Life With ALS.com

+    Diagnosed Aug 2005

+     Bipap March 2007

+     PEG July 2007

+     Trache and Vent July 2008

Still Living, Loving & Laughing

My journey to deciding to get a tracheostomy.

 

This was a very rough road to making this decision as every contact I had was telling me not to do it. Here is what I was continually told:

 

-  That I don’t want to do it as there is no quality of life.

-  That it would be impossible to go home, I would have to remain in a care facility.

-  That there is no way my wife could look after me. It is too complex and highly

    stressful - only trained professionals are capable of doing it.

-  That I would permanently be bed bound.

-  That I could no longer eat or talk.

-  Etc etc etc.

 

Do any of those things sound familiar? They are all untrue!

 

I was first told they did not do tracheostomy’s anymore.

 

Let me backtrack a bit ........you need to understand that I was completely mobile at this time.  ALS started in my hands and then started affecting my diaphragm so my breathing was getting bad. I was completely mobile! So this was a major concern. I was not ready to die yet, I am not sure how much different it would have been if I was already in a wheelchair and had little mobility, but this was not the case.

 

Back to my story:

 

After being told they did not do tracheostomy’s anymore I went home and did some research and found out they still do, just not in our area. With this new information I was then told I would have to be bed bound and remain in a care facility.

More research revealed this was not true as well.

This was the time I first called the ALS Association and started asking a lot of questions and they were extremely helpful and put me in touch with a provincial agency call PROP (Provincial Respiratory Outreach Program). This is a whole other story about how I got a bipap machine.

 

The PROP people actually drove to our house and we had a talk about Bipaps, and traches and vents. I was also told that I could still eat and talk after getting a trache. If you could eat and talk before getting a trache there was no reason you can’t after. I found out there were over 400 trache patients living at home and in the interior of BC. Huge surprise! This totally contradicted what I previously been told. At this point we made a decision to move closer to Vancouver where there was support. There was obviously no support in our area. (We were living 450 miles from Vancouver)

 

I need to add one more thing here, I was still struggling with the decision to vent. All I was hearing were horror stories of peoples experiences getting them done and spending months in the hospital. I was still thinking I would not do it. I did not want to burden my family with this. But my wife and family were encouraging me to do it.

 

The deciding factor was when I thought - what if it was my wife instead of me who had ALS? I knew I would make her do everything possible to stay alive. I would make her get a trache and vent and anything else that would increase her life. I could not imagine life without her. She told me that she feels the same about me so I had to change my mind and agree to do it.

 

I did more research and determined that it was minor surgery and I could not, any longer, believe what I was being told about the problems everyone was having. This did not stand up to the research. I determined one of the reasons was that people were waiting too long and ending up in ER with all kinds of death-bed problems like pneumonia. Since they were on their death bed when they finally decided to get a trache their road to recovery was long and hard.

 

The thought of being able to breathe without struggling was sounding very appealing.

 

Since I was not going to loose my mental capabilities I was starting to think differently about it. Our children are all grown up, married and have children of their own. I can still be an influence in their lives and share my council and wisdom with them. I have always been involved with technology so was not afraid of endorsing it to keep me alive. Thankfully we live in a time where we have technological devices that can make our lives very easy and enjoyable.

 

With this realization I talked to a pulmonary doctor about getting it done early. We had to convince a panel that we knew what we were doing. Once that was done we set a date.

 

I went into the hospital thinking it was going to be easy and it ended up being even easier than I thought. A total walk in the park!

 

My best advice is to do it early, before you find yourself in the ER. This way you are healthy enough for a quick recovery.

 

You can read about my experience here.

 

Let me also add that my wife was a bit nervous about looking after my when I got home. She now laughs when she thinks back. It takes a couple of weeks to get into a routine but once you do it is easy to look after someone with a trache. Actually very easy.

 

Read here to know what to have in place before getting your trache.

 

I no longer have to struggle to breathe and I have much more energy because I am not expending my energy just to breathe. We go out much more and do things that were impossible with a bipap.

Having a vent opened up my world again. Also, looking after someone with a vent is not a big deal, granted it does take a bit of time to get used to it and get into a routine but once you do it is very easy.

God Bless!

 

I just have to add this last thought.

 

YES, I actively promote the idea of going on the vent. The technology available today makes the old way of thinking about life on a vent obsolete. The chance of becoming "locked in" is almost negligible and you can always choose to unplug the vent.

Going on a vent will give you your normal lifespan back to you! The difference between being totally paralyzed and totally paralyzed on a vent is very small. If all pALS opted to vent, our numbers would grow exponentially and government and pharma would be forced to reckon with us.

Most doctors discourage the use of a vent out of ignorance. Since they can't imagine living on a vent, they can't conceive of anyone wanting to do it. It's not that we "want" to do it, but death is our very real option. I will choose life over death every time. If you're religious and look forward to being in heaven, rest assured it will always be there; no need to rush it.

And finally, I have NEVER met a vented pALS who regretted their decision.

 

Added: Oct 2009

Updated: Oct 22, 2010