Anyone having issues wih cmv? I had bad case in april very sick and hospitalized,numbers were close to 2000000!left hospital after that and covid at same time with cmv numbers down aroind 10000 and sent home on oral galclovir and bloodwork a month out down to 5600 but next month climbed to 11000 and last week up again to 22000,im still on the galciclovr or whatever the hell its called,and dont feel sick but worried.Man if it isnt one thing it is another.Anyone else having CMV issues
CMV Questions: Anyone having issues wih... - Kidney Transplant
CMV Questions
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Parkerbarker
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I was diagnosed w CMV after about 1 year after my second kidney transplant. One of the worst things I’ve ever experienced. I was on the brink of rejection. After 8 days in the hospital I was released BUT prescribed a medication that I HAD TO TAKE FOR A YEAR STRAIGHT. The most disgusting medicine ever, and I’ve taken a lot of meds. Labs were completed weekly with no exception. It took a whole year before my blood tests were “somewhat normal.” Although till this day my transplant blood work has never looked the same after CMV. Example: Prior to CMV my creatinine level was .9 , POST CMV my creatinine level @1.9 - 2.0 . My kidney transplant team till this day reminds me of how “scared & nervous “ they were when my CMV test came back positive. I’m sending you healing energy & please remember that you’re not alone in this situation. 🫶🏽🫶🏽🫶🏽
Yeah i was in hospital for 10 days so sick and contracted covid same time,i was on iv galvaclovir for a week then orals ,strange thing was as sick as i was my creatinine was lower in hospital then it had ever been!Oh yeah and i had cdiff too at same time.I was on 4 antibiotics.They have upped my valgaclovir from 900mg a day to 1800 a day for a week then back to the 900 a day ive been on but i had blood test sent of to see if ive developed a resistance to the vagaclovir but that takes like 2 week for results ifnot longer. My creatine actually was down 2 labs ago (3 weeks) then up slightly last week .Another weird thing is 3 weeks ago labs showed wbc elevated which usually indicates infection and my CVM nubers rising but last week my Cvm doubled but WBC vack to normal🤔
I had CMV two years after transplant. Counts for away high. I was in the hospital for four weeks on IVs of Gangcyclovere …. special concoction made by the pharmacy twice a day. I went home after four weeks got a blood clot in my leg. I was back in the hospital for another week. I was on the meds for six months & after that they took me off of Myfortic as they felt like that may have been a trigger for the CMV and put me on Imuron. It is always something…. enjoy the good days.
Myfortic a “trigger for CMV”. I’m not following that. Were you a CMV positive recipient pre-transplant?
My team has told me that Myfortic decreases WBC count. But they have not said that it caused my recent bout of CMV. I was CMV negative as a kidney recipient but my donor kidney was CMV positive. I got CMV from my donor kidney, not Myfortic.
My CMV data rose from nothing detected to 8350 over 2 weeks. They immediately put me on 1800 mg Valcyte a day 900mg morning and 900mg evening. Over 4 weeks my CMV data went down to where it rests now, <35. It’s been <35 for 4 consecutive weeks now. I was not hospitalized. I had a moderate headache, coughs, a sore throat and some sinus congestion with my case of CMV. No fever though. I felt like I had a severe seasonal allergy attack or a cold. This lasted about 2-3 weeks only decreasing noticeably when I started taking Valcyte. They ran labs on me weekly throughout and still are until my next appointment on Aug 22.
Apparently I was in the high risk group (R-/D+) for CMV as well as CMV recurrence following initial episode. I’m just hoping I won’t experience a recurrence.
