Status
Not open for further replies.

Bob1985

New member
Joined
Apr 26, 2016
Messages
3
Reason
PALS
Diagnosis
05/2005
Country
US
State
Florida
City
Coral Springs
Hi, I am new to the forum but not to MND. I have had MND since I was 21 years old, however my disease was an UMN only disease, unfortunately in the last 4 years it turned into UMN/LMN ALS. I had a very weird onset as it was respiratory onset from the beginning. The first two years I used regular pressure driven Bipap, and than I was switched to Trilogy for last 6 or so years on non invasive Bipap mode with nasal pillows. My FVC for the last 6 or so years has been at 20% or less but I was managed excellently and did not have bulbar problems so no need for invasive mechanical ventilation. Currently, I still do not have bulbar problems, however, I am getting mucous plugs, and my pulmonologist wants me to get a trache and I am willing as I am very young and fortunately have the financial resources. I do not want to die at only 30 years of age, but I will admit I am very scared of getting a trache as I have never had any kind of surgery in my life. My question is how long can a Pals make it with a Trache, does it depend on weakness, as I am as weak as paper, or does it depend on having excellent trache care? I have just a two year old daughter and even if it gives me an extra year I would be grateful to God. My daughter has no mother as she died tragically a year or so ago. I have confronted my disease head on from a very young age but I am at a point in which I need support as I am very scared and nervous about what is to come. Thanks for understanding.-Bob
 
Last edited:
Welcome to the forum Bob.

I can't contribute much toward answering your question. I have had some pretty frank discussions with my pulmonologist about whether or not to get a trach, but have not been faced with the reality of getting one just yet.

Others here will be able to provide some help. In particular, Diane H. will probably chime in. I encourage you to take a look at some of her posts. I think you will find them encouraging.

Steve
 
Sorry to be so slow in responding, Bob. I couldn't find your post until I switched to v2 of the forum software!

Anyway, I started a reply today but finally decided to just direct you to my website after answering a couple basic questions. Barring other complications, a trach, vent, and feeding tube as soon as swallowing problem begin will let you live a long time. For me it has been twelve years vented and I am glad I did it. But it is possible to live longer than you want to because your ALS will progress regardless of those things. Even total paralysis won't keep the ventilator from breathing for you. You will probably be still able to communicate in some way when the time comes when you are ready stop the vent and be allowed to die with medications for sedation and comfort, but it is really important that you get a living will to state under what conditions you would want that to happen. Medical power of attorney would also allow your MPOA to speak for you if, and only if, you could no longer communicate in any way.

Good trach care means good suctioning technique to prevent lung infections, so yes that is a necessity. Your caregivers, whether nurses or not, can be quickly trained to do it. If you can talk and swallow now, the trach won't significantly interfere with that. The progression of your ALS will eventually though. With a 2 year old daughter who needs you more than most and with your slow progression, I believe that a trach and vent upgrade from BiPAP will give you much more time to be an actively involved dad.

Diane
ALS From Both Sides
 
Status
Not open for further replies.
Back
Top