7 posts tagged “organ donation”

“In Claire fashion”: Claire Wineland + organ donation with a health condition

Posted 2 weeks ago by

Claire Wineland — an author, inspirational speaker and social media star with cystic fibrosis — died last month at age 21 following a lung transplant. “In Claire fashion, she is an organ donor,” her family shared, noting that her kidneys helped save two people. Learn more about Claire and organ donation with a health condition.

(Photo: Claire’s Place Foundation)

Claire’s life and mission

Claire was born with cystic fibrosis (CF), a rare genetic condition that causes a buildup of thick mucus in the lungs, pancreas, and other organs. After surviving a 16-day coma at age 13, she started a nonprofit called the Claire’s Place Foundation to help provide emotional and financial support for others with CF and their families.

In high school, Claire began sharing about her life and her condition in YouTube videos, on social media and through speaking engagements (including TEDx). She won several awards for her role as an activist, including a Teen Choice Award, the Gloria Barron Prize for Young Heroes, and Glamour Magazine’s College Woman of the Year.

“She’s on a mission to normalize sickness, push back at those who pity her and have a meaningful life for however long it lasts,” CNN said in a 2017 profile of Claire.

“The call”: Claire’s transplant

Claire initially told her family that she wasn’t interested in a lung transplant, but with her lungs beginning to fail, she changed her mind this year and went through rigorous testing to get on a transplant list in May. On August 26, she got “the call” learning that she would be receiving a pair of donor lungs. Her transplant surgery was a success, but she had a (rare) massive stroke due to a blood clot shortly afterward, CNN reports. Emergency surgeries and “Herculean efforts” couldn’t save Claire, according to her mom.

Claire’s family, in accordance with her advance directive, knew “it was time to let her go” and donated her organs. “Claire was able to save the life of two people: her right kidney was transplanted to a 44 year old woman in San Diego, and her left kidney was transplanted to a 55 year old male in Northern California,” CNN says. “Also, Claire’s corneas and tissue were recovered and she will be able to enhance the life of up to 50 people.”

“Claire’s remarkable family were so happy for the other families that were now getting the calls that the organ they had long been waiting for was now available for transplant,” says Laurie McHolm, chairman of the board of the Claire’s Place Foundation.

Who can be an organ donor?

All adults in the U.S. and in some states people under the age of 18 can sign up to be an organ donor, according to OrganDonor.gov, part of the U.S. Department of Health and Human Services.

People of all ages, from newborns (with parent/guardian consent) on up to folks in their 90s, have helped save lives by being organ donors. In 2016, 1 out of every 3 people who donated organs was over the age of 50.

“Don’t rule yourself out from being an organ donor because you have a health condition. You’re always encouraged to register,” they state in their FAQs about organ. “There are very few conditions that would prevent someone from being an organ, eye, or tissue donor—such as HIV infection, active cancer, or a systemic infection. Even with an illness, you may be able to donate your organs or tissues.”

Transplant teams determine what can be used at the time of death based on a clinical evaluation, medical history and other factors. “Even if there’s only one organ or tissue that can be used, that’s one life saved or improved,” OrganDonor.gov says.

Roughly one person is added every 10 minutes to an organ transplant waiting list, according to a recent report in ScienceDaily. Although 95 percent of U.S. adults support organ donation, only 54 percent are actual registered donors.

Organ donation does not interfere with having an open casket service, and while it is a deeply personal decision, it has “broad support among many religions in the U.S.” (see more details outlined here).

How to register

Even if you’ve signed up through your state’s motor vehicle office (DMV/RMV) to have “organ donor” noted on your driver’s license, or if you carry and organ donor card in your wallet, it’s still important to take these two steps:

  • Sign up in your state’s online registry here. When registering online, most states give the option to choose which organs and tissues you donate, or to donate everything that can be used. Also, registering online helps ensure your wishes become known in case your donor card isn’t with you or examined during an emergency.
  • Share your wishes with your family. “Most families want to carry out the wishes of their loved one, so please be sure to tell them how you feel,” says OrganDonor.gov.

If you’ve signed up as a donor in your state registry and you are over 18, then you have legally authorized your donation and no one can overrule your consent. You can change your donor status any time (look for an option such as “updating your status” on your state’s site).

In 2017, donors made over 34,000 lifesaving transplants possible, and OrganDonor.gov shares some donor/recipient stories here.

PatientsLikeMe members LaurCT and Pipersun have shared their transplant experiences with the community. “I thank my donor every day for this gift,” Laura (LaurCT) says.

What compelled you to sign up for organ donation? Join PatientsLikeMe or log in to share your thoughts or questions in this forum discussion.

