Would I Recommend A Tracheostomy??

As someone living with ALS for nearly nine years, I know the challenges of living with this disease are all too real. From the progressive weakening of your muscles to the loss of independence and control over your body, it's a difficult journey.

The most commonly asked question I receive is if I would recommend a tracheostomy to someone living with ALS. But, my desire to spend more time with my family and loved ones is stronger than ever and obfuscates my sentiment.

ALS is a journey few are willing to prolong since only 10% of people living with ALS will proceed with a tracheostomy.

I'm the type of person who doesn't give up easily and is willing to try anything once, and the idea of a tracheostomy to extend my life is something that I knew I would consider from day one of my ALS journey.

So, the thought of living with a tracheostomy was daunting. It's not just about extending my life. It's also about the quality of life I'll have. The thought of my dependence on others for constant care, suctioning, and cough assistance billions of times a day has been hard to accept.

Likewise, living with the stress, anxiety, and depression that accompanies a tracheostomy should not be taken lightly. The emotional toll of dealing with the loss of friends who chose not to pursue life-extending measures is also a dreadful reality to face.

But, simultaneously, spending more time with my loved ones was incredibly tempting. Knowing that a tracheostomy could provide me with precious, irreplaceable time with my family and friends was a decision that was hard to ignore.

However, it was a decision that I didn't make alone. I consulted with my healthcare team, including my wife, family, neurologist, pulmonologist, and other specialists, to weigh the benefits against the physical, emotional, and social challenges that come with the procedure.

I also understood that pursuing a tracheostomy would be a challenge, not just for me; but for my family, friends, and caregivers. The burden of caregiving would likely fall on my wife, and the strain it puts on our relationship is an existence that's hard to accept.

In today's economy, finding quality caregivers is also a challenge, which only adds to the difficulty of pursuing a tracheostomy. Skilled nursing is not required, but quality caregivers are a necessity. The level of care for someone who has a tracheostomy is 24/7. Caregiver fatigue can decimate you and your care team.

In the end, the decision to pursue a tracheostomy requires careful contemplation. Living with ALS is a formidable voyage, but it's also a pilgrimage that's unique to each individual. The decision to pursue a tracheostomy is personal, and it's inconsequential to recognize that there's no right or wrong choice.

What matters most is that you have the support of your loved ones and the care team to make the best decision for you. It will be the most trying ordeal of your and your loved ones' lives. It is a daily struggle mentally, physically, and emotionally.

I hope this helps those confronting the same decision. #EndALS