A few weeks ago, I had the honor of speaking at the annual heart/lung transplant picnic at University of Iowa. A coordinator nurse there had heard me speak at a learning session for Iowa Donor Network, and asked me if I would consider coming out to Iowa City to speak at their picnic… The audience was mostly heart or lung recipients, some of their medical staff, and someone from Iowa Donor Network. For the chance to have my lungs closer to home – the chance to be around a lot of people like me – and the chance to be around people who help deliver these gifts to us – I couldn’t possibly pass up an offer like that!!!
We took Laura’s Mom out with us. She’s one of my loyal readers… (Hi Mom!!!) She had mentioned to me that she wanted to hear me speak someday… It seemed like a perfect opportunity to get her out of Illinois for a weekend, and let her see me at a place where I would likely be a little more emotional than I would normally be…
It wasn’t my usual audience – I’m more accustomed to speaking before donor family members, or medical and OPO professionals, or sometimes regular people who need to know about organ donation… The people at this picnic were people who shared my life experience – some have had a much more difficult journey than mine – some have more amazing stories than mine and Kari’s…
At first it felt kinda odd… I love telling donor families about the amazing gifts they give us, and how we cherish their loved ones, and them… And I love thanking medical and OPO folks for doing what they do to deliver these gifts to us, and for working to keep us on the right side of the grass… Part of me didn’t know what business I had telling my story before so many people who have lived similar stories – so I decided that I would tell them about Kari and her family and friends, and then I would suggest that one of the things we need to do, as recipients, is to share our stories… I’ve used some of this before – but this is what I said about sharing our stories:
We’re given this incredible gift freely. Often times, a family dealing with incredible grief – steps back from that pain for a moment and chooses to help others… They choose to help us. There are no strings attached – they ask for nothing in return… But we might owe them something…
And we’re surrounded by medical staffs who have faith in us, and take a chance that we are good transplant candidates – and people from Iowa Donor Network, whose goal in life is to connect gifts from donors and donor families with people who need those gifts… All of them want little more than to give us a better quality of life, and help us survive… We might owe them something too…
I think we owe them a fight – I think we can help pay what we owe by taking care of ourselves to the best of our abilities… We owe them vigilance in taking care of the gifts they gave us, or the gift they helped deliver to us – we owe it to them to do what we can to protect those gifts, because those gifts are as fragile and precious as they were the day they were given to us…
A lot of our routines seem kind of demanding – our daily medical monitoring – all of our medications – the continuous follow-up with our docs and clinics… And so many of the medications and procedures come with bothersome and sometimes devastating side effects… But for the vast majority of us, we’re so much better off than we were before transplant and while we waited…
We can never pay these families back for the gift they gave us, nor can we pay back those who helped deliver those gifts to us, or those who help us keep them – but we can try to pay it forward…
Organ donation is so much more than simply saving a life. It’s about love and about caring for people… it’s about realizing just how truly good people can be in this world. I began by mentioning the amazing stories throughout this room – I think for those waiting – for those wanting to walk in our shoes – I think it’s important for us to share those stories…
We’re here, and we’re alive and with our families and friends – we’ve already made a difference in the lives of others because of a gift – Go tell someone…
It doesn’t have to be a group – it doesn’t have to be dozens or thousands of people… You don’t have to conquer any fears. Tell one person – tell a friend, a neighbor, or a co-worker – tell the bagger at the grocery store, or the barista at the coffee shop. If you tell one person, that’s one more who knows – Go tell someone…
It drives my princess a little nuts, but if I’m not in my work clothes, I’m wearing Iowa clothing – sometimes Panthers, sometimes Cyclones, but most often Hawkeye clothes… Whenever someone asks, or pumps a fist and shouts “Go Hawks!” – Laura just backs away because she knows I’m going in… It happens often – the pictures in my wallet come out and they learn about Kari – more often than not, I leave them with tears and a smile, and a pledge that they are or will be an organ donor…
Just imagine – it’s easy to imagine telling someone your story and convincing another person that organ donation is a good thing.
And, it’s easy to imagine that person going home and telling their family, “I’d like to do that – I’d like my organs to save lives when I pass away…”
If you can imagine that, can you also imagine a devastating moment when a family honors their loved one’s decision?...
...Someone’s heart is beating steadily for the first time in a decade… Someone – perhaps two people, are breathing better than they have in years – maybe in forever! Someone is seeing the face of a spouse who has only been a distant memory – or the face of a grandchild for the first time ever! Two people are no longer tied to the torture of dialysis – and maybe one of them is no longer diabetic. Someone is waking from a coma with a new liver, and hugging a family who thought they might never be hugged again. Go tell someone…
I learned a few years ago that one of Kari’s teachers was a kidney recipient… That understanding may have planted the seed in Kari’s beautiful mind that organ donation was a good thing – or, at least reinforced that idea… I’ll never know if that made her vocal about her feelings about organ donation – I’ll never know if that saved my life. But, it’s a nice thought, ain’t it? Go tell someone…
Looking around that room I saw lung recipients from a few months to a few years out… There were heart recipients many years from transplant – I see the same when I look around in our support group at our hospital…
I also see people waiting… People waiting for the gift we’ve received and wondering when and if they are going to get that call… I do what I do to tell people about Kari – but I also do what I do for those people waiting, in the hopes that someone I might influence someday might give a gift that someone else needs…
Share your story… Share your feelings about organ donation…
Go tell someone.
