My Opinion on Traches for A.L.S.

I have been on trach ventilation for 11+ years and have not regretted it for one moment nor have I known anyone who has regretted it with the exception of a very few who had complications like infections or from other unrelated health issues and died because of the problems. My question for those of you leaning toward not getting a trach is why are you selling your life so short? You still have much to contribute and you can have a fulfilling and happy life on trach ventilation.

If anyone is substantially on bi-pap you are essentially the same as trach ventilation because you are attached and dependent on a machine to breathe and live. The only difference is with a trach you breathe back to a normal level which returns your energy, appetite, zest for life and other things return to the levels they were before being diagnosed with A.L.S. Now don't get me wrong the first 6 months, give or take, are difficult as you heal from the surgery but if you are able to speak and or eat before the surgery there is no reason you cannot after. They will probably say that you have to have a balloon style, non-fenestrated trach to prevent aspiration which can make speaking and eating more problematic. However, many PALS including myself still have done excellent without this extra level of protection. Is life easy being basically a quadriplegic on a ventilator? NO but it can be done where you normalize your life and have a very fulfilling and happy one. I still sleep in a normal, king size bed with my wife and each day she moves me to my leather Lazy-boy where I am bathed, eat, play with the kids, watch television and mainly work on my computer. We have actually expanded our family from one daughter to three daughters (ages 14, 7 & 4) SINCE I have been on trach ventilation. I have gone to games, parks, trips to weddings etc. in my wheelchair since being on trach ventilation. At 42, I am even entering my third year of graduate school at the University of Michigan-Dearborn (I live in Missouri) where I am pursuing a M.B.A. and a Masters in Finance. It is becoming increasingly easier to live an independent life as technology advances. I fully expect within a few years that I will be much more independent with the combination of brain implants and robotics which is currently being tested with chimps.

I can directly attest to the ignorance of the medical community about trach care, cost and most especially on the issue of quality of life which it's criminal what people are told by doctors on this last area. In my case, they told me that: our home would become a mini hospital WRONG; I would need 24/7 nursing care WRONG (my wife is my only caregiver); I would have to use a hospital bed WRONG (still sleeping in a normal bed with my wife); I would HAVE TO have a feeding tube within a month WRONG (after 11+ years I don't have one and I am still eating a fairly normal diet with some minor exceptions. This may not be typical but neither am I alone in discovering that much of the issues with eating has to do with the breathing issue); my wife would not be able to move me by herself WRONG (she does it easily with a hoyer and a head support sling); I would be confined to bed or at the very least to my home WRONG and WRONG (with a power wheelchair I have gone about anywhere); and the biggest that I would have to be in a nursing home within three months and dead within a year ABSOLUTELY WRONG!!! I could go on and on about this but I am too busy having a FANTASTIC life. Is it difficult YES, do I wish my wife had more assistance ABSOLUTELY and would I like better equipment SURE but I have not regretted my decision for one moment. My advice to most PALS especially those who are younger and have children still at home is to give a trach a try for 6 months to a year and if you don't like it get off of it then because you will be just as dead. I don't understand the whole respect the not venting decision because the decision is always made with at best incomplete information and in most cases inaccurate information and it's usually done when the person is weakened from the breathing issues and the continuous change caused by the disease to that point. Amazingly we allow people who are toward the end of their life when they are the equivalent to someone who is drunk to make a life and death decision when they would be arrested for driving or not be legally bound to a contract they signed. How many times in your life have you thought you wouldn't like something and even resisted it only to find out it was not nearly as bad as you imagined and in some cases like food you cannot believe what you have been missing. Be well and happy!

Your friend in the fight,

Jeff Lester (ragingbear)

Age 42, married w/ 3 daughters (all born AFTER diagnosis)

Diagnosed 10/'93 and on trach ventilation since 12/'97

3rd year graduate student at the University of Michigan-Dearborn

Live in Lebanon, Missouri

You too can have a happy & fulfilling life by learning to LIVE with ALS!!!

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