My mom and dad had been outside on the phone with a nurse practitioner from Lucille Packard, she helps us set up appointments and relays messages between us and my doctors up there. When my parents came back inside and sat down to eat with all of us at the dinner table, I asked them if everything was okay. Mom started to explain how they are trying to work out a time for me to go up and see my doctors. But there was something in her voice, a smell tremble that lets me know she's close to crying or that she heard something she didn't want to hear. So I asked, "Anything else?" That's when life kicked me in the gut.
There is a new transplant surgeon up at Lucille Packard and after reviewing my file, he decided that he did not think he could handle a complicated case like myself. He suggested that I try the adult side, which is Stanford. Since Freshman year of high school I was told that I'd get my transplant at Lucille Packard. I was comfortable with them. I trust them. I know them. And the idea of having to go anywhere else made me break down in cry, right at the dinner table.
It's not just the idea of moving hospitals though that scares me. I've gone to 5 different hospitals within my life time to get different procedures done. I can suck it up and handle change. But the things that popped right into my head after my mom told me this were these things:
- Will the insurance let me go there? We've been able to go to Lucille Packard because we say I need a pediatric cardiologist who specializes in PH. We've also argued the "Continuity of Care" angle, meaning I've been going for a long time, so I should be able to go. But now that one part of my health might be taken care of by an adult doctor, would the insurance try and make me stay here and see their adult doctors, even though they aren't qualified to take care of me?
- If I'm so complicated that even one of the best hospitals for patients like me can't handle me, will Stanford be able to? And if they can't, where do we go after that? And if have to look at a hospital besides Stanford, the insurance question comes up again.
- What if we don't find any surgeons that feel they are good enough to do my transplant? What do we do then?
As I sat there sobbing with my head in my hands, the dinner table grew silent. I have never been at a family dinner where it was completely silent before... and I felt bad that I was cause of that silence. I felt guilty. Like it was my fault that I brought everyone's mood down. I felt guilty that my family has to sit here and suffer with me. The only thing that I could think of that was positive to say was this, "Well at least he had the guts to admit it. Instead of doing the surgery on me and something going wrong." My mom nodded and said that was a good point that she hadn't thought about before.
Conversations started to resume again and dinner went back to normal, or close to it at least, and for the first time in a long time, I was quiet during dinner. I barely touched my food, suddenly not feeling very hungry and when dinner was over, I crawled into my bed and I sobbed. I cried loudly, almost screaming even. Screaming in frustration, in sadness, in fear... and then came the silent tears. The kind of tears that make your whole body shake as you just sit, hugging your knees to your chest.
My dad knocked on my door first and took a seat behind me on my bed, rubbing my shoulders, knowing that always helped to calm me down. He asked if I wanted to go get some frozen yogurt and I couldn't help but laugh a bit. He knows me so well. Mom walked in a little bit after that and sat in front of me, patting my knee and holding my hand. They reminded me that at least I don't need the transplant now. My quality of life is too good to be put on the list at this point, so we have time to find someone who can handle me.
And to be honest, the fact that my health is doing as well as it is now is the only positive thing about this situation I can hold to right now to help reassure myself that it's going to be okay. The moment my health starts to go downhill and the topic of transplant comes up, I'm going to be an even bigger mess than I already am about this whole thing.
That kicked in the gut feeling is still here, even a few days after the news came. What's nice about having a large family is that someone is almost always over to help keep me distracted. But at night, that's when I lie awake, worried that this new doctor won't be able to handle me, or that the insurance is going to become an even bigger problem. At night, that's when I cry.
I want to thank you guys for all the love and support, and I'm sorry that this post isn't the uplifting and happy-go-lucky ones you're used to. I just needed to share this. I needed to get it all out. And I wanted other people to know who might be going through similar situations, you're not alone. It's scary. It's hard. It sucks. But we can do it. At times it might feel like we can't or that we don't want to. But we'll get through it.
Hope and Love,