Tagged: Education, Living With PF, PF awareness
- This topic has 1 reply, 1 voice, and was last updated 5 months ago by Samuel Kirton.
October 22, 2022 at 11:00 am #33354Charlene MarshallKeymaster
As a patient living with idiopathic pulmonary fibrosis (IPF), a life-threatening and rare lung disease, I feel a sense of pressure to educate others on what it’s like to live with this disease.
Part of that education feels like it’s constantly helping others understand that transplant is not a cure for IPF. It certainly is a great alternative to dealing with constant shortness of breath and a cough, but there is a lot of work that goes into managing a successful lung transplant.
I recently had a conversation that highlighted for me how little others know about organ transplantation. More specifically, little seems known about how scarcely available organs are for transplantation, how delicate the death of the donor needs to be in order to donate their organs, and how difficult for the recipient it is to manage rejection concerns. I am certainly learning this difficult process first-hand, and feel like it’s a conversation I am constantly having with others in an effort to educate them that a transplant will not be a “perfect solution” or “cure” for me.
As an IPF patient, do you take on the responsibility of educating others about your disease and/or lung transplantation?
If so, how do you do that?
October 25, 2022 at 9:17 pm #33382Samuel KirtonParticipant
I completely agree Charlene and I do. By way of background, I was diagnosed with IPF in January 2017 and I received a bilateral lung transplant in July 2021.
Here in the U.S. individuals can become organ donors by checking a box on their motor vehicle license. For so many it is almost a reflex action there is little or no education around that decision. In some cases, their family does not know of their decision to be organ donors.
I try to increase awareness through my writing, speaking with support groups about my journey, and honoring the gift from my donor. When I speak about transplantation I try not to present a “roses and rainbows” version. It is tough physically, and I would absolutely do it again. Also, you are absolutely correct it is not a cure. Most transplant patients will tell you it is trading one chronic condition for another.
I was listed on March 19, 2021, and received a call that a set of lungs were available on July 9, 2021. When I hung up the phone, the first thing I did was say a prayer for my donor and donor family. I still do not know anything about my donor. My joy of receiving a second lease on life was muted by the grief my donor’s family was experiencing. I had to take every opportunity to honor their gift.
I wear a Donate Life – Recipient pin which is a conversation starter. I share my story at the drop of a hat. My IPF journey, thanks to both an amazing care team and my generous donor, has allowed me to experience walking my daughter down the aisle, seeing the birth of two granddaughters, and another complete trip around the sun.
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