To Trach or Not to Trach
That is the question. Whether tis nobler... Despite that Shakespearean introduction, this is a serious topic that many of us will have to face if we have not already.
Depending on your point of view, you can easily find many of us and medical professionals to argue both sides of whether people with SMA should be trached. Many of us will never face this decision.
Others of us have had to have one for the majority of our lives. For those in the middle that do not have one but will probably face this decision at some point, what should we do?
The decision to get a trach is personal
Unfortunately, there is no one answer to this question that will fit every situation. This is a decision that many times is a personal one.
Many of us were given a trach in a medical emergency and have been able to remove it to lead healthy lives. Some argue to remove them unless absolutely medically necessary.
I know many people with SMA who say they never want a trach. If that is their honest and informed decision, I have no reason to argue with them. It is their life and health, let them live it.
The benefits of a trach from my perspective
With that understanding, I did want to present a more pro-trach point of view. I will not be counseling you to rush out and get a trach just because you have SMA.
I am just arguing it does have its benefits. So, if you are forced to get one, it is not the end of the world.
I have lived with a trach for eight years now. I received it due to a medical emergency. Prior to that emergency, I was adamantly anti-trach. Even two years after receiving it, I dreamt of not needing one anymore.
However, my feelings have shifted over time. I see the benefits.
Prior to the trach, I would need assistance coughing congestion up, often in the spring with what my family called May-itis. I would often get some sort of cold due to allergies and not being able to cough effectively.
I would also be hard to understand, as I had a very wet voice. After the trach, I am able to suction even the slightest congestion to get it out.
I feel it has helped me stay healthy as I am able to get my congestion out much more easily and quickly. If my voice is very wet, I will also suction my mouth and trach if needed, which helps people understand me better.
Tips to keep in mind
If you are nervous about possibly getting a trach, all I am saying is that it is not the end of the world. It may end up helping you. But you need to make that decision.
If you do end up with one, try to keep the stoma (that hole in your neck) as clean as possible.
And who knows with medicine advancing as it is, maybe one day we will all be able to put this argument aside as trachs will be a thing of the past.
Have you met our advocate team yet?