Have you ever noticed that everyone has an opinion about everything? This is what you should do; this is what you shouldn't do. This is what you should think, ect. This happens about everything - religion, politics, education, career choices, even medicine - what medicine you should take, what procedures you should have done, which doctors you should see. Granted, the main reason people do this is because they care.
When I had the trach, many people questioned whether this was best decision. It was done proactively rather than reactive. It was planned rather than waiting for an emergency. I remember my mom's initial response when I told her that the doctors wanted me to have a trach "No!!" It was a knee-jerk reaction . She didn't want her daughter trached or on a vent. I don't blame her. As you know, I've always had a "no trach" policy, so it must have come as a shock to her when I was actually considering it. After, people asked me if I had made the right choice. I did; I chose to live rather than die. You soon realize, however, that everyone has an opinion - what they would have done, or would do. In reality, they wouldn't truly know what they would do in the situation until they are actually in that situation. You can make all the plans you want, but reality is much different. One of the things many people said and continue to say is that I should have/should get a second opinion. At the time of the trach, I was in no position to be traveling to Boston for second opinions. I was on bipap continuously, hence the reason they were discussing a trach in the first place. Had I been stable, then yes, a second opinion may have been warranted; however, this wasn't an elective procedure. It wasn't something they did just for the heck of it. They did it because there were no other options. Had there been less invasive options, they would have gone with that. But they had run out of other options, and here I was fighting for my life and losing the battle. A trip to Mass General, just wasn't in the cards. There really wasn't a person to get a second opinion from, unless I wanted to take a chance on getting sicker and not making it. Honestly, even if I got a second opinion, what would it be? Would they say "no trach"? If so, then what would they suggest? Would they have a better plan? Or would they just be like - no trach, but we don't have any other options. This is most likely. We already knew that I couldn't remain on bipap indefinitely. They had tried to ween me, and that didn't work. Most likely, they would have more questions, no answers, and no solutions.
Kathy, my infusion nurse, thinks I should get all my care at Mass General. Though their doctors are supposed to be bigger names and more experience with complex disease, I have never once had a doctor in Boston who had answers and offered solutions. Rather, all I've ever gotten is more questions. "We don't know why this is." "We don't know what is wrong." Since we don't know what is wrong, we don't know what to do. It has always been a frustrating experience. But more than that, how practical is it to have my doctors in Boston. I can no longer drive myself and would have to find someone who could drive me. This entails them taking the day off so that I can see the doctor. If my doctors are in Boston, it will take me 2 1/2 hours to get there. This is not very practical when you're sick. I would have to plan it, and most likely this isn't possible. I can't travel the 2 1/2 hours when I am sick. I can't drive there, and most people can't just stop everything they are doing to drive the distance to get me there. Never mind what happens when I need to come home or if I don't get admitted. If I'm too sick, I'll still end up in the hospital here, and be seen by doctors who don't know me. When you get sick as I do, You go to the closest hospital. I can get sick very quickly. In the morning I could be fine, but a few hours later I am gasping for breath and needing to be intubated. There is no time to drive all the way to Boston. When I first moved home after graduating, I still got all my care at Baystate, which is 45 minutes away. I remember one time I had difficulty breathing and needed to go to the hospital. Mom drove me. I was gasping for breath and mom was trying as best she could to get me there. Finally as we hit Springfield I was too sick to continue and we had to get to the nearest hospital, which was Mercy. I was intubated shortly after getting in the ER. It was a scary experience for both mom and I. Her trying to drive and afraid she was going to have to stop and do CPR. When you crash as quickly as I do, you need to go to whichever hospital is closest to you. It is best if your doctor is on staff there so they are the ones treating you and making the decisions about your care, not someone who doesn't know you. It doesn't really help if you're in the hospital here and they're 2 1/2 hours away. They can consult, but they aren't actually seeing you, and who knows if the doctor actually does what they suggest. Gets to be one big mess.
Since being trached, I haven't done much. There were a slew of doctor's appointments I missed and should reschedule, but haven't. Part of it is because I just don't have the energy to go from one appointment to the next. The other, I just don't care. Even if they do have answers, what good is it if they don't also have solutions. So they give you another diagnosis, but they don't have a treatment, just more questions. Really, what good is that? I'm too tired to play the game. People ask, "did you talk to this or that doctor" "Did you get their opinion." No, I did not talk to that doctor. Personally, I was working on fighting to live and getting through the day. I know that chances are, right now, if I saw another doctor they would suggest pulling the trach. They'd probably feel it was unnecessary and overkill as treatment for the problem at hand. Of course, that is easy to say now that I am stable. They weren't there as I gasped for breath or when I was on bipap. Even if they had been, would they have had a better solution? If I was decannulated, what then? How would they treat it? More than likely I'd be back on bipap, unable to breathe, with no options available. They might have to re-trach me, and with all the complications of the first trach, I am certainly not up for a repeat experience. So excuse me for not racing after this doctor or that doctor. The time I have left is too precious to be wasted sitting in doctor's offices. Even if they offered a solution I'm not sure that I'd want to take it. A lung transplant might fix my lungs, but would the new ones be destroyed just as these ones have? Would I even survive? While some may not understand why I don't want to do anything and everything possible, such as having a lung transplant, it is such a gamble. There is no guarantee. It could make me sicker. It may be too much of a fight. I am tired and when my time comes, I want to accept it gracefully. I want to enjoy the time I have with my family and friends and not think about what could have been, but rather what is.
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