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Charlie's Journey.

Charlie's Journey. Join me on the Highs and Lows from my Pre-Evaluation to ruling out other rare diseases, and hopefully getting a new heart. Thank you in advance for sh[...] read more

LATEST JOURNAL ENTRY - 2020-07-31T01:35:00Z

Transplant Eval part II

This last month I have been doing my transplant shindig, and I must say that it has been a serious emotional rollercoaster. So we saw all the doctors and listened to them say what and why and how. Completed all their labs, and tests. Completed all their procedures. In all, I have cried and cried so more. Been happy about some things, and mad about others. 
With the end result being, I need a heart. There's no way around it, other than receiving a Lvad to get me to transplant, or Milrinone to keep me going till transplant.  
When the cardiothoracic doctor, that has done more than 1000 heart transplants, in fact when you google his name it says he's one of the only that has done that many. When he says that the left side of my heart is not even moving and with my current heart its an 80% chance I will die in a year. You sit down, shut up, and listen.  I didn't know what to say,  I have two kids, I am only 38 like I haven't truly lived yet. To be told that, I stopped dwelling on if I should by a house, go back to work, open up another CD. All those things went out the window. Because all I could see when looking at the 3D model of my heart and watching the left side not move, I understood why he said what he said. There was no denying, the right ventricular was doing it all, and being squashed by the left side as it's trying to pump for the both of them.
So my husband who was in the meeting VIA Facetime,  of course, cried and got it out of his system before he picked me up, however, his eyes were red lol, and I got into the truck still in shock. But we still had more tests to do, before I could be presented to the committee. Fast-forward Tuesday, which is "D-Day". The day I go up, I get the call later that day, and I start crying when I hear the words defer. They are deferring me for additional testing. I cry because, like did they not see the notes for the electrophysiologist who said, I have no electrical conduction on the left-hand side, and the notes from the director of cardiothoracic who said, 80% chance of death. Like what freaking more do they want... Oh, I can tell ya, another freakin A1C level.. yes that's right an A1C level for diabetes held me from getting on a transplant list. I apologize to my nurse coordinator but I went off. I yelled, and I told her to have my doctor call me asap. I hung up and went into the room, and cried, and cried some more. My life is literally in someone else's hands, and they are deferring me because of an abnormal lab value, to repeat that one test, which can only be done lol 3 months from the last test. I know that because I went to school to learn that. So I cried more. Then I got mad. I'm now am glad the transplant team knows their patients would do this. I email my doctor, and went off again, and cried while I was. Like seriously people. Did he not fight for me in there? Tell them that I was on steroids and ALOT for an ear infection, and arm swelling. That I don't have a sugar problem. Because if he did, it would be no way they would tell me to go back to the drawing board. 
Well, he called me, and we talked for 43 mins. He was calm, and actually good at talking me off the edge. lol... I tell him, I am willing to do anything, and he said he knows, we can do but do the consult with the endocrinologist, and get their recommendations. That he sees an exception, that can actually get me listed higher than what they think I would be listed at. That he wants to repeat the stress test, and right after do a right heart cath, and then admit me for milrinone loading. With Milrinone, I will be connected to an IV for 24hs, receiving the dopamine till I get the call. He will take me back to the committee the following Tuesday after I meet with the Endo, and we will go from there.
I felt better after I got off the phone with my doctor, and starting to process it until my husband comes home from work,  crying lol, and start me all up again. Note to self, no matter when you tell him, he still will make you cry again. lol. I come to the conclusion that I will probably be crying a lot on this journey, also Mad, and Angry. I also realized how things and people I thought and even felt were important, aren't anywhere near. That I gotta fight and live for my family because they are all who matter. So that was my update, I have the endocrinology appointment tomorrow, and will update you guys again afterward.

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