Help HOPE Live for Bart Mitchell

December 9, 2022

The transplant team is struggling to get Bart’s sirolimus levels just right so we have had to test, change doses, and test again…repeatedly. And this is a time sensitive lab. Too much sirolimus is bad (thrombocytopenia and hyperlipidemia) and too little sirolimus is bad (the immune system will attack and kill the transplanted heart) and we only have a 30 minute window to get it drawn. This particular day was our second try as the day before our van wouldn’t start (despite me using our jumper pack). We couldn’t get help in time and missed our window.

We are so thankful for a great team of doctors who try so hard to help and a great community of friends who never stop praying and never stop supporting. We are super hopeful for a new wheelchair accessible van so we won’t have to miss more appointments.

November 17, 2022

Bart had a catastrophic widow maker heart attack while out of state for work. He was life flighted to UPMC in Pittsburgh and after many, many intense days, he was approved for a heart transplant. Unfortunately, he could not live long enough to wait for one, so he was rushed to surgery to have an LVAD placed. The machine would pump his blood (so he had no heartbeat) to increase his chances of surviving till transplant. Unfortunately, he developed severe complications from it (and it was later factory recalled). After a year of waiting, a compatible heart was found. Although he received a new heart, new complications arose and damage from the LVAD remained.

So while we thought a heart transplant would be the end of our journey, it was actually the beginning. The hospital social worker explained that no one has enough savings for a heart transplant and we would need to fundraise. We’ve actually had to have 5 surgeries and countless procedures and the expenses of those have been astronomical along with his ongoing medical care and daily medication costs, not to mention having a transplant team far from home.

After years of this journey, our vehicle has become unreliable. Despite regular maintenance, we’ve poured thousands of dollars into it and it still has stranded us. We have broken down many times (even though we carry a battery jumper pack) including 5 times during our last trip to the transplant team (and needed to be towed) and it has caused us to miss an appointment with a transplant doctor in Pennsylvania, miss an appointment with a doctor at home, to be late for a crucially timed lab causing us to reschedule, and even stranded us after an appointment with Mayo and AAA refused to help because the outer bands of Hurricane Ian were beginning to arrive.

Bart is unable to help. He can’t help when the vehicle breaks down and he can’t help by lifting his wheelchair. His wheelchair weighs 65 pounds. I have to lift it by myself and it has wrenched my back several times and hurt my leg several times as it has slipped though my hands and banged into my thigh.

The great need before us now is a new vehicle. The only way this is possible is through fundraising. We need a van that will get us to our many local appointments as well as one that will get us to our transplant team (nearly a thousand miles away). Bart cannot drive and has to travel with his caregiver, wheelchair, service dog, medical equipment, medical supplies, and medication so we are looking for a full sized van with an Under Vehicle Lift to best suit these needs. This will also allow Bart to stretch out in the back on long drives to help avoid thrombosis and allow him to enter the van in his wheelchair without me ever having to lift it.

We for sure need help fundraising. I have been quoted from 85,000 to 120,000 for this. We will Fundraise through Help Hope Live which allows tax donations for donors and the assurance that each donation will go toward a verified medical need.

Thank you so very much for your love, help, prayers, and support. This has indeed been, as a transplant doctor has described, a “long and arduous journey” and we for sure could not do it without you.