clinic yesterday--shocker

[AHands]

bipap

Hi, Adrian ... From what I understand, both the feeding tube and the trach will improve your quality of life a great deal.

Thanks! i'm hoping breathing gets easier after trach. breathing badly is disturbing.

I am hassling with my insurance company about getting on BiPap so I can have the tube implanted soon. My fvc is 49%.

What!?! why is there any hassle? i think it should be pretty much automatic with fvc < 50%

i got mine at 60% due to slight sleep apnea. insurance: cigna. i wish i'd gotten it sooner.

tell them that you snore loud and have headaches when you wake up--everybody i've ever known to go to sleep study has gotten diagnosed'ed apnea and put on cpap or opted for surgery.

 

[AHands]

FVC got better?!?

I had my peg in 12/10 and my FVC was 43. ... My FVC sitting is 69, on my back 43.

FVC got better?!?

 

[AHands]

...Getting a PEG, then a Tracheostomy and Vent has given me my life back! They don't keep from doing anything, as a matter of fact I can do things now I could not do before getting them! God Bless!

Thanks Joel!

Did you get trache and vent at the same time? I think they want to get me on trache asap, but not vent (yet).

when you're on vent, do you no longer need bipap?

 

[AHands]

trache? or trache+vent?

Someone does have to be within hearing distance of the alarms. If the hose pops off...

that would be with vent, right? i think they just intend to put me on trache and peg for now.

 

[joelc]

I got my PEG in July 2007 and my tracheostomy July 2008. The trache and vent replaces the bipap and it is so much more convenient! I can't understand why they would give you a trache and either not use it or have you use a bipap. This does not make any sense to me. A bipap is not designed to work with a trache.
If your breathing is good enough for you not to need to use a vent then I would not be getting a trache. Once you have a trache you need 24/7 monitoring as secretions do not always get past the tube and you will need suctioning.

 

[sharonca]

To explain my FVC numbers...

I had a test at my ALS clinic sitting up. My FVC was 69. I requested a test on my back (since I knew it would be worse). My FVC tested laying on my back is 43. This was in last Nov 08. Testing at UCLA in June was 73 sitting up and 54 on my back.

Since most surgery - even outpatient is done while you are laying down - this is a concern. You might not be able to breathe well enough to have the surgery. I know JoelC had his peg input while sitting up. Don't think my doctor offered that option.

Sharonca

 

[mndireland]

Question about trach?

My mum's last fvc in October 08 was 28%, we were never offered peg, she can still eat, choking sometimes and we are on soft foods all of the time, with a thickener for drinks, but i think she was too far gone to be offered the peg, a little frustrating but we are gone past that now so need to move on.
In Oct they told us she was at the end stage of the disease and only had days to live, thankfully my mum has been home the last 2 months and even Christmas went well, thank God. The doctor did mention to my mum that if her breathing got bad and they had to act quick would she consider being on a full time ventilator, they said that this would mean a trachoctomy (excuse the spelling) operation, then she would have to remain in hospital for the rest of her life, in a bed, attached to a ventilator. She obviously said no way, she can still walk little bits, talk and eat, so she doesnt believe she is anywhere near the end of life. We all know that she would not want her life to end like that anyway!
My question mainly is, I thought if she had these things done she would be completely bed ridden and hospitalised? How come some of the threads are saying they can do some much with trach and vent? Have I got something wrong?

My mums breathing is really bad, and I would imagine now she is early 20's or late teens on her fvc. She is in good form and actually got annoyed with the docs for telling her kids that she was about to die! She told her she is not near death and how dare she scare her kids like that, it was quite funny actually! I think at this point they dont want to do anything more for her, as her breathing is soo bad.

 

[joelc]

I get very upset when doctors tell you these lies. They do this in order to talk you out of getting a tracheostomy and vent. There is no way you have to be bed ridden or remain in the hospital. Don't let them convince you otherwise. I got my tracheostomy and was home 1 week later, it does mean you have to have people trained in trache and vent care prior to going home. We put all this in place before I got my trache so they could not stop me from going home. I am pretty much incapacitated but I can go anywhere in my powerchair. We get out a lot and go shopping and visit friends, beeing on a vent has not prevented me from having a full and rich life! We are going to go on another cruise too. I would insist that the doctor give her a tracheostomy and then a PEG can be done. At her stage I would get both of them at the same time. Her quality of life will improve significantly!

 

[AHands]

permanent hospitalization

...then she would have to remain in hospital for the rest of her life...

everything i've read says permanent hospitalization if and only if there is no one at home who can provide the necessary assistance (suctioning, responding to the vent alarm, ...?)

 

[Cincinnati]

My husband got his peg and trach in January, 08. He did not want the c-pap and sometimes even questioned why he needed the trach. The trach helped with suctioning when he became to weak and the diaphram got weaker to get the secretions out. He was still eating and drinking when he got the peg. He was having troubles with coughing and breathing when we took him to the emergency room, so the trach and peg was discussed in the emergency room. He had to think about it for a day before he agreed to the procedures. He had a passy muir valve so that he still could talk with the trach. The peg tube helped with giving him his medications. I feel that we extended his life by 4 months when he decided to have this done.

 

[mndireland]

Thank you everybody for your reply and advise, I might just get onto the association and see if they can help in anyway. I would be there most days, I only work for 6hours now 3 times a week, but we can work around that. I cant believe they put it soo bleakly, it was like you can have this operation but basically your life would not be worth living! I need to talk to some more doctors etc.

Thanks again, as usual you have more answers than the docs!

 

[AHands]

diaphragm pacer

What was that thing Augie Nieto had placed around his diaphragh ? It helped him a bunch when he was lying down.

would that be a diaphragm pacer?

i inquired about diaphragm pacing and was told that my clinic neuro had been involved to some degree on diaphragm pacer research, but when i spoke directly to the doctor he wasn't bullish on it saying that it was not FDA approved yet. I came away with the perception that he will be bullish on it after approval, but until then...

 

[Tall John]

Didn't realize it was such a controversy

Augie's deal was even written up in the ALSA mag I get every month ? He said it was a huge help to him !

 

[duplinwino]

I'm sorry for this turn of events Adrian. May I be nosy and ask which clinic you attend? PM me if you want.
Ashley

 

[AHands]

a relief!

I checked with the Dr's office, re: Why trach without vent? I must've misunderstood, because he said that he did not recommend tracheostomy yet--just PEG for now!