An Actual Health Update

Once upon a time this was a blog I updated on my health multiple times a week. I now realize since the whole NJ tube thing I have not given an actual update on my health. A lot has happened in the last few months to say the least. I think the best way to go about this would be to go by specialist:

Rheumatology- As I mentioned a few post ago at my last appointment with my rheumatologist my joints were doing amazingly and I don't have to go back for a year. As of now I am only on celebrex for my joints, which I was really hoping to get off of but since sulfasalazine clogged my tube that went instead. The last week or two my left SI joint has been a bit stiff and sore but I am hoping tylenol will be enough for it.

GI- In September I saw a GI at Temple Hospital who is supposed to be the top doc for gastroparesis. He put me on domperidone, which is not FDA approved and did not help. The only thing he had left for me was an experimental surgery with a 50-60% success rate so I am taking a pass. I was largely unimpressed with him and his office so I am not seeing him any more. I also had a more permanent feeding tube put into my stomach called a GJ tube (yeah I had surgery and forgot to put that on the blog). In February I am seeing both and adult GI at UPenn and my GI at CHOP, although I do not think much will change.
There is now a hole in my stomach!

Cardio- As my fainting episodes have continued to get worse we keep playing around with medications. I am currently on a steroid called  florinef, although thankfully it does not have all the same side effects as prednisone. However it is not enough to get my BP up and my heart rate down. My cardiologist wanted me to start epogen injections but my insurance wouldn't improve it so we are trying to get up weekly IV fluid treatment. I also have the official diagnosis of Dysautonomia.

Cardiology appointments require button down shirts.
GP- Okay, so this isn't a specialist but whatever. I just wanted to mention I really like my new GP in Philadelphia. He is at UPenn which is where my cardio is too so that makes life easier. He wants to see me every 6 months because I am medically complex. I like that he gets that and is very reachable by email.

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