two months

It has been two months since I got my tracheotomy, and along with the changes to our lifestyle, there is a lot to think about. If you had asked me ten years ago if I would consider being on life support my answer would have been a very definate NO. Five years ago I would have been unsure. As I needed the Bipap more and more I started leaning towards Yes. Here I am today happy that I made the choice I did.

A great many conversations had set the stage for this decision. During the quarterly ALS clinics we always met with the lung doctor, Dr. Libby, and as my ability to breath without the Bipap decreased the question asked was did I want a tracheotomy. He was good at laying out the possible problems and the life style changes for both Dave and myself, not to be discouraging but rather to educate us. There are several things to consider. Often the surgery and recovery time will speed up the muscle loss. The need for 24 hour care is huge and something that could be a huge burden even with my long term care insurance. Another thing that has to be considered is that I will die of something other than ALS. One of my concerns was could I decide to turn off the vent when I was no longer able to go out and about. I was assured that it is not an issue to refuse or discontinue medical intervention.

After all these discussions it was much easier to make the series of decisions that led to the trach. First decision was do they take out the inflamed gall bladder or just make me comfortable and let nature take its course? That was an easy yes, there were too many unfinished things. Even the warning that I could very easily end up with a trach did not deter me. One of the really good things was Dr. Libby had hospital duty that week so he could talk with us knowing our feeling. He could be blunt in telling us the high probability that I would end up with a trach and on a ventilator.

I guess the question now is would I do it again. The answer is yes. As I said above this issue had been completely explored and thought out. As long as I could continue to be in my chair and go out and cause trouble I wanted a trach. That remains. Part of the mental image of someone on life support in lying in a hospital bed, hooked up to various machines and non-responive. That is not for me. I can be hooked up to a machine and still go to the same places. Part of the reason we are comfortable with a machine helping me breath is long use of Bipap. Technically I have been on life support since I needed Bipap 24/7. One difference now is that we take a suction machine everywhere I go to keep my lungs clear.

Another issue to consider is financial burden. We each have long term care insurance and mine covers the bulk of the expense. Once everything settled down Dave became comfortable handling nights. Then came the question of how much time we wanted outside care and how much we were comfortable spending. Without the insurance it would be much harder on Dave and a greater financial hit.

Even though there have been some rough nights I am happy I did it. Most of the time Dave is too, now that I usually sleep all night. We have 3 excellent caregivers regularly here each week so now the focus turns to Dave. We need to give him some time away. He had been going to see his Dad about every six weeks but that is an area of responsibility and not a break. Talking with our caregivers about their schedules we now know almost any night could be covered. He wants to go to his 50th class reunion in June, but he also needs at least a short break prior to that.

Rather a long winded post but there have been many things to think about. Now I am ready for some fun.