Back from Pittsburgh

I got back from Pittsburgh on Thursday night after being there since Monday morning. The weather was in the 20's and 30's for the whole time, but thankfully for the most part, we were inside. When we did go out, I had on a sweater, thermal vest and a big coat I got from Columbia as well as a scarf and gloves. I was prepared to be freezing.
While I was worried about being cold, I was more worried about what the doctors would say. Three out of the four doctors we saw agreed that I was too healthy at this point in time to be listed. The one doctor who thinks I need it now/soon, we were told, has a tendency to think the majority of patients need a transplant. I asked, "Is he kind of quick to pull the trigger?" and the other doctor gave me a knowing smile and a subtle nod. 

There was talk about me needing a heart cath, so the surgeon could see where my collateral vessels are. But since I don't need the transplant anytime in the near future, the cath has been canceled. They agreed that putting me under for information that they don't need yet isn't logical, especially since it could be a while before I need the surgery and by that time - they may have to do it again just to see if anything has changed. This is another huge relief for me. The doctor had his nurse call us that same day to let us know the good news, so we boarded the plane with smiles on our faces. 

But there was one thing that was not good news for us. The surgeon is leaving UPMC to go to Penn. If he leaves and the new surgeon isn't as good or doesn't think he could do the surgery, I'll have to follow him over to Penn and start this whole exhausting process over again. We take one step forward and then we get this step backwards. For once can something with my health be easy? Could this please just go smoothly and not be one more thing my family and I have to worry about? 

Thankfully, for now, I am healthy and I don't need the transplant. If I needed the surgery and he was leaving in the Spring, I would be even more upset and stressed. So for now, I am going to do everything I can to keep myself healthy. Low salt diet, go to bed at a reasonable hour and no caffeine. It's worked so far, lets just hope it keeps working. 

Thank you for all the love and support over this difficult trip. Without you all, I have no idea how I would've gotten through this. Your support means more to me than you'll ever know and I am forever grateful. 

Hope and Love,


  1. I'm sooo glad that you are too healthy to be listed right now. As far as the surgeon leaving then that's just one more good reason to not be listed right now. I hope you are able to get everything settled as to which surgeon you will use and where your surgery will be soon so that you don't worry about it.

    I know what you mean about feeling "why can't just ONE thing go right?" I said that many times when dealing with all of Jessica's medical issues. It's a difficult life but you deal with it with such courage and grace. Keep fighting, Becca! You are an inspiration to us all!


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My Life As A Chronically
Ill Young Adult
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