Edema post transplant

[Parkerbarker]

So one year post transplant and what a complete shitshow.It has been nothing but one thing after another.First got covid from hospital when transplanted,then when being treated in hospital for that picked up COP and had 2 weeks in isolation on iv antibiotics 3 times daily.Finally got home suffer horrible with none stop cramps and diarrhea from antirejection medications.I couldn't leave house fir more then 1hour because of it.Then find out tacrolimus is actually poisoning my kidney so back to hospital for biopsy and find out kidney down 20%,which apparently it was only a 60% when they harvested it.So switched me from tacro to beltacept but during the transition had me still on tacro for a month too,which in turn lowered my i.mune system so much that body one big bruise of red spots and bruises and also i picked because of being on the beltaceot,tacrolimus,cellcept,prednisone at the same time my immunr system picked up everything and tezted pisitive for jc virus for first time and 2 months later ended up in hospital again very sick with extreme nausea,vomiting and diarrhea,tiredness and extreme weakness.They diagnosed me withc diff which i think was a wrong diagnosed as given meds and sent home after 3 days but had to return to emergency 3 days later as near dead and diagnosed with cmv, and covid so back in hospital for 10days so sick wasnt sure i was making it out.Put on high doses steriods,valgancivor,and another antiobotic for lung infection from covid,o2 sats 82 and covid iv meds.So made it out alive but took 2 months to get my strength back as so weak couldnt walk 15 feet.Lost most of my hair that was just growing back.Surprizingly my creatinine levels while in hospital were lowest ever since transplant at 110 and i usually at around 135.Well finally get strength back and back to work but nephrologist still has me on higher dose on the valgancivor as when i left hospital my infectiin numbers had dropped from 76000000 when admitted down to 10000 but he wanted down more and kast was 5200 but still taking it.So now about two weeks ago start noticing puffiness under eyes,fluid in my legs and feet till now this last week edema so bad in my ankles feet that my anklet leaving mark and i feel like whole body retaining,whole body doesnt look lime it but feels like it and my body even pretransplant never had edema on feet and legs even at 5%function abd on dialysis just had puffiness under eyes.So now im like okay did cmv damage my kidney is it the meds i'm on or what the hell is going on now.I have zero faith in my transplant team as they have been dripping the ball at ever turn and it has been myself who has veen constantly auestioning and advocating for myself.If i hadnt been they would still have me on the tacrolimus! But that is another long story.So many of these meds have leg swelling as side effect,so is it that but i never got that before from them.Im just sick and disgusted with this whole situation now and goibg for bloodwork today and scared to see results.Anyone else have Cmv and had it affect kidney function or have meds suddenly cause swelling?

[Darlenia]

Sorry to hear about all your problems. I know some with transplants have had active cases of the CMV virus, but my hubby has escaped so far. It seems everyone has CMV and it does pop up for some on immunosuppressants. You're one of those unlucky ones. It's definitely not cool that it's a virus related to chickenpox and shingles. Thankfully, everyone seems to get over it okay after treatment. So hopefully you will too. You mentioned your creatinine numbers - my hubby's hovers around 1.8 or so and his eGfr hovers around 40. His match was "average". Apparently a single kidney may not take over the work of two kidneys so that probably plays a role in his labs. Thankfully, his team isn't worried about any of it. Really hoping your edema and virus goes away and your bumpy journey smooths out.

[Eyak1971]

I really cannot answer any of your specific questions other than to say there are a lot unknowns after a transplant. Primarily the medication to prevent rejection has some serious side effects. Due to the prednisone I have had hip replacement on one hip and planning for another. The stomach issues are common with any transplant patient. What it really comes down to is education. I attended multiple informational transplant meetings before a transplant and none centered on the side effects that one would experience after a transplant, physically and mentally. Do I regret having one, certainly not. But am I frustrated at times, yes. My daily health on PD seemed better but in the long run my life seems better with a transplant, more hopeful. In your case, maybe not. Considering a second opinion or going to another center are probably not options, but educating yourself is always helpful which is what you are doing on this forum. I hope you find the answers you need and your life and health start going in a positive direction. You may want to reach out for some type of direct emotional support to help you through this time. You should not go through this alone.

[Calebzztop]

Hello, just wanted to say I completely understand how you're feeling and I'm sorry you're going through all this....I also had to go off tacro early on because my kidney/graft vascular system is pretty terrible and I went on beltacept..this is my third transplant and this one has been one thing after another...I felt better immediately before this transplant and my numbers were better as far as electrolytes...I don't know what to think about my transplant team anymore..but I'm just trying to stay positive and do everything I can do to help myself and get back to some good quality life..I hope you feel better soon and know my first and second transplants had really bad times but MOST of the time it was good and I had many great years with them.. Best

[Parkerbarker in reply to Calebzztop]

Thanks now i have my cvm numbers going up again,i feel alright but they are worried and doubling my vanganclovir.Im starting to feel like im entered in the squid games! Oh survived that illness,on to the next round😔

[ShyeLoverDoctor]

Yep. Sounds like the definition of a shit show.