Whose Opinion is it anyway?

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.

Friendship

One thing you learn when you get sick, or when you are faced with life's difficulties, is who your real friends are. As one of my fellow zebras said, "having severe health problems certainly shortens your Christmas card list." While many people can call themselves your friend, actions speak louder than words. A true friend is there for you no matter what - through the thick and thin, good and bad, sickness and in health. They are the people you can truly count on. You know they care about you and they support you in those times of adversity. They are there to be the shoulder to cry on. They are your cheerleaders. When you think for sure you can't go on, they are there to hold you up. They want you to be the best you can be. They accept who you are. They like you for being you. With them you can drop the mask, and just be you. In addition, friendship goes both ways. As much as they support you, you support them.

When I was first diagnosed with my immune disorder, I quickly learned who my true friends were. I was in the hospital frequently. Times that I wasn't in the hospital, I didn't feel well - I was too tired or too sick. I'd make plans to do something or to go out, and I would end up having to cancel because either I'd be sick or wouldn't feel well enough to go. Often people didn't understand this. They wanted to go out and just have fun, or be able to do things spur of the moment. I learned that though people called themselves your "friend" this was in name only. They didn't visit me in the hospital when I got sick. When things were good, they were the first ones to be there for the fun, but when things go tough, they were the first to high tail it out of  there as soon as they could. They did not understand my disease, and everything was about them. I also learned that some people are incredibly shallow. They didn't want to be friends with a person who is sick. Though it is a hard lesson to learn who your true friends are and it hurts to discover that several people who you thought were your friends aren't, it is great to discover those that are true friends. These are the people that support you no matter what. They got your back. They do visit you in the hospital. They may even wait with you in the ER. If they can't, they still call to see how you are doing. You know they care.

When I got the trach, my group of "friends" got even smaller. The thing that hurts is that should the situation be reversed, I'd be there for them, and I have. I don't expect for people to visit, though it is nice when they do so. Being sick and in the hospital is no fun. You feel lousy, you're subjected to painful and often invasive medical procedures, you're bored and depressed at not being able to participate in your usual every day life. Times when being sick means you miss one thing or another, you then also feel guilty for having to miss that engagement. You feel as if you have let people down. I have missed many holidays, birthdays, even one of my friend's wedding. There is the disappointment you feel at having to have missed it because you were looking forward to it, but also you feel as if you, yourself, are a disappointment, because once again, you let your friend down. So, I understand people not being able to visit, but it is nice to receive a phone call, text message, or email just saying "hi" and letting you know that they are thinking about you.

It's hard. I have one friend who I was best friends with. She went through some difficult times and I was there. I went through some difficult times and she was there. We met in college. When I graduated and had to move back home, things changed. As long as I was willing to drive an hour and a half to see her, then we were cool. But as I got sicker, I wasn't able to do that. She didn't drive down to see me, nor did we meet part way. It was inconvenient to her. Our relationship grew further apart as my illness prevented me from being able to engage in strenuous activity. Soon I became ashamed of myself and my limitations as well as the physical changes my disease had caused my body. When she'd have a hard time, she would call and I'd stop what I was doing to be there for her in any way that was possible.

One of my other "friends" I discovered was really very self-centered. My illness is not "convenient" to her, too which I am sorry. My disease is not very convenient to me either. She has not called or made an effort to visit. There are times she says that she will visit, but it is a bunch of broken promises. Yet, she asks, "We're still best friends, right?" No, I am sorry, we are not. I am too tired, too weak, and too sick to pacify other people's needs. I don't have the energy to do things just to make them feel better about themselves.

And yet, I feel blessed. Through this illness, though I have lost many "friends" I have gained many true friends. People who I have never physically met, only know them through FaceBook, have become a huge support to me. They genuinely care. They are worried about me and my well-being. Though they may not be able to visit, they message me to ask how I am doing. They send cards and well-wishes. They pray for me and my health. They encourage me and my progress. They show concern and worry if they don't hear from me. They are my support. Sometimes I wonder what it means that people who have never physically met you can be more supportive and care more than the people that are physically close to you. Some may think it is sad that we reach out to those that are in essence strangers, and don't provide for those close to us. Others may say that it is amazing that we are able to share our love, support, and friendship with people all over the world. I know that the people who I personally know and are close to geographically would not act any different if things such as FaceBook didn't exist. They would not be more supportive. Instead I would feel alone and isolated. In my opinion, things like FaceBook, open doors and allow for relationships to others that otherwise wouldn't exist. We all need to feel loved and supported, to feel that we are cared about, and that we mean something and are valuable to others. I think that it is awesome that technology today allows people globally to be brought together.

