August 16, 2018 at 7:46 pm #13343Kathleen ShefferParticipant
Becoming involved in disease communities can be a double-edged sword. I have immersed myself in the pulmonary hypertension (PH) community since diagnosis at age 6, and the congenital heart disease community since age 10. Now I am connected to transplant recipients all over the world. As you can imagine, this has meant watching others with related conditions struggle. Many of my close friends, and countless Facebook “acquaintances,” have passed away from disease-related complications.
Still, I not only remain a part of the community, but continue to delve deeper, meet more people, and hear more stories. If you’re reading this, you’re doing the same.
I can’t say enough how helpful it has been to talk with other patients with PH. At my first PH Conference, I met older girls who taught me how they concealed their Flolan pumps by strapping them to their legs or back. Yes, these were the huge CADD Legacy pumps! These girls were very creative.
In the same way that patients who had been diagnosed with PH before me mentored me through the early years of my diagnosis, transplant recipients who had their operation before mine mentor me now.
Earlier this month, I attended the Transplant Games of America, competing in sporting events alongside living donors and other recipients of organs and tissue transplants. The highlight for me was meeting six other heart-lung transplant recipients whose transplants occurred between 15 and 30 years ago. Yes, THIRTY!
I met Allison on the bus to Opening Ceremonies! (Low quality iPhone photo by me, Kathleen Sheffer)
Meeting other transplant recipients like me who are not just surviving, but healthy enough to compete in events like 20K cycling races, tennis, badminton, and volleyball, was a huge boon to my confidence. I always do my best not to dwell on survival statistics, but their presence was physical confirmation that I have many healthy years in my future.
Have you met other patients who have had PH longer than you have? What advice have they given you? I’m always thinking to myself, “If [mentor’s name] can do it, I can do it.” That mentality has gotten me through a lot of medical challenges, including acute organ rejection.
How much do you let yourself compare yourself to other patients? In what ways can this be beneficial, and in what ways is it harmful? How do you prevent it from becoming harmful to your own progress.
You can find mentors through other channels — not just connecting with other patients in settings like conferences, support groups, or online forums like this. I read a lot of memoirs by authors who have PH or have undergone transplants. They normalize my experience, and inspire me. How do you find mentors who inspire you?
I’ll leave you with a photo of all seven of us heart-lung transplant recipients at the Transplant Games. Possibly my favorite photo of all time!
Me at center posing with other heart-lung transplant recipients at Transplant Games of America 2018. (Photo by Claudette Pinner)
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