Transplant: Vaccines: Covid, Flu, RSV

Hi @muddlycrew 😊
It's very nice to meet you and Congratulations on your recent 5 months transplant! I am happy to hear you are taking good care of yourself. Which organ did you receive?

Good question, sry I left that out. I had a live liver transplant - best friend from college was a match, a gift I can never repay but by taking care of myself I’m taking care of her, too. After all, I have her borrowed parts. The vaccinations I know are scary for some people, I understand that. But if I can help and encourage just one person that there is a better than excellent chance they and their SOT will be ok post vaccination, that would be answered prayers.

Congrats on your gift! I too had the Shingrix, quite a few years ago, but (don't ya know) first had shingles. One word: OW! And to make it worse, I was traveling with my husband who was attending a conference in Switzerland. As a surprise for me, after the conference, we boarded the TVG (high-speed train) for a vacation in Paris. On the train I started getting itchy. By the time our train pulled into the station, my first stop was at a place most tourists don't visit in Paris: the hospital! Definitely you want that Shingrix shot!

Hi @charlie5454s 😊
Visiting Switzerland and Paris sounds absolutely WONDERFUL....the hospital in Paris for Shingles not so much!! Were you immune suppressed when you had Shingles?
How did they treat it and how long did it last? (I am curious if they lowered your immune suppression, added an antiviral, etc)
I heard that Shingles can be very painful with a normal immune system so what is it like for you a transplant patient. Did you have to come right home or were you able to ss a little of Paris?
You have so many interesting life stories and adventures!

This happened about 8 years ago and yes, immunosuppressed. Ultimately my rash covered my upper right chest, armpit and top of right shoulder. Truly awful. So, this was an ER in a France Hospital and their ER doctors don't really understand transplant patients anymore than American ER doctors do, "le medecin a prescrit leur de Gabepentin." Incidentally, except for some really serious meds and narcotics, you just walk into the pharmacies and ask for whatever you need...no Rx necessary. I was having pain and it was suggested I stop in at a pharmacy and ask for a few (their version) Tramadol...just ask, no script. What?! (I didn't by the way).
Anyway, despite having the evil blisters, I coated them with the uber brightly neon-colored pink version of our Calamine Lotion and we did the cafes, museums, etc. Not my first time there though.

@charlie5454s
You are amazing...
I am so happy that you joined in this conversation! I am learning so much regarding how to live boldly (and safely) with a kidney transplant. It sounds like whatever comes your way, you handle it and keep peddling.... how fantastic! About how long did Shingles hang around using your neon lotion? 😊 Did your transplant team give you any special instructions or just the topical calamine lotion? The reason I am asking is that every vaccine I have taken post transplant has given me no immune response.
I took all the covid shots, Hep B shot, etc and when tested for antibodies it all showed no response. Therefore I like to educate myself on what treatment is given and how long it takes to go away just in case I get these things, I will have an idea what to expect and for how long.
By the way, is Paris one of your favorite cities to travel to? Unfortunately,
I have never traveled to Europe. I would love to. I am a restaurant foodie, so it's probably unbelievable!

I think the duration of any illness depends on the person's health, age and even genetics. I think it was about 2 months before I fully felt like me again post shingles, but there are meds that alleviate some of the symptoms. I don't produce many (if any) antibodies from vaccines either so, yes, still must take all the precautions since our response to vaccinations are lower than healthy folks...but your chances of getting really sick or winding up in the hospital are definitely lowered by getting the vaccinations. Personally I get so frustrated by the "anti-vax" crowd...do they think measles, small pox, pertussis, etc, just disappeared magically without the hard work of physicians and medical science?
Can't tell it by my moniker "Charlie" (haha...one of my cats) but I am of French heritage so yes indeedy, their food is great. And because it's a walking city, they eat but walk a lot so are pretty healthy and fit. Also hardly any fast food joints. (We did find it funny that in their Mickey D's that along with soda dispensers, there are wine dispensers too!

He is not back on cellcept yet, because of low wbc. They took him off that on 8-14-23 when his wbc dropped to 1.5. But instead of going up it continued to drop. 9-30-23 they put him on valcyte, for the cmv and by 9-18-23 his wbc had dropped to 0.8 so he had the injection and the next week it came up to 2.8. and the week after that 2.9, I thought we were going in the right direction. When they took him off valcyte a week ago, because his CMV has been undetected for 2 weeks, I thought it would be even higher but instead yesterday it was 2.7. He is only on tacrolimus, 0.5 mg twice a day, prednisone was stopped over 3 months ago. No other anti-rejection meds at this time - which is worrisome. I have to just trust the clinic, which I do, but still worry.

@charlie5454s
Thank you so much for sharing your "Shingles in Paris" experience with me. It's actually comforting to me (especially the part of the story where you slathered yourself with Calamine lotion and went to a museum and some cafes....that's my favorite part! )
I really enjoy learning about how the pharmacies work with no scripts for most meds....and French wine dispensers at Mc Donald's....that's awesome!!
Thank you again for joining in @charlie5454s
I am so happy that you are part of the Mayo Connect Transplant Group! I very much look forward to our next discussion.
Happy 18 plus 🎉

Hi @valbob 😊
Thank you for all the details. It sounds like my story. I am very hopeful that now that your husband is off of Cellcept, off of Valcyte, off of Prednisone and his CMV just resolved, his WBC should begin to recover in the coming weeks.
Does your husband test weekly? Unfortunately, everything on that long list can contribute to a low WBC.
Sometimes the body just needs to recognize that the coast is clear and it is now able to produce WBC again. After Cellcept, Valcyte and active CMV, it took a few weeks for my WBC to get into the low range. I was down to 1.0 too and my WBC recovered after a few weeks of undetected CMV.
Does Transplant feel pretty confident that your husband's WBC will start to recover in a few weeks now that CMV is negative and no Valcyte?