GREY MATTER LIFE

I’ve been an organ donor since I got my driver’s license at 16. It entirely made sense 20 years ago to become an organ donor. My parents were donors and so I became one.

Quite frankly, I don’t think I spent much time thinking about the meaning and significance of the gesture of becoming an organ donor 20 years ago. I certainly didn’t take much time to consider the impact my donor status could have on those awaiting transplants and those were certainly not concepts I was acutely aware of or had given a lot of thought until recent years.

While it would be ideal to think that in a perfect world there would be replacement organs, parts and tissues for all those who suffer from organ failures and various blood cancers and diseases, the reality is that there are limited donor organs, blood and tissue for those who critically need it. Sadly, supply has yet to keep up with demand and the world is not perfect.

According to the U.S Department of Health and Human Services site, organdonor.gov, here are some startling and poignant statistics and information.  

• Someone is added to the organ donor waiting list every 11 minutes.
• Each day, an average of 75 people receive organ transplants. However, an average of 20 people die each day waiting for transplants that can’t take place because of the shortage of donated organs.
• 110,586 people are waiting for an organ
• 1 organ donor can save up to 8 lives
• There are more than enough people waiting for an organ to fill a large football stadium twice over. 

Bone marrow transplants (also called a BMT) or a cord blood transplant replace diseased blood-forming cells with healthy cells. Diseases that may be treated with a bone marrow or cord blood transplant include: Leukemias and lymphomas, multiple myeloma and other plasma cell disorders, severe aplastic anemia and other marrow failure states, sickle cell disease and thalassemia, inherited immune system disorders, such as severe combined immunodeficiency (SCID) and Wiskott-Aldrich syndrome, inherited metabolic disorders, such as Hurler’s syndrome and leukodystrophies and myelodysplastic syndromes. Information courtesy of the Bone Marrow and Cord Blood Transplantation, U.S Department of Health and Human Services.

Why advocate for something that has no impact on my own brain tumor diagnosis and I can’t possibly personally benefit from as a patient?

It makes sense, it’s compassionate, an expression of humanity and because I know others who are celebrating life along side all of us after receiving the gift of organ donation. Each are testimonials for why organ and tissue donation is so important. Lastly, because you never know. You have no way of knowing the impact you can have in another human beings life until you put yourself out there and try.

As I type this sitting outside watching the boys ride their bikes, I am reminded that you never know. I think about them. My children. As a mother, I can’t begin to comprehend the cataclysmic scenarios of what if’s. What if one of my children needed an organ or tissue donor and no family member was a match? What if a donor organ never materialized? What if? The statistics are unsettling and while today for us, they are simply statistics, tomorrow is another day and what if?

I was privileged to work at Emory with a fellow Patient and Family Advisor who was herself a Heart transplant recipient. A mother like me, she was a vibrant and passionate advocate for patients and families not only in the transplant program, but an advocate for all throughout Emory Healthcare.

She fell victim to what many transplant patients fear and accept as they adjust to living as an organ recipients; the potential threat of organ rejection. Passing away in February a few days shy of celebrating the three-year anniversary of her heart transplant, she left behind a 9-year-old daughter, a loving family and countless others who admired her for her love of life.

As a patient myself, my work as a PFA has brought me close with patients and families from all paths of diagnosis, disease and recovery. While being a rewarding, eye-opening and uplifting experience, my work as a PFA has often caused me to reflect deeply on the journey of life and what it truly means to live and cherish life to its fullest each day.

I never expected to have such an impactful lesson on the significance and meaning of organ donation and how the impact of such a gift can be so generous in affecting qualitative measurements irrespective of a measurement of years for recipients.  

At the close of our last PFA Council meeting last month, a fellow council member and transplant recipient himself, emotionally shared his sentiments about the loss of our colleague and to many, a friend. He was humble with no bravado or over-reaching sentiments. Life is a gift and he eloquently and simply expressed the privilege of being a part of a group given a second chance to live life again.

His life, like hers has been dedicated to celebrating that second chance, honoring the gift they had received and living without regret and all without guarantees.

I felt reaffirmed that yes, it is ok and I’ve been right to embrace that there are no guarantees or assurances in life aside from the love, joy, appreciation, gratitude and happiness that we bring to our life.

Life is complicated, complex and chaotic. It’s filled with baggage we create, take on from others and we often don’t need any of it. I’ve learned along the way that it’s important to embrace “weeding out the garden of friendship” and to take a stand and set your own priorities, find your balance and embrace living. In the end, it is about quality over quantity.

I wish it hadn’t taken all these years, a brain tumor and developing these wonderful relationships to find such clarity. Yet, let’s be honest, the journey of life is about learning lessons and that takes time.

Almost a year ago, Paul and I signed up to become Bone Marrow donors through Be The Match, the National Bone Marrow Donation Program.

Friday, Paul received a phone call that he’s been identified as a potential match for a patient. I know how much this would mean to my husband and it makes me emotional writing about it. Paul has donated blood on a routine schedule for 20 years and I can see in his face and hear in his voice that the opportunity to give the gift of life to another as a living donor is something he holds close to his heart. If given the opportunity to be a match for a patient, I am not sure either of us could begin to articulate how meaningful and impactful that experience would ultimately be.

While I know this is what he would want to do regardless of my brain tumor diagnosis, I can sense that the opportunity to give life to another may go miles toward healing the wounds and pain of having a wife who he can’t heal, cure or treat. While we both recognize that there is no organ, blood or tissue that he nor anyone can offer to cure me, I can sense how healing it would be to be able to offer that gift to another patient and family.

A gift for both parties with diverging meanings yet an impact that is equally profound.  

There’s no perfect world and there are too many patients that will die as they wait for compatible donors or available organs or tissues. For us, this is unacceptable and to that end, we’ve taken the opportunity to at least attempt to affect change and begin to turn the tides for these patients and families.

To learn more about organ and tissue donation and/or sign up as a donor yourself, you can find out more information through these links:

http://organdonor.gov/

http://www.marrow.org/