Be Your Own Advocate & UPMC Transplant Resources

We were contacted by a friend of a friend who is considering transplant for her lung condition. As I was looking for some information to send to her, I realized that our "home base" has a fantastic website, updated with videos to explain parts of the process. It's a huge journey to enter into, and having some of these videos and resources helps you to know what you're getting yourself into.

http://www.upmc.com/Services/transplant/heart-lung-transplants/lung/Pages/default.aspx

I've heard a few transplant patients (myself included) complain about the lack of knowledge they received from doctors and hospitals prior to the transplant. While there is definitely room for growth in the education of patients and caregivers before/during/after transplant, one thing I've learned over the past two years from our story and following others is that THERE IS NO ONE WAY TO GO THROUGH A TRANSPLANT! Everyone's case is so different, so unique. While the doctors and medical teams do their best to educate you and work with you, YOU must know your story, your history, your limits, your resources best.

Jens was featured in a UPMC transplant publication.

One example that comes to mind happened to us recently. Jens called in one of his prescriptions (Everolimus) the day before New Year's Eve, as he would be completely out in a few days. We had been traveling, so we had just got back into town and were taking care of these types of things. Usually, having a few days advance notice for a medicine is no problem. However, since it was a holiday, followed by a weekend, the pharmacy called on Thursday to tell him that they would not have the med until Monday afternoon, since certain drugs wouldn't get delivered on that weekend. After calling every pharmacy in town on New Year's Eve, Jens called his coordinator to tell her that he wouldn't have one of his immunosuppressants meds for a few days. She said that he should just take the 2 doses he had left, and then he would have to go a few days without it- cold turkey. After he hung up the phone with her, I asked him what his dose was, as it had varied if he was taking a half pill or full pill for each dose. Since he was taking a full pill at the current moment, I asked if it would be better for him to split the pill like he had done in the past and take half doses until Monday, so that his system would have consistency and have at least something every day from that pill. He called back the coordinator, who agreed that would be a better solution.

I don't tell that story to sound "better than" the coordinator. But, it illustrates the point that as the patient/caregiver, you are the one who knows your supplies, your resources, your capabilities, your body best. Our coordinator deals with doses of all sorts of meds all the time, and she may not have even known (or remembered) that the pill was splittable. However, using our knowledge of the meds and Jens' history, we were able to figure out a solution that was best for his body.

(Another take-away from the story is to remember to be extra diligent around the Christmas/New Years holidays, especially, as things can get tricky with medications, bloodwork, and clinic openings around that time of year!)

Being your own advocate is a lot of work. Taking notes and putting your pieces together will help you keep track of your history, your previous "triggers," and other information that could save you time, money, and physical stress to your body. While you will undoubtedly have knowledgeable, caring, invested medical professionals working with you, you must take care of yourself!