Duke Transplant Friends

I woke up this morning with a sense of excitement. It wasn’t just that it was Friday. It was MY Friday. MY Friday to meet with the Duke Lung Transplant Care Giver Support Group.

This group is amazing. They are so much better informed than I was 10 years ago. They are a “savvy” group. They are willing and anxious to share ideas and information - more then willing to help newcomers. Today, a new Dad said he was starting from scratch and had absolutely no information. He was here with his son, who hadn’t yet been activated. He listened intently to our discussion but realized he didn’t even have a good starting point. He wanted a Transplant Manual. Well, it didn’t take two seconds for one of our members to share a well organized list of telephone numbers so that Dad could get his beginning tools.

Each one has a full plate, yet each is happy to help another. Each of them is in a different place in their journey - some are waiting for their loved one to be activated and some are near the finish line and will soon be leaving to return home.

Discussions are lively as issues are raised. Some we are able to answer immediately, others will require research. But I think the important thing is that they are not afraid to raise an issue. They approach each issue positively, searching only for the best answer for all concerned. They, like me, want to help make the transplant experience better, not just for themselves, but for those who will follow.

Today, one of things we talked about was compliance - listening to the docs. I reminded them that my belief was that a huge measure of Jack’s success was the docs never had to tell him anything twice. He was very compliant with all of their requests/suggestions. Another very important part of his success was exercise, exercise, exercise. Make the patient push! The stronger the body, the stronger the immune system. And drink that water!!!! We have ALL heard the message about how good water is and how it washes the toxins from our bodies. A transplant recipient is no different!

Another topic we discussed was the medications and some of the side effects. Again, one of the members was quick to share a phone number he had just learned about to facilitate refills to pharmacies across the country. Many of these patients will be returning to their homes, far from North Carolina, and they will need to get their prescriptions sent to their home pharmacy.

Each time I am able to join the group, we will talk about other ideas and share experiences. We all agree we want to give back to the program that has been so good to us. We want to leave a trail for the newcomers to follow. Hopefully, one that will be easier in some way because we have shared our problems, our hopes, our successes, our stories.