Progress

One of the most amazing things of being here is seeing the progress people make. It is truly miraculous. When I first came here, the woman in the room across from me had a severe brain injury. She must have had a trach, which they removed, because she had a bandage over her throat. She was unable to feed herself. She could barely sit in the wheelchair. She couldn't follow commands, and she didn't speak. Her outlook looked grim. I could not see how she would ever be prepared for anything more than a nursing facility. Today, as I was doing pt, I noticed the physical therapist working with her on one of the mats. She was sitting on the edge without the aid of anything. She wasn't being held or supported by anything to keep her upright. This in itself was amazing, but then she got up and stood using the walker! I was absolutely blown away. I couldn't believe it. Had I not seen it with my own eyes, I wouldn't have believed it, knowing how she had been initially. I felt like crying tears of joy.

Later today, I saw another miracle. One of the guys that had been admitted last week for brain trauma was in the pt room. When I first saw him it was obvious that he had a tbi (traumatic brain injury). He was hooked up to oxygen through a trach mask. He had a neck and back brace. He was strapped into the wheelchair to keep him upright since he wasn't capable of holding himself upright himself. Today, not only was he no longer hooked up tho the oxygen, thus must be going through the process of capping or has been decannulated, but he wasn't strapped into the wheelchair. He still wore the neck brace, but not the back brace, and most miraculous was he was not just standing, but walking, walking without the aid of anything. He was just walking around the gym, with his physical therapist only holding onto his gait belt as a precaution. He didn't seem to need a lot of assistance. He walked one time completely around the room. I feel so blessed to have the opportunity to have seen this, to watch the progress of other patients.

While it is easy to see the progress and incredible improvement others make, it is much harder to acknowledging my own progress. I do recognize that I have made a lot of progress while here. I have worked incredibly hard, and it shows. The goals set for me when I came here were to be completely independent with the use of aids by the time of my discharge. I had to be able to be completely independent because at home I really don't have any help. There isn't anyone at home to help me with daily activities. I live with my dad, but he doesn't provide any care for me. Though I could be independent with the use of aids such as walker, wheelchair, or cane, I must be able to complete my daily activities without the assistance of another person in order to be ready for discharge. When I was first told this, I thought this would be easy. I couldn't imagine needing any aids by the time I was discharged. I expected that I'd have full functional ability - able to walk unassisted. I thought that I might need a cane for longer distances, as I had before, but never imagined that I'd need a wheelchair of walker. Granted, I hadn't really acknowledged the extent or severity of my issues. I thought it was just weakness, in which case I'd do exercises and get stronger. I remember the first day when they put me up to the parallel bars. It was expected that with the use of the bars, I could stand unassisted. This wasn't true. I couldn't even pull myself up. Looking back, I do recognize that I have made a lot of progress. No, I am not where I'd like to be. I am not back to normal, but I am greatly improved. As my goals had stated, I am able to care for myself independently with the use of aids. I am able to walk short distances and stand for short periods of time using the walker. I am able to get around using a wheelchair.

I have made progress in other areas as well, not just walking. When I first came here, I wasn't able to bathe myself. Showering was an extreme challenge with my trach. The first shower I took, took over an hour. I needed help dressing myself. I could barely stand long enough to pull up my pants. I would stand, hold onto the walker, and the aid would help me pull my pants up. I had to take frequent rests. Now, I am able to basically shower and dress in ~1/2 hour. Before, I'd need a nap after showering because it was so physically exhausting that I needed to rest. Now, I bathe and dress pretty much without help. I am able to stand for longer periods of time and can do so without being completely exhausted after. Don't get me wrong, showering and dressing is still rather tiring. Though my legs were the area of greatest weakness, I have also been able to work on the strength in my arms. When I first came here, I needed to be pushed in the wheelchair because I was too weak to push myself. Now I am able to push myself in the wheelchair and able to get myself around.

The area that I have seen the most improvement, however, is my speech. I came here unable to speak at all. I was beginning to be able to talk over the trach, but I could only say a few words. I still had to write most of what I wanted to say. Talking was exhausting and at times unpredictable. I could never be sure that when I went to speak, I would have a voice and sound would come out. Often I would go to speak, but no sound would come out. I had little control over when I was able to speak or not, which was very frustrating. I was not able to tolerate the pmv at all. Once we discovered the problem with using the pmv and got me one that worked properly, I made huge progress with my speech. I am so proud of my voice. I enjoy showing it off. I worked very hard to talk normally, and now, for the most part, just by listening to me speak, you wouldn't know I have a trach. My speech is pretty much completely normal. Occasionally, I can be hard to hear. Sometimes I have difficulty speaking, but for the most part, my speech is normal. Not only have I met all of my speech therapy goals, but I no longer need speech therapy.

It's funny what you come to see as an accomplishment and progress. Before the trach, I never thought about the things I did every day. Most people don't think about their ability to speak or do other things such as shower and dress themselves, but having to relearn everything is a challenge. Even the little things in life become accomplishments. The important thing to remember is that it is progress. You need to take baby steps and be proud of your progress. Be patient and kind to yourself, knowing that it is one step at a time, one day at a time.

