Canceled Plans Doesn't Mean Canceled Fears

Due to having the stomach flu this past week, the evaluation up in Pittsburgh has been canceled and postponed to a later date. My first reaction was relief. Pittsburgh had suddenly sprung on us that they wanted to do a right heart cath while I was up there and on top of that - they would be going in through a different way and not giving me anesthesia. This was a process I had never had before and it scared me to death. Would I feel it? Would I be able to see it? I was most worried about being aware during the medical procedure if anything were to go wrong. How terrifying would that be? You know your heart is doing something bad but you can't move and your parents are out in the waiting room... It still brings tears to my eyes.
Not only is that a fear of mine, but the fact that I have had the same cath team since I was a 12 years old doing the cath was a big comfort to me. They knew me, they knew how my body reacted and knew how to be prepared for anything and everything I could throw at them. It had taken years for them to earn my trust and I can now say that I full heartedly trust them with my life. I can't say that with Pittsburgh just yet... but I'm supposed to trust them anyways. This isn't an idea that sits comfortably with me. 

While my doctors up in California have decided to get in contact with the ones in Pittsburgh, that has brought me some relief. Maybe they will be able to inform them about my lungs, and about all the risks with me. Maybe then I'll feel safer with the new team, now that they have the knowledge from LPCH with them. But it still isn't LPCH. 

So naturally when the doctor appointments got canceled, I breathed a big sigh of relief. But a few days later, the fear is still back with me. Now I have to wait even longer to see if Pittsburgh will even take me into their program. What happens if we've wasted all of this time for a place that says no in the end? At this point, we think that Pittsburgh might be the last option for a center for my transplant. Will I have to get listed? If so, what number and is it going to be a high enough level where I have to move out there? 

I just want to get this done and over with. I'm emotionally exhausted. I just want an answer so I can deal with whatever the next step is. I feel on edge so much of the time and I'll admit - I'm getting snappy with people. I'm just so tired of waiting. I'm so tired of feeling like I need to be strong for other people when I can't even reassure myself anymore. One of the most common phrases I hear from people is "You're so positive!" and it's true - I usually am. I smile and I deal with my health as things happen. Which I think is why people get surprised or taken aback when I answer their "how are you dealing with this?" question honestly with answers such as, "I'm not dealing with it. I'm not dealing with it well at all." Sometimes I answer it with tears, or I curse and tell them how angry I am. Because right now, I can't be so positive about it and to be honest I don't think I should be expected to be. 



  1. Oh, my friend, I think you're amazing and strong always--even when you just want to say UGH and can't be positive. I'm sorry about the delay, sorry about the fears that come with a new place. Know that we are praying with hope! I love you dearly, and you know I'm always here!


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My Life As A Chronically
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