De Nile.. Not just a river in Egypt

Some days, I think one of the hardest things about this is other people's denial. I know that this is hard for those that care about me. No one wants to lose someone close, that they love, especially when that person is so young and hypothetically should have the rest of their life left. But this is happening. Being in denial doesn't help, and isn't going to change anything. They don't want to face reality because it hurts. They desperately want to believe that I'll get better. I understand this, but not wanting it not to be true, doesn't change anything.

There was a bit of a scare Thursday night. We lost power, causing the oxygen to turn off. When this happens, it must be reset for it to turn on and work again. Thankfully Prakhar woke up and noticed it wasn't running. He went downstairs and woke dad up. Although neither of them could figure it out, dad had the idea to wake me so that I could fix it. When we talked about it, dad told me that he was afraid to wake me because he was scared that I would already be dead when he went to touch me to wake me up. He was so relieved when I awoke. Of course, I didn't really think anything of it or the effect it had because to me, it wasn't a big deal. It was the middle of the night, and I was asleep. My o2 sats did drop, though I don't think I was long without it; however, I didn't really consider that had I not received oxygen for an extended period, I could die.

I don't ever really think about the effect this has on dad, me being so reliant on oxygen to survive, that is. Most of the time he seems clueless and doesn't get it. Often it frustrates me and makes me angry. When I had the trach put in, he visited twice, and he never called to see if I was okay. This infuriated me. Finally, I came to the conclusion that he just couldn't acknowledge it because then it would be real, and he couldn't handle that. He needed to be in denial. Today he talked to me about advertising for tutoring to get more clients. It's as if he doesn't get how sick I am, or that I am getting sicker. I couldn't possibly take on more students in my current state. I haven't told him about palliative care and have no idea how to do so. I know that at first he won't understand it. He'll probably deny it and pretend that nothing is wrong, but at the same time, I can't not tell him. He needs to know. I especially fear his reaction. I know how upset he was before the trach, and the idea that I would become an invalid. He doesn't want to take care of me. Not that he takes care of me, because he doesn't provide anything for my care. Yet, that is exactly what I have become, an invalid, and I fear he will insist on me finding some other place to live.

Kathy is another person in deep denial. I told her today that I had been placed in palliative care and discussed the future, or at least tried to, but she is insistent that I won't deteriorate, that I will get better. She doesn't want me using the wheelchair because she doesn't want me to use it as a crutch and get used to using the wheelchair instead of walking. She wants me up and walking, which is fine and understandable, but right now I can't get around without the wheelchair. I can walk short distances with the walker, but tire easily and get short of breath. She is of the belief that if I just try hard enough, I'll get better. I just have to be dedicated, put in the hard work, and exercise. But dedication is not going to change things. I understand that she wants to see me get better. She cares for me. I'm young and no one wants to see me get sicker and die. Even my doctors have a hard time with it. They aren't going to give me a time frame. Some don't acknowledge where this is leading. They don't want to give a time or declare me terminal, partly because of my age. It would be easier if I was old and had lived my life. Plus this disease is not concrete. I don't have cancer where it is fairly easy to say I have "x" long to live. This is ambiguous. Kathy is in this trap. Not acknowledging it, however, and being in denial only makes this process harder. Partly because when she insists I will get better, I have a harder time accepting things. I try to convince myself I'll get better. In addition, I fear that when I do go into hospice, she'll be upset with me. She'll view it as me giving up, in essence killing myself. This is not so. I've fought long and hard, but I am becoming very tired. Honestly, this is not a life. I am just existing. I am limited by the things I can do. I am basically housebound. This is not the life I wish to lead. If I got better, than yes. But I know that the chance of this happening isn't too great. I can't imagine living like this for another 20 years. Heck, I can't imagine even 5.

I am afraid. I am afraid that Kathy will be upset. I worry about my brothers and sister and the effect this will have on them, and what it will be like for them to lose their sister. It's not fair. They shouldn't have to go through this. They haven't known me to be healthy in years. Dennis may only barely remember me healthy. Brenndan doesn't remember a time when I was healthy at all. It makes me sad and angry that so much has been taken from them. They haven't gotten to live a normal life.

