Life With ALS.com

+    Diagnosed Aug 2005

+     Bipap March 2007

+     PEG July 2007

+     Trache and Vent July 2008

Still Living, Loving & Laughing

THE VENT LIFE
Who Says You're Out of the Game?

To too many uninformed observers, the vent life is a contradiction in terms -- how can you have a decent life when you're plugged into the local utility? Life doesn't end after mechanical ventilation -  a vent is just a machine, not an enemy. My life is significantly better now, with a vent, than it was before.

 

The biggest problem we face is the outrageous cost of equipment and care. In the United States it is much different than it is in Canada. We are extremely fortunate where I live, in British Columbia, as the equipment is provided by a fantastic organization called PROP (Provincial Respiratory Outreach Program). They also provide training and supplies. They have a 24/7 hot line if something arises.

 

As I understand it, some States in the USA require skilled nursing 24/7 at nightmare cost. This is not true where I live and we have found it easy to train family and friends in the care required. It is actually very simple, anyone can be quickly trained.

Consequently, most vent users in the US, must rely on Medicare, Medicaid and entitlements.

 

Can you learn to love your Vent?

 

Yes, I certainly do, it gave me my life back  - I no longer have to struggle to breathe. It is an unbelievable improvement over a Bipap. There is absolutely no comparison. Thankfully ALS is not a disease unto sickness. We are generally healthy so we can enjoy our life if we choose to have the right attitude about it.

 

The Quality of Life Issue

 

Quality of Life should be defined by us, who are living that life, not someone else. Not anybody else!

 

Is a reasonable quality of life possible on a ventilator?  Many doctors and health care professionals will tell you “no”. But I want to tell you they are wrong! You can have a great life and everyone I know on a vent does. Don’t let anyone tell you differently. It is your choice and you can have a very enjoyable life. I have children and grandchildren I can enjoy and influence. Life is good!

 

The effects of the vent on my health - oxygen levels that prevent headaches and give me energy, stamina, appetite, and pink cheeks - are equaled by improvements in my quality of life. My days are no longer dominated by shortness of breath, tiredness, and fear of the next episode of lung congestion.

 

My world has re-expanded along with my lungs. The BiPAP was fine for relieving nighttime breathing problems, but as my daytime use of it increased, my world shrank. Even if the BiPAP machine had fit on my wheelchair, the mask and headgear were too bizarre-looking for me to want to go out. As a result I seldom went outside, much less left home.

 

Now, with the vent, I go out and do what I could not do while relying on a bipap. We go to the zoo with our grandchildren and go shopping with our children. It is fun blasting around places like Home Depot and watching everyone fight to keep up to me.

People talk about the horror of being "tied to a machine" when they talk about vents, but they've got it all wrong. I was  already tied to another machine, my wheelchair, and like the wheelchair, the vent has only increased my freedom, not tied me down.

 

How does it feel to be on a vent?  It doesn’t! I am as unaware of my breathing as anyone else. No feeling of air being forced on me, no arguments with the vent over the rate and depth of my breathing. I just breathe! It took less than a day to get used to it and start to love my vent.

 

There is a lot of talk about the burden this puts on your spouse, family and friends. I want to submit to you that if you love someone it is NOT a burden, it is a PRIVILEGE.

 

Going through life without the one you love is much worse.

 

A meaningful life is not a given thing but something that you create