A Good Update

It's been a few weeks since I've last posted and I wanted to apologize for that. Halloween came, so I was busy with that and then Thanksgiving had me busy as well. But with all of the crazy busy schedule I've had comes some great news! 
About a week before Halloween I went to Lucille Packard Children's Hospital for a check up. I was worried that I was getting worse, because HUP gave me the impression that within the 3 years it would take to get me and organ I would be declining. I kept thinking, "Well if it takes 3 years to get an organ and they want me on the list now - that must mean they think in 3 years I'll be really sick." So when they told me no, I thought that meant I only had 3 or so years left. 

But after talking to the doctors at LPCH, I was reassured. Dr. Feinstein explained to me that based off of my numbers I look terrible on paper. But those numbers on that paper have been stable for a few years now. So while my numbers aren't getting better and they are scary - they aren't getting worse at least. 

I had taken this past semester off, thinking I'd be moving to Philadelphia - and because of that, I haven't been walking 4 times a week around campus like I usually had. I started to notice a decline in what I was able to do around the house. Walking from the barn at the back of our yard back up to the backdoor was tiring me out more and more easily. I talked to the doctors and they explained that this could be because I had de-conditioned myself. I wasn't doing as much activity as I normal had, and the answer to that was to become more active. So I try to walk down the alley every other day with my nephew. At first I couldn't walk even half the alley without getting tired, but now I'm able to walk the whole alley without a problem. We stop at the end to feed the horses and I catch my breath before we turn back around and walk all the way back once more, without a problem. 

So I am feeling a lot better than I was before, however, I will need my pacemaker battery replaced in February. They will be doing local anesthesia which means I'll be awake although won't feel anything. They are debating on putting in a new lead, since the old one is draining my battery faster than we'd like. We wouldn't remove the old one, since that can damage the heart - we would just de-activate it and put in a new one right next to it. This isn't till February or so though, so we have some time to decide which would be the best choice. 

I'm still debating on if I want to go back to school this upcoming semester. If I do, I know I need to find a college that is close by and has a small campus. But I also want to take some courses just for fun and do things I've always wanted to do. I'd love to take horseback riding lessons, I've wanted to do that ever since I can remember. I'm also going to be training once more with Not MY Kid to do speeches again for them. I love learning and I've always enjoyed school. But I'm also not sure if I'm ready to go back just yet. Whatever I choose though, I will keep you all updated. 

Thanks for all the love and support, I appreciate it more than I could ever show. 


  1. It's great to hear from you again!
    And I'm glad this update was a happy one.
    Sending you a hug from Italy <3


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My Life As A Chronically
Ill Young Adult
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