What symptoms did you have from having CMV virus?

[Gardner-NY]

My spouse had his kidney transplant 9 months ago and for 7 months still has low iron stores and hemoglobin. Last week new issue of UTI (he does not feel symptoms) and also CVM is at 13,000 count in blood work. I am not sure if 13,000 is super bad or what to think. If you had CMV before, and I know it is common to get, did you have symptoms ? Thanks. We see the transplant dr. tomorrow.

[akanksha9479]

Hi dear. I had my liver transplant 18 months back and four months post transplant I developed severe pain in abdomen, diarrhoea and vomiting for a week with my blood counts showing slight pancytopenia. After having done many investigations, I was found to be suffering from CMV infection. I was given gancicylovir IV for a week and I was cured. Hope this helps! All the best!

[Gardner-NY in reply to akanksha9479]

Thanks for writing your experience. HIgh doses of Valcyte is what he's taking for 3 months. He was on it for 6 months post transplant and stopped late May, so the dr. has lab work of CMV every week and this drug should take care of it. If not there is another drug given by shot form, but we'll wait and see how this works first. I hope you are now all well. It is indeed a journey for me to watch and intervene to help him when he needs it as his wife/caregiver.

[kimmie55]

Was he on Valcyte after transplant? My living donor tested positive for CMV, so I was on that for 6 mos...7 yrs later I've had no issues. How is his WBC count?

[Gardner-NY in reply to kimmie55]

HI kimmie55, yes for 6 mos on Valcyte and every 3 month lab work to see if CMV was evident and it wasn't. WE found out yesterday at our transplant dr appt that the donor 'had' CMV and understand more that my spouse obtained CMV from the donor. The doctors seem to feel this Valcyte high dose for 3 mos will handle this, and if not they have a plan B. thanks for writing. The past 7 months have been a difficult journey with new problems every single month.

[Dara3351]

I was on Valcyte for 6 months. I had vomiting episodes for a few months Did not have CMV but once I stopped these meal delivery kits my vomiting stopped.

[Gardner-NY in reply to Dara3351]

HI Dara3351, Very sorry about your side effects. The CMV my spouse has recently he does not have any side effects with it. HE was on Valcyte for 6 mos post transplant and that ended late May, so the CMV we found out yesterday came from the donor kidney and now my spouse takes Valcyte as of last Friday at a high dose for 3 months is the game plan. Thanks for sharing.

[chicago17]

I had c.m v i couldn't stop going to the toilet every time I ate something and I was quite breathless I was put on high dose of antibiotics and it has now cleared up .

[Gardner-NY in reply to chicago17]

Hello Chicago17, thanks for sharing your experience with CMV. Sounds awful with side effects and I am glad to hear you are much better now. My spouse has a UTI infection and the CMV and no side effects from either. He's on an antibiotic for the UTI and on Valcyte "again" in higher dose for 3 mos and CMV will be ck'd every week by lab work. I wish you great health in the days ahead. We are still waiting to have a month of 'no' problem to deal with for the past 7 months. We just keep moving onward and keep our heads up.

[Tarzan5]

I never had CMV, but I did get the BK virus after 13 months post transplant. I had no symptoms other then a bad pain in my back on the left side close to my hip. My creatinine level came up to 2.7 from a base line of 1.4 for 13 months. They thought it might be rejection and performed a Kidney biopsy and discovered what it was. The only cure is to reduce the rejection meds, but my creatinine continued to rise to 3.7 within one week and my BK level continued to rise.to 7,000,000 copies per ml. They admitted me into the hospital and administrated a IGIV once a day for 4 days and reduced the rejection meds to 1mg of pro graf in the am and 1mg in the pm. The BK virus 🦠 finally started to come down it took about 2 months to finally get rid of it.

The only problem was it scared my transplanted kidney and now my creatinine level is staying around 3.0 to 3.5, it’s seems to be ok at that level, but I’m not sure how long it will last now. I was very disappointed that with all the labs I had been doing that they did not check for the BK virus before it actually damaged my kidney. I had never even heard of it before. They increased my rejection meds back to 2 mg in the am and 2 in the pm, but they are checking for the BK virus now. I feel bad for my daughter who donated her kidney to me.

My understanding is that it’s a tight balance between the rejection meds and the BK virus without the meds more then likely you will have rejection.

[Gardner-NY in reply to Tarzan5]

Hi Tarzan5, Thanks for writing with such 'details' of your ordeal, and wow, it was an ordeal and I am so very sorry you had to go through it. I hope you are well now. My husband with new kidney for 9 months now and I went to transplant yesterday for a scheduled once a month appointment. The CMV we found out the donor had CMV, but my husband did not for we wanted to know where it came from. Also my husband was on Valcyte 6 months after transplant and that protocol med stopped and 'normal' every 3 months testing of CMV resumed and after white count plummeted in 30 days from 7.8 to 1.5 early August, they test CVM every week and still do. It is now 13,000 as of last week (lab work not available on this yesterday yet, but nephrologist has seen CMV over a million before). Spouse has no symptoms with this and he also has a UTI found last week and no symptoms and on antibiotics for that 7 days. The Valcyte is being given at high dose 3 months then a tapered down dose for a few months after that is the game plan told yesterday. If the weekly CMV # keeps climbing then there a shot of meds that can be given stronger than Valcyte, but not there yet. The white count has gone down again from 4.8 last week to 2.77 yesterday. The one good thing 'finally' is his hemoglobin is 9.0. For 7 months it is has been 7.5 or lower and he has extreme fatigue physically. Yesterday I could see a more energetic person with me all day and night, first time in 7 months. So now we deal with CMV and UTI problems. I guess the 195mg of iron pills a day since 7/15/19 are working with hemoglobin to go up "finally".

I hope you are on the mend now.

[Gardner-NY in reply to Tarzan5]

Hi Tarzan5, I forgot to mention the CMV coming up, my spouse does take less Cellcept antirejection med along with Valcyte.