Jayhawker
Hello Parkerbarker, I had CMV about 8 months after my transplant in 2017 and it was awful, I was in and out of the hospital, I did the all the medications, I had a catheter put in my chest and given a very strong medicine called foscarnet at home my wife administered it and the numbers went down for a while but went right back up after only weeks but an infectious control Dr. stepped in and gave me a medicine that was for bone marrow transplant patients & it was a game changer, I was the first person at the University of Alabama Birmingham to be giving this medication and the CMV dropped from 200,000 to 200 in a matter of weeks the medication is called Letermovir and that was back in January 2018 & I’m a few weeks away from having my kidney 6 years on August 26th and I have had no more issues with CMV Parkerbarker I wouldn’t sell you false hope because I’ve been there to go through all the trouble of getting a kidney transplant to only think months later your about to loss it to CMV it’s a horrible feeling so ask your Dr. about Letermovir and if your Drs. are not sure about this medicine tell them to call the University of Alabama in Birmingham, AL infectious control department they are the number 1 transplant hospital in the entire southeastern US I’m sorry I went so long but it pains me to see my fellow kidney transplant survivors suffer from CMV when their is help for it by taking a pill bless you Parkerbarker and consider what I said
Thanks for the information!I was just reading and watching a video with a reknown transplant doctor and the studies done with letermovir and another one maltiver.Im going to mention to my dr and im wondering if available only in usa.They have send off a resistance test to the vangalclovir and i think if it comes back as resistant they they can apply for special permission to pharmacutical company and health cnada to be supllied it if my situation fits all the perimeters.That is what they had to do with getting me off tacro and on to beltacept as belatacept isnt available in canada yet.
That’s awesome Parkerbarker I’m praying for you &I hope everything works out for you
Thank you
Right now im on iv foscarnet at home infusions every 12 hours.supposed to be on it for a month and i hate it makes me so tired and nausea.I have come up antibiotic resistant to the othere meds.doont know about letervimr if it in same class as others.
Hello ParkerBarker. I had CMV last winter, 5 months after my transplant. I was hospitalized for 2 weeks and treated with valgancyclovir. A biopsy was done on my new kidney and CMV as well as BKV were present. My WBC dropped and so I was given two injections to raise my WBCs. I continued on the oral meds at home for a couple of months until CMV was no longer present. I did get very sick from it and was continuously nauseated and had bouts of vomiting. I had been exposed to it in the workplace and so I was positive for CMV while my donor was negative. My count had gone as high as 332,000. I am still dealing with BKV, but it is coming down. It has affected my kidney function, unfortunately, but I feel well otherwise. I hope you experience a complete recovery soon. All the best!
Jayhawker in reply to
First, I’m sorry you’re going through all of this. I hope the BK gets under control soon!
You mentioned you developed low WBC count. Was that associated with the CMV, the BK, or both? And also, have you needed more injections to bring your WBC count back up or did two injections take care of it?
Jayhawker
Didnt have bk,just cvm,my leukocytes went up on their own while i was taking vangalclovir even though cvm numbers rising and lyphocytes alway super low.Im waiting for results about valganclovir dna but i want them to swith me to mericlovir and quit screwing around.
I caa a n certainly understand your frustration. My team has not made any real forward progress creating a permanent solution to my extreme low EBC count. The Neupogen injections pull it up some but it doesn’t stay up for more than a week at best and the injections are causing very severe muscle skeletal pain with me. Ugh
Jayhawker
in reply to Jayhawker
Hi Jayhawker! Although I do not know for certain, I believe my low WBC came from the CMV, or possibly the combination. I have not needed any further injections to raise my WBC, so I suspect it was really was the CMV that was the actual culprit. I have been all over the place with BKV, and am trending downward. My best creatinine level after transplant was 127. I am now at 326. If I did the conversions correctly, that's 1.43 to 3.68 mg/dL, according to the US measurement .
Jayhawker in reply to
Sigh… Hope you get past BK very soon!
I know my CMV was a mild case. I’m certainly thankful for that. Just want to see my WBC count elevate into the low normal range and stay there. I’m 8 1/2 months post transplant at this point. All these labss and doctor appointments are exhausting. And that’s without factoring in the stress all this creates!
Jayhawker
in reply to Jayhawker
Jayhawker, thank you for your kind wishes. The appointments get to be a bit much, especially when you are not feeling tip-top. I travel about 2.5 hours to see my team, so I appreciate any time I can do a phone appointment. The injections I was given is called Neupogen. I was monitored closely because apparently people can experience side effects, but I didn't experience any. I can't imagine that low WBCs is acceptable for any period of time. Perhaps you need to remind them??? 😮
Jayhawker in reply to
they’re well aware. I get labs weekly. I inject neupogen twice weekly. With the neupogen my WBC count only gets to 3.0-3.5 at best. It only stays above 3.0 for a week at best. Obviously something else is driving this problem. They don’t seem to be able to figure it out. I’m frustrated and tired of living in a holding pattern. And I have pretty severe bone and muscle pain from neupogen. Ugh!
