CMV

[kidneytransplan]

Has anyone experienced the CMV virus?

[Sparkles614]

Hi, I have been treated for CMV twice. A few months after my first transplant, I had CMV in my lung. My doctor noticed I was SOB. I underwent a bronchoscopy with biopsy and that’s how it was diagnosed. That was in 1993 and the only medication was IV Ganciclovir. Then, in December 2018 I was diagnosed with CMV colitis. This was 9 years post-transplant and 25 years after my first diagnosis. My symptoms were severe diarrhea, multiple times a day for almost 3 months. CMV blood tests came back undetectable. Finally, I had a colonoscopy with biopsy and that’s how that was diagnosed. I took oral Valganciclivir for about 6 weeks. My doctors did take me off Myfortic in order for me to fight the virus off more effectively. It is a little scary to go off one of the transplant meds because there is a risk for rejection. But it’s really necessary. I had to have my labs drawn more frequently during that time. I’m not back on Myfortic yet, as my body doesn’t want to cooperate with the reintroduction of the medication. The biggest thing I will tell you is to be your own advocate where your care is concerned. I question pretty much everything. Not just in the case of CMV, but all of my health concerns. If you have any specific questions, I would be happy to try and help. Best wishes!

[Sparkles614]

Hello again, I forgot to mention you will never get “rid” of CMV. Once it’s treated successfully, it goes dormant in your body. Everyone has CMV in their bodies, but people who are immunocompromised are more susceptible to having an active case.

[kidneytransplan in reply to Sparkles614]

Thank you, I really appreciate your reply.

Re "being your own advocate" is really important. I knew I wasn't feeling like myself, catching one cold after another for a little over a month. My monthly blood draws were always excellent but I continued to tell my transplant medical team that something was wrong . I knew it wasn't me. Thank goodness I did.

If you can think of anything else that can help me, please let me know.

[Sparkles614 in reply to kidneytransplan]

Hi Kidneytranspla,

I will keep you in my thoughts and will definitely let you know if I think of anything else.

[kidneytransplan in reply to Sparkles614]

Well, I have the CMV again ! I had been free of it for only 3 weeks and it crept in again. I will have another blood draw in 2 days.

Question : I have been experiencing EXTREME sweating for past couple of days. Have you or anyone experienced this?

[Sparkles614 in reply to kidneytransplan]

I am so sorry to hear your CMV has returned. I understand how frustrating that is. I do have extreme sweating at times. I never really thought about it, but many of those times it was when I had CMV. Other times it has been when either my Tacro or Myfortic dose needed adjusting.” Sidmoesr” replied to a previous CMV post and mentioned their doctor switching them to Letermovir to treat their long term CMV. If you haven’t already spoken to your doctor about that med, it certainly wouldn’t hurt to ask. Remember, being your own advocate is the best thing you can do for yourself and your kidney. I will keep you in my thoughts and hope you begin feeling better soon. Please keep me posted. Best wishes!

[kidneytransplan in reply to Sparkles614]

Hi Again,

I had my blood work done today. I expect to get results the next 2 days. The CMV results take 2 days. I 'll keep you updated.

Question: Did you have any restrictions while the virus was active?

[Sparkles614 in reply to kidneytransplan]

Hi, No, I didn’t have any restrictions. However, I was extremely tired so I didn’t want to do much anyway. No dietary restrictions either. Let’s hope your labs are normal. Fingers crossed!

[sidmoesr]

Hello kidneytransplan, I received my transplant back in August of 2017 and in November of that same year I was diagnosed with CMV & was treated with valganciclovir by mouth it seem to be working and by December it was almost undetectable in my blood, it will always be in your system everyone carries it in their body but when your immune system is suppressed like ours it can flair up, so I thought I was done with CMV until January of 2018 it came back with a vengeance my level went from under 200 which is nearly undetectable to 13000 in a matter of days, so my infectious control Dr. put a picc line which is like a long term iv catheter in my chest and treated me with foscarnet, which is a very, very strong medicine and it works well but the downside is it can affect your kidney function & you have to take it every 12 hours but to my surprise it worked for a while then it stopped I was at the end of my rope, CMV level had reached 40,000 and going up everyday, then my Dr. heard about a new drug for bone marrow transplant patients with CMV that did not respond to valganciclovir, or foscarnet but responded well to the new drug which is Letermovir so the FDA gave it the ok for heart, lung & kidney transplant patients and these patients had the same awesome results so I was given this medicine for 8 weeks orally, with once a week blood work and the virus came down every week until it reached undetectable and has been that way for over a year, so ask your Dr. about Letermovir the trade name is Prevymis it saved my kidney because my CMV was resistant to everything else and I am doing great! I feel like my old self again my creatinine stays around 1.8 no higher than 2.0 Good Luck kidneytransplan.

[Sparkles614 in reply to sidmoesr]

Hi Sidmoesr,

I’m so glad your doctors figured out a successful treatment for your CMV. I certainly understand the frustrations that comes with dealing and coping with a difficult process to determine what is going on and then how to treat it. I’ve had CMV twice, 25 years apart. The doctors couldn’t believe it, especially since it was undetectable in my blood the second time around. Surprise, my body has a mind of it’s own and isn’t textbook anything. I guess that’s what makes life interesting. I wish you continued success with your transplant. Best wishes to you!

[sidmoesr in reply to Sparkles614]

Thanks Sparkles614 for the positive vibes I send positive vibes back to you 👍🏾

[kidneytransplan]

Thanks Sparkles,

I will keep you informed. This really shocked me and my doctor. The only signs were one cold after another and fatigue.

Again, Thank You !!

[chernandez]

Hi, my husband was treated for cmv after his transplant. He had a really bad case of it since they didn't catch it until late. Apparently they don't test for every time he had labs done. He had to get a port put in his chest and do infusions at home for over 2 months and take Valganciclivir pills. It was pretty bad! but he pulled through it and now his cmv is "undectable".

[kidneytransplan]

Thank you so much for responding. It is important for me to know the imprtance of having the doctor test for cmv. I now see the importance of early detection.

I am doing well. I have been on Valcyte 3 weeks and my count has gone down. My original count 36,000 and is now 300.

Again thank you so much.

[Jclegg]

I had my CMV become active 2 years post transplant. My symptoms were all GI. Took almost a year to become dormant again.