What life looks like when there is no organ transplant.
There are still moments when I go to call her.
I still pause when I pass an old photo of her on display in my living room.
I either laugh hard, smile, or wipe a tear when I check my Facebook memories and I read her old comments on my posts.
I still have her voicemail messages on my phone.
I still talk to her, looking up at the clouds, when I walk the dog. My sister, Lisa, and I, talked regularly. She kept me company on the dog’s walks, and more importantly, I kept her company during all her hospital stays, especially during COVID lock downs when technology was the only thing that kept families (with sick loved ones) close.
My sister, Lisa, passed away in September. Born a year and a half apart, we grew up, explored, and shared a life together. I miss her so very much.
If I was in the same room today with D.J. Ferguson’s mom this is what I would want to say to her.
As you shared during your interview on the Today Show this morning, your son has concerns with possible side effects (related to his heart) if he gets the COVID19 vaccine. For that reason, he is choosing not to take it which disqualifies him from being considered for the heart transplant list, a heart he very much needs.
My sister had a terminal lung disease and could not be put on the lung transplant list. The choice was made for her. Without getting into the medical jargon, she had an elevated level of antibodies which put her at a high risk of her body rejecting new lungs from a transplant.
All those doctor appointments and medical tests, only to be told — no — at the end of it all. I remember her crying when she learned the news. It was heartbreaking. I didn’t know what to say to her. What can one say?
If I’m going to be perfectly honest with myself I understand why the transplant “powers that be” denied her lung transplant request. At our initial meeting with the transplant team reviewing my sister’s case, we were reminded that an organ is a precious resource and that is why the choice of who to give it to is done with such care. They thought that my sister’s condition was risky and therefore thought it would be better to give it to someone who could better hold on to that precious gift. That’s the same struggle your son’s medical team faced when deciding if your son would be able to hold on to that precious gift without protection from COVID.
My sister’s and your son’s rejection is just one of the many who get denied for transplants every day, many because of no fault of their own.
Your son and the circumstances around why he is not going on the transplant list are different than my sister’s but the reasoning as to why remains the same. Organs that save lives are by far one of the universe’s most precious gifts, and they are scarce.
Perhaps your son is at a crossroads right now. I’m hoping he is still thinking about his choice.
I hope and pray you are still wondering if it’s the right choice.
From one family who struggled with a very sick family member to one who is now, I pray you keep having many, many phone calls with your son.
I hope you keep taking photos of your son and his family and run out of spaces to display them because there are so many.
I hope your phone continues to be full of new voicemails.
I hope you never talk to the clouds.
I share this perspective because it is one I have unfortunately earned. I share these thoughts because they come from within, from personal experience and pain. I do not share them to debate anybody’s choices, politics, beliefs, etc. There’s already enough of that. I truly share them with the best intentions. Maybe it will help in some way. If not you, maybe somebody, some family, in a similar situation.
And to be perfectly honest, I share my thoughts hoping you can change his mind.
Because I miss my sister.
Love,
A sister and a mom.
#organtransplants #transplants #COVID