Jayhawker
in reply to Jayhawker
Hi Jayhawker. I am sorry that I missed a previous comment you made about being on Neupogen. That has to be very frustrating. I was looking into valgancyclovir again last night and read that it can cause low WBCs. I was looking into it because my teeth/gums have been sensitive to cold since taking the med. I guess I will be seeing the dentist to check to make sure something else isn't at play. The timing could be a coincidence, but I get regular checkups and never have dental issues. All this is to say, wow! These drugs are tricky and can be a double-edged sword. I am so sorry you are going through this. CKD is hard enough. Transplantation can definitely be a new lease on life, but it comes with its own challenges too. I'll be keeping you in prayer, Jayhawker.😌
Jayhawker in reply to
Yes, Valcyte does lower WBC counts. So does Myfortic, apparently. These meds really are complicated. The side effects can be problematic and are definitely individual to a certain extent.
Fortunately my kidney is still working very well though. It weathered my CMV without loss of function; although, they caught my CMV very early and pulled it into check in 3-4 weeks. Fingers crossed that I don’t have another round with CMV since I’m apparently high risk for that as well. I can’t help but think having more WBC would help hold off a recurrence of CMV but am not sure what the docs would say about that. I’ll ask in my next appointment. Regardless, I’m tired of worrying about all of this. Im also beyond tired of dealing with the Neupogen injections!
Jayhawker
Yes that's what I would say to my husband too it's like you know I just want to get through a day without having to worry about this that or the other thing it's so frustrating it's like goes on and on and keeps you awake at night what's happening is this happening is that happening I just want to stretch of at least you know 6 months where I'm not worried about getting this that or the other thing or side effects from this that or the other thing like is that too much to ask I'm feeling crappy or crappier from this double dose of the valganclovir that this doctor's prescribed me that I felt energetic and everything before I started taking it and now I'm just tired all the time back aches headaches last night I woke up with heart palpitations it felt like I wasn't getting oxygenated so I've written a letter to the transplant team say I want to be switched to mericlovir or whatever it's called that has a better efficacy rate with high risk patients like me
Yes, Valcyte caused many of those same side effects with me too. My team wanted to send me out the door to a cardiologist. I said not until we get me off Valcyte and see if the heart palpitations continue. They began when I was put in that Med. They are a somewhat common side effect of that medication, etc.. I'm running to sooooo many labs and doc appt now. I did not want to add another unless it was truly needed. When they pulled me back off Valcyte the palpitations went away. It seems pretty clear to me that my heart palpitations were due to Valcyte.
Jayhawker
Well as an experiment today i took only 1 valganclovir instead of 2 this morning and low and behold tiredness improved greatly,felt like doing something other then lay in bed,back ache almost gone and same with side ache.Also the double dose make my lymph nodes in neck enlarge and get were cysts along kidney area under skin ,lymph nodes too possible.all i know is im not doing double dose anymore as it is toxic to me and dr can go blow
I can definitely understand your frustration; however, VMV is very dangerous for the kidney. So, I stated in regular contact with the transplant center even as I complied with their dosing, etc.
Frankly, I don’t think I could forgive myself if I took action without approval from my transplant team that resulted in loss of the kidney. I find I feel a responsibility to do my best with the kidney to honor the donor and their family.
I haven’t had to take a neupogen injection since July 28 due to my labs. There is no doubt that I feel better without the injection; although, it takes nearly a week post injection before I feel much better. Thankfully my WBC vount from labs this past Wednesday were almost in the normal range. That’s the first time the Sara has been .05 away from normal since last February. I’m guardedly optimistic at this point as this is definitely the best data I’ve seen in months. Fingers crossed that my WBC is at least this good again next Wednesday. Whatever it does next week will be without Neupogen support as it was this past Wednesday.