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“I thank my donor every day for this gift”: Member Laura shares her lung transplant story

Posted March 17th, 2017 by

Meet LaurCT, an active 2015-2016 Team of Advisors alum living with idiopathic pulmonary fibrosis (IPF). She underwent a left lung transplant at Brigham and Women’s Hospital in Boston in January and recently shared her experience with us.

How are you feeling these days? 

I am feeling great. I’ve had a couple bumps in the road but nothing that the transplant team hasn’t seen before, and [they] handle it immediately. It was scary for me but the team is great in communicating that these [post-transplant] issues happen to some and not to worry. I like that communication because it sets my mind at ease.

How long had you been a candidate for a lung transplant? 

I was evaluated at Brigham and Women’s Hospital (BWH) in January of 2014 and accepted into their transplant program. At the time, I was classified as too healthy to be listed, however I was being watched and met with them every four to six months. In October 2016, BWH suggested I be re-presented and get listed on UNOS (the United Network for Organ Sharing waiting list) for a transplant. After finishing some additional testing, I was listed in Boston Region 1 on December 16, 2016. I also finished the evaluation process at New York Presbyterian Hospital/Columbia around the same time and about December 8, 2016, I was listed on their regional UNOS list for a transplant.

You shared in the forum about having a “dry run” in December 2016, when you were called in as a backup candidate for a transplant but the lungs went to another person. How did you feel when that first call fell through for you? 

As I said in the forum, my daughter and I went to NY Presbyterian with no expectations. While driving, we were calm and I think we both knew this would be a dry run. We didn’t even really call anyone to let them know we were heading there. It gave me comfort to know that the person who needed those lungs the most got them. Many times the lungs are not usable and these are now breathing in someone’s body, giving him or her the gift of life.

What was it like to get “THE CALL” again, leading up to your actual transplant? 

January 6 was a difficult day for me emotionally. We terminal patients have those days, accept them, then put on a happy face for our loved ones. My daughter made supper (not a usual thing – haha) and we were just about ready to sit down to eat. It was 5:30 p.m. My phone rang and without looking at it, we knew. My daughter got up and went upstairs to get ready as I was answering the phone.

I was a primary [candidate] for a left lung, and we knew in our hearts this was it. We headed to Boston immediately. I headed into surgery at 11 a.m. on January 7, 2017. While I was in surgery, my daughter received a call from NY Presbyterian saying they had a lung for me. That rarely happens, if ever. My journey was meant to begin on January 7 at BWH. That was the day there was a 25-car pile-up on the way to New York. I would have never made it in time [for the transplant there].

Can you share some more of your transplant surgery experience with us?

I know that when I woke up after surgery I did not have any pain – I still have not had any pain. They put me on .5 liter of oxygen after, and when I woke in ICU, I took it off. I was breathing on my own from the beginning. My surgery finished at 5 p.m. (ish) on January 7. I did everything they told me to and was released to go home on January 13. Six days after a left lung transplant. This was meant to be.

 

What has been the most difficult or surprising part of your recovery? 

I had a couple of bumps in the road but those were nothing. I need to stress that the most difficult part is the emotions for me and for my caregiver. We don’t stress the caregiver enough. As my daughter said, the prednisone has turned her 66-year-old mother into an adolescent child at times. That is difficult for any caregiver to handle. It’s a 24-hour job for them. We just need to recover, but we can’t do it without them. I’m blessed to have her and she says we will get through this because the alternative is not an option.

You’ve referred to transplant day as “Miracle Day.” What would you say to your organ donor? And to people considering organ donation? 

I wake in the morning and thank my donor and the donor family every day for this gift. I never thought about organ donation much until a friend of mine needed a kidney and then I needed a lung. Doctors perform miracles every day not only by transplanting an organ but using the right combination of drugs to keep our body from rejecting it. Giving the gift of life to someone else is the most selfless act someone can make, and those of us who need it will forever be grateful. I plan to honor that donor by doing my part in staying alive.

How will you use PatientsLikeMe now that you’ve had a lung transplant? 

I’ve been pretty vocal [asking] about the post-transplant experience when a few of the PatientsLikeMe folks had their transplant. It’s the only piece that we don’t seem to share. I get it – I’m about two months post-transplant and I’m trying to recover. I plan to keep giving back. I will begin posting/blogging again about my experience so others also will know that whatever is happening post-transplant, some others have the same issues. Sharing our experiences and our data is important, and it makes us feel less alone. People like John_R, who I talk to – he says he has had the same experience or experienced something else. It helps those of us who follow to get through it.

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