Perfect Patient

I think that it's funny how all the nurses and therapists argue over me and over who gets me. They fight over me. This weekend, the aid had me in the morning. For second shift, another aid was assigned to me, but the first aid that I had had in the morning wanted me. She offered to take 3 of the other aid's patients in addition to me, so long as she could have me. This would give the other aid 4 less patients, and thus a much easier load. The nurses love me because I make their life much easier. They don't really have to do much. I do my own trach care. I give myself my own neb treatments and can set up the o2. I can administer the Benedryl as needed. Really all they have to do is give me access to the medication. The physical therapist told me how even they fight over me. I asked why. There is nothing that I do that is extraordinary. I am knowledgeable. I am pretty much independent and don't require a lot of "care." The psychical therapist told me that the reason they all love me is because I am motivated to get better. A lot of the people that come here are not. Many of the patients here are depressed and have no motivation to engage in therapy and get better. They are depressed about their condition and their limitations. They feel hopeless. They have lost functioning ability in some way or another and they are trying to adapt to life which can seem impossible at times. Thus, they seem to give up. They don't engage in therapy because the feeling is "why bother anyway." I am not like that. I am engaged in therapy and I am motivated. I am working hard to get back as much function as I can.

The truth of the matter is that you only get so much time here. Insurance will not pay indefinitely for a person's care here. Nor will they wait until a person gets ready to do therapy. You are given only a certain amount of days that insurance will cover for acute rehab. Though there are times that insurance will cover a few more days if the rehab doctors felt it necessary and helpful towards reaching your goal of independence and going home, but they won't make exceptions if you're not engaging in therapy. What's the point of paying extra when you aren't even participating? The staff here aren't gong to appeal for extra days if you aren't participating. They need the bed for someone else, someone who will engage in therapy, is motivated to get better, and who needs it more. So what is gained by doing this? Nothing. You are still unprepared to cope with living. You haven't worked on improving your ability to function. Therefore, most likely you will end up going to a nursing home or long-term care facility.

I worked so hard to get here. The first time I was sent home, it was hell. I wasn't prepared to go home. I didn't have the services that I needed setup. In reality, I should never have been discharged home. Once discharged, we tried to get me into rehab but doing so on the outside, when not a patient of the hospital, is near impossible. You have to go through insurance and jump through a million hoops, whereas when your a patient in the hospital, it is easy to get services. When I was admitted the second time, I refused to be discharged. I demanded to go to rehab. Even that wasn't easy. My case is complicated and several of the rehab facilities wouldn't take me because of the Igg treatments. During this time, which was about a week and a half, the social worker asked several times if I wanted to be discharged and work on it from home. I refused this as an option. It would certainly make their life easier, but then I'd be in the same place as I had been when initially discharged, unable to function. I couldn't live that way. My goal was to regain as much function as possible, so that my life could go back to being as normal as possible as soon as possible. I knew that insurance would only give me so many days, so I had to make the best of what I got. I had to work as hard as I could in order to regain my strength and functionality as much as possible. It is hard. At times it's very discouraging, but just sitting there and feeling sorry for myself wouldn't change things. I need to make good use of what I do have, and focus on my strengths rather than my weaknesses, what I have rather than what I have lost. The goal of the trach is to give me more time and to help me function as normally as possible with a decent quality of life. Thus, I can't go around feeling sorry for myself. I need to learn to live with this. So maybe it is my thought pattern that helps me.

Motivation

Every physical therapist motivates his/her patients differently. For some, they need to be pushed aggressively. I, however, am not one of those people. Aggression does not motivate me. It doesn't help me, but makes me want to give up instead.

Today was the worst PT session ever. Up until today, all my therapists have been great. They are extremely knowledgeable and helpful. They are also very encouraging. They help me feel confident, while they challenge me. My main physical therapist is Jess, a PT student. She's here doing her clinical rotation. Because she is a student, she has to be overseen by one of the other physical therapists that work here full-time. My main physical therapist is Laura, but Laura is on vacation, so Jen is covering for her. I don't like Jen as much as I like the other physical therapists. She is knowledgeable like all the other therapists; however, she is also very abrasive. I've been working really hard. When I first came here, I was unable to stand up. I couldn't stand up at the parallel bars or even just with the walker. I essentially had to have someone hold me up or support me at all times. Then we started using the standing frame and I was gradually able to stand for longer periods of time. As my legs got stronger, I was able to stand using the walker for short periods of time; however, I was still unable to walk at all. So they put me in the LiteGait. The LiteGait is a machine that is similar to the standing frame in that it supports you while you do the work of walking. It helps you build up the muscles needed for walking unassisted, but provides support through this process so that you don't fall. To use the LiteGait, you must first get into this harness. It kind of reminds me of the canvas slings they use when a whale becomes beached so they can throw it back into the ocean. They had me lay on the table so that they could strap me into this contraption. When you are all fastened in, it is like the harness for para sailing. They then use the controller to bring you to a standing position. You hold onto handles in front of you for balance. As the machine moves forward, you are forced to walk, step-by-step. The nice thing is that with the harness, it is impossible to fall. They can change the amount of help the machine gives. It can hold you up nearly completely, the machine doing all the work, or they can decrease it so that essentially you are doing all the supporting and walking, holding your own body up. This prepares you for being able to walk with the walker.

Well, I was making progress. I didn't really need the standing frame anymore. We had tried the LiteGait a few times, and now they wanted me to try walking a few steps. I was extremely nervous. When you first practice walking with the walker, the have one therapist with you, with one hand on the gait belt. The gait belt is a thick belt that you wear so that if you begin to fall, they can support you. Another therapist follows with a wheelchair behind you so that if you do begin to fall, become unsteady, or get really tired, the wheelchair is right behind you.

