Decision about tracheostomy

[texastc]

She decided 22 years ago that she didn't want to know, genetic testing. I know how long because it was right about the time our daughter was born. Said she didn't want to always be worrying if this was it or this...She knew there was the chance.

You can still swallow things with the trach. I'm sure you have a suction device already...if not, thats what we used before the trach, and in conjuction with the catheter to suction the trach. I actually rigged up a second suction device, that stayed in the living room near her tv watching perch. I moved another suction device from the bedroom to the living room in the daytime so that I could have a mouth sucker, yanker, on one machine and the catheter on a different machine. You need both. If not two machines, the suction one then the other...each had to be done each time usually.

tc

 

[Alex123]

I do not mean to be blunt, but DON'T. So many annoying infections and caregiving. I hope I do not sound harsh as it seems to be an impossible situation. You do not need a $30 and hour nurse for the vent. You can find someone for under $10/hr in many cases. The vent is actually the least aggravating thing we deal with here. We are at nearly 2 years of bedridden ventilation with no quality of life at all.

Thanks Gil for your advice and sorry you and your family has been going through this ordeal. As in California they have approved the law that allows for assisted suicide, I am contemplating that option too.

 

[Alex123]

She decided 22 years ago that she didn't want to know, genetic testing. I know how long because it was right about the time our daughter was born. Said she didn't want to always be worrying if this was it or this...She knew there was the chance.

You can still swallow things with the trach. I'm sure you have a suction device already...if not, thats what we used before the trach, and in conjuction with the catheter to suction the trach. I actually rigged up a second suction device, that stayed in the living room near her tv watching perch. I moved another suction device from the bedroom to the living room in the daytime so that I could have a mouth sucker, yanker, on one machine and the catheter on a different machine. You need both. If not two machines, the suction one then the other...each had to be done each time usually.

tc

Thanks again tc for all the time you have taken in answering my questions. Your information is very useful. With respect to the suction device, I do have one but when I tried it didn't seem to work. It may have something to do with the tip, because the one that I used at the hospital when I got my PEG worked fine.

 

[Alex123]

Both of your pals are lucky to have u guys.... not being able to communicate is tough, i was not able to communicate for nine months; till a few months ago, when i got this device... i wish i could help Gil, maybe ask a church for volunteers to help? thank you guys for your honesty.. sorry u have to go through this..... as a pals, for me, everything is appreciated. a sip of coffee, rubbing my skin, itching my ear are moments of paradise now.. . i am like a stray puppy, that likes a little coffee

Pat, are you on a trach or considering one? I am sorry if you already explained that.
Alex

 

[patoyeah]

Pat, are you on a trach or considering one? I am sorry if you already explained that.
Alex

I am starting to research it... been trying to keep up with the progression this year. playing from behind for almost a year, not well prepared. catching up now.

i will research for a bit.. i am fully paralyzed, so a trache / vent would not effect that much... and the vent can be shut down, if one chooses.

i have to guess a little, what will be best for my family and friends, and myself... have to see what happens with our money this year, finances may play a considerable part in me thoughts.

my issues with mucus are minor compared to yours and many others, yet it is the most difficult part of als for me.

is anything helping your mucus? the suction machine works for me, we try to go back as far as possible.

stupid mucus,

pat

 

[GilWest]

Thanks Gil for your advice and sorry you and your family has been going through this ordeal. As in California they have approved the law that allows for assisted suicide, I am contemplating that option too.

I know that there are two sides to this decision, but I am speaking from my experience. It has not been pleasant. I feel that a vent just keeps the person alive inside a failing body and just destroys loved ones along the way. My personal opinion is that it devastatingly prolongs the inevitable. I feel for you. You might have a better experience than we did. I would recommend a peg, though. Mom was literally turning into a bag of bones in from of our eyes before hers.

 

[patoyeah]

Gil, if there is a way to communicate a little, maybe she could be asked if she wants to continue? if i can not communicate, thats enough for me.

 

[patoyeah]

How u doing Alex?

I got a feeding tube June 14th. All of my saliva issues have been reduced since.

hope you are ok,

pat

 

[Alex123]

Pat,
I am still struggling. My arms and hands are getting weaker. I had a peg tube installed about one year ago and there was no change in secretions. Are you more decided about the tracheostomy?

 

[Alex123]

I know that there are two sides to this decision, but I am speaking from my experience. It has not been pleasant. I feel that a vent just keeps the person alive inside a failing body and just destroys loved ones along the way. My personal opinion is that it devastatingly prolongs the inevitable. I feel for you. You might have a better experience than we did. I would recommend a peg, though. Mom was literally turning into a bag of bones in from of our eyes before hers.

I agree with you. With respect to the peg, as I told Pat, I do have it.

 

[patoyeah]

Pat,
I am still struggling. My arms and hands are getting weaker. I had a peg tube installed about one year ago and there was no change in secretions. Are you more decided about the tracheostomy?

I may not need to face that decision. If i understand correctly, if secretions can be managed, a trache may not be required.

i need to dig deeper on this, but i think a pals can survive for decades with non-invasive ventilation, even at 0% FVC. i think the determining factor is secretions / swallowing.

I am not completely sure about this. I will be involved with other stuff for a couple months. Will not have much time to research.

I think that most Pulmonologist may not be aware of this, thus may complicate this issue. I think a Pulmo in Nj, Dr. John Bach, may promote NIV, even at 0% FVC, depending on secretions?

I wont get to this planning for a bit. Factors will be, ability to get some help (caregiver), $, and whats best for all concerned.

I am fine checking out, after i prepare those around me. I am fine staying also... have a project i would like to finish, might take 6 months... its in flux

Ultimately its whats best for those around me. The vent can be shut down as well, let hospice help with that, and the Mods here.

Afternoon,

pat

 

[shepherdnurse]

Thank you for your forum posting. Tracheostomy is a very hard procedure, but people can live a good long life after that procedure. I knew someone who had that procedure done and she had a hole in the lower part of her neck. She had trouble speaking to me at first, but she went to physical voice therapy with a voice teacher and she could talk better. She had to watch her diet some in the beginning, but she worked with a nutritionist who helped her and everything was OK and great. The best news that I can tell you is that people can live a healthy and normal life with this.

 

[Nikki J]

There is a great difference between the experience of a person who has a trach for something like a tumor or even a trach and a vent for COPD and someone who has a trach and a vent for ALS. The trach does not stop the disease process and the the PALS will become paralyzed. Do PALS with trachs live longer? Many do and some, especially younger PALS are happy with the choice but saying you can have a healthy and normal life once you get a trach in the context of ALS betrays a complete nonunderstanding of what ALS is and does.

 

[patoyeah]

http://publications.chestnet.org/pdfAccess.ashx?url=/data/Journals/CHEST/22018/1502.pdf

 

[patoyeah]

https://www.nice.org.uk/guidance/cg...sease-noninvasive-ventilation-full-guideline2