Bipap and peg placement

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Danijela

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PALS
Diagnosis
11/2008
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UK
State
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Bolton
Laurence has been using Bipap overnight for about two months now and has adjusted well. His CO2 and O2 levels were checked yesterday and were fine, so no change in settings. Our respiratory clinic seems to stop at that - no FVC testing for bipap users.

Peg placement has been discussed but there is a waiting list. We are now looking at July/August. This slightly worries me as I am thinking of dwindling FVC numbers. We were told that PEG will be done under controlled conditions where respiratory team will be present, O2 and Co2 monitored and that L would be sedated (but awake) and would be wearing his bipap, lying flat for about 20 mins.

If anybody had a PEG placed while wearing bipap (nasal pillows) I would like to hear of their experiences.
 
My husband had his peg placed after he started the BiPap, but he was already a CPap user. I don't think that really had as much to do with it as his FVC level. It was around 65%. That was the important point. You don't want FVC to be under 50% is my understanding. That can (but does not always) cause issues. Sounds like they are going to have a full pulmonary team in place - we did not. I would push for the earliest date possible. The entire procedure, getting on the table to awake in recovery, took less than 20 minutes in an outpatient facility.
 
Danijela, so glad to hear L's CO2 levels and O2 levels were good on testing. Take heart!
Just so you don't think youre on your own on the FVC front, know that there is no FVC testing here either for bipap users.
Nor any ongoing testing of CO2 or O2 levels.

Skip this next bit to avoid my mini rant- Mum had her FVC taken in Nov 2009 on diagnosis as a 'baseline'. It was then 43% and described to me as normal (!) It has never since been repeated by consultants/hospital. Hospice tried to but she is bulbar onset so a lip seal is impossible. The respiratory team haven't done any CO2 or O2 tests on follow up either, just telling us that we leave it to you guys to tell us when the settings need changing. Nonsense really since mum can't communicate and I am not a respiratory specialist. On the up side they consider it highly unusual for her to be compliant with bi-pap given the dementia dimension and think it would be counter productive to change settings anyway. - rant over.

On the PEG procedure mum had it done twice. Feb 2010 & July 2010. Presumably her FVC was lower given the timeline - but I have no way of knowing for sure. They didn't use any extra breathing assistance. It was fine. Hopelessly unscientific compared to our American cousins experience I know.

If I were in your shoes and was nervous about the length of time, I would see if it was possible to take a cancellation or get bumped up the list in any way. Going private a possibility at all? Is L worried or content to wait? My mum wasn't content to wait, but we couldn't find another way round it. In the end our wait was only 2 months.

Hope you get some helpful responses from folks who had pegs placed while on bipap.
 
I had a peg put in Monday and have been using a bibap since June of 2010. My breathing is about 50% sitting up and 20% laying down. It was decided that this needed to be done asap. I did have my respiratory person in there with me and was not to nervous. They did put me under for about 20 minutes. Good luck.
 
I had PEG done with FVC at 36%. I had no problems. I was out for about 20 minutes. Good luck.
 
Thanks all. We are waiting to hear about the date, Laurence is not too concerned. We have a spirometer at home and can check his FVC. It is the same one they use at the clinic.

Avril, I think it is really a poor practice that they are not checking your mum's Co2 and 02 levels. I would insist.

Dani
 
hope it all goes well and maybe gets a cancellation so its sooner rather than later xxx Ang
 
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