When I first began to walk, I was very unsteady, but I was determined to do well. One of the things that I noticed was that my foot/leg was doing something weird. It kept shaking back and forth, almost as if I was continuously rolling my ankle. It would roll to the side and I'd work to straighten it. Then it would do the same thing. It was so frustrating. I couldn't seem to get it to work properly. My brain kept telling it what to do, but the muscles wouldn't respond normally. It took extra effort to make it work and control this weird movement. Walking, just by itself, takes up a lot of energy and this made it more so. I was so unbelievably frustrated at not being able to make it just walk normally. On top of that, this movement hurt. It was like having uncontrollable muscle spasms which can be extremely painful. To make things even worse, neither Jen nor Jess seemed to notice that my foot wasn't working properly.

I'd stand up with the walker, and almost immediately my foot would start the twitching. I'd go several feet and then be so exhausted and in so much pain and needing to sit, Jen would say, "No! You can't sit." It was very derogatory and said in a tone that suggested that I wasn't trying and just faking weakness because I didn't want to work or just making excuses. Now I'm a perfectionist, I work hard at everything I do. I always give at least 100% most times 110%. I never take the easy way out, and always push myself to the end. The next time I walked was similar. I walked, trying to work through the spasming and the pain. When I couldn't go any further, Jen was like, "Come on Melissa, you can do it. NO, don't sit. Oh Melissa...." Just that was hard enough, but then she said, "next time, I should leave the chair behind so you can't stop." All of this badgering was taking a toll on me. I was working so hard and from the way she made it seem as if I wasn't trying at all. I was trying to work through the pain and frustration of my foot not cooperating. As we stated the next trial, the pain started to get to me. Jen continued to badger me, and I was unable to go very far, only a couple feet As she continued to tell me that I could do more and that I wasn't really working, that I needed to just trust myself, I began to cry. I didn't want anyone to see me cry. I felt so ashamed. I WAS trying even if she didn't think so. As I stood for one more time, I couldn't get my foot to behave at all. I hurt, I was tired, I was in pain, I was frustrated, and I was crying. As she pushed me saying that she wouldn't let me sit until I'd reached a certain point and that I wasn't trying, that I could do better than this, I started really crying. Each step I took hurt immensely. I was at this point sobbing. I couldn't catch my breath because I was walking, and I was crying. The physical pain, however, was nothing compared to the emotional pain. I wanted to just give up right then and there. Sit down and say, you're right. I can't do this, I'm not going to do this; I give up. Finally Jess seeing just how upset I was got me to sit. When she brought me back to my room, she told me how proud she was at how hard I had worked and how much progress I'd made.

I understand that each therapist has different ways to motivate their patients. For Jen, that is badgering them. The idea is that by saying they aren't tying and they can do more will make them want to prove they are trying and cause them to push harder and do more. I don't work that way. For me, it caused me to shut down completely. I want to sit down and say "you don't think I'm trying. Fine, I won't." The emotional pain not feeling like you are trying your best but that it isn't understood or appreciated can be the worst and just makes you want to give up.

It is interesting to see how different therapists motivate. Jess motivates through encouraging me, and this works better for me. She will say, "come on, you can do it. Just a little bit further. You're almost there. Keep going." She would then say how great I did. We'd make goals and then see if I could surpass them. While practicing standing, she'd distract me so my focus was on something else. I did better with this when I'd be standing, we'd set a goal of how many minutes I could stand for. She'd have the timer, but it would be pointed so that I couldn't see it. she would then talk to me about redecorating the gym area. When I started to get tired, I'd ask if I was at the goal yet so I could sit. She'd say "almost. Just a little bit more." So I'd stand longer, figuring if I was close and it was only a little bit more, I could stick it out. Again, I'd ask, "Am I there yet?" and get the same response. "Almost. Just a little bit more" Finally I'd be too tired and have to sit down. When she'd tell me how long I'd stood for, it was well over our goal. She was sneaky in this way, but it worked.

I left so upset after that incident with Jen that I almost didn't want to do PT the next day. I wanted to refuse and not put myself through that again. It must have been discussed because though Jen still oversaw Jess and her work with me, she wasn't an active participant. She was in the room, but working on something else across the room, and for this I was grateful. In reality she had no right to be that way. Motivating patients that way may help some, but I am definitely not one of those people. I do better with encouragement. To do things in that way makes me feel like a failure then I do give up and quit. She didn't know how hard I was working. n truth, only I could know that. I was trying. I was giving 110%. I was pushing through pain to work harder and do better. I wanted people to be proud of me, and the work I was doing.

A Way to Find Hope

As a massive hurricane approaches, it is hard not to see destruction and devastation, especially after already experiencing a tornado, an earthquake, and a tsunami in the past few months. In addition to all of the strange and severe natural disasters, one doesn't have to go very far to see more evidence of what seems to be corruption and terror. The news in the newspaper and on television is loaded with stories of school shootings, terrorism, gang wars, baby killings, and many other terrifying events. It is easy for a person to question what this all means, and if this is the end of the world. But rather then feel powerless and a victim of life's circumstances, I see hope. I see the people that are brought together, to help those in need. In Springfield, people donated backpacks and school supplies for children in need after the tornado. It is through adversity that the true glory of people is seen. People come together volunteering their time and resources to help others. After the tsunami, people made food for the victims; they donated clothes and other things. People came together to rise above the terror and destruction. There is a reason for everything, though we may not know it at the time. Perhaps, God is using His will to bring people together. In this, they are able to share His love and His glory.

