COLLEEN ADAMSON
It’s amazing what a shared experience does for people – there is an automatic bond that is felt.
Transplant Support Groups:
To Join or Not to Join?–Winter 2003
BY COLLEEN ADAMSON
After my transplant, I was told about a post-lung transplant support group that I could join. I didn’t really have an interest in joining at that point – why did I need support from strangers? I had my husband, friends, and family for support – I thought they were all I needed. Plus I was too busy getting my life back together – going back to work, visiting with friends and family, and traveling – to be part of a support group. I did go to the transplant clinic holiday parties, and other transplant functions at the hospital, and gradually began to meet other lung transplant recipients. And I realized how great I felt after meeting and talking to these people. Everyone I met was so happy and nice and really welcomed me, like we were old friends. It’s amazing what a shared experience does for people – there is an automatic bond that is felt. I’ve always felt that with other people with CF too; I feel an instant connection with anyone who has CF, and it seems like I have known that person my whole life.
I ended up joining the support group about a year ago, wanting to spend more time with the people I had been meeting at the various clinic functions. We meet once a month; sometimes we go out to lunch or dinner, or sometimes we have a guest speaker for lunch at the hospital, and sometimes we just sit around and talk. What’s nice is we don’t always talk about transplant-related topics; we talk about our families, our jobs, our vacations, etc., which really brings us closer I think. We are not just transplant recipients to each other anymore, we are friends. I told my husband that these meetings really centered me, helping me to refocus on the important things, and to realize yet again how lucky I am to be alive. It’s amazing what being around happy, thankful people will do for your spirit – it truly makes you grateful for every minute you have.
We do inevitably talk about transplant-related topics, like what medications we are on and what side-effects we have, how other transplant recipients are doing, etc. This is a great learning experience, because people may be on a medication that you may be on at some point, and you can learn what to possibly expect from taking that medication. Or someone may have some of the same symptoms that you are experiencing, and they can tell you what may be causing them. Or someone could be having a medical problem related to the transplant, and that alerts you to watching for that problem yourself. Of course, there is a downside to this in that if someone does have a transplant-related problem, you could stress yourself out worrying that you will encounter this problem as well. This actually happened to me. I have a friend and coworker, Todd, and we are each other’s support “group” – we look out for each other, and are a shoulder to lean on or an ear to bend. Todd had a kidney transplant about six years ago, and he recently had a medical scare – his lymph nodes became swollen, and his doctors thought he had either non-Hodgkin’s Lymphoma, or Hodgkin’s disease. Todd went to about ten different doctors for opinions; some said he did have cancer, and some said he did not. Cancer treatments would have essentially killed his one good kidney, so therefore Todd was faced with a difficult decision – whether or not to go ahead and start the cancer treatments, when no one was 100% sure he had cancer. Well, Todd decided to hold off on the cancer treatments, and a body scan done soon thereafter showed no evidence of cancer in his body. As it turns out, Todd most likely had Post Transplant Lymphoproliferative Disorder (PTLD), and once his doctors lowered his immunosuppressant drug dosages, Todd felt better and the symptoms disappeared.
I couldn’t stop thinking about what Todd went through, and it was starting to stress me out, wondering if the same thing could happen to me. So I talked to my transplant doctor about it, and he gave me all the statistics on PTLD (not a large incidence of it), and talked about how carefully they monitored me so if anything were to happen, they would be on top of it pretty quickly. So I felt better after talking to my transplant doctor, and of course I was thrilled that Todd was better.
So belonging to a transplant support group can have its ups and downs, but my experiences with support groups have been very positive overall, and I highly recommend joining one if you are pre or post-transplant. Even knowing what my friend Todd went through made me more aware of what to look for in terms of side-effects of medications and of transplant in general; the informed patient is a healthier patient, right? I have also made a lot of wonderful friends who can lift me up and support me and make me feel grateful for my life like no one else can. There is nothing better than that.