I am now 66y old, and had a liver transplant in Sept 2022. First I was recovering well, then picked up CMV (cyto megalo virus(!)). Developing kidney problems, currently 21% kidney function, and creatinine of 230.
Can anyone offer any thoughts, advice etc? Grateful for your input.
I hope someone reaches out to you. My husband was transplanted in mid 2021 and, thankfully, hasn't suffered from that. I know Jayhawker has struggled with CMV for a long time as have others in this community. There are treatments for it which often require lowering certain (or switching) immunosuppressants. If you don't hear from anyone directly, please "search" for information on this site. You'll likely find great advice. It's hard going through things like this. Sending encouragement that your situation straightens out soon.
Hi taar. I received a liver transplant in 2016. I agree with Darlenia that Jaywalker has a lot of knowledge on CMV. I haven't had it, but my kidney has taken a hit from the tacrolimus (immunosuppressant) as well as my GI system. My gfr floats between 25-28, creatinine around 2. If there are any questions I can help with feel free to reach out.
Thanks for this, I will seek out Jaywalkers posts. Take care of your self.
I’m sure you do not relish the idea of another surgery, but once your kidney function (GFR) is down to 20% you are eligible for transplant. I know someone who got both a kidney and liver transplant but I believe they were at the same time, not sure. There do exist some drugs to treat CMV, you might as your doctors if you can have them? They probably would have, but you can ask - be sure to contact your transplant center.. Your creatnine cannot be 230. It is 2.3. If it was 230, you’d be dead.
Thanks for the info, it is appreciated. It is in the liver consultant's ketter as 230. but perhaps that is a typo. I am seeing her on Monday, so I will ask. Interesting re 20% level...makes the heart sink a bit, doesn't it? Hopefully it won't come to that.
Re the CMV, I was on Valganciclovir for about 6m, and it did seem to do the trick, though the CMV did seem to be the start of my post transplant issues, and I kind of feel I have not got back to how good I was feeling shortly after the transplant itself. But glad to still be here and still enjoying life. So much so that even though I could have taken state retirement 6m ago decided to carry on working post retirement age, though down to 2 days a week. I enjoy my job, it isn't too physical and is good for the brain...! 
I think there is a difference between Creatinine CLEARANCE and Creatinine SERUM levels test. Creatinine clearance is reported as milliliters of creatinine per minute per body surface area (mL/min/BSA). The typical range for men, 19 to 75 years old, is 77 to 160 mL/min/BSA. The typical range, by age, for creatinine clearance in women is as follows: 18 to 29 years: 78 to 161 mL/min/BSA.
it never hurts to get on the list and start building up wait time. . You can turn down any kidney offered to you and not lose your place on the list.
Thanks for the insight...having been through liver transplant etc, I feel I know quite a bit about liver issues, but I still have lots to learn on the "kidney" side of things. Thanks again.
HI taar, My husband over 5 yrs ago in Nov 2018 had his first kidney transplant/never on dialysis and the first 14 months were filled with assorted serious problems such as rejection of kidney, kidney not sending hormone to bone marrow to make more red blood cells, then the CMV virus arrived 9 months after transplant while he still was dealing with red blood cell production too low. His transplant team in another state that we commuted to often were aggressive on finding answers and they were very assorted to combat the CMV virus which lasted Aug 2019-early Jan 2020, then it was gone. So late January he got his first blood work that was good then 6 weeks later, covid19 arrived. So how you are reacting very concerned is 'normal' and I'd be leaning hard on your transplant team to get things "right". I wish you the best.
Thank you for the kind thoughts. Life is a bit of a rollercoaster, isn't it. As we Brits say, Keep Calm and Carry On. Thanks again and good luck to you and yours.
I wish you ALL the very best to have a healthy body taar.
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