Having the trach has been extremely difficult. It has been a very long road, and I know this road is not yet over. I have many more challenges ahead, but I know with the support of others and God's help, I can persevere and not only survive, but thrive. It is through God that I am alive and it is through prayer that I have been able to survive. I have experienced extreme adversity, and it is through God that I have the strength to get through it. People I don't even know, except through FaceBook have been there all the way, praying for me, praying with me, and cheering me on. There have been many times that I wanted to give up.The time between when the initial trach was put in and the trach was downsized, was a horrible time. I felt the future was bleak and I had no hope. The trach had been put in with the purpose of enabling me to go home and have a decent quality of life. Had I had refused the trach I would never have been able to leave the hospital. Though this was the intent, reality was different. I went home unprepared for life with a trach. I was essentially tied to a tube and only able to move around my room. I felt horrible. I was weak and sick. I was unable to function, and honestly if I had to stay that way, I didn't want to live. I prayed that God would take me, that for once my pain and suffering would be over. But it was not my time. I now am better prepared to life with a trach. I have hope.

One thing I have learned is that you can't take anything for granted. In times of adversity, it is possible to rise above and survive. People come together to support one another. You can't live your life in fear, but rather must live each day as if it is a gift, a gift from God.

It is through God and prayer, that people are able to come together in times such as these, through natural disasters and the struggles of life, that we are able to rise above it all. It is through God and prayer that rather than seeing devastation and fear, we can see hope. It just depends on how you look at things. You can view it as a tragedy and something that you can't control in which case you'll feel powerless. Or you can view it as a situation of hope, something that can be an instrument of God to bring people together, to  support each other.

Most people think of FaceBook as just a social networking site. They don't realize that it is much more. Through FaceBook people who otherwise would not know each other, get to know one another. To me, ti is a giant prayer group. When one person is sick and suffering or just needs some extra prayers, people from all over the world come together and pray. We pray for people we don't even know. Why? because they need it.

At first, I was afraid to say "praying for you" or "God Bless". I was afraid of mentioning God or my faith, or asking for others to pray for me. So many people get all upset over mentioning God or faith in the community but it is okay to do so on FaceBook. It amazes me how many people can come together to pray for a person in need. People from completely different places, with different beliefs, different life styles, and different struggles all come together to pray for each other and help out in any way possible. It can be quite depressing and overwhelming to see all the pain and destruction in the world today. But then I get on FaceBook and I see a person who has asked for prayers from someone they know, or says that they will be praying for me, and I know that the world is not all bad. God's work is spread on an international level. God is using others as instruments to spread the word of God and share His love. It is truly miraculous.

A Good Christian

Often people claim themselves to be "good Christians." They preach the Bible and speak the word of God. They attend church regularly. But what is a good Christian? Being a good Christian doesn't depend on how often you attend church or how much you read the Bible. In my opinion, the church is an institution. Being a good Christian depends on your actions and your words. Being a good Christian means following in Christ's footsteps, doing what He would want you to do. A good Christian does not judge others. None of us is perfect. It is the reason that Jesus died on the cross - so that He could wash away the sins of the world and so we would have everlasting life.

One thing that has upset me greatly and makes me very angry is how some of my family members have reacted to my illness, especially my trach. The only person other than my mom, brothers, and sister that has visited me is my grandmother. None of my aunts, uncles, or cousins have shown that they care to any degree. I do not expect them to visit. My aunt, uncle, and cousins in Georgia, or my uncle in Florida are too far away; however, in an age of technology such as the one we live in, they could call, send a text message, an email, a card - anything. There are many ways to let a person know that you care and that they are thinking about you. I have an aunt and uncle that live ~20 minutes away. They drive by my house on their way to church. Yet, they have not called, sent me messages, or visited me. They have not asked how I was doing, or if I was okay. I know my mom has kept them all aware of my condition and what was going on. It angers me because they profess to be a huge support to me, but even as I lay in the hospital fighting for my life, fighting to breathe and having to have a trach put in so that I could continue to live, they have not contacted me in any way. They profess to be good Christians, yet what "good Christian" doesn't attempt to provide support to a family member in need. They say they are busy. Too busy to make a phone call, too busy to send a text message, too busy to send and email, too busy to send a card? It is a shame when we are "too busy" to share care, concern, love, and support to those we love.

Part of my anger is fear. I fear that in not taking the time to show they care or ask how I am, they will miss out on that opportunity and regret it. I worry that should I die, they will regret this. I will not hold it against them, though it hurts me that they have not even called to ask how I am. My fear is that by the time they realize it, it will be too late. I saw how deeply my grandfather's death effected them. Mainly because they did not take his illness seriously. They took for granted that he was there and assumed that he always would be. But we all must die at some point. Nothing is forever. When he passed, they did not have the opportunity to tell him how much he meant to them. Though he knew it, they didn't have the chance to say it. I have watched how deeply that has affected them, and I fear for that happening with them for me. I know that I will not live forever. The trach was meant to give me more time. It is not a cure. It will not stop the progression or fix the damage already done. It has given us more time, time to enjoy each other and make more memories. Memories that they can think about and treasure when I am no longer here. Memories that can provide them comfort and love when they feel sorrow. So my anger is more for them and their wasting an opportunity. And yes, to some degree it hurts because it seems as if they don't care, that fighting for my life and the struggles I have endured are not importnat and mean nothing to them. To me, they cannot speak of walking in the Lord's way when they cannot take 5 minutes to call and ask how I am doing, cannot stop by when they pass my house anyway.This saddens me and I pray that they will come to know the Lord and His love, that they can enter this world walking in His light and be shown His mercy, for His mercy endures forever.

