Reality is much different

When they first brought up the issue of getting a trach, I obviously had many concerns. One of the reasons why I had always been so adamant about not getting a trach was that I felt it would severely decrease my quality of life. I thought trached meant being vent-dependent in which I 'd be tied to tubes in a hospital with no real life. I'd just be existing, and to me, that was the equivalent to hell. I didn't want to exist. In my opinion, that wasn't a life. It certainly wasn't a quality of life. Yet, there I was sitting in the hospital on bi-pap 24/7. I was essentially tied to the machine. I could only go as far as the tube would allow. I was able to go to the bathroom, but that was about it. I couldn't be discharged in that condition, thus I was hospital-bound. This wasn't a quality of life. This was not how I wanted to live. Here I was existing and my greatest fear was being realized.

When I told the doctors that I would consider the idea of a trach, I considered that the life I was currently living without a trach was what I feared life would be. My doctors explained that they felt that this was my only option of having any type of quality of life. They did not know if a trach would help. A trach hadn't been used n this type of circumstances before, but they felt it was the best chance at a normal life. Many people live with trachs and live active, normal lives, they said. They go to work/school/whatever. They go shopping and live happy productive lives. Immediately after surgery I wouldn't be able to talk, but they'd give me a speaking valve and as soon as I was able to use the speaking valve, I'd be able to talk just as I had before the trach. Now I wasn't so naive to believe that things would be problem-free. I knew it wouldn't be a walk in the park, but there was the hope that I would have a good quality of life. My life would be at least as good as it had been before the trach, probably better. I'd breathe better, and thus be able to do more. I'd be able to do the things I loved.

While I appreciate the encouragement. I wish I had gotten a more realistic picture of how life with a trach would be. Part of it is that people don't understand. If they haven't had a trach and thus haven't experienced life with a trach, they can't truly understand. Even people who only have temporary trachs don't fully get it. That's because, yes, they are trached, but not for long. They may have the trach for a short time, either after an injury and the trach comes out when they recover., or people waiting for transplant and have it only until they get the transplant. It's much different when your trach is permanent and you will most likely have it for the rest of your life.

Learning to live with a trach is a process. It isn't as they said, you have surgery, you put on the valve, and voila you can talk again, just as you had before. They said that with the trach, I'd just go back to doing all the things I had done before the trach. The reality is that once you get a trach, you have to relearn everything. You have to relearned how to breathe. Breathing out of your neck is much different than your nose or mouth. When I first woke up from surgery, I panicked. I didn't know where I was. I was in extreme pain, and breathing was different. I kept trying to breathe out of my nose or mouth and couldn't get air in that way. It was weird to realize that now I would be breathing out of my neck. It was very strange to be able to breathe with my mouth and nose closed. You learn to breathe at rest and when standing or walking.

You have to relearn how to eat and drink. Chewing and swallowing is different. In normal people, the vocal chords help with eating and drinking. When you swallow the epiglottis closes to prevent food going into the lungs and prevents aspiration. It opens the esophagus so food can go down to you stomach. When you have a trach, this is different. There is no longer the flap that prevents food from going into the lungs. You have to learn how to swallow without having it go into your lungs. This can be a challenge.

Showering can be one of the most difficult things. My first shower, I nearly drowned myself. Of course I didn't sit facing the spray because then I was sure to get water in the trach. I didn't realize how careful you have to be, especially with washing your hair. If you wash you hair normally as you did before the trach, you get water in the trach. It seeps in under the trach collar and into the stoma and thus into your lungs. It takes special care to learn how to shower.

Talking is certainly not as they said. It isn't like you get the trach, pop on the passy-muir valve, and ta-da, back to talking like you did before. Talking for the most part comes completely naturally without effort to most people. We don't remember learning how to talk or a time when we couldn't talk. When I first woke up, I couldn't speak at all. Then they realized that the trach was too big to use the valve with. For two weeks between when I got the initial trach and the trach was downsized, I was unable to speak at all. Writing became my only method of communication. After the third trach surgery, I began to be able to talk even without any aid such as the pmv. It was amazing to hear my voice, but speaking took a lot of effort and was exhausting. I could only say 1-2 words. At first, I wasn't able to tolerate the pmv. Finally, about seven weeks since the trach was put in, I can use the pmv and my voice is clearer. However, in no way is my ability to speak like it was before the trach. Speaking is a conscious effort. My voice is different, and speaking takes a lot of effort.

