Transplant Support Groups and the People You Will Meet There
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.
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.