
P&K

[willieandwinnie]

Kelly, I'm not sure I'm understanding things. Len was negative and his donor was positive and the only thing Len was on was Valcyte for 1 year to the day. He did not have to get any IV's. I'd be interested to know the reasoning behind this. Let us know what they day and how it goes. Thinking about you. 

[cherpep]

What is CMV? 

[willieandwinnie]

cherpep check this link for some information on CMV.

http://ihatedialysis.com/forum/index.php?topic=8934.0

[kitkatz]

That is not a good thing to have happen.  So now you are going to have to do something about it.  Well you had a fairly easy transplant time, now it gets you in the butt. Here is to the one who screwed up. 

[kellyt]

Yes, I have to do the IVIG treatment every other week for like 7 sessions.  Apparently, this will keep me fomr getting CMV.  It better!   The nurse at the hospital said she's never had anyone come back after the treatment with CMV.

[Romona]

  Sorry Kelly.

[Joe Paul]

Sorry to hear this, good luck 

[okarol]

I posted a reply last night and it's not here? That's strange.

I was wondering whether or not they are using anti-viral meds in conjunction with the IVIG. I hadn't heard of any centers using the IVIG for CMV anymore, and I had heard that most patients are given oral Valcyte (valganciclovir) for approximately 3 months to prevent CMV. Jenna and her donor were both CMV negative, but Jenna was still given Valcyte as a precaution. The transplant team said that most adults are eventually exposed to CMV and that the risk will always be there for immunosuppressed patients.

Here are a couple of articles GANCICLOVIR PROPHYLAXIS IS MORE EFFECTIVE THAN INTRAVENOUS IMMUNOGLOBULIN (IVIG) IN PREVENTING CYTOMEGALOVIRUS (CMV)) DISEASE IN RENAL TRANSPLANT RECIPIENTS http://www.a-s-t.org/abstracts98/abs605.htm
and
I had heard that IVIG can actually cause a CMV negative patient to test positive. One such story is told here about Harvey (a blood cord transplant recipient):
 The immunoglobulins given in IVIG therapy are derived from the pooled blood of community volunteer donors. Since roughly 80% of adults in this country are CMV positive, it goes without saying that most of these generous blood donors are going to have immunoglobulins directed against CMV in their blood. When immune deficient patients like Harvey get IVIG therapy, they are “borrowing” strength from the lessons learned by the immune systems of healthy blood donors in their community. That is the whole point of doing IVIG therapy.

In other words, whether or not Harvey had been actually exposed to CMV virus at some point in his life, the fact that he has had IVIG therapy may be all the reason why he tested positive for this blood test. He may have the best of all possible scenarios, no traces of the actual virus itself in his body if he had never been exposed and therefore no potential risk of viral reactivation down the road, but lots of community acquired Ig protection against it because of his IVIG therapy. Also, the positive blood test for CMV-Ig means Fairview Hospital has him classified as “at risk” patient and therefore they go the extra mile in trying to prevent any possible reactivation - as in higher dose of anti-viral therapy and more robust monitoring for any sign of CMV reactivation.

I hope they give you the best care possible, but keep asking a lot of questions. 

[Slywalker]

Hi Kelly - I was CMV negative, my donor was positive and like others I was on bactrim (for first year) and Valcyte (for six months). 

In regards to getting through the transplant testing I can tell you that my experience was very frustrating but more for my donor than me.  I got lined up for all the tests and we hacked away at them.  Seem like a very lengthy period of time due to scheduling, cancellations of test, etc.  My donor on the other hand had a very bad experience just getting transplant coordinator to get tests scheduled, wouldn't return phone calls, scheduled transplant operation then canceled and insisted my donor had to tell me and not the transplant center - all in all not a positive experience from her side. 

As you know, in the end, all the downs will be worth the final UP.

Hang in there - keep thinking - this too shall pass.

Sandyb

    

[kellyt]

Thank you, Skywalker!

I am also taking the Bactim and Valcyte.  So hopefully all of this will protect me!

They showed me the paperwork for the CMV testing.  My result was 0.22 and for that reason they said positive.  But when they printed the range for "negative" it was 0.00 - 0.90.  I'm still confused about why they didn't know this already.  It's my assumption that it was my new coordinator, as my original coordinator quit around Oct 9th.

I think I'm moving too fast, though.  I had a little anxiety attack today because we were out making deposits and such and decided to pop in for some breakfast.  We sat at the counter and I didn't touch anything but the menu and promptly after that I used my Purex.  I sat there staring at the men in the kitchen and slowly the sounds of people all around me got a little louder.  I heard someone cough and I suddenly realized how crowded the place was.  I told my husband to make it "to go" and we left.

