Remember that time I tried to blog for a week straight and failed miserably? It wasn't totally my fault, I ended up finishing out feeding tube awareness week at CHOP due to an out of place tube, how ironic. On the brightside Valentines day in the hospital is now something I can check off my bucket list along with Halloween and my birthday.
I haven't talked much about my attempted transition to adult care. So far I have cardio and a GP and I am not getting very far with the rest. My peds GI had mentioned to me that usually they transition patients at the end of their first year of college but I had been really sick and was still pretty sick so I did not have to transition quite yet. She did want me to see an adult GI at Temple Hospital because he was the top doctor in the country for gastroparesis and might have options not available in pediatrics, and possibly at some point I could transition. He had one non FDA approved medication I tried and failed and then he wanted me to do an experiment surgery with only a 50% success rate. He seem to use the same course of treatment for all his patients and I didn't like the success rate so I passed. Once it was clear he was only going to offer me surgical options I was done, plus there were a couple issues with his office and Temple Hospital.
Then since my GI was going to be out on maternity leave she thought I should try to transition then. Of course I couldn't get an appointment with the GI recommended to me until the day before my next appointment with her after her maternity leave was over. Well both those appointments were this week. The adult GI wants scrap everything and start from scratch (I mean everything to the point he is redoing genetic test because DNA clearly changes *eye roll*). I am not super thrilled about it to say the least. I also did not like that he did not seem to want to listen to everything I had to say. He would not even let me wait until the next day when I was getting an IV infusion to get my labs drawn. I did like a few things, unlike the doctor at Temple this one looked at the whole picture. He is concerned because my ANA results were high (ANA is a marker of autoimmunity). This plus my past autoimmune issues plus all my other issues he thinks points to a bigger autoimmune connective tissue disease. He also is pretty sure I have raynaud's which has been brought up before but not in a while.
The next day I went to my peds GI and reported what the adult GI had to say. She also agreed it was unnecessary to reorder some of the test he ordered. We agreed I should keep seeing him for a second opinion because he had some new ideas but said I could continue to see her in peds until I graduated college, giving me a little over 2 more years. She agreed I should make a rheumatologist appointment (there goes my year between visits). She also wants me to see a Dysautonomia specialist in NYC for an actual diagnosis since it does not look like I am getting one from the cardio I am currently seeing. This is an important issue because during my hospitalization last week the messed up my POTS medication (florinef, a steroid by the way) and my fluids resulting in me feeling really horrible and fainting twice this week. With an actual diagnosis my fluids would have been taken more seriously with the residents hopefully.
So now I wait for the blood test the adult GI ordered to see if there is more proof of a bigger autoimmune issue and I see my rheumatologist is a month (cause that is the soonest appointment I could get but at least my bloodwork will be back by then for sure).
I haven't talked much about my attempted transition to adult care. So far I have cardio and a GP and I am not getting very far with the rest. My peds GI had mentioned to me that usually they transition patients at the end of their first year of college but I had been really sick and was still pretty sick so I did not have to transition quite yet. She did want me to see an adult GI at Temple Hospital because he was the top doctor in the country for gastroparesis and might have options not available in pediatrics, and possibly at some point I could transition. He had one non FDA approved medication I tried and failed and then he wanted me to do an experiment surgery with only a 50% success rate. He seem to use the same course of treatment for all his patients and I didn't like the success rate so I passed. Once it was clear he was only going to offer me surgical options I was done, plus there were a couple issues with his office and Temple Hospital.
Then since my GI was going to be out on maternity leave she thought I should try to transition then. Of course I couldn't get an appointment with the GI recommended to me until the day before my next appointment with her after her maternity leave was over. Well both those appointments were this week. The adult GI wants scrap everything and start from scratch (I mean everything to the point he is redoing genetic test because DNA clearly changes *eye roll*). I am not super thrilled about it to say the least. I also did not like that he did not seem to want to listen to everything I had to say. He would not even let me wait until the next day when I was getting an IV infusion to get my labs drawn. I did like a few things, unlike the doctor at Temple this one looked at the whole picture. He is concerned because my ANA results were high (ANA is a marker of autoimmunity). This plus my past autoimmune issues plus all my other issues he thinks points to a bigger autoimmune connective tissue disease. He also is pretty sure I have raynaud's which has been brought up before but not in a while.
The next day I went to my peds GI and reported what the adult GI had to say. She also agreed it was unnecessary to reorder some of the test he ordered. We agreed I should keep seeing him for a second opinion because he had some new ideas but said I could continue to see her in peds until I graduated college, giving me a little over 2 more years. She agreed I should make a rheumatologist appointment (there goes my year between visits). She also wants me to see a Dysautonomia specialist in NYC for an actual diagnosis since it does not look like I am getting one from the cardio I am currently seeing. This is an important issue because during my hospitalization last week the messed up my POTS medication (florinef, a steroid by the way) and my fluids resulting in me feeling really horrible and fainting twice this week. With an actual diagnosis my fluids would have been taken more seriously with the residents hopefully.
So now I wait for the blood test the adult GI ordered to see if there is more proof of a bigger autoimmune issue and I see my rheumatologist is a month (cause that is the soonest appointment I could get but at least my bloodwork will be back by then for sure).
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