Transplant Support Groups and the People You Will Meet There

Transplant Support Groups and the People You Will Meet There
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Learning that you or a loved one might need a lung transplant is scary. You probably have a lot of questions, and may wonder whether they are the right ones. You want to know if you are looking in the right place for answers.

Talking with your doctors should be the first stop on your health journey. But doctors have many patients and endless to-do lists. They may not be able to schedule you for frequent appointments, or field multiple phone calls from you each week.

The internet is filled with answers, but the information is not always accurate and might not apply to you. Always make sure that you are using reputable sources, such as medical journals and transplant center websites.

People also share their stories and opinions on social media and in forums. While these can be places to trade knowledge and find support, you must tread carefully. Some tales could send you into a pit of despair — or give you a false sense of calm. Be cautious with the information you are ingesting.

Even in the tech age, there are in-person resources. Your medical team should be able to connect you with a social worker who can help you find support groups or people with similar diagnoses. Talking to someone who is going through a similar trial can be very helpful.

If you are already in a transplant program, your hospital should offer support groups for patients and families. The University of California, San Francisco (UCSF) Medical Center hosts a monthly group for patients and family members in the transplant program, as well as one just for caregivers.

These groups were helpful for my family as we plunged into the lung-transplant world. I remember walking into my first one, wide-eyed and terrified. Still, I was relieved to be with people who also were affected by this process.

I went to several of these meetings during my time in San Francisco caring for my mom. I met people in different stages of the transplant journey. There are five types of people you are likely to meet in a lung-transplant support group:

The middle-aged patient

There are usually quite a few middle-aged folks at these meetings. Some are not yet listed, and others are waiting for “the call.” Many are on supplemental oxygen. Because UCSF’s meetings are held at the hospital, some are inpatients. Caregivers often attend the meetings, too.

The young patient

It might surprise you to see a 20-something patient toting an oxygen tank, but chronic illness is not just an older-person problem. Many young people are living with chronic and progressive lung diseases whose ultimate treatment is a lung transplant. Patients with cystic fibrosis or congenital pulmonary diseases have spent their lives in declining health. And even though the majority of IPF patients are diagnosed after age 50, there are younger people with this disease as well.  

The transplant recipient

A lot of people attend meetings long after they have received their transplants. These medical-masked people are beacons of hope for folks awaiting transplants. They are battle-hardened heroes who have lived to tell the tale. Some people at our meetings had only had a few months with their new lungs, and some were a decade or more post-transplant. It is encouraging to hear them talk about the lives they’ve regained thanks to new lungs.

The pre-transplant caregiver

They probably look terrified — or was that just me? I can’t speak for everyone, but I think most people who are pre-transplant have a certain amount of anxiety. There is so much uncertainty while waiting for a loved one to get on the transplant list, and then waiting for the call.

The recently transplanted caregiver

They are probably exhausted, but thrilled to bring good news to the meeting. My first meeting after my mom’s transplant felt different. I could finally introduce myself and say, “My mom just got new lungs,” instead of, “My mom is in the ICU waiting for the call.” It was a big deal.

If you can’t find an in-person support group, I invite you to check out the Pulmonary Fibrosis News Forums. The moderators are patient-columnists in different stages of their own IPF journeys.

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Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.

Christie is a life-long explorer of the Wild West. She now resides in the Hawaiian Islands with her husband, Jonny, and their two four-legged friends. Christie is a full-time freelancer, nature lover, and business owner. She took a break from work in 2019 to care for her mother, Holly, before and after her double-lung transplant. Christie’s column documents the experience of her mother’s IPF progression, months-long hospitalization at UC San Francisco, and life-saving transplant. She hopes that her family’s transplant story can provide a unique perspective for other IPF patients and family members.
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Christie is a life-long explorer of the Wild West. She now resides in the Hawaiian Islands with her husband, Jonny, and their two four-legged friends. Christie is a full-time freelancer, nature lover, and business owner. She took a break from work in 2019 to care for her mother, Holly, before and after her double-lung transplant. Christie’s column documents the experience of her mother’s IPF progression, months-long hospitalization at UC San Francisco, and life-saving transplant. She hopes that her family’s transplant story can provide a unique perspective for other IPF patients and family members.

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2 comments

  1. Dean Hutto says:

    Hi Christie,

    Thank you so much for the informative articles that you have contributed to PF News.

    I’m a double lung transplant that just celebrated my 5th trip around the sun with my new lungs. I’m involved with a couple of support groups that are wonderful.

    One is a harmonica group. As you may not know, playing the harmonica is rather simple (play by numbers) and is excellent exercise for the lungs and diaphragmatic breathing. The other part is the support. All of our group has a connection to lung diseases. We are known as the Harmonicats and meet every Tuesday. Often times we have been referred to as the HarmoniCHATS as we many times will spend more than half of our time together supporting each other in a variety of ways. We often play in front of groups at the State Veteran Home, assisted living facilities and at hospital functions.

    I also wanted to mention that many transplant centers around the country do not have any type of support group specifically for lung patients. Please look at the Lung Transplant Foundation (lungtransplantfoundation.org) and the Joseph J. Carter Mentorship program. They do wonderful work with pre-transplant patients that are connected to post-transplant patients and with pre-transplant caregivers connected to post-transplant caregivers.

    Information and support help lung transplant patients be informed and to help deal with the many bumps in the road that we as lung transplant patients experience. Thanks!

    • Thank you for your comment Dean!
      I’m happy to hear that you’re doing well 5 years post-transplant and have found several groups to help you through the challaneges. The Harmonicats sounds like an awesome community!
      Thank you also for sharing the lung transplant foundation website with resources. I somehow have not stumbled across that site in my research, and it could be a huge help to some of our readers. It’s good to know that there are community groups that are not connected with the hospitals. UCSF made it very easy to find and access support while we were there, so I kind of assumed (perhaps incorrectly) that that practice was more common. I’m always happy to learn more ways that I can support the community and have the information I share be correct.
      Christie

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