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.

Adventures of the Passy-Muir Valve

When a person has a trach, nearly everything changes. They have to relearn many things that before the trach, just came naturally. One of these things is speech. With a trach, just by itself, it is extremely difficult to talk. This is because the trach tube is put in below the vocal chords. Since air no longer passes through the vocal chords, it is difficult to make sound or speak. Typically, as a person inhales, the vocal chords open, allowing air to flow past the vocal chords into the trachea, and into the lungs. When a person exhales, the vocal chords close. As air flows over them it is possible to make sound and speech. Since the trach tube is put into the trachea, below the vocal chords, air no longer passes through the vocal chords for speech. Air that is exhaled, goes out the trach tube, thus never reaching the vocal chords. This makes speaking very difficult. It can be done with a speaking valve, or if you occlude the trach with your finger, but without the aid of anything it is very difficult.

When the trach was initially put in, I was unable to speak at all. As much as I would try, I was unable to make sound. Part of this was due to the size of the trach put in. I was unable to use the speaking valve because the trach was too big. The trach was changed to a smaller size so that I could use the passy-muir speaking valve. The passy-muir valve is a small circular valve that is placed over the trach tube. The way that it's supposed to work is that you are able to breathe in through the trach, but when you exhale, instead of it coming out your trach, as it would if the valve wasn't on, it is exhaled either through the mouth or nose. Since it is exhaled through your mouth instead of the trach, the air passes through the vocal chords during exhalation. As air passes over the vocal chords, it is possible to make sound and thus speak. Finger occlusion works in a similar manner. In finger occlusion, you breathe in through the trach through, but as you go to talk, you cover the opening of the trach with your finger. This prevents air from going out the trach and forces it over the vocal chords to be exhaled out of the mouth, enabling speech.

Since the 3rd trach surgery, I have been able to speak without the use of anything. I speak around the trach. Somehow I force the air over my vocal chords instead of having it all be released through my trach. In fact, for awhile this was my only form of communicating. The problem - it took a lot of effort and was quite exhausting. I could only say a few words at a time. My voice was quiet and breathy and difficult to understand at times. However, I could speak and communicate effectively. I tried the occlusion technique and while it allowed me to say a few more words at a time and my voice was stronger, it took coordination. You have to time breathing in and speaking. You obviously can't inhale while your trach is occluded with your finger. So, you have to gauge the timing correctly. It is also quite annoying to carry on a lengthy conversation by occluding your trach. For me there was another element too. This is that no matter what, your hands cannot be perfectly clean. With a trach there is always added risk for infection. It is direct access to your lungs. Anyone with a trach has to be careful, but a person that is immunocompromised, such as I am, must be beyond careful. Other than the inconvenience finger occlusion presents, the infection risk is more of a concern in my opinion.

That leaves the passy-muir valve or PMV. For most people with trachs, the PMV is their life. With the PMV they are able to speak fairly normally. For some, it may take a short time to get used to it and adjust to it. For some reason I couldn't tolerate it. They'd put it on and I'd feel like I was suffocating. I couldn't get air in. My sats would drop and my heart rate would shoot up. I just couldn't tolerate it. Everyone here couldn't understand it. Why couldn't I tolerate it? They'd never had someone who truly couldn't tolerate it. On one particular session where I was having difficulty and telling the speech therapist again that I feel like I'm suffocating and can't get air in. She told me this wasn'tt possible because the PMV is made as a flap. It is secure at the middle, but not around the edges. As you breathe in, the flap opens to let air in. When we looked at my PMV, the flap was secure all the way around; it didn't open. Well, this would explain why I felt like I was suffocating - because I was. Give it to me to get a defective PMV. Really?... What are the odds? Well of course we switched PMVs, and lo and behold, it was okay. I could use it without difficulty. It still took time to get used to it but I didn't have the problems I had been having.

Adventures with IgG

One of the reasons that I ended up here rather than at one of the other facilities was my Igg infusions. No one had experience with giving the Igg. They couldn't accept my Igg that I got from home because there were policies preventing patients from bringing medication into the facility from home. Because of the cost, they couldn't get it through pharmacy. So, even though I had the medication, everything needed to give an infusion, and even an infusion nurse who could come and give it, it wasn't possible to get it there. Here, they arranged it so that I would go up to Baystate to get my infusions once a week. While it seems that this should be an easy thing, things are never easy, and never without drama.

My appointment was at Baystate for 10 o'clock. The ambulance came at 9, and we were there in plenty of time. I had to take an ambulance since I was a patient going from one facility to another. We got to Baystate and after getting the run-around of where we were actually supposed to go, we got me settled. We got to the first floor, and were told to go to the 8th floor, then when we got there, they directed us back to the first floor, ect, ect. It was quite an ordeal. They get me settled on the stretch, but the stretcher is not in a bay with wall o2. There is only a portable tank underneath. Well this is fine, but of course, portable tanks go quite quickly when you're on 6L. Finally, they found a bay with an o2 hook-up. Why it was so difficult to find a place that had wall o2, I don't know. It would seem obtaining o2 in a hospital shouldn't be difficult. But then nothing is ever as it should be.

