"I thought I was going to see a 70 year old man, I am surprised to see you."
That's what the heart failure doctor said when she walked into Mike's hospital room for the first time. His heart cath numbers did not look good. This started us on the road to the Heart and Lung Transplant Center at Spectrum Health. I was instructed to be at every appointment going forward.
We were sat in a tiny room and scheduled to be there from 8:30am - 4:00pm. During this time we were given a handy dandy binder that included a business card holder...the holder is now full. We met with doctors, nurses, LVAD specialist, Transplant specialist, nutritionist, infectious disease, counselor, palliative care, and financial. Financial was the only one to not make us cry that day...he was great! I have never seen a team of people work so closely together and know everyone's jobs. I asked the financial guy a medical question and he was able to answer...they cross train and work as a true team and family. We were assigned a handler...she is called something else but that is my best description for her. She handles all our appointments, questions, she is the one to talk to. A lot of hard decisions were made in the weeks to follow; like who gets our kids if both of us were to die, cremated or buried, when do you pull the plug...you know, things you shouldn't have to talk about at 35 and 38 years old. Lots of tears were shed in those couple months that followed, let's be honest, they are still flowing now.
Mike went through a gauntlet of tests after that horribly emotionally draining day; countless vials of blood, stress tests, MRI, x-rays, ct scans, more blood tests, breathing tests, echo, ekg, more blood tests, and a right and left heart cath (he still wouldn't pack a bag). We met with the heart transplant surgeon and to everyone's great surprise Mike was doing much better than his numbers showed from September...but his heart is still struggling.
The entire team that we met with then gathered with all the test results and met at a council meeting to decide Mike's next medical path.
On December 8th it was decided that Mike be placed on the UNOS Heart Transplant List.
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