The hunt for a transplant organization was on. He applied at several different institutions to get on the list. Even Mayo clinic wouldn’t accept his case. They all told him that because he had scoliosis, it would complicate the operation and could compromise the lungs that they put in there. They decided to give it one last shot at a place in St Louis, Missouri. He was there nearly a week for rigorous testing and monitoring. Multiple blood tests, pulmonary function tests, cardiac catheterizations, bone density scans, x-rays and MRIs on top of appointments with doctors upon doctors, financial officers and support groups and meetings. They returned home to wait for his letter of acceptance or denial.
After months of searching and applications and waiting for calls back, he got accepted at Barnes Jewish in St Louis. The first league of the race was over. He wasn’t listed right away, however.
In order to be listed for a transplant, he had to meet certain requirements.
- He had to be within a 50 mile radius of the hospital so that he could attend pulmonary rehab and be able to report promptly at the time of transplant.
- He had to be physically stable enough to endure the procedure – he wasn’t so they had him doing pulmonary rehab therapy every Monday-Friday until he had his transplant.
- His doctors wanted him to lose some weight as his BMI would effect his LAS, or Lung Allocation Score – where he is at on the waiting list.
These were just a few among a huge number of things that had to be in order before he could be listed.
So, on July 7 of 2012, my parents had to relocate nearly two hundred and fifty miles away from home. My dad underwent Pulmonary rehab five days a week until his transplant. Because he was doing rehab daily, he lost weight rather quickly and he was listed not long after arriving in St Louis.
My parents rented a small one bedroom house in St Louis through an organization put together specifically for those awaiting transplants. They became acquainted with their neighbors, who were also there in the same boat. Leaving their three kids behind to pursue this endeavor was hard for them. But we visited them frequently as they couldn’t leave the area for fear of being too far away if he would get the call.
My mom lost her job right before they left for St Louis as well, putting a big financial strain on the situation. Several fundraisers and an auction were arranged to raise money for rent and expenses. A friend even sold T-shirts (the purple ones in the photos to follow) to give the profits. If it weren’t for the support of family and friends and the community as a whole, they wouldn’t have made it through.