Rhonda Kim
Member
- Joined
- Jul 10, 2008
- Messages
- 19
- Reason
- CALS
- Diagnosis
- 07/2008
- Country
- US
- State
- Ohio
- City
- Cincinnati
Hi Everyone,
My husband Joe is going to the Dr on tuesday for a consult for a peg. He really needs the peg. When he was first Dx they said he should make up his mind before he reaches 50% on his FVC test. That has a long time come and gone. He said flat out no peg. Now he is having such a hard time eating with out choking and then he can't breath at all. (Joe has the Bulbar Form) It is scaring the Hell out of him. I just can't imagine. I sit with him and wait. There is nothing I can do to help.
Any way, the Nuro Dr called and reasured me not to worry she has seen people much weaker than Joe get a peg. And they wouldn't have to put him on a vent in order to put in the peg. I know She told me and his lung Dr told me it was important to get the peg while his breathing was still at 50% so he wouldn't have a hard time coming off the vent after the surgery. They made it clear that it was a big issue to decide about weather you were going to use a vent or go plative care. Now I don't get it will they use a vent during surgery or not or is it a lets get start and will see kind of thing. I am not looking forward to being put in a situation that it becomes my choice and not Joe's.
Joe wears his Bipap 22 to 23 hours a day. He thinks even if they vent him he will be able to come off of it. I pray he is right. We both know he is close to the end of the road he is on. I guess we just have not been able to decide which fork he will go down when he gets to it.
Thanks for listening. I really just want to know about how they do the surgery.
Rhonda Kim
My husband Joe is going to the Dr on tuesday for a consult for a peg. He really needs the peg. When he was first Dx they said he should make up his mind before he reaches 50% on his FVC test. That has a long time come and gone. He said flat out no peg. Now he is having such a hard time eating with out choking and then he can't breath at all. (Joe has the Bulbar Form) It is scaring the Hell out of him. I just can't imagine. I sit with him and wait. There is nothing I can do to help.
Any way, the Nuro Dr called and reasured me not to worry she has seen people much weaker than Joe get a peg. And they wouldn't have to put him on a vent in order to put in the peg. I know She told me and his lung Dr told me it was important to get the peg while his breathing was still at 50% so he wouldn't have a hard time coming off the vent after the surgery. They made it clear that it was a big issue to decide about weather you were going to use a vent or go plative care. Now I don't get it will they use a vent during surgery or not or is it a lets get start and will see kind of thing. I am not looking forward to being put in a situation that it becomes my choice and not Joe's.
Joe wears his Bipap 22 to 23 hours a day. He thinks even if they vent him he will be able to come off of it. I pray he is right. We both know he is close to the end of the road he is on. I guess we just have not been able to decide which fork he will go down when he gets to it.
Thanks for listening. I really just want to know about how they do the surgery.
Rhonda Kim