I still find myself stunned and in shock that our family is going through this. For real? I couldn't believe that I was about to meet with the Heart Transplant team at Primary Children' s Hospital. Was I really there for my own daughter?
Mark and I prepared ourselves both spiritually and mentally. We knew we needed to be strong and make it through this appointment. This was 'The Talk' and we were first reminded by Dr. Everitt that a discussion or appointment such as this one only occurs when there are no other options available. We had no idea just how educated on Heart Transplants we would become. We had our list of questions with us, but we didn't have to ask any of them. They were all addressed and in a lot more detail than I imagined.
Our appointment began at about 11:00am and continued for the entire day. Yes, the entire day. Mark and I walked out of the clinic room at 6:00pm. The clinic was closed. We had just spent all day in the Cardiology Clinic. Our appointments consisted of first meeting with the Financial / Insurance Rep., Social Worker, Pharmacist, Surgeon, Transplant Coordinators, and finally Dr. Everitt. Each person spent 45 min. to 2 hours with us. We were completely exhausted by the end. Here is what they all had to say.
The Transplant Coordinators (Michelle and Emily) attended our appointment off and on all afternoon. During one of their 'pop-ins', they explained to us the protocol for being on the transplant list, and / or receiving a heart when one becomes available. First, Madison cannot be sick. (no pressure on me..I now demand hand washing.) Aside from the fact that Madison's heart condition could worsen if she gets sick; they simply will not do the procedure if she is sick at all. She can't even have a cold - nothing. It's too risky and they won't do it. Second, we must always be within 2 hours of the hospital. Following Madison's transplant we will need to stay just as close to the hospital for about a year. Needless to say, we're not leaving Utah anytime soon.
Financial / Insurance Rep: Are you ready for this? Our health insurance is one of the many who don't cover transplant surgeries in Utah. Their reason is political and only has to do with dollars. A transplant is one of the most expensive medical procedures. Because of this, our insurance company has hand-picked certain hospitals within the US that are approved and contracted with them. Denver is the closest contracted hospital for us. (remind me to send our insurance company a Christmas card..) I have contacted our insurance company and they informed me the choice of hospital was based on fatality rate and cost per surgery. Denver can do it cheaper than Primary Children's. K-remember the rules above.. we have to live within 2 hours of the hospital and have to remain just as close for up to a year following Madison's surgery. It became obvious very fast that our family would have to re-locate to Denver. OR Madison and I would move to Denver for, who knows how long, and our famiy would be seperated.
Knowing this was Plan A, I tearfully asked if there was a Plan B available. I was so scared that this was our only option. I couldn't imagine how we were going to coordinate this. Were we really being asked to seperate our family? The Financial / Insurance person explained that Plan B would be applying for Medicaid for Madison. We applied. Madison's heart diagnosis qualified as a disability and Medicaid now serves as her secondary insurance. Medicaid has only approved coverage until her surgery. Once Madison receives her new heart, she won't have her disabilty anymore and Medicaid won't cover her. This is 100% ok with me. I am relieved and thankful that our family is able to stay together. Now we are definitely not leaving Utah for any reason!
Pharmacist: Following Madison's transplant, she could be taking 7-12 different medications. Half of these medications consist of steriods, blood thinners, rejection medication, and antibiotics. The other half of the medications are given to treat the side affects from the first half.
Surgeon: After an exhausting day, we had the opportunity to meet Dr. AK. I would meet with him again and again and again. He is brilliant and confident in the surgery he performs. He made Mark and I feel so much better. The feeling I felt while meeting with him, confirmed that Madison will be ok. She's in good hands. Dr. AK described in great detail the process of what happens from one life to another. He explained that in most cases, once the new heart touches warmth, it begins to beat on it's own, without any assistance from modern medicine. Dr. AK said, "God created the heart to beat and it simply knows what to do." As I have read other blogs, he was right. Many hearts simply start beating on their own. It is absolutely amazing. Dr. AK said it's a miracle and he has been given the privilege to witness it numerous times over. As he contined to explain this process of what happens between one life to another, I remember thinking how in-tune all medical staff must be when a transplant takes place. I thank him for his time that day and I'm thankful for the opportunity I had to meet him.
we can do this...