DeansWife
Distinguished member
- Joined
- Oct 18, 2011
- Messages
- 197
- Diagnosis
- 08/2011
- Country
- US
- State
- AL
- City
- Fairhope
Dean has finally decided to get the Peg. That news was several weeks ago. We met with the gastro doc and he explained the procedure then I explained that Dean has ALS and extra precaution was needed when they gave him the twilight etc. because of the swallowing/choking issues. He response was, "I do this all the time, it's a easy process and he's not going to be put under". I said that I wanted a lung capacity test done before the surgery and he again said, "well, I don't think it's necessary but it's your choice. I do this proceedure several times a week". Well, thanks doc for giving me permission! On to the pulmonologist - had the test last week and because he could not get his lips to seal on the tube it was inconclusive. The nurse called yesterday and we are scheduled for a PFT (partial) this morning using a mask. I asked her if they see many ALS patients and her response was "well, not really". Wow! I guess I'll now have to take on the roll of teaching these doctors about ALS. Believe me, I will! Oh yes, I called his neurologist about the comments the gastro doc made and they have consulted with him. The neuro's nurse called me back and said that she received the consultation back and the gastro signed off. She said it explained Dean's condition so that he would understand this isn't a common case of Peg. I'm just so baffled at how little knowledge these doctors really have. Hopefully after the PFT today, we can proceed and get the surgery scheduled without fear that Dean will encounter problems during the proceedure and after.
I'm ready to move to Montgomery so we can begin his treatments at the VA Medical Center - at least they know what ALS is!
Thanks for listening, kinda venting. A word to the wise - ask questions and insist on answers. You or your loved ones lives may depend on it! I'm learning - slowly :grin:
I'm ready to move to Montgomery so we can begin his treatments at the VA Medical Center - at least they know what ALS is!
Thanks for listening, kinda venting. A word to the wise - ask questions and insist on answers. You or your loved ones lives may depend on it! I'm learning - slowly :grin: