Ok, I’m pretty disheartened this morning. My labs from last Thursday posted yesterday. I didn’t look at them until this morning as I wasn’t expecting bad news. I was wrong.
In short, the CMV is back. After testing “not detected” for close to 11 months, it is testing “abnormal.” And so round two of CMV begins.
I’m not sure I can take another 10-11 month ordeal with CMV. My strength has yet to rebound fully from the first round.
Well, that’s it. I’m just very disheartened…
Jayhawker
I am very sorry to hear this. I know you really went through a lot with that last time. I hope you know how to shake it now. I will be praying for you.
ugh! I’m so sorry! Transplant or I should even just say kidney disease sure is one heck of a roller coaster ride. Saying prayers you find the strength while you’re defeating it once again. Hoping it goes easier this time around.
Oh, not again praying and hoping that the positive this time is just a blip and managed easily. We're all here for you. Hang in.
You are one of the strongest people out there. The news is not good. But you will fight this round again. Sending all sorts of healing energy and light for a quick recovery.
sorry to hear but you are such a strong warrior I know it disheartening but keep on fighting
🙏🏻
Jayhawker, I understand why you feel low with this CMV returning. My hope is your body and the meds work in a way that you shake this faster, so it does not linger. I do feel sorry that it has occurred. Just shake the emotion and think this time it will be better. You will stay in my thoughts to heal. Big hugs!!
I understand that feeling. After several bouts of CMV myself, I am now going from weekly labs to every three months. I am not exactly comfortable with this.
The last several times I came up positive, we hit it hard with valcyte and knocked it back pretty quick. But because I was testing weekly, the numbers never got very high.
I'm not sure how expensive the CMV test is, but it has to be less than a full blown infection.
I hope you are able to beat this quickly, and never get the miserable symptomatic part.
oh how awful...I'm so sorry. You went through hell with that virus. I hope it goes away quickly.
No, just no! Not again! I trust it'll be knocked out quickly w/o all the issues you experienced earlier. Sending you lots and lots of courage and encouragement. Also prayers and hugs! Others are too. We're Jayhawker strong!
Ouch...One Day at a Time
Update: tThey are decreasing my Tacrolymous by .5mcg a day and I’ll have labs weekly again to monitor with the first lab on Thurs, Aug 22nd. This is the same treatment they used last time; the treatment that did NOT work.
I’ve requested that the transplant nephro reach out to the hemo oncologist because the T-LGL seems to interface with the CMV needing different treatment protocols. At this point the nephro hasn’t reached out. UGH!!!
I’ve also reached out to my hemo oncologist. If needed I’ll reach out to the director of the transplant centers at this hospital. Frankly, it’s one thing to follow an ineffectual treatment protocol when you don’t know about the leukemia; however, doing it again now is inexcusable. The transplant nephrologist is going to have to work with the hemo oncologist on my treatment plan now!
Jayhawker
Stay strong, Jayhawker! Get the proper treatment that works for you. I'd like to add it's terrible frustrating when doctors (or their staff) don't return calls. What's up with that! It's been going on for several years now - it's rude, dangerous, and unprofessional. It needs to stop. I really hope you've managed to get their attention by now.
I am so sorry to hear this.
The medication dance never stops.
Recovery is never a straight line.
It’s very frustrating when doctors won’t listen to you, the expert on your own body, or keep track of what’s been done in the past.
I know it sucks but…even with a transplant, we are all still considered stage 5, in kidney failure. Transplant is just a treatment not a cure. Still beats the heck out of dialysis!!!
2nd Update: I have labs tomorrow morning. Of course I’m anxious about them. With the T-LGL leukemia it’s “not optimal” for me to be put in Valcyte, the anti-viral medication most commonly used to combat CMV. Valcyte lowers neutrophils significantly. Since the leukemia already lowers my neutrophils significantly, Valcyte is likely to lower them to below 5 thus requiring leukemia treatment.l according to what my hemo oncologist has told me. It’s going to be a long and very likely sleepless night tonight.
Jayhawker
3rd Update: Some good news on my second bout with active CMV. I had labs last Thursday. These were the first labs after the change they made lowering my tacrolymous dose to help my body combat CMV naturally. I had been following the new treatment plan for 10 days before these labs were run.
CMV lab results as of last Thursday: “not detected”
This is what it had been testing consistently since early December 2023. Of course I’m pleased. I’ll wait to hear from the transplant center regarding how they will proceed with my treatment plan. I’m expecting regular (weekly or bi-weekly) labs to monitor CMV level closely for 4-6 weeks or longer.
I’m going to ask my nephrologist when I see her in early October whether I’m likely to see this with labs when I develop a cold. I had a sinus infection that hung on for close to 3 weeks about 5-6 weeks before the lab where my CMV level tested abnormal. So I’m wondering if that sort of infection or even a basic cold could reactivate CMV. I’ll also visit with my oncologist about this. It’s possible that the T-LGL leukemia may cause all of this to be a little different than the norm for me.
I may not be totally out of the woods with all of this yet but last week’s lab results are encouraging.
Jayhawker
What symptoms did you have from having CMV virus?
