Back from Pittsburgh

This past week has been an exhausting one, both emotionally and physically. If you are friends with me on Facebook or follow me on Twitter, I kept you updated with how the evaluation for a heart and lung transplant was going. There was a numerous amount of tests I had to do. A barium swallow, a DESAT test (similar to stress test but not nearly as tiring), a 6 minute walk, an X-Ray, a full ECHO, a CT Scan and 25 vials of blood drawn. 

I met with the pediatric cardiologist who was supposed to do the cath that ended up getting canceled because of my bronchitis. (We later found out it had developed into pneumonia and now I am on a 14 day course of antibiotics). I also met with an adult CHD doctor, an adult heart failure doctor, an adult pulmonologist, a dietician, a psychiatric nurse for my psych evaluation, an infection specialist and the surgeon who would be doing the transplant. The overall opinion was that I would be a candidate for the program but I am too healthy at this point for it. 

For the longest time, we were told that the cath had to be done at UPMC and not by LPCH. Even though we had explained that a cath was dangerous for me because of the bronchial spasms I had during the last one as well as the A-Fib that started after the cath because we had irritated my heart. (Not to mention that having PH makes it dangerous to begin with). LPCH has done every cath on me since I was 12 years old and I've had the same anesthesiologist every time. We couldn't understand why UPMC wouldn't let me have the cath at LPCH and just have the results sent over to them. We met with the surgeon who would be doing the transplant himself and he said the cath wouldn't be needed until I was getting closer towards needing the transplant. He also said that he trusted LPCH to do the cath there as long as they got all the pictures that he needed. Not only did I start crying with relief, but so did my dad. There was also talk about needing to coil off my collateral vessels during the cath for the transplant so my risk of bleeding would be lower. Some of the doctors wanted to do that procedure in August but when I talked to the surgeon he said not to coil them off until I needed the transplant. Since the collateral vessels could grow back or I form new ones - it would be pointless to coil them off once just to have to put me in danger to do it again later on. 

Needless to say - the surgeon was the best meeting and it had been the one I was dreading the most. The ACHD doctor (Adult CHD doctor) was by far the most negative when it came to my situation and he had a bit of an attitude when it came to me needing an ACHD doctor closer to home. There is no ACHD doctor in Arizona. And on top of that, with my PH that is secondary to my CHD, I need to have a pediatric cardiologist who specializes in PH. I have that - at LPCH. He kept pushing it though and said: "I understand transition is hard. We don't have bunnies and bright colors on the walls..." That's not the case at all. The paintings on the walls or whether or not the hospital has cute animal posters has nothing to do with my uneasiness and unwillingness to transition to an ACHD doctor and give up my doctors at LPCH. It has to do with what is best for my health and an ACHD doctor is not what is best for me. There are some CHD patients who are not as complex and can make the transition. It would be a life threatening mistake for me to make that transition at this time.

The other doctors were all very nice. I had dreaded going to see the adult heart failure doctor, worried that he would think he could take care of me without needing LPCH. But he was amazing and even told me to keep them. He agreed that they knew me the best and they were closer to me in case there was an emergency. He agreed to fight for me and be the "go-to person" as we call it in Pittsburgh when we need help - but he was more than willing to let LPCH continue to call the shots. Jokingly he said, "As you can see, I have a huge ego." After the meeting he pulled me aside to meet the surgeon quickly and told him, "I just wanted to put a face to the name for you." This was something that my mom has been saying ever since I can remember when it comes to my health. "I want them to have a face to the name. Make you a real person and not just a name on a file." It was so amazing and reassuring to see that this doctor had the same thought process. 

All in all so many people were wonderful and helpful. We left Pittsburgh feeling reassured and relieved. The heart committee will meet on Monday and the lungs on Tuesday, they will discuss whether or not they think the surgery is doable and if I need it yet or not. I will more than likely be deemed too healthy, which is good, and have to come back every few months to get check ups - just to make sure I'm not getting worse. If you could keep me in your thoughts and prayers just a little bit longer - we are hoping that they say yes they can do the surgery but no I don't need it now. 

Thank you all for the love, support and prayers. They mean so much to my family and I. My family and I couldn't have done this without you all. 

Hope and Love,


  1. Hi, I am Edward's mom. I just lost the last 2 posts I typed here. My fault. What is the name of that hospital in Pittsburgh?

  2. What is your FB acc called?


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My Life As A Chronically
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