My appointment was for 10, but in actuality, they didn't even give me my pre-meds until 1. For some unknown reason the infusion took forever. At home the longest it's taken is 5 hours. I didn't finish until 9:30 (8 1/2 hours after starting).The day nurses left at ~6:30. So they had me moved upstairs to the observation unit. This is the unit that houses the patients that don't necessarily need to be admitted, but they want to watch them overnight to see how they are and make sure they don't need to be admitted. This is fine. I finish my infusion and they call for an ambulance.

As the ambulance comes, I need to use the restroom. The problem - the bathroom in the room isn't handicap accessible. I can't get a wheelchair in there. Well, ok. I then ask the nurse if I could use a handicap access bathroom on the floor. For sure, they have a visitor's bathroom and typically, those have to be handicap accessible. Though what happens if they have a handicapped patient who needs to use a wheelchair, I don't know. Well I am told that there isn't a handicap bathroom on the floor. What? No handicap bathroom? This is a hospital is it not? They didn't figure they might need a bathroom that was handicap accessbile and able to fit a wheelchair? The nurse then asks me if I want to use a bedpan. No, I don't wnat to use a bedpan. I want to use the bathroom! There's no reason for me to have to use a bedpan. I decide that I really have no choice but to wait until we get back to Mount Siani.

In the ambulance, my trach gets clogged with a mucous plug. There is nothing to clean it with and I can't breathe with it clogged. This isn't an emergency because being smart, I brought my extra trach just in case. You should always have an extra in case the trach falls out or whatever. So I open the extra trach, put the clean inner cannula in, and take out the clogged one. I don't want to just put the clogged one in the box, so the EMT offers me a glove. I put it inside the glove and ask him to put it in the box. I can clean it when I get back. No problem. Well, he didn't put it back in the box, but rather, he threw it out. Yes, he threw it out. It's not like that was important or needed. It only was part of my trach.

The drama continued as the EMTs got lost in Hartford. They didn't know how to get to Mount Sinai. Today this shouldn't be too big of a problem. Plug in the address into the GPS and voila. Nope, no GPS. Perhaps they should've referred to a map, or called dispatch to get directions, but they did none of these things. Instead, they pulled over and asked a random person on the street for directions. So, here we are in Hartford, at night, and they were pulling over to ask random people how to get to Mount Sinai. I have to wonder if they didn't secretly have a death wish. Thank goodness all was okay. Eventually they found it. I got back at 10 pm, 13 hours after I left. An infusion, which we expected to take up most of the day, but to be back by dinner, took all day and then some. This was supposed to be my "day off" from therapy. Though it wasn't much of a day off.

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.

Rehab Day 1

First steps

 Today is the first day of rehab. I feel slightly disoriented and very overwhelmed. The therapists came in early this morning to introduce themselves and set up a time in which we could meet. It is a day of assessment and evaluation. For occupational therapy, I got washed up. It is a little embarrassing as my OT therapist is Chris, a man. It takes so much energy just to wash up, sapping my energy nearly completely. I am promised that tomorrow I can shower. Yay! :) This will be my first shower in nearly two weeks, since before going for surgery at Rockville Hospital.

Next I had speech therapy. My speech therapist, Nichole, is concerned about my swallowing and whether I am aspirating some food down into my lungs since sometimes what I am drinking comes out of the trach. Apparently this isn't supposed to happen, and not as cool as when it comes out your nose. lol. They are changing my diet to decrease the chances of this happening. Next week they will do a swallowing test. They will stick a camera up my nose and down my throat to see exactly what is happening when I eat. They have diagnosed me with vocal chord paralysis. If this is true and my vocal chords do not perform properly, this can cause aspiration. In healthy vocal chords, they close when you swallow, blocking the path of your trachea to your lungs and pushing food toward and down the esophagus. If my vocal chords aren't working correctly, they do not close when swallowing and thus food and drink can enter the lungs.

During speech therapy, we also evaluated where I am in regards to speaking. I speak rather well without any assitive aid. I talk around the trach. My voice is very breathy, but it is understandable. Speaking takes a lot of effort, and I am only able to speak for short periods of time before I am too tired. I can only speak 1-3 words at a time; however, I know with work and time this will improve. I am also able to occlude the trach with my finger to speak, but this is definitely not my preferred method. For one, it is a challenge to coordinate, when you inhale finger off and trach open, trach occluded to be able to speak. Another thing is this can be exhausting and I wouldn't want to carry on an entire conversation this way. In addition, there is the issue of infection. As clean as you can make your hands, there will always be some germs on them. By covering the trach with your finger, you are opening your body to numerous amounts of germs just wanting to attack your body.

