Carol’s Story: A Path to Donation Advocacy

I’m not an expert on the topic of transplant, on Donate Life, but I can share with you my experience, my path, my story.

Come walk with me. Around seven years ago, once again I was sitting in a waiting room.  How many times had we been through this? My brother-in-law just had another angioplasty. Typically my family shows up and we sit together supporting one another whether it is one more heart-by-pass or a seemingly straightforward angioplasty. Something was different this time.  The doctor, who knows my brother-in-law well, came out and told us that there was nothing more he could do.  The world stopped. Panic set in. What was he talking about?  Yet it was no surprise.  I wasn’t ready to go into the room and face Bill, tears would flow and strength was needed. It seemed like we spent hours upon hours at the hospital, but maybe not.

Next came a transplant surgeon. He was talking a whole different language. One we were not familiar with. Ultimately Bill got on the transplant list, but would the call ever come?  One year went by, then nearly two. I slept with the phone under my pillow in case my sister would call. The call could be either a heart was available or honestly one more trip to the ER or perhaps the end.  There were many trips. After nearly two years the phone call did come; there was a heart. My sister and I moved into the hospital, in a small family room, in order to be there during the duration of my brother-in-law’s stay. Miraculously ‘there is nothing more we can do’ changed into a new life.

Let me say it again, picture on your walk with me, a loved one’s life failing, their heart failing; a strong vibrant person, no longer able to walk more than a few feet without being out of breath, without having to take a nitro, many nitros. No longer able to pick up a child, a grandchild. No longer able to go to work. The shining light in their eyes fading. And then a transplant.

You can walk into support group meetings and hear laughter mixed in with the tears of those waiting for their turn to come. Afterwards, many recipients, as was my brother-in-law, are driven to give back, to volunteer, to visit others in the hospital, to encourage hope and healing.

This day could never have come without the grace of someone either signing up as a donor, relaying their preference, or a family understanding that their loved one’s legacy could live on thru the gift of donation.

Over the years, I’ve come to attend transplant related support groups, volunteer and dedicate hours weekly to support and advocate for all solid organ transplantation. I create comfort shawls, which are given to families at the most difficult time of their lives-the death of a loved one- and in that painful moment being approached for donation.

I’ve attended training, and, on occasion, I volunteer at events where we encourage people to sign up as donors by adding them to the Donor Registry.

Chances are you think that you do not know of anyone that is a transplant recipient, but think again. Donation is not just organs, you would be amazed with what can be done with bone. The idea of bone donation was more than I could imagine until attending a training session and hearing about and seeing what could be done. It can be made into a paste and used as a filler for a broken bone, screws can be made out of bone, bone can be used in spine fusion to name a few, allowing someone to heal. Most everyone knows someone who has had something done with what used to be referred to as cadaver bone, (Allograft bone) but that bone was from a loved one, who was thoughtful enough to become a donor and did not exclude themselves from being a bone donor. Allograft bone allowed my mother’s arm to heal, which just would not fuse due to her treatments for breast cancer when she was in her 30s. At the time I hadn’t thought about it, but I do now. That bone, that healing bone, was sacred. It came from a loved one.

A few years ago, I attended a volunteer appreciation luncheon and the speaker talked about her young daughter, who had a hole in her ear. A tissue graft, a transplant, allowed her to hear again. Those miracles don’t happen without the generous gift of life.

Of all the things I do, one of the most meaningful is attending Donor Family related events: donor memorials, donor celebrations and Walks/Runs, where both donor families and recipients are encouraged to participate. I’ll get to the walk/runs in a minute, but first, let me share with you what it is like to be surrounded by donor families.

I was up in Green Bay, it was a smaller donor memorial, and I was covering an information table, my brother-in-law, the heart transplant recipient at my side, my sister, a keynote speaker.

I went to most every family, asked them if they had received a shawl; I encouraged them come take a look at the table. At least a third were not interested and quickly said no, but I could see the pain in their eyes; I was respectful, but again encouraged them to stop over if they’d like. I could tell that it was difficult to even have attended the memorial. Sometimes saying no is easier than opening up, being vulnerable one more time. Yet, by the end of the event, every one of those folks stopped by the table. Many shared a small piece of their story.  I wish you could have seen their eyes as they found a shawl that reminded them of their loved one. One little boy, perhaps the age of 5 or 6 selected a man wrap, a blanket of sorts. Such a little boy, such a large wrap. His mother tried to discourage him, but he knew that the color was his father’s favorite. He would not part from the wrap.

I remember the day it was turned in. I took a picture of it because I loved its creation. The young boy wrapped himself tightly, and a piece of his father was with him again. I told his mom that he could have the shawl. Although too large for him, he was happy, he could wrap himself twice, he could put it on his bed; I told his mom not to worry. She and I talked. Her pain, as with others, was great. I knew that we, our group, had an important role to play, no matter how large or small.

That was a glimpse at a sad moment, but there are also joyous moments, not just for recipients, who are given the gift of life, but for donor families as well. Walk with me again, it is my first Capital City Walk/Run for organ, tissue and eye donation in Madison. There is the joyful look of teams made up of recipient and donor families, not teams of competition, but teams of love and care. Many create their own t-shirts representing their loved one. Some are lighthearted. There are photos of living kidney donors with their recipients, often a family member or friend.

The event is a family affair with lots of children, lots of laughter mixed in with the tears of remembering a loved one who offered the gift of life.

If you haven’t yet, please consider registering as an organ, tissue and eye donor. Not only can you change lives, you can save lives. Register at DonateLifeWisconsin.org or at a Wisconsin DMV Service Center.