“Heart transplant is not a cure. It’s an exchange of a life long diagnosis.”
Shortly after being Airlifted to UCLA by helicopter we had our first meeting with our Pediatric Heart Transplant Coordinator. Flo became our steady guide through the technical and medical world of transplant. Everything was brand new and everything was uncertain. She spent hours explaining transplant, the tests from every specialty, research to qualify, the insurance piece, the complicated puzzle of listing rules, guidelines, plans of actions, consents, their role, my list of my new mom duties.
One of the first things she said, “Heart transplant is not a cure. It’s an exchange of a life long diagnosis with life long implications.” This was a paradigm shift. Not a cure? But it would fix his heart. Not a cure? His new heart wouldn’t have muscular dystrophy. Not a cure? His new heart would NOT GET muscular dystrophy.
NOT A CURE because on his own,
his body would reject that LIFE GIVING heart.
The eclipsing words for me were life long. If we did not sign consent to try for transplant, our life long with Ian was coming to an end. We already had a life long degenerative disease. We’d do anything for a longer life with Ian, even with muscular dystrophy and heart transplant complications.
How much does it cost to get a new heart?
From August first we were on two tracks, sustain Ian and pursue heart transplant. There was hospital care from UCSF, CHOC, and now UCLA to sustain Ian, and testing to decide if he would qualify. When we started seeing all the medical bills our heart sank. $50,000 for a helicopter ride. $2,000 a day in CT ICU x 81 days. Intubation, heart surgery, Echos, EKGs, X-Rays, blood tests… dining out, commuting, and hotel stays were adding up.
Thanks to insurance we were almost millionaires! Randy’s hard work was paying off because of good PPO employer insurance. Almost a million dollars in medical expenses were now being paid! WHEW! We quickly met our out of pocket annual maximum and the rest was covered. We just never saw the money in our accounts, but the medical bills were being paid! Thank you, Lord! Thanks to so many of you, the unexpected costs were covered as well, hotel, dining out, gas, parking, etc. We never even asked, you just gave.
I thought all the medical bills were being paid. Turns out, only the bills the insurance deems necessary and the amount they deem necessary are being paid. The visit from the dentist in the CT ICU post transplant, due to persistent pain in his jaw, was not covered. The helicopter… is still being discussed. Things like this, amounts like that, not covered.
I feel a little hesitant to ask for more because people have given so much and insurance has saved us a load of heart ache. But it’s Ian’s future that makes me willing to keep on asking. I don’t know what kind of insurance he will be able to get when he is on his own. I don’t know what kind of job Ian will be able to keep with muscular dystrophy doing it’s thang. I don’t know what insurance and health care will look like in this very uncertain world. I do know that he cannot have any lapse in his $1500-$2500 medications. I do know that he cannot wait to be seen by a specialist even if the insurance says they won’t pay for it or can’t authorize it for another month. So building up some financial support for his life time brings me some comfort.
For this reason, our transplant social worker, Lana, encouraged us to sign up with COTA, the Children’s Organ Transplant Association. COTA is a non-profit organization dedicated to helping raise funds in honor of kids just like Ian.
COTA works like this; They help us raise funds in honor of Ian. COTA keeps and manages the funds. They invest it to be able to give more of it. You get a tax credit. Families all over get tax free help with big and little bills. They will pay things like his portion for insurance, transplant related hotel stays, uncovered expenses, and co pays for his life time. Funds we raise help kids RIGHT NOW. And when it’s Ian’s turn, COTA will help him too. 100% of what is raised will be available to assist with trasnplant-related exenses for his lifetime. It reminds me of Baily’s Savings and Loan from It’s a Wonderful Life. Someone else’s fundraising helped out with our farm. Our fundraising is helping someone else’s farm! Mooooo!!
Since we last published this page we have met personally, face to face with the COTA president, Rick Lofgren. He answered all of our questions and then some. The greatest news for me is that Micah can be helped by COTA as well. Because they share the same diagnosis and because Ian has blazed this heart transplant trail in all it’s Glory, thanks be to God, Micah is automatically eligible. Micah is being followed by the UCLA Heart Transplant Center and COTA is helping already!
UCLA invested countless hours in our lives for something divine that was out of their hands. We all know how that story ended…. a divinely appointed heart set aside just for Ian! We have always been in God’s hands and we gladly welcome this new “disease” for Ian and Micah and invite you to walk along side of them. Your support through COTA will help kids right now like Ian and Micah with all the costs related to transplant. Again, all funds raised in their honor will be available to them for their life long journey with this new heart!
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