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1
Living Donation Forum / Re: Frustrated with the CDC
« Last post by Michael on January 23, 2022, 09:11:05 AM »
This is from Karol Franks, posted in the LDO Facebook group: "Here’s a helpful map for locating Evusheld for high risk organ transplant recipients who have little or no immunity to Covid due to immunosuppressives.We were able to locate it and get a prescription after convincing our doctors that it had been received at their hospitals! Evusheld is a long-acting antibody combination authorized for emergency use in the US for pre-exposure prophylaxis (prevention) of COVID-19"

https://rrelyea.github.io/evusheld/?state=ChooseState
2
Living Donation Forum / Re: Frustrated with the CDC
« Last post by sherri on January 11, 2022, 07:21:26 PM »
I work as a clinical research nurse with Blood and Marrow Transplant patients and CAR T patients. These are people who have had stem cell transplants or CAR T therapy for blood cancers. We just gave our first Evusheld this week. It is used as Emergency Use (like the Covid vaccine initially) and is recommended for the immunocompromised population. The doctors here are giving it to those patients <6 months post allogeneic transplant, those with GVHD (graft versus host) and < 6 months post CAR T. I am currently working on  two different clinical trials for Covid vaccines. Unfortunately, the immunocompromised patients are having a difficult time mounting a response to Covid vaccines. Not sure if it is in relative to the amount of immunosuppression. I know my brother (my recipient) does have antibodies, 14 years post kidney transplant and he takes a very low dose of immunosuppression due to the good match.
We recommend re vaccination ( 3 doses of mRNA vaccine) for all our post transplant patients since their immune system was wiped out after their transplant. some patients have a hard time explaining to pharmacists that they need to be re vaccinated and therefore their records will be a little off. Try another pharmacy, ask your transplant center for a letter stating why your wife needs another vaccine. you can also try local health department. And I am sure your doctors checked but make sure they are testing for the spike protein.
3
Living Donation Forum / Re: Frustrated with the CDC
« Last post by JustAPyper on December 28, 2021, 04:48:52 PM »
Thanks for the suggestions. I've heard about a new antibody generation
drug called Evusheld which will be hard to get but is something to hope
for.

Happy New Year everyone!
4
Living Donation Forum / Re: Frustrated with the CDC
« Last post by Michael on December 23, 2021, 11:27:14 AM »
I'm not sure if the following information applies to your situation, but the CDC does have a web page titled "COVID-19 Vaccines for Moderately or Severely Immunocompromised People": https://www.cdc.gov/coronavirus/2019-ncov/vaccines/recommendations/immuno.html

I hope this is helpful.
5
Living Donation Forum / Re: Frustrated with the CDC
« Last post by Fr Pat on December 22, 2021, 07:08:19 PM »
     I wonder if perhaps the "Transplant Recipients International Organization" ("TRIO") might have any helpful information on this? www.TRIOweb.org
6
Living Donation Forum / Frustrated with the CDC
« Last post by JustAPyper on December 22, 2021, 04:29:49 PM »
So, I'm kind of frustrated with the CDC and medical establishment because they have not approved a vaccine plan for organ recipients who are taking immunosuppressants. Everyone knows their immune systems are difficult to stimulate. Don't want to cause a rejection cycle.

I did a paired exchange 9 years ago and my wife is doing excellent with her transplanted kidney (she had a PRA of 99% so we were incredibly lucky to find a match) and has not had any rejection events but she has no antibodies for COVID-19 even after Pfizer and J&J shots. She had an COVID antibody test yesterday and it came back with no antibodies detected.

We tried to get a Moderna shot today but, because CDC says they shouldn't the pharmacist wouldn't give her a shot.

WTF CDC, this is really annoying because I donated a kidney to be able to get her one and now they apparently think she should hide out until COVID is all over. What am I supposed to do if she gets COVID and has a rejection due to having to come off of the immunosuppressants to get over COVID? Its not like I can do another paired exchange.

I've heard about a drug for immunosuppressed individuals (Evushield) that is in clinical trials right now but most likely not available in our area for months.

Well, thanks for letting me vent a little. It helps to write it out.

Stay well,
JustAPyper.
7
Living Donation Forum / Re: Transplant Gifts, 2019
« Last post by Fr Pat on December 21, 2021, 09:35:37 PM »
Just bouncing this to the top for the 2021 Holiday shopping season.
8
Living Donation Forum / Re: Still healthy 18 years after donation
« Last post by Fr Pat on December 20, 2021, 06:29:52 PM »
       Thanks for sharing the news. You might like to post this also at the FaceBook page of "Living Donors on Line" and also of "Living Donor Support Group" as more people use FaceBook now rather than this site, and more Liver-lobe donors and potential donors would read your news there.
9
Living Donation Forum / Re: Still healthy 18 years after donation
« Last post by Michael on December 20, 2021, 08:30:31 AM »
Thanks for the update! Happy holidays and happy new year to you!  :D
10
Living Donation Forum / Still healthy 18 years after donation
« Last post by kjones15528 on December 20, 2021, 08:18:38 AM »
Yesterday was the 18th anniversary of my liver donation to a close friend. At 70 years of age, I'm still very healthy and am able to do (and eat!) everything i want to do (and eat!). I mention "eat" because my body absolutely did not like the removal of my gall bladder during my donation surgery, and I had some digestion problems for a few months afterward which finally resolved.

Unfortunately, my recipient died of a heart event two months after our surgeries, and I miss her very much. The anniversaries of the transplant and of her death (on Valentines Day) are still quite emotional days for me.

I hope all of you who are either considering donation or are recovering will have a very happy holiday season and a healthy and happy new year.

Kathryn Jones

P.S. I used to post a lot on this site, and my story is in the story section.

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