L-R (Me, Mebsie, Ducky) 2 wonderful friends I met on FB

Zebras - a rare breed

When doctors go to medical school, they are taught, when you hear hoof beets, think horses, not zebras. In other words, think the most common cause of illness, not the most obscure. This has become a problem in medicine because seldom do doctors think outside the box. They try to fit everyone into that round hole. But patients don't always fit in that round hole. When a patient doesn't fit, the doctor keeps trying to make them, which is a lesson in futility. It leaves both the patient and the doctor frustrated. When the patient continues to not fit, the doctor just throws them out. Not in the literal sense, but similar to if you think back to being a child and how if the peg didn't fit, you first tried to make it, and when you still couldn't make it fit, you tossed it to the side, putting your attention to the ones that did fit, and ignoring the one that didn't. For some kids, this is the end of the game. For others, they continue to search for the hole it does fit in, though, this is much harder to do. It is very rare to find the doctor that doesn't throw you to the side and ignore you, but rather continues to try to find which hole you fit in. The doctor  that thinks zebras, not horses is this type of doctor.

Even here, in rehab, I am a zebra. I am not a "normal" trach patient. Most patients that they see here that are trached, have temporary trachs. They have been in some sort of accident or trauma. For them, the trach is temporary. They had it put in because they had to be vented for an extended period of time while they recovered from the accident. As soon as they get here, they cap them. The trach is then removed as soon as possible. For me, circumstances are different. The trach is not temporary. I was not in an accident, nor did I have any type of injury to cause me to need a trach. The trach was put in due to a disease process and the fact that I am in respiratory failure. The trach has given me a chance at life. Without it, I would not be alive. It is not a temporary thing, and for the doctors here, this is a different concept, something that in some ways is difficult for them to wrap their mind around. Rather than focusing on getting the trach removed, I need to focus on learning how to live with it.

I know that I am not the typical trach patient. I understand that this can be a challenging concept for doctors. They are not used to seeing a person so young with a permanent  trach. The first thing they discuss with me is when we can start capping and weening me off the trach. They can't comprehend that this is permanent, well at least as long as I want to be alive, since it it the trach that is keeping me alive. People tell me that nothing is for sure. That is true. Something could happen or they may discover something new that will help treat my lungs, so that I don't need the trach, but this is not a guarantee. It can't be counted on, and in all likelihood, I will have the trach for as long as I live. The trach has allowed me to breathe. Without it, I'd be back in the hospital, on bi-pap or worse, fighting for every breath, knowing that my body could go on this way for short period of time before it gave out.

I am very protective of the trach. Patients with trachs have to be to some extent. It is your airway, and how you breathe. It is also direct access to your lungs. Thus, you must be vigilant to prevent infection. I am a little more protective than some because of all the challenges I faced and hurdles I have had to jump to get here. In addition, I am very protective because of the complications and bleeding that I experienced with the trach.

When Dr. Miller first came in and wanted to talk about capping, I automatically said no. Obviously, he had not read my chart and the purpose of the trach. I informed him that this was not a temporary trach, it was permanent, and it would be staying exactly where it was. I explained further that as long as I wanted to breathe and stay alive, I had to have the trach. Then, he tried to suggest taking out my current trach and putting in one that could use disposable cannulas. While it would be much more convenient to be able to take out the inner cannula, throw it out, and replace it with a new one, one that didn't require cleaning; it would mean taking out the entire trach out to clean it, and this I would not like. I would be afraid of something happening when I took it out, or not being able to put the clean one back in. The other suggestion was to take this one out and replace it with a non-cuffed trach. The thinking behind this was that because I am not vented, I don't need the cuffed trach. This is true currently, however, it would defeat one of the purposes of the trach. In addition to allowing me to breathe better, the trach allows them to easily put me on a vent without the need for intubation. I have been intubated a lot and the trach allows them to do this without causing the trauma and damage that occurs with intubation. With everything that I went through with this one, I have a "don't touch the trach" policy. Anything else is okay, but don't touch the trach. The only person allowed to touch the trach is Dr. Constantino. So though the doctor means well, he has to realize that this is a permanent thing. I am not going to be weened off or capped, but rather I have to learn how to live with it, manage my everyday life, and be able to handle challenges that may come up.

It is a bit frustrating. While I understand that this isn't the norm for the majority of their patients, it doesn't matter. It is the reality for me. I had asked for the oxygen adapter for the pmv. The pmv has an adapter that fits on it and allows you to connect o2 tubing from the canister itself directly to the pmv without the need for a trach mask and venti regulator. Dr. Miller would not order it because they didn't have experience with such things. Besides, I think he still has the idea in his mind that I will be capped and off o2 sometime in the future. Again, while this may be true of most patients, it is not true for me. I have been on o2 for 4 years. While it would be wonderful to not need o2, this isn't realistic. Unless my lungs get better, my o2 requirements will not change. I will not be coming off the o2. The o2 adapter would allow me to be much more independent and have more freedom. He referred me to Dr. Constantino; however, Dr. Constantino is the surgeon and doesn't make decisions regarding o2 requirement. Therefore, it will probably be up to my pulmonologist to order it. The frustrating thing is that as a patient, I can't just order the o2 adapter for my pmv myself. It has to be prescribed by a doctor. I thought that if I had my appointment with Dr. Constantino and he said that it was okay, giving Dr. Miller permission to order it, that I could get it and try it out while here. My appointment with Dr. Constantino had to be changed. I voiced my concerns of not being able to have Dr. Miller order it without Dr. Constantino's approval, and thus not getting it while here. Dr. Constantino may not feel comfortable ordering it either because he is the surgeon and doesn't make decisions regarding my o2 requirements. He just takes care of the actual trach itself. He could give permission, saying that the o2 adapter isn't contraindicated with the trach and my condition. I had wanted to get it while in rehab because obtaining it while here is much easier than at home. Here, the doctor orders it, they place the order, and then it comes. There are no hoops to jump through, no red tape to cut through. At home, there will be many obstacles and it may take a couple months to get something that could be obtained here in a few days. For instance, I have been trying to get a wheelchair since December. Here, they put in the order request and it is here a couple of days later. Everything is streamlined, making it easier and more efficient. I don't see the problem with ordering it since no harm can come by ordering it and trying it while here.

