Quinn’s Transplant Story…
Quinn, throughout his life had two liver transplants. The first as a baby, due to biliary atresia. For all those years I cared for him, every step of the way. At first, I didn’t know what this was. I was a new Mom, with a sick baby. I immersed myself in his care, learning to understand his condition and transplants in general. And later choosing to leave my job, to care for him (and later his sister) full time. It was both a joy and sometimes a challenge.
The second transplant he received as an adult, in his twenties. As an adult, the experience was different, though I was still his caregiver and major support, all the decisions were his own.
When an individual reaches the age of 18, they are cut off and not ready. it means they make the decisions, there are no services, they are automatically treated as an adult. The problem is, they are not fully adults. What this does is takes away the services they received prior to that as a child, for such things as medical services, expenses, hospital stays and donations for support.
They do not want the same things we are used to providing. Their support needs are different, their ways of healing and recovery are different, and hard to find.
We would talk about what the experience was like for him, what worked well and the kind of support he wished he’d had as well as what he wished had been there for me. It was a goal of ours to make this easier for others. Our ideas here, are the results of these conversations, and our experiences.
This second transplant gave him over two more years of life, to become who he needed to become. The experience was a transformation for both of us, and when he died from complications of liver disease, it was his choice, his way and it was, both beautiful and heartbreaking.
I felt compelled to both honor his life, the amazing young man he had become and the ways we had talked about helping others in this situation.
Some Facts… about Liver Transplants
Currently there are 113,000+ men women and children on the organ transplant list.
20 people die each day waiting for a transplant. This number was about 12-14 when we first began.
Every 10 minutes another person is added to the list
The average cost of a liver transplant, in 2017 was more than $800.000.
The second program in the Foundation was born. Based on what he experienced, throughout those 25 years. What he would have wanted, what was hard for him to see in me, working so hard for him and for myself. It is also based on what I saw and experienced myself.
We were very fortunate in our experience, we had a good relationship, we had amazing doctors, nurses in the world, in some of the best facilities in the world as well. We built strong, empathetic and remarkable relationships with them. I still am very grateful. I became an incredible advocate for both of us.
We learned that not everyone has this experience, we wanted to do what we could to make it better, easier for others going through this life-giving experience. It is literally the gift of life, it is life changing and it is also quite complicated. It can be demanding for everyone. Sometimes even isolating.
So that no one else has to go through this alone,
So that no one has to choose between paying for medications or rent
To provide support and assistance in paying for the costs
To offer community. In a word. A group of individuals who can help you move forward.
So that no one has to choose between work and caring for a loved one.
To offer an option for those who want to invest in these resources.
There are many education scholarships there are no medical scholarships that I have seen. Until now.
For the patient this is to help pay for expenses, that include medical costs, medication costs, lab visits, transportation, learning to take care of yourself. It can also provide support in moving from surgery to independence.
For the caregiver they can be used for one night’s lodging, one meal, one nanny, one ride… because often there is not a chance to arrange for these things. When you have to leave, at the last minute, in the middle of the night, without a chance to think of these items. If this can relieve the stress that caregivers experience it would be a gift.