Not only do I wish that I had had more information and a more realistic picture of what life with a trach is like and what to expect, I wish I had had more time to mourn the loss of my life. No one prepared me for the extreme coughing and what to do with the mucous plugs, or what to do when the trach gets clogged. I wish they'd told me about coughing up blood and trach care. I look back and I know my life will never be the same. My life will always be - before the trach, and - after the trach. I mourn the loss of my old life. I desperately miss being able to swim and go in water. But, I try to think about what I have gained. I am alive...

A Choice

People have asked me, if I made the right choice. They ask, if I had to do it over again, would I still choose the trach. To answer if I would do this again, would I still choose the trach, I don't know... I would hate to say no, because to say no is to accept death. And this is exactly what I was told. Had I refused the trach, they weren't sure exactly how much time I'd have, but any time I would have would be limited. However, if this is life with a trach, I'm not sure I want it. You can't just go by length of life, but by quality. Am I or will I be able to do the things I want to do? During the time from the initial trach and going to rehab, I wished I hadn't done this, that instead I had accepted death and gone on. I was basically confined to my room because I needed to be there to be on humidified o2. I couldn't really go anywhere or do much of anything. It was torture. That was not how I wanted to live my life. But now, being in rehab and learning how to "live" with a trach, live being the key word, I don't know. I think things have more of a possibility of returning to life.

When people ask me about my "choice", I get angry. This wasn't really a choice per se. A choice is choosing hot dogs versus hamburgers, choosing to go to the beach instead of the mountains, choosing a necklace over earrings. Before, I never considered a trach. Trachs have always been a no-no for me. We all have things that we are willing to tolerate in regards to medical procedures, and there are things that we say "no way." A trach has been that for me. I knew that some day I'd be forced to consider getting a trach, but it has always been a "no." I didn't want a trach. I didn't want to live like that. To me it symbolized the beginning of the end. I felt it would change my quality of life and I didn't want that. So long as I could think and do all the things I do now, then it was ok; however, the moment that I became compromised and had to have a tube to breathe, I didn't want it. We are all going to die some day. There is a point at which we have to accept that and stop fighting it. I didn't want to be alive just to be alive. I wanted to have a life. I wasn't and am not afraid of dying.

Back in March, the pulmonologist suggested a tracheostomy to help me breathe. I was adamantly against it. No way, no how. I would not even consider it. When he mentioned it, I said no. He tried to open discussion with me, but I adamantly refused, telling him I'd rather die first. The second time was similar to the first, except I didn't even give him the courtesy of saying no. I just changed the topic. Wouldn't discuss it at all. This time, it wasn't just the pulmonologist, but also his PA. The reason I actually began to consider considering it, at least I let her begin talking to me about it, was my circumstances had changed. I was on bi-pap and having to wear it 24/7. Though they had attempted to wean me off of it, they had had no success. I was only able to come off to go to the bathroom. So I was able to move only as far as the bi-pap tubing would allow. I knew I couldn't go home on 24/7 bi-pap. The mask itself was causing the skin around it on my face to be irritated and start to disintegrate. I knew that I couldn't stay in the hospital indefinitely, nor would I want to. I knew that they were right and that if I wanted to live, I would have to get a trach. I could refuse to let them do it, but to do so would mean that I was willing to die, and I wasn't ready to die. So although it went against all I had believed in before, and though I had always said the one thing I'd never do was get a trach, I knew that really it was my only option. It wasn't a choice in terms of choose this or that. It was agree to allow them to do this procedure in hopes of prolonging my life and giving me a quality of life versus accepting death. So did I make the right "choice", well in terms of did I choose to live versus the other option, which is dying. No, this is not easy. It isn't exactly the way they said it would be, but I am alive. I will be able to go home and hopefully I can pretty much return to my life. No, I wouldn't have chosen this if there had been any other option, but had there been any other option, my pulmonologist wouldn't have suggested it. They don't just put trachs in people who don't absolutely need them. Even with the trach, they were leery because they didn't know if it would work or help. There had been no precedent for a patient in my situation receiving a trach. I do know that this was their last chance at giving me somewhat of a life. So to answer, "did I make the right choice". Yes, I chose life, and that is the right choice for me for now.