Everyone else in my family is also in denial. They don't acknowledge how sick I am. To some extent, it is because they are conditioned. In their minds, this is what I do; I get sick. I may end up in the hospital, but I always get better. They are desensitized. When my uncle came to help build the ramp, he expected it to be short-term. I wasn't really going to need it for long; maybe a couple of weeks, a month or two at most. When I discussed going to the track to go around in the wheelchair, my aunt said I would get out of the chair and run. I haven't been able to run in years. I haven't been able to go places like the mall for at least a year because of the amount of walking involved and the fact that I just couldn't do it. None of my aunts, uncles, or cousins have called to see how I am doing. They don't realize the seriousness of this. My aunt lives 30 minutes away. She drives by my house to get to church every week. Not once, has she stopped to check in and see how I am doing. They are all very selfish and self-centered. I've been fighting for my life, had a trach put in so that I can breathe, but they can't bother to take the time to see how I am doing. It angers me. I also feel sad because at some point, it will be too late, and they will have missed this opportunity, time to spend with me.

I think one thing that is the most frustrating is those that don't acknowledge this at all. They tell me, "Don't think like that... That's not going to happen... You don't need palliative care... You'll get better... You just have to want it... You have to try..." The best yet is, "You just need to pray and ask God to heal you... Obviously you haven't believed enough... Give your life to Him and He'll heal you... He heals all who ask..." This is not due to a lack of faith. I do pray, but prayer alone cannot fix all things. Not everyone is meant to be cured. I do try; I am motivated. If I get better, I will be the happiest person, but there are some things you cannot fix. I do have faith - a strong faith, but some things aren't meant to be. This is nothing I did or am doing. I know this is hard. It's certainly not easy for me. I pray that others can see the way things truly are, leave their denial, before it is too late.

Infection

I have my first infection since getting the trach and it's really difficult. At first everyone wanted to know how I knew that I had an infection. Trust me... I know my own body. But more than that, my trach has changed. It is disgusting. Really thick, yellow mucous, and it stinks - smells like dirty washcloth meets dirty socks. Or maybe a better way to describe it is that it smells like Abby after she's been swimming. Very musty and gross. Now I can't really smell. So for me to smell, means that it is quite bad. Right now, I'm cleaning the trach every few hours. It just gets so thick and mucousy that I have to clean it. I'm also having to suction and I never did before. Also, I've been really short of breath. Sometimes too short of breath to wear the pmv to talk. It's definitely a difference from trach care when I was in rehab. When I would do trach care, it was slightly mucousy, but not overly so, and it certainly didn't smell. This normal and to be expected; nothing like it is now. Besides, I know... just as I knew before the trach, I know now. In fact, I think it is more obvious now because I see it when I clean it. I notice a change. Since the trach comes directly from my lungs, there is no question that that is where the infection lies. While it's good to be able to prove it, to be able to do a sputum culture, it's also harder because it's so "in your face." There's certainly no denying or ignoring it. The hard part about this is though I knew that I'd still get an infection at some point, I hadn't had one in a while, and maybe part of me hoped that maybe I wouldn't get an infection, that the trach had solved all of that. I guess, I also on some level, feel that getting an infection is my fault. I'm the one that cleans it. Yet, I guess I know this isn't true, that it's not my fault, an infection was inevitable, especially since having a trach makes you more susceptible to infection. I do clean it, and am responsible for it, but I take excellent care of it. Just like I take excellent care of my port. When I was in rehab, they'd train the other nurses or have other nurses come and watch me clean it because I did such a good job with it. Just as getting an infection before the trach wasn't my fault, and something I had no control over, neither is this my fault. Still, it is hard.

