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jeff_089

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14
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Diagnosis
10/2007
Country
CA
State
bc
City
burnaby
We went to the ALS clinic today and was told that it was getting close to the time that my dad has to choose whether or not to go on the trache ventilation and feeding tube. He is very confused about the situation and does not know whether or not to go on the trache.

In my opinion, I want my dad to go on the trache and feeding tube because it could prolong his life. What he wants to know from others is whether or not it is worthwhile. Would being on the trache effectively keep him alive until he decides to go off it? At what breathing % would it be too late to get the surgeries? After on the trache would speech be completely gone?

Any input/opinions would be greatly appreciated especially from those who have gone through the surgeries for the above equipment.

Thanks,

Jeff
 

joelc

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I encourage him to get both. Life is so much better with them.
You can live indefinitely with a trache/vent and feeding tube.
Getting them does not prevent a person from speaking or eating. I always recommend getting them before they become an emergency.
Get a PEG before his FVC gets lower than 40% and get a trache at about 30%. This way the recovery period is minimal.

Since you live in my area I encourage you to read of my experiences in our website and come and visit us to actually see what life is like with both. Click on my name and select my home page.
 

jeff_089

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Joined
Jul 8, 2008
Messages
14
Reason
Loved one DX
Diagnosis
10/2007
Country
CA
State
bc
City
burnaby
Thanks very much for the quick reply. I think my dad's breathing is 30%. How long does it usually take to recover from the surgeries. Is it hard to maintain the machine?

I will visit the website ASAP as well.

Thanks
 

joelc

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PALS
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The PEG surgery took 5 minutes and there was no recovery. The trache was, from start to being awake was about half an hour and the recovery was about 1 day.

It is very easy to look after and you live in an excellent area for support to do it. I have lots of information about how to do it in BC.

Again, please consider visiting us so we can share what we know and how we did it.
 

jeff_089

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Joined
Jul 8, 2008
Messages
14
Reason
Loved one DX
Diagnosis
10/2007
Country
CA
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bc
City
burnaby
Hi Joel,

My family would love to come by. If tomorrow is not too short of a notice we could come by at your convenience anytime.

Thanks again,

Jeff
 

siobhan

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Country
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Hi jeff
I would advise getting a trachy, my husband was diagnosed in March 2008 and given 3 months to live bulbar palsy with respiratory difficulties. He managed with a trachy, continuous oxygen, NIPPY ventilator and a naso gastric tube for feeds and medicines until he passed away on 25th October 2009
 

COlisa

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Joined
Feb 21, 2006
Messages
120
Sorry if these are blunt questions, but I am just needing to understand the progression process. If a PALS can live indefinitely with PEG tube & trach then do PALS who have a trach & a PEG, die of something else? Or do the nerves to the muscles that control digestion and the heart muscle eventually give out too?

My husband is banking on the idea that with a trach plus the PEG he already has, he can stay alive and eventually (10, 20, 30 years down the road) benefit from that cure that is bound to come along.

Can anyone clarify for me?

Thanks!
Lisa
 

pepsiman

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Lisa,
I've wondered the same thing. I know personally of two patients who barely got a year after getting a trach. I don't know though what exactly eventually caused their deaths. I would be interested to find out, but I suspect, like a lot of other things with ALS, it appears to be a matter of just plain luck. Obviously it was a good move for Joel. It would be nice to be able to look at a medical chart and be able to tell if it was likely to significantly extend life or not. It's the one thing I've struggled with since before Liz passed. I don't think I'll ever be comfortable with the fact that she "decided not to decide". In some ways I feel guilty for that and I'm sure I always will.
Dick
 

rvfull

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Joined
May 10, 2010
Messages
1
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Loved one DX
Diagnosis
05/2010
Country
US
State
Maryland
City
Finksburg
Will do anything you say. I am just starting out with this process .
 

LauraW

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Joined
Sep 27, 2008
Messages
419
Reason
CALS
Diagnosis
09/2008
Country
US
State
New York
City
Fishkill
Pneumonia is one thing that you have to be really careful in preventing. Otherwise, it is the best thing Mom could have done. She has fhad her tube for 2 years now. We do regular food that I liquify in the vitamix or magic bullet. Her vent care is very stable. There were some issues in the beginning but it has ben over a year now. She has gained weight and gets around quite well with her whel chair. We have the vent on the back of it and away we go. I am so grateful to have her and very happy that she decided to do these two things.
 

chriss

Active member
Joined
Apr 30, 2010
Messages
77
Diagnosis
01/2009
Country
AU
State
victoria
City
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It makes me sad reading these posts because after reading Joelcs blog I asked the neurologist about the possibility of a trache and he said that he would not do a trache and that no dr in Australia would do a trache and that it was too expensive to look after a person with a trache. He talked about people who get locked in and cannot even open their eyes. So I think the inference is that the quality of life becomes so poor that it is better not to prolong life, but surely that was our decision to make? Don't know if we would have chosen a trache or if it would have been possible for my husband (his resp was very low at this point)but would at least have appreciated feeling like we owned the decision to stay with bipap rather than that's just the way it is. I think it is too late now anyway...

Sorry but just wanted the get that off my chest
 

Phil M

Senior member
Joined
Dec 28, 2008
Messages
599
Reason
PALS
Diagnosis
5/2008
Country
US
State
Ga
City
Snellville
I know Chris, The US is heading in that direction..Its such a tough call.
 

joelc

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2,786
Reason
PALS
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Country
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I am so sorry Chris, that is horrible in my opinion! It should be your decision and it does not have to be prohibitively expensive.
I don't know what to say! My quality of life is good and I would have been dead 2 years ago without one.

They should not be able to refuse you. They also don't know what quantity-of-life you can have with one as they have not experienced life with one. This really upsets me. My heart goes out to you!
 

chriss

Active member
Joined
Apr 30, 2010
Messages
77
Diagnosis
01/2009
Country
AU
State
victoria
City
greenvale
Thankyou for your kind words both of you. I am so grateful I found this site so that I can read posts and communicate with people who understand. Even with the support of friends and family this disease can be really isolating as others just don't get it always.
 

LauraW

Distinguished member
Joined
Sep 27, 2008
Messages
419
Reason
CALS
Diagnosis
09/2008
Country
US
State
New York
City
Fishkill
The nurses and doctors at the hospital and at the nursing home were not supportive when they found out that we were taking Mom home with her vent. They said that we couldn't do it at home and tried to convince us that she would be better off in the nursing home. Wish I had a picture of her in the nursing home.....I have one in my mind and it is so far from where she is now. She would not have survived long there. When those same people from the hospital see us (when she has her trache changed) they are amazed. I had numerous arguments with the nutritionist at the nursing home who said "you cannot make your own food and feed it through the peg." I have and I do and Mom is so much better. So sorry Chris...makes me VERY angry too!
 
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