Well after ending up in hospital back in april with cmv viral loads of 20000000.I was discharged at virals of around 20000,after doing rounds of iv valganclovir in hospital then went home on the oral, the loads started creeping up and they found i got a resistance to that so was switched to the new maribivar and was doing great with loads down to 2700.Then I got a bad uti and dont know if this caused my cmv numbers to jump but they jumped from 2700 to 98000 to 274000 to 498000 in a matter of a week! Even though I dont feel sick from thise numbers at all but they think i have developed a resistance to the maribivir so they are wanting to put me on iv foscarnet and would have to have everyday for 1 month.
Foscarnet is toxic to kidneys never mind the very serious otger side effects and quite frankly i dont want it.I didnt go thru all this bullshit with this transplanted kidney in the last 14 months since i got it to have it get destroyed as the kidney i got was only a 50% one but my creatinine been pretty good with it at anywhere between 92 to 120.so like 43 to 53 gfr.
The foscarnet causes low hemoglobin,which i already have since ny uti and low leuckocytes.
It is like these drs dont see the forest for the trees,all they focused on is getting numbers down but never mind all the other bad crap that happens iinstead.I just wantt to say no,let my body try and fight it off now I gave gotten rid of bad uti.
Has anyone else been on foscarnet?
Plus they said they have never used before so that doesnt exactly instill confidence.
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The only things i can offer are prayers and positive thoughts as I have no experience with the issues you are having. But, as so many on this forum, do, you msy have to assert yourself and tell the doctors what you want to do and how you wish to proceed. Hoping others can share some of their actual experiences to help you make some good decisions.
I really feel for you...one thing after another. Like drmind, I can't really advise since my hubby has managed to avoid catching CMV with his transplant. But I know that CMV itself can harm your new kidney. In my view, you're between a rock and hard place. My hubby has had to make difficult decisions too - taking risks on medications and scans that could harm his new kidney to solve other problems (fungal matters, brain injuries, etc.). Throughout, we recognized that sometimes it's best to to go with it because all would be lost ultimately if nothing was done. So, it's all about your risk tolerances regarding benefits and risks and separating "fears" from "facts". (Often emotion drives people more than logic.) Interestingly, doing nothing at all is also a decision. May you come to a decision that gives you peace.
Well i think that quality of life is better then quantity, but what i really would like to know is anyone out there with a transplant that for years gas managed to stay healthy and not have 20 other issues cone up instead!
Have they figured out what’s causing this spiking CMV in your case? It sounds like they’re just trying to knock it down without getting to the cause.
Although I’m not thrilled with my recent leukemia diagnosis , it is clear that the leukemia has been the culprit with my resistant CMV as well as my chronic severely low WBC count. Understanding what’s caused both problems should help my medical teams to develop and implement treatment plans to get my renal data (and performance) calm and stable.
I’d be consistently and strongly advocating for my team to get the causal factor(s) identified. If they can’t figure it out, bring some top experts to the table to get their thoughts… At some point they will run out of viable treatment medications. Thus, I’d pressure them now, before we reach that point. At a minimum of ask them what they plan to do when there are no more medications to try…
I think it was because i had that uti that popped up at the same time and they didnt give me antibiotics for it as i wasnt showing usual systoms so they said they didnt want to treat with antibiotics and cause a resisitance though how that can happen when i had one according to u/a and cultureso then it brewed there for a month and blew up into urospepsis and i ended up right now in hospital for 2 weeks fighting to get rid of that but transplant team trying to say no correlation and i call bullshit and they just trying to cover their asses as twice before them dropping the ball has been to my detdiment.
Your CMV viral load numbers are just so extremely high… I can’t help but think there has to be something else going on to create viral load data in this high range.
My transplant team essentially wrung their hands when my dangerously low WBC count raged from the first week of Feb through the second week of Aug. It was obvious they didn’t understand what was going on. They were frustrated. I did not feel well and was exhausted. (This isn’t easy to navigate living alone.)
The nurse in the infusion center where I went for Neupogen injections started asking me questions. It became clear from her questions that she was seeing correlations between my response to Neupogen and responses she saw in some of her cancer patients as well as very different than what she saw with those few solid organ transplant patients she treated.
It turns out that in my case the infusion center nurse was likely seeing some critical red flags regarding my case. I find that nurses are often very effective diagnosticians…
Well, I just hope they get your case figured out. This sort of thing has to calm down—as patients we each reach a breaking point with all of this medical stuff; a point where we’ve had enough and just want to walk away from everything. We just need a break from the unending labs and doctors’ appointments let alone medical procedures and hospital stays. I’d love to have just one week without lab and/or doctor appointments. Unfortunately I have no hope of that occurring for at least another 10-12 weeks. Ugh
Glad to see you respond. The human body is incredibly complex and mysterious; I'm convinced that sometimes one has a guardian angel that sees things that others (including ourselves) haven't considered. I'm trusting that your case turns out to be very mild and be easily treated. And that you'll finally get a break from those endless labs and doctor visits.
As I’ve said in at least one other post, I’m not thrilled with the leukemia diagnosis but at least my transplant CBC and CMV data make sense now. Those mysteries have been solved. Based upon what the cancer center nurse said yesterday, I have a good chance that my cancer is one that progresses slowly. She said that what I have is extremely rare but typically progresses very slowly. They don’t know what causes it. She talked about treatments frequently used to treat flare ups and that these treatments aren’t typically used unless the patient is presenting active problems with levels of lymphocytes and neutrophils as well as anemia. Of course I’m presenting all three right now. So, the doctor may decide to administer chemo for 4-6 weeks when he sees me in January. She said that it was very helpful that I’m getting weekly labs run right now as he’ll have a lot of data to determine progression; although, he may want to run additional tests.
She was helpful. I appreciate the time she spent with me yesterday afternoon.
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