Let’s Talk…

     Today marks 4 weeks since I had the procedure to place a tracheostomy tube. Boy, has it been quite the adventure. Let’s talk about it. 

I made it just over five years before having this procedure. Many people choose to forgo getting a trache for different reasons. Care requirements increase significantly. Procedure is demanding. The feeling of being a burden. Fear of dependence on machines to sustain life. Quality of life concerns. While I don’t agree with all of the arguments , I do believe they are all valid. I weighed all of my concerns heavily and carefully. I have had five years to consider it and this is what I chose. 

I don’t regret my decision at all , but I do wish that I would have known more prior to having the surgery. And that is the biggest problem. There is this air of stigma surrounding the trache. Some people talk about it , but there is still this feeling of taboo about it. So many are scared of it based often on the opinions of those who don’t have one.. Understandable , but the need for first person experience is lacking and sorely needed. 

The truth , from my perspective , is that it is well beyond anything one can prepare for. You can gather all the information you can get your hands on , but nothing compares to the physical and emotional experience you will go through. I am not going to lie, it has been the hardest challenge I have faced. 

I will say that if you are considering getting a trache, do it on your time. Don’t wait for an emergency when it will be a life or death decision. It will help you be a more emotionally prepared. Make your wishes for the future very clear. For many who choose the trache, there may come a time when you will be physically “locked in “, unable to even move your eyes to operate a communication device. In my case , my wife knows that if I start getting to to that point , it is time for me to go. 

The procedure itself is fairly routine and is very quick. Prep time is far longer than the procedure. The recover and adapting to this new way of breathing takes some time. Though , if you have been using the ventilator non invasively for some time , I feel that the transition is easier in that you are used to the rhythm of the vent. 

Coughing and secretions. There is a lot ! The beginning is the worst. Over time this subsides as your body gets used to it. But in the meantime , this can be a source of stress and anxiety. Every little movement is the source of a coughing fit. With a feeling of breathlessness and even panic. This is where a good anxiety medication comes in. I highly suggest speaking with your medical team about this well ahead of time. 

I have much more to discuss , but will continue in a subsequent blog entry… to be continued. 

This Post Has One Comment

  1. John Kenney

    Hi Gill! (I thought I responded with a Big Thank You!) but maybe not here—lost in cyberspace?). So.. THANK YOU!! For sharing your experience pre and post trache. I don’t know if I will opt for a trache but need to educate myself as much as possible. I need to tap the wisdom, experience and strength of you, Jeremy and others on this (obviously!) critical matter. Scares the bejeezus out of me. Although ALS hit almost two years ago I was kind of a poster child for the slogan “70 is the new 50!” (Fitness instructor, marathon runner, parkour practitioner, etc). Now due to atrophy/muscle wasting etc (Thanks ALS) I’m more like ‘70 is the new 90!). 😮. So very eager to engage in the conversation. THANK YOU for your bravery and sharing your vulnerability as well amigo!!! Jay

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