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Have you had to start over with a new team of doctors?
Question for you guys, but first, story time!
I’ve been going to the Children’s Hospital for most of my life, simply because few doctors are trained in SMA, and I have a wonderful team there. Long story short, an adult clinic opened at a nearby hospital a few years ago, and I’m in the process of being transferred there.
I’ll be honest, this has been a stressful and overwhelming experience. The hospitals have been amazing and are working together to make this transition as seamless as possible. That being said, I feel like I’m losing my safety net. I’m jumping from my comfort zone into the unknown.
A few months ago, I reached out to one of our members, @dennis-turner because I remembered he was from the Boston area. He spoke so highly of the new hospital and doctors that I will be seeing. It really put my nerves at ease.
Long story short, I had my first appointment with my new neurologist on Tuesday. I wasn’t even in the building for 10 seconds when, lo and behold, I bumped into Dennis! It was so amazing getting to meet one of our members “in the wild.” I really enjoyed connecting with Dennis, and I hope I can connect with more of you in the future.
Now time for my question. Have any of you made this type of transition before, where you start over with an entirely new team of doctors?
I would love to hear your experiences with this, if any, and learn more about the ins and outs of what I need to know. While I am stressed and overwhelmed, there is also a part of me that looks forward to being seen by adult doctors and gaining a new perspective on care.
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