Passy Muir Speaking Valve

The last mode of communication is using the passy muir valve, or speaking valve. This valve fits over the trach. It is small and round and has a screen. The way it's supposed to work is that it allows air to enter through the trach, but closes so that air goes over the vocal chords when you exhale, allowing for speech. Many people find this the gold standard. For me, it is not. I cannot tolerate the passy muir valve (pmv) at all. As I put it on, I feel as if my air has suddenly been cut off. When I attempt to make sound or talk, nothing comes out. Instead, I feel a great pressure building up behind the pmv and no way to  get it out. As it builds and builds, I feel as if I am suffocating. I feel like I can't breathe, causing my heart rate to go up and my o2 sats to drop. When I finally remove it, a whoosh of air comes out, releasing the pressure. If not careful, the pressure will cause the pmv to be ejected and flown across the room. For most trached patients, the pmv is their savior. Personally, I detest it. This doesn't mean that I will give up on it. I know that it is important to my life and my ability to communicate with others, but I really have a hard time with it. I can't ever imagine it being my favorite mode of communicating. Maybe it just takes time and practice to get used to it. I am able to talk without any aid, so maybe I'm not putting in as much effort as I should be. Yes, I can only say a few words at a time and it is exhausting, taking a lot of effort, but I am understandable. So in my opinion, the pmv is important, but it is not critical for me to be able to speak. Part of me wants to know if it is essential to use the pmv. If I work on breath control so that I can say more words at a time and for longer periods of time, building up my endurance, will I need to use the pmv or is it possible to speak effectively without it. If I practice various techniques that will help improve the sound of my voice and its volume, I think it might be. Right now my voice sounds hoarse and it is quiet.

Physical therapy is the area that I need to have the most progress. I have such weakness especially in my legs. I had experienced this a little bit in December when I had to get a cane to get around, but not to this extent. This is much more severe. I am unable to stand unassisted. Once in standing position, my legs begin to shake and the muscles eventually give up and I must sit. I am really unable to walk at all. This is extremely frustrating.

It still baffles my mind. How did I get this weak? Was it the accumulation of three major surgeries within two weeks, or two surgeries within four days? Was it the effect of bleeding constantly and being operated on for over two hours? Or is it something else. Could it be a virus? I have had friends who got a nervous system virus while in the hospital and were unable to walk for awhile when they got out. They had to do physical therapy and gain their strength back. Or is it another disease process. Is it Pompe or a Mitochondrial disorder? I was supposed to go for a muscle biopsy to check this out and determine if I had Pompe or a Mitochondrial disorder before the trach happened, but with all the drama of needing and getting a trach, I had to cancel the appointment. Guess it'll be something I have to reschedule when I get home and a bit more stable.

They had a team meeting about me. The average stay here is about two weeks, but it looks like I will have a slightly longer time. They estimate four weeks with a tentative date of Austust 31st. I have a long ways to go. I must be completely independent by the time that I am ready for discharge. Dad will not provide support, so I must be able to cook, care for myself, do laundry, walk, drive, ect. They expect that that is possible. By the time I am discharged, they expect that I will be able to be independent. I may need assistive aids such as a walker or cane, but I will be able to do everything myself.

All of the staff are good. They are extremely knowledgeable and I trust them to help me get back to where I was. There is a transitional apartment. This is an apartment that is on the unit. It is set up to be a true apartment. You spend the night there. This assures them that the patient is truly ready for discharge and capable of doing what they need to in the community and their own home. There is a pull cord that rings to the nurses station and a nurse can come if you need them. This makes me feel better because I know that I can be sure that I am ready to go home, but still have the support of the nurses if need be.

Rehab

After the third trach surgery, I woke up tremendously weak. It was as if my body had decided that enough is enough. I could not even get to the commode placed next to my bed without help. The original plan had been that I'd be in ICU to be monitored. I was kept for the weekend, and supposed to be discharged on Monday. When Monday came, I knew I wasn't ready to be discharged. I still needed extreme help with even simple tasks such as standing or getting to the commode next to the bed. The week before the second surgery, where the trach was downsized, was the worst. I was sent home though I shouldn't have been. I was weak and unprepared. The proper oxygen hadn't been set up. I didn't have trach supplies. I was basically confined to my room. This is not the life I had planned nor wanted. They promised that with a trach, my quality of life would improve. I would do the same things I did before the trach. Nothing could be further from the truth. Really I needed rehab to get stronger and learn how to live with a trach. When you first get oxygen, you have to learn how to live with it. You learn how to breathe. You get used to the tubing and carrying it with you. You learn about the machines that take over your house and how to fill portable bottles. You learn how to manage the oxygen when you go out. Well, it's similar when you get a trach. You must learn how to live with it.

It was said that I needed rehab. The problem is that once you leave the hospital, it is much harder to get in. When Monday came I told the discharge coordinator about my struggles to get into rehab. She was hopeful that she could get me in with no problems. Of course, with me, nothing is that easy. They got the insurance worked out, but the infusions were a problem. It was too expensive for them to pay for my Igg. I offered the use of mine since I get Igg supplies and meds for home infusions each month; it wouldn't be a problem to bring them in. However, there was a policy not allowing patients to bring in meds from home. It went on for days, trying to make it work. If we couldn't get it to work, then what do we do? I wasn't able to go home in my weakened state. I'd be unable to get in the house, nor get around the house, as would be necessary.

