Waiting on Philadelphia

A few weeks ago we got the good news that a hospital in Philadelphia has agreed to evaluate me for a heart-lung transplant there and see if they think they would be able to transplant me when the time comes. However we haven't really heard from them for a few weeks now since the first time they called to talk to me about it. At first we were told that the hospital was in-network with my insurance but now we are being told they still have to work things out with the insurance. My doctors up in California gave the contact person up in Philadelphia my parents cell phone number as well as the home phone, telling them that if they don't reach us via the home number they should call one of their cells. Well about a week ago my mom scrolled through the voicemail of our home phone and found that they had left a message but instead of trying the cell phone numbers, they just called the home number and that was it. 

To be honest, I'm not sure how I feel about trusting my health with a hospital that has lost my files and doesn't get back to us when we try to call or contact them. We had planned on waiting to go see the doctors up in California till after we visit Philadelphia but at this rate, my mom is starting to think we should go for a check up to California sooner rather than later. Plus on top of that, my sister also has an appointment with the doctors there and we don't want to keep putting that off either. 
I think what is so frustrating to me is the wait. I feel so good lately but there is still a part of me that is nervous and anxious to get answers about whether or not I am in need of a transplant. I trust how my body feels and its a good sign that I do feel good - but that doesn't stop me from worrying and being anxious about what they will say. There is also that worry that they say no and won't accept me into their program? All of these months wasted waiting for a 'no' answer when we could've been spending this time looking for another center that will accept me. 

The only upside to having to wait is that it gives me even more time to let me body heal and for me to get back to my baseline that I was at the beginning of this year. With a transplant center so far away, if I were to get listed (depending on what level) I may have to move there so I would be close to the center. Honestly, I don't think I'm at that point, but you never know. Having to move out to Philadelphia would be hard on my family and would be something that I would hate to do. Which is why, part of me doesn't mind not getting a doctor appoint but the other part of me just wants to get it done and over with. 

While I'm waiting though, I've decided that I'm going to enjoy feeling as well as I am. Which is why on Tuesday I will be headed out to California for Spring Break with some friends from school. My dad will be putting up with all us girls during our trip to Disney Land which I promise to post lots of photos of!

Hope and Love
Becca 

1 comments:

  1. Hey Becca!
    My name is Jennifer and I'm a writer/author (J.L. Berg)
    I stumbled across your blog in my research of CHD for my upcoming novel and I was wondering if I could ask you some questions regarding your experiences growing up.
    I promise I'm legit, lol - you can look me up on any social media website or Amazon/BN etc.
    This is a standalone I'm starting and my heroine is a CHD sufferer and I want to make sure I represent the community accurately and also bring light to the condition. My first novel revolved around cancer and I was able to raise awareness and also money to the cause...I'm hoping to do the same with this one.
    You can reach me at author@jlberg.com
    If you don't feel comfortable, or have too much on your plate - no hard feelings.
    I wish you the best of luck and you're in my thoughts and prayers!
    Jenn

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My Life As A Chronically
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