I know it’s been awhile since I’ve shared much, but I do I have a good reason. I’m currently sitting in the cardiovascular ICU at University Hospital in Salt Lake City Utah listed Status 1A for heart transplant!
Maybe I should give you a little of the back story. For a little over a year now I haven’t been very happy with the level of care I had been receiving from the Heart & Lung Transplant Center at Mayo Clinic in Rochester Minnesota. I use the term “care” loosely since they really weren’t doing anything other than dragging me out there every three months for check-ups that would result in nothing. I would often come with questions and/or concerns, but they were rarely addressed, and sometimes ignored completely. They have quite a few transplant cardiologists there and I’ve seen most of them, and that is a large part of the problem. When using a team approach to treat your patients, especially complicated patients, the team shouldn’t be in double digit numbers. Unfortunately, I rarely saw the same doctor twice, and not all the doctors even agreed about the severity of my heart failure. So, I sat, stagnant, not getting the help I needed for the increasingly obvious progression of my heart failure.
My last visit was in June, and the doctor I saw felt that my needs would be better served at Mayo Clinic in Phoenix Arizona. This was an opinion that was shared by several on the “team,” but no one seemed to think to pick up the phone and call Phoenix and ask them to review my case. This time we insisted it be done and we were assured it would be. After waiting few weeks I inquired about the referral to Phoenix and I was told the doctor was out of town. Only one of 23 transplant cardiologists can pick up the phone and do it? I waited a few more weeks, and the transplant coordinator stopped taking my calls, and shoved off her responsibility to a poor scheduler. I was told they would let me know when the call was made. Again, trying to be patient, I waited a few more weeks and called again. This time, the scheduler, who was now acting as an intermediary between me and the nurse coordinator, told me the call had been made and something had been faxed. That day I received a message from the doctor himself saying he made the call. More waiting…
Well…maybe not more waiting, I got impatient and asked my local cardiologist if he would make some referrals to other transplant centers I had been researching, while I was trying to wait patiently for the whole Rochester/Phoenix thing to get figured out. I was going to continue to keep Phoenix an option, but I wasn’t going to put all my eggs in one basket. I wanted to be seen someplace else for another opinion. Thankfully it didn’t take long to narrow it down to the University of Utah and in that time I called Phoenix myself and got the ball rolling.
My first evaluation was scheduled with Utah for the 10th thru the 13th of September. I had a few appointments before I was to see the transplant cardiologist who specializes in Amyloidosis. Of course I was skeptical, come on! If he was an expert I’d be the judge of that! I knew the second he walked in the room that this was a whole different kind of “team” approach in Utah. The cardiologist said he had been studying my medical records for a month <GASP!> and he was able to pull things out of my history that he could only know if he had done just that…studied my medical records. Beyond the fact he passed the “Amyloidosis Expert” test he did’t even know he was taking, he walked in the room with a plan. I knew, instantly, I was in the right place.
After an intensive review of my records the cardiologist felt that something needed to be done sooner rather than later, and that based on just the records he reviewed from Mayo said I should already be in the hospital and my heart was in very bad shape. Knowing I was in the right place and with the right doctor 10 days after returning home to Casper from Utah I was back in Utah to be admitted into the hospital.
Monday morning I went straight to the cath lab to have a Swan-Ganz line put in, also known as a pulmonary artery catheter. It is the “IV” that is used to administer the medication that helps my heart beat better. Not only did I get my swan line, and admitted into the ICU, but I also got the call that my transplant status was upgraded from Status 2 to Status 1A. Monday was a little bit of an exciting day.
Now we wait, wait for a heart, today is only day four. The team seems to think I could get an offer pretty quick, we’ll have to see.
Four days and counting…
And yes, I called Phoenix right away, they were already starting to schedule appointments for my evaluation there, and told them I needed to cancel; I wouldn’t be traveling to Arizona any time soon.