Finally, they tried Mount Sinai, which is an acute rehab facility. What is the difference? The reason the social worker had first tried to get me into Fox Hill was because it had pulmonary rehab. Mount Sinai does not. Fox Hill, however, is a sub-acute rehab facility, and like most sub-acute rehab facilities, it is part of a nursing home. Therapy is less intensive. A lot of the clientele is older people needing to gain strength especially after a fall such as a broken hip, or stroke. Mount Sinai on the other hand, is an acute rehab facility and is associated with Saint Francis Hospital. It is a hospital in itself with medical type units. Hospital rooms with jacks for oxygen set-up and hospital beds. They are able to take more medically complicated patients. Mainly, they treat patients recovering from an accident or brain trauma. They are capable of dealing with trachs and IVs. Thus, they were better suited for the care that I need. Rather than 1-2 hours of therapy a few days a week, here I will have therapy from 9 AM - 2 PM with a break for lunch, every day, six days a week. Patients get a day off from therapy. For most patients this is one day on the weekend. For me, since my ivig is nearly an all-day event, the day of my ivig will be my day off. I will have therapy both days on the weekend to make up for this.

Back to my story... I met with the case manager from Mount Sinai, and things seemed to be very positive. She expected me to be able to be admitted if not that day, the next; however, once again, I knew this too good to be true. The problem was my Igg infusions, again. They couldn't order it from pharmacy because the pharmacy didn't carry it in their formulary. I told them that I could bring in the supplies and meds needed; however, their nurses weren't qualified to give it. I could have Kathy, my infusion nurse come out and administer it, but this was against their policy. They couldn't have a nurse who wasn't part of their staff administer it. So once again, we were in the same position as we had been with Fox Hill. Going home was not an option. I got to the point that I said that if absolutely necessary, I would give up my infusions for the time I was in rehab. I knew it would be a maximum of 30 days because insurance would only cover for 30 days of rehab treatment. Though obviously not an ideal solution, going to rehab was more important. Without going to rehab I was unable to be home and return to my life. I was too weak to get in the house by myself. Once in the house, I couldn't walk, so getting myself to the bathroom and around the house wouldn't be possible. After much thought, they suggested having me going to Manchester Hospital to the infusion suite to get my infusion there. This would get around all of this bureaucracy and red tape. I would go to the hospital and get my infusion, just as I would if going to a doctor's appointment. I would get my infusion and then be able to return to rehab after. This seemed like an ideal solution. It was days of uncertainty and frustration. Everything is run by bureaucratic rules and regulations, which truly do nothing but prevent patients from getting the care they need and deserve. You have to jump through hoops and find ways around them just to get what you need. Finally, they were able to arrange it so that I would go up to Baystate to get my infusions once a week. To me this seems ridiculous since they now pay for an ambulance ride to and from there; they pay for the infusion suite and nursing care; and they pay for the Igg and medications. While had they done it here, they would have no additional charges. But all that really matters is that I can go to rehab and I can get my Igg infusions while there.

Though it took so long to get me here, I am proud of myself for being persistent, not just letting them bully me into submission, and not letting them send me home before I was ready, as they had done before. This is a dedicated rehab facility. The other patients are around my age. The oldest patient I have seen is ~60ish. It is very intense. I have ~5-6 hours of therapy 6 days per week. I have speech therapy, occupational therapy, and of course, physical therapy. All my therapists are extremely knowledgeable and encouraging. God works in mysterious ways.

Learning how to stand with PT Laura

Rehab - Here I go

Finally got the news I have been desperately waiting for. I am going to Mount Sinai. They just came in and said that I will be going tonight. I am excited. Finally I will start the next phase in which I get stronger to be able to go home and return to my usual activities. As happy as I am to finally be going to rehab, it is also quite scary. RGH has almost become my home. I know the staff. I have a set routine. It is familiar. I have never been to rehab before. I don't even know what it will be like, what I will do. It's all very overwhelming. There isn't time to process it. The case manager came to say I would be going at lunch time. I left RGH for Mount Sinai at 7:00 PM. I pray that this will be good for me and with the help of rehab I will get stronger and able to return to my life.

The wheelchair van showed up at 7:00 PM to take me to Mount Sinai. I had the belongings I would need. Mom had packed clothes and things I may need while there. As I entered the van and waved to the nurses and aids, I mourned the loss of them, but realized it is not the last time I will see them. Logically I know that at some point in the future, I will get an infection or something and need the hospital. I know that I will form relationships with the new nurses. Yet, I am overwhelmed  by fear. Fear of leaving. Fear of change. I have a ball of fear sitting in my stomach.

As we drive over, I contemplate all the changes in my life. How many institutions have I gone to in this exact way? I remember the first time in which I was sent to Elmcrest. I had the same ball of anxiety and fear in my stomach, wanting to run and hide. I remember the door slamming shut and knowing that this was it.When we got here, we are directed to North 4. The unit is locked. They have to call and someone on the unit will allow them to come through the doors. A key card or combination code is required to get in or out. I freaked out a little bit. What have I gotten myself into? A locked unit? No one told me about this. This was not part of the plan. Why would they lock a unit for rehab patients? We can't walk even short distances. We need help going from bed to chair. Certainly no one is in a condition to be leaving the unit. Even though I am absolutely terrified, I am excited too. I am now settled into bed. A nurse came in and did the usual intake. Tomorrow I will meet all my therapists, have evaluations by speech therapy, occupational therapy, and physical therapy. I am most nervous about speech therapy. I can say a few words at a time by talking over the trach tube, but this is the limited extent of my ability to speak. I am anxious to begin working and learning how to speak again. I feel very blessed that I have been given the opportunity to come here and get stronger. This is what I fought and advocated for. I am proud of myself for not giving in. One day at a time. Slow and steady wins the race.

Just arrived at Mount Sinai