Jayhawker
Parkerbarker in reply to
Yes i ended up in hospital for 10 days too very sick with it count was 2,300000! Was extremely pissed at my transplant team who was i started getting sick and telling them i had diarrhea,severe nausea and exhaustion,they blew me off and said go to a walk in clinic.I have zero faith in them as they have had so many misteps with my transplant,aftercare,drugs.I almost died and was extremely lucky my kidney didnt reject cause of it.1 year post transplant and i tokd my husbabd i feel like im a contestant in squid games.Forced to play a life or death game barely make it thru then on to the next life threatening challange and the majority has been totally preventable but screw up after screw up from transplant team
Parkerbarker, I am really sorry for all that you have gone through and are currently experiencing as a transplant patient. Your experience is shocking to read about. Your CMV numbers were insane! You must have been suffering terribly! I hope you will have the opportunity at some point to offer critical feedback to the hospital administration about your experience. Transplant programs in the US seem to be fairly competitive, but I suppose it depends on whether there actually is competition in the region. All teams want good outcomes because it reflects well on them. This is why it is especially shocking to learn about your experience. I am Going to keep you in prayer for a resolution to your health care. Keep the forum updated as to how you are doing. All the best.😊
Parkerbarker in reply to
Thank you and yes i did let hospital client care know about this and numerous other screw ups.
Hi Parkerbarker,
First, let me say that I very much sympathize with your difficult situation, and I fear that I am heading down the same path, but I am earlier in the process than you.
My first bout of CMV was in September which was 3 mos post transplant. I had lots of symptoms such as weight loss, nausea, fatigue. I was sleeping about 16 hours a day. Oddly, I didn’t have a fever, and so my medical team did not think it was anything serious. After it was diagnosed as CMV, they increased my daily dosage of valganciclovir and my viral load fell all the way to 800 over several weeks. Then the next week it had gone back up to 1500 and then to 5000. We now know that it has become resistant, and I have just been switched to Livtencity antiviral. According to what I’ve read, it has a fairly high liklihood of becoming resistant as well. As some of the folks that replied to your post have mentioned, it certainly does seem to be one thing after another. I think the problem is that the treatments have such serious side effects that it is a delicate balancing act. Fix one problem and cause another. In my case, Kidney function is moving in the wrong direction, I’m anemic, have a very low white blood cell count, resistant CMV and financial challenges from these drug cost and loss of work.
But somehow, I don’t feel too depressed. I guess I just think that it’s still better than dialysis. My kidney disease was slowly progressing over a period of years. I had a long time to build up dread and fear of the unknown as my kidneys were slowly failing. With all the problems that I am experiencing, it’s still not as bad as what I had feared.
PS - That CMV antiviral called Livtencity taste awful!
Best wishes to you Parkerbarker, Jayhawker and everyone who has this problem and those who responded with support.
Hello Parkerbarker, How long ago was your transplant? My spouse the first 14 months after his transplant 11/28/18 was filled with constant different major problems leaving him to be a couch potato then covid arrived. He also got CMV virus Aug 2019 and ended Jan 2020, but I was giving him a shot 2-3 times a week once a day to get rid of th is. I don't recall the medication name. Everyone's journey is different I've learned after 5 yrs after his transplant and the side effects from the meds he takes for life is our biggest hurdle nothing has fixed to improve. I hope you find answers. I feel for you though. I think if transplant shared with you the problems and remedies in detail, few people would run to obtain the transplant-to be very honest from our experience. Some people seem to live a very full life a year after they get the gifted kidney, and that is not our situation. SEnding ou hugs.
16 months ago,im on foscarneet iv every 12 hours for a month and 2 weeks into it i reallly wondering if it is killing me as i am so sick from it and cantt eat ,cant get out of bed,just wanna curl up and go ti sleep forever.
Thanks for writing. My spouse the first 14 mos : after 2 mos he had organ rejection-low grade, then found his hemoglobin was very low due to new kidney not creating the hormone that tells your bone marrow to make more red blood cells, so on a med for that for about 8 or 9 mos and that all was Feb/March then in August white blood count very off and CMV virus found and on another medication for that through Jan 2020. So first 14 mos he was in alot of challenges with new kidney at age 59 and never on dialysis. Then covid19 arrived and we have been living isolated from 3/2020 to now (no I'm not kidding). The risk we feel is serious about this and my research I continue to do at the library on medical journals I have access to. He still did not recover from the low energy and felt better before the transplant with low GFR. TAlk to your transplant doctors or get another opinion OR wait it out. Things take time to reverse it seems. I realize this is all hard to read. I care from afar.
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