Though it can be special to be a zebra, it is often quite frustrating. Nothing about a zebra's medical care is typical, and often this can be extremely frustrating. If only medical personnel would listen to us. We do know our bodies best.

Stages of Death and Dying - Not just for dying

Many people know about the stages of death and dying, the stages one must go through when they are dying. These stages were identified by Kubler-Ross and include: denial, anger, bargaining, depression, and acceptance. It is my belief that these  stages are not limited to people who are dying. They affect anyone who experiences a major life change, especially when some form of loss is present.

Getting a trach was a major life changing event. No one "wants" a trach. It is not something that is done electively. It is done when there are no other options . At the same time, there is nothing that could adequately prepare a person for life with a trach.

My life has become defined as - before the trach, and after the trach. It is definitely something that is difficult to adjust to. Doctors make it seem as if you get a trach and everything is all better. You go back to your life. But that isn't how it works. You go into surgery with one life, and you come out with another, and just as with your previous life, you must relearn everything. The hardest thing though is that you must mourn the loss of your old life. I think if you had more time to adjust to it, it might be better. But they came in one day and said they wanted me to think about having a tracheotomy, then I agreed, and I was set up for surgery the next day. From the first it was mentioned to surgery was 3 days. I didn't have time to think or process. I was told, you need this if you want to live. Okay, and then it was done.

My life now is completely different. I do miss my previous life. I mourn the loss of it. I will never carelessly take a shower, not using certain methods to be sure to not end up drowning myself. I will not be able to swim and have to be exceedingly careful around water. I will always have to be extremely vigilant about trach care, always prepared for it to get clogged or fall out, ect. Yes, I can do many of the things I did before. I have a life. I am alive. But not in the same way as before the trach. My life will never be as it was before this. And like the stages of death and dying, I have to mourn the loss of my old life and accept this new one.

This hasn't been easy, and I know that this road isn't close to being over. I know there will be many challenges ahead. There are moments when I have hope and I am okay. I also have moments in which I'm not, that I don't want this life. I want my old life back. But that isn't possible. One thing I wish is that I had had a chance to appreciate my old life and do the some things for the last time. For instance, I would love to go for a swim. You don't fully understand what you're losing when you get the trach. You can't truly comprehend the changes n your life. And you can't appreciate certain things until you no longer have them. Sometimes I am angry, angry because "Why me? Why do I have to deal with this? I don't want to have to deal with this." You have to allow yourself that anger. But in the end, it doesn't matter why. All that matters is that you do and therefore, accept it and move on.

The period after the initial trach, when I was sent home, is what I would call the great depression. It was a period in which I was crushed by what I had expected, what I had been told, and reality. This was augmented by the fact that I was to go home and the services that I needed weren't ready and the services that I needed weren't in place. Every little thing was a huge battle, and a battle that I couldn't fight alone. I couldn't advocate for myself, and I had completely lost my independence. I went into the hospital completely independent. I came out of the hospital relent on people for everything, I couldn't speak. I could only communicate through writing. I didn't have oxygen set up. I didn't have humidification. I didn't have cleaning kits. Every little thing had several hoops to jump through. I was essentially stuck in my room because that was as far as the tubing would allow, It was hell, At that point, I kind of wished I could just go quietly in the night and die peacefully. I was tired of fighting and every little thing was a fight. I wanted to be free of suffering and able to breathe easy. It was the life I had feared and why I had been so adamant about not wanting a trach, no matter what. It was not a quality of life. I wanted to live. If someone had asked me if I had done the right thing by allowing them to put in trach in, I would've said "no". I would've said that dying would be preferable and that I wanted the trach out so that I could be allowed to go peacefully.

At this point, things are better. I have some hope. I am no longer completely incapacitated. I can be independent. I can have my life back, though not in the same capacity as before. In that, I am starting to reach acceptance. I know that this is a process, one that is ever changing and never truly complete. Though my life with the trach is different and though I miss my old life, I am learning that this new life can have be good too. It is different, but it can be different and good. I can experience joy and fun. The trach was meant to give me a chance at life. It has done this. I am alive. It is up to me, however, to make the most of that life. I am the master of my destiny. Life is for the living, and I must choose to live.

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...