Support Group

The year before my husband's heart transplant, we were part of a support group for people who were waiting for a heart or lung transplant. We learned a lot and met a lot of people, but none of them were like us.

When you get a transplant, there's a whole host of issues that come with it. Immunosuppression, places you can't travel to, foods you can't eat, experiences you can't have, normal things that you'll never do, diseases you are much more likely to get, numbers of years that you probably have left.

The group wasn't large and we stood out. A young married couple among a group of entirely middle aged or older people. We were at the beginning of our marriage - with so many dreams left, so many places we wanted to go and experiences we wanted to have. So when they told us the risks of being around children (because of how often kids are sick and how hard it is to keep them from spreading the germs), we mourned that we might never be able to have children, while others mourned that they might not be able to hold their grandchildren. "BUT AT LEAST YOU HAVE CHILDREN" I wanted to scream out loud in my pain, but thankfully only screamed inside of my head. When we learned that the average life expectancy is 13 years post-transplant, I began to wrap my mind around being a widow in my 30s, while others might become widows or widowers at a more normal time in their 60s or 70s.

Even the materials we were given to read and prepare were geared for older people. Gray haired married couples exchanging the excitement of their sex life together for sitting on their bed looking at albums of their grandchildren.

This is when we began to feel so alone. The cares and concerns we had were that of people our parents' age - maybe even older! It was my mom's mentors who understood what it was like to watch a husband suffer with medical problems - my dad was still perfectly healthy.

Our friends were advancing their careers and starting to have babies, not watching their fluid and sodium intake and praying that an organ would be made available in time.

Support group was just the beginning of a lonely season - a lonely way of life.

xoxo