One More Kick In The Gut

I want to apologize for not posting an update sooner, but every time I opened up my computer and started to type up about my latest doctor appointment I couldn't see the screen through my tears. If you follow me on Twitter, Facebook or read my blog update before this one, you know that the hospital called Lucille Packard that had once said they could do my heart-lung transplant that I would eventually need has gotten a new surgeon who doesn't think he can perform the surgery.
So the doctors asked the adult side (Stanford) to see if they thought they could perform the surgery. I went up last Wednesday, had an ECHO, EKG, Pacemaker Check along with a 6 Minute Walk. Things all looked good, they looked the same and I had even lost weight so my low salt diet is working well. But there was something going on. I could feel it. Normally after the arrhythmia discussion and pacemaker stuff is all taken care of, my EP doctor and my EP nurse leave to go to other patients and leave my cardiologist there to talk about other things. But everyone stayed in the room and I knew, I just knew whatever they were about to tell me wasn't going to be good. 

When I asked my cardilogist if they had heard back from the adult side if they could do my transplant when that time came, he just shook his head. I asked even though I knew the answer, "No you haven't heard from them or no they can't do it?" He didn't need to answer, I could tell. My heart caught in my throat and my stomach suddenly felt empty. My doctors have only seen me cry twice in the 7 years that they've known me. Whenever they give me bad news, I've been able to hold it together and I cry once I get back in the car or wait until I'm at home. But I couldn't hold them in this time. Another kick in the gut and my eyes started to tear up. My EP doctor handed me a tissue box and rubbed at my back while my cardiologist told me that this was not a set back they had been expecting and that he had even had a few choice words for them. Have to admit, knowing my doctor cursed for me made me smile because honestly, I wanted to curse too. I wanted to do a lot of things, kick something, scream and yell about how it wasn't fair. But instead I listened to him talk about sending out my records to at least two other centers in the US that could possibly do my transplant when the time comes. It'll be a week on Wednesday since that meeting with my doctors and we haven't heard back yet... I'm hoping and keeping my fingers cross that we get some good news.

If anything good has come from this it's a few things. I learned who in my life really cares about me. When I posted about this on Facebook, there were certain people I expected to hear from that never even so much as sent me a text or posted a comment letting me know that they were thinking about me.  And to be completely honest that made this situation hurt even more. People that I considered friends or people that I thought cared about me not even taking a second out of their day to send me a text. That's what hurt. In my time of need, the people I expected to be there, some of them weren't. But then there were people who posted and even sent me private messages letting me know that they cared that I didn't even expect to hear from. It was so touching to open my Facebook and see messages from people I haven't spoken to in years telling me that they are thinking about me, praying for me and that they are here for me if I need them. So to those of you who have supported me and continue to support me, thank you.

The other good thing that could come from this is that I've never been to St. Louis or Texas, so if either of them accept me as a patient, that'll be another place in the US that I get to visit. Just hope that whoever agrees to take me my insurance will not fight us on it.

Thank you to all of you who have sent me messages, texts and supported me. It means so much to me and I appreciate it more than you could ever imagine. Your prayers and support mean the world to me, thank you for everything!

Hope and Love,


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My Life As A Chronically
Ill Young Adult
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