I will feel so f*&(cking stupid if I do something to lose this kidney!!!   I MUST STAY HOME FOR A WHILE!!!!!!!!   It's so hard when you feel so good!!!!!!!!!!         WHAAAAAA!

[donnia]

Kelly... I think it is way too early for you to go out into public places without a mask.  I didn't go out to eat... (actually inside a restaurant) for a good 2 months.  For the first 2 - 3 weeks I didn't go anywhere without my mask LOL!  Heck, for the first 2 weeks I even wore my mask in my car LOL!!!!

Seriously... you can never be too careful... right now you are so very vulnerable.... please take it slow   

[graftgurl]

Kelly, I had begun to wonder when you were coming back to see us!!   
Unfortunately, the news is not so good. I was furious to hear that once again the medical community dropped the ball. I am so, so sorry. Please know that we are all thinking of you.     I hope the time goes quickly for you. Hey, maybe I could drive down someday and we could "do lunch"?!!  A girl has to eat while dealing with unnecessary f@^#-ups by the idiots who are supposed to know what's going on, doesn't she?
Hang in there. While I'm there, I could take care of things for you, if you know what I mean...    

[RichardMEL]

kelly I think protecting this pecious gift is more important than anything else - and if that makes you feel funny about being out in public than so be it. Definitely you need to be very careful, specially with food you haven't prepared in terms of knowing it is hot enough, bacteria free and all that because that's so important that you do the best by your body - specially at this early stage when the meds and everything are still in flux.

You will be OK.. Remember #1 priority is to do the right thing by that kidney. Don't worry about feeling weird or stupid or funny.... it's your life!! Who cares what some bozos you'll never see again probably think? *hugs*

[kellyt]

kelly I think protecting this pecious gift is more important than anything else - and if that makes you feel funny about being out in public than so be it. Definitely you need to be very careful, specially with food you haven't prepared in terms of knowing it is hot enough, bacteria free and all that because that's so important that you do the best by your body - specially at this early stage when the meds and everything are still in flux.

You will be OK.. Remember #1 priority is to do the right thing by that kidney. Don't worry about feeling weird or stupid or funny.... it's your life!! Who cares what some bozos you'll never see again probably think? *hugs*

 

[Chris]

Here's my take. I was CMV negative and my donor was positive, so I had the IV stuff, but not like the schedule they are telling you and I was on cytovene capsules (Gancyclovirin capsule form). Valcyte is also used for CMV. However  don't let them cut you off from taking the med after only a few months unless they do test after stopping.

 My center had me stop taking the meds after 3 months and soon after I developed my first bout of CMV. They didn't routinely check for it, but if I went to the other transplant center they would have tested for 1 year post transplant if my memory served me correctly. I almost switched centers when my center fumbled on this, but getting to and from that hospital was to much of a challenge for me.

So when you go into clinic, don't talk to the coordinator, ask the nurse or doctor what the schedule is. Here they already had my appointments set up for the treatment, then had a home health nurse come to where I live to do it and then I did the treatment myself. Prepare for boredom there sitting or laying down while the treatment goes on.

Good Luck

[kellyt]

My IVIG treatment schedule is 7 sessions, every other week.  I had my 2nd session yesterday and I have 5 more to go!  I'm on the Bactrim and Valcyte for four months, plus the IVIG.  I'll definitely ask when they plan on testing me again.  Thanks for the advice!

The sessions are boring, but doable.  I'd be alot more happy if they moved a little faster.  What angers me is I get there at one time and they putter around for about 1 1/2 hrs before even setting the IV in my hand.  I just wish they would be there waiting on me instead of the other way around!  My first treatment I got there at 9:30 a.m. and they didn't get me on the IV until a little after 11 a.m.  Apparently, they have to mix the solution that day, blah, blah, blah.  But yesterday the admissions lady at the clinic didn't know I was also there to see the surgeon at 10 a.m. so she called over the the hospital and asked if they were ready for me and they said yes.  By the time I got there (11 a.m.) they were saying "Where have you been"?  ha ha   I guess they had the solution waiting in the fridge or something.  Tricked ya!!!!!!!!      But, I was the one who was tricked I guess.  I was still there 1 1/2 hrs before they hooked me up.  Darn it.

[Chris]

Kelly,
Does your center work with my center? They seem to be sharing their idiot side of the brain, errr team, errr just idiot workers!