So I have been on the iv forscanet infusions total of almost 8weeks now starting with every 12 hours for the first 4 weeks and i got a undetected result for first time ever ,then they dropped my forscanet dose to every 48 hours which even i thought was too fast a drop, should have been every 24 then to every 48 but the infectious disease doctor who has been monitoring my case ordered it at least i think he did who knows what goes in behind scenes as no one tells you.I normally would have said" hey this seems fast ",but I was just so glad to stop the every 12 hours as the side effects were brutal,I just thought great only every 48 hours.Never mind the fact I live out of the city and have to drive every day 20 miles into town to pick up meds as forscarnet only good for 24 hours once mixed.So anyways we do that and I'm on the 48 dose for 4 day and I'm getting blood work done every 2 days to watch my creatinine,potassium,magnesium,calcium as forscanet sucked those out and harms kidney potentually and then of course the cmv viral loads.So during my every 12 hours stint electrolytes in the toilet creatitnie up from 97 to 158 at highest and so yeah i was glad to cut back foscarnet dose to every 48 hours but the first cmv loads check after 4 days on that dose , loads went from undetected to 1278 then next bloodwork a week later jumped again to 1689.So back up to dose of once every 24 hours and have been on that for just about two weeks and last bloodwork yesterday viral load dropped to 1247.Im like f***,is this freaking virus ever going to piss off.I talked to my transplant doctor about stopping my mycrophenolate until loads become to nothing as Jaywalker said his did and the research shows, too but they were like"oh no you are already on a low dose and worried about rejection"ugh so what am i going to be hooked to this iv for the next 6 months with god knows what forscanet doing to my kidney,the creatinine holding around 125 to 135 each bloodwork but that is alot more then the 97.
Cmv ongoing challenge: So I have been on... - Kidney Transplant
Cmv ongoing challenge
Hello Parkerbarker, My spouse who had CMV took meds at home for around 6 mos, but it was not complicated like you describe. I know I had to give him an injection of ? medication 3X a week. This CMV came on after his organ rejection 2.5 mos after surgery, then hemoglobin was very low for many months and a shot I gave him for that, and then CMV virus came on 6 mos later and lasted 6 mos, after a total of 14 months of assorted serious problems after Nov 2018 transplant, his blood chemistry was very good and has stayed that way. I hope you have a very good supportive person in y our life through all this serious ongoing mayhem. My heart feels for you and wish this was not happening. All I've learned in 5 yrs post transplant is every person receiving a kidney their journey is very personal and can be different. I hope you have trust in your doctors who are doing their best for you. Do you feel trust in your team? I am sending you positive thoughts , I really am that something very good will arrive to fix this problem soon.
Unfortunately i dont trust my team.They have has so nany mistepscin my care due to not properly monitoring my bloodwork and i cant even get a second opinion as they are the only game in town
Parkerbarker,
I was pulled off Myfortic specifically because I have T-LGL leukemia. Apparently the type of leukemia I’ve got causes Myfortic to be a problem with regard to CMV management. I do not believe I’d have been pulled off Myfortic if I didn’t have leukemia.
Jayhawker
Wellbi definitely see a correlation between mycrophenolate and the drop in my lymphoctes,which are needed to fight anything
Just an idea, but hospitals in the US with or without a transplant clinic have a dept that takes complaints. Had you thought of reaching out to whatever name that is called at your facility that is at a much higher level. Your kidney and your life depend on your continuing to advocate for yourself. I know you are sick and tired of dealing with all this. If you have a partner, family member or close friend who can do this action for you or get it started may be a good idea too.
Just checking in to see how you’re doing now?
Jayhawker
Very discouraged.Been on this iv forscarnet now 3 months and only one no virus load derected.The test 3 weeks ago 200,then 2 weeks ago jumped to 900,then they bumped up forscarnet dose and last test 600 but still no detect.Plus the bump up in dose are again making side effects unbearable.My digestive system is shot,cant eat,stomach pains,diarrhea,extreme exhaustion everyday is hell.I saw my transplant team and they wanted to start me on cytogam treatments every weak for 2 months along with my forscarnet but when i researched that treatment it said it's contradictions were not to be given with neophrotoxic drugs which forcanet is or to people with renal impairment which also my transplant kidney is being only 40% ,as this cancause acute renal failure! So i said now way,plus hod knows what side effects tgat would cause too.Im pretty sure this treatment is slowly killing me,i feel it in my being and Im about ready to stop it and take what comes as at least I would have a qualitt of life left as opposed to this non life with no end in sight.
Are you home at this point? Also, do your doctors know that you are close yo discontinuing treatment? I hope you have someone you trust going with you to your appointments. I actually started keeping a video/audio diary when my situation was at its worst. I played portions of it for my nephrologist and others during appointments. I thought they needed to see and hear me on my bad days, especially since I live alone and often attended appointments by myself.
Until we each face this sort of challenge it’s impossible to understand let alone determine what we’d do. It’s just so difficult; even worse when we feel so poorly.
You’re on my mind and in my thoughts. You truly need the dream team of physicians on your case!
Jayhawker
Yes im at home and thank god for my husband and ive told my neuphologist how i feel how this is draining me physically,emotionally and physically he said he understands but no he doesnt.
Glad you’re home.
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