Bypass bipap, straight to trach?

[halfin]

Saw the local pulmonologist today. My breathing is still OK, FVC at 83%. But that's down from 90% a couple months ago. He was pretty cheerful and we talked about the longer term. He said he would support whatever we wanted, and we said we were planning on a trach when the time comes.

He said in that case he would recommend skipping the bipap and going straight to a trach, when needed. He said that would really be easier than trying to deal with a mask all the time. He said that with a trach I would have every reason to expect to be his patient for many more years.

That last part sounded good but I was a little alarmed by the prospect of getting a trach in maybe a year or so (just guessing). Seems like it will be a big change in my life. I guess if I were to the point of needing full time bipap, that would be inconvenient too.

 

[brooksea]

I would think that would depend on other issues, Hal. My husband is about where you are with FVC and he has had a BiPap for over a year now. He got it when he had pneumonia (measurements weren't good so the doc qualified him).

You are an athlete. My husband was an athlete and has found the BiPap gives him energy for the next day, even though "technically" he doesn't need it.

The mask is a pain and he really doesn't like it, but he does like the energy when he awakens. He doesn't always wear it and pulls it off during the middle of the night a lot of times, but he really thinks it is worth using.

The trach and vent may be long down the road for you. Like I said, depends on the other issues you are having.

 

[sadiemae]

Hal, have you looked into the Diaphragm Pacer. There is not a lot of info out there, but if it is to be found, you are the guy to do it. Christopher Reeves had one, and was able to go off his vent when he turned it on. I am unsure whether it has been approved by the FDA for ALS yet, but know it is being done. It has been used for SCI mainly. I do know one of the places where they did the trials was at the Forbes Norris ALS center at University of Cal in San Fran. We will be going there for clinic Aug 9, and I am going to find out more. Jay(Ratman55) was looking into it too. Our Doc basically said that it can put off having to trach for a few yrs. Do some research, and please let me know what you find out. FVC needs to be 60. Our doc also said doing a trach before you need it to be hooked to a vent all the time is what he would like to do with us when FVC gets lower than 45. HUGS Lori My PALS is at 68 now. So for us, we need it done fast. Medicare doesn't cover it, and the VA is not doing it yet. My Neuro said that University of San Fran is.

 

[Erica]

Hal, Lorie,
I had my pulmo appt this AM, my FVC is dropping. I'm 10% down in 2mo. I'm not planning for trach, but will be looking into diaphragm pacemaker. I was told by one of the forum members about a hospital in Atlanta where they had it done. At time when they had it done it was "non covered" procedure. I'll pm him today to get all details and contact info.
Erica.

 

[joelc]

Hal, as one who has had both I can honestly tell you the Bipap is a bigger nuisance than a trache. I agree with your doctor from an experiencial standpoint. I really don't understand why people are so afraid of a trache and vent. It is unfounded fear.

 

[Phil M]

I don't have one, but I think it will help with future choking. Sometimes I cough up stuff that hangs up in a spot where I can't get it cleared in either direction, and I can't breath until I get it cleared. Its scary, and aggravating! But I don't know how uncomfortable the trache is.

 

[Erica]

Phil, What about the Cough Assist? I though that it should be helping to get secritions up, so you can spit it out or get with the suction.

 

[joelc]

I don't have one, but I think it will help with future choking. Sometimes I cough up stuff that hangs up in a spot where I can't get it cleared in either direction, and I can't breath until I get it cleared. Its scary, and aggravating! But I don't know how uncomfortable the trache is.

You don't even know you have one. That is how comfortable it is.