How much covid protection are transplant recipients really getting

I asked my Mayo doctor about getting an antibodies test, but he doesn’t think it’s necessary. I am 300 days post-bone marrow transplant. I would like to know if the Moderna vaccine was effective!

@edb1123 An antibody test was run a month after my first Pfizer dose (at Mayo) and we were all elated to see that I had what the doctor’s (transplant, neurologist and allergist) felt was a high score, considering I’m still on .5mg of tacrolimus daily.

So there is optimism that I will have at least some and hopefully a good level of immunity with this second dose.
There’s no reason not to have the test run and it can be added to your monthly blood work...or whatever schedule you’re on now. You’re curious and would like to know. That makes it justifiable. 😉 My insurance paid but I would have had it anyway and I believe it was $84.00.

It may not tell you the level but it will show that you’ve had an immune response which is important. Some people show nothing but there are other factors involved such as our T and B cell response. However, my 3 doctors felt that the fact that there was a high spike protein count that it’s looking favorable.

I’m glad to hear you had good results, Lori! I just had blood tests today and wanted to have them check for antibodies, but my Mayo doctor didn’t think it was necessary. ☹️ I don’t understand his reluctance, and I would really like to know so I don’t put myself at risk! I have flown on a plane, eaten in restaurants, been around other vaccinated people, etc. I haven’t been on Tacrolimus for months, so maybe that will help the vaccine’s effectiveness. It would just be nice to know. Thanks for addressing my concerns.

@edb1123 We’re a different breed of transplant patients. Solid organ transplants require being on immunosuppressants basically for the rest of their lives. So their immunity remains compromised.

We SCT people eventually get to the point where it’s no longer necessary to be on any meds. And with all our renewed childhood/early adult vaccinations by 2 years we have what’s considered a mature, adult immune system again. But it may not be functioning fully in all situations. We haven’t had that lifetime to acquire all the immunities and immune responses we had prior to our transplants. ((That’s how it was explained to me by my transplant doctor)

So that’s why we will always have to be proactive in avoiding anything which could ‘upset the apple cart’. ☺️ So as long as we’re still cautious even when vaccinated to just be mindful of crowed areas, long exposure time to groups of people, etc...wear a mask, use hand sanitizers and keep space.

For your own curiosity, type a note to your team in the portal and ask to get the antibody test added to your lab orders. Your doctor won’t mind. That’s the really great thing about Mayo doctors, they work with us and we are included in decision making.

Hi Rosemary

Yes, I bet they would love as many people as possible. This is email to the study group. They usually respond within a day. Just like Mayo they are wonderful, dedicated people that have been great to work with. I encourage anyone that is interested to reach out and ask to be added to T and C cell studies. Feel free to pass this around. The more people we have involved the better!

transplantvaccine@jhmi.edu

Thanks for the detailed explanation, Lori. I did message my care team yesterday, asking if I could have the antibodies test today when they ran blood tests. The reply was that my doctor hasn’t been routinely ordering this test for his transplant patients but I could discuss it with him tomorrow when I will meet with him. ☹️ Today would have been the ideal time to have the test done, so I was disappointed with this response. I’m hopeful that I have antibodies since I tested negative for Covid again today after all the exposure I’ve had, but it would be nice to know. Thanks again!

@zon, I sent a response to email to the address that you gave me and I have not had a reply. I sent it over a week ago.
I shared that i had both doses of the Pfizer, and that I am a 12 yr liver/kidney recipient. Maybe i don't qualify because I hadn't participated in the antibody study.

I appreciate that you are keeping us updated on the Johns Hopkins research.

I sent this in response not sure if it made its way to you. I’m copy and pasting info.

In reply to @rosemarya "@zon, do you know if the T and C cell study is open to someone who..." + (show)
Hi Rosemary

Yes, I bet they would love as many people as possible. This is email to the study group. They usually respond within a day. Just like Mayo they are wonderful, dedicated people that have been great to work with. I encourage anyone that is interested to reach out and ask to be added to T and C cell studies. Feel free to pass this around. The more people we have involved the better!

transplantvaccine@jhmi.edu

I sent this in response not sure if it made its way to you. I’m copy and pasting info.

In reply to @rosemarya "@zon, do you know if the T and C cell study is open to someone who..." + (show)
Hi Rosemary

Yes, I bet they would love as many people as possible. This is email to the study group. They usually respond within a day. Just like Mayo they are wonderful, dedicated people that have been great to work with. I encourage anyone that is interested to reach out and ask to be added to T and C cell studies. Feel free to pass this around. The more people we have involved the better!

transplantvaccine@jhmi.edu

I’m glad to hear you had good results, Lori! I just had blood tests today and wanted to have them check for antibodies, but my Mayo doctor didn’t think it was necessary. ☹️ I don’t understand his reluctance, and I would really like to know so I don’t put myself at risk! I have flown on a plane, eaten in restaurants, been around other vaccinated people, etc. I haven’t been on Tacrolimus for months, so maybe that will help the vaccine’s effectiveness. It would just be nice to know. Thanks for addressing my concerns.