So Monday, I called the pulmonologist's office to get an appointment, but was told there were no appointments this week. Well first of all, there has to be appointments. There may not be any regular appointments, but there were emergency appointments. There has to be. They have to have sick patient appointments. But instead of arguing, I just asked them to have someone call me back. It wasn't an emergency and I didn't need to be seen. All I really needed was for them to order a sputum culture. I knew they couldn't put me on anything until they had a culture done anyways. Then I called Dr. Constantino's office to see if I could make better headway there. Turns out he's on vacation, and won't be back until next week. Great... Just great... Now I know he isn't really on vacation. He can't; he is the only trach doctor in the hospital. If a patient needs a trach, he has to do it. If a patient has an emergency, he has to be there. There isn't anybody else, and he doesn't have another doctor, nurse practitioner, or PA he works with. When I asked the receptionist what I should do, she told me I had to either see my pcp, or go to the ER. Well the ER would do me no good. The doctors there don't know anything about trachs. They are completely incompetent. The past times since I've gotten the trach that I was in the ER, both times for problems with the trach, they did absolutely nothing. When I had bleeding from the trach I was told that this was normal. When I had difficulty breathing, I was told that I just needed to get used to it. In fact, it turned out that the blood I was coughing up was from my lungs and vessels in my lungs had to be cauterized. The shortness of breath was caused by inflammation, which had caused an obstruction. So I don't have much hope that they'd be of help this time either. Besides, I just spent nearly 3 months in the hospital, I most certainly do not want to go back. Next, I tried Dr. Lafrenier's office because most other trach patients see an ENT to manage their trach. He is my ENT and it would be good to have him as back up in case this happens again, especially since this is the second time Dr. Constantino has been on vacation. However, I struck out here as well. Dr. Lefrenier was also on vacation and wouldn't see me in regards to the trach anyway because he hadn't put it in, which is a load of BS, but nothing I can do until he's in the office anyway. Thankfully, Diane, the PA in Dr. Wasserstein's office called me back and ordered the sputum culture. A sputum culture with a trach is much easier than when you have to just cough it up. My problem in the past had been that I'd be bringing up tons of mucous, but soon as they'd say "sputum culture" all sputum production would cease. At least this way, I had easy access. I had what was on my inner cannula, and if that wasn't enough, I could suction. Having never done a sputum culture before, however, made me nervous. In my opinion, it would have been ideal for me to either go into the office so that someone there could collect the sample or have VNA do it; then I know it'd be done right, and I wouldn't have to worry about somehow not doing it right. But to be honest, the doctor probably didn't know how, and VNA couldn't. So it was up to me. My biggest worry is that I wouldn't have enough for them to culture. Of course when I thought about it, if that happened, I'd just repeat it. It's not like I would be lacking in sputum or that I wouldn't be able to obtain any more. Basically what I did was get the sputum from around and inside inner cannula with a q-tip swab from the trach cleaning kit. I also swabbed inside trach and even coughed into cup. Looked like plenty to me. In the meantime, while waiting for sputum results, I was put on doxycycline and ceftin in case of infection. As I said, there was little doubt that I had an infection. Part of me wanted to put a warning saying "Caution! Do not inhale or sniff." Just unscrewing the lid would knock someone out with the stench alone. Oh, it was disgusting, nauseating. Another reason I knew it had to be an infection was that I had eliminated any other cause. I had completely changed all my equipment and tubing. Anything that couldn't be completely changed was boiled to disinfect. I thought of changing the inner cannula. I have two extra trachs and using the inner cannula from one would be okay, but if it was an infection causing the stench, changing the inner cannula wouldn't help. All that it would do is make the new inner cannula gross too. Some people on the trach board suggest doing a complete trach change, but I've never been taught how to do this. When I saw Dr. Constantino, I asked how often he changes trachs because the box said it should be changed once a month. He said he changes them every six months. Though at most it is an office procedure, many moms and other patients change their or their children's themselves. He said he prefers to do them in surgery at the hospital especially after all the bleeding issues I had, he wants to make sure at least the first time it is changed that he is at the hospital where if something does go wrong or I have a lot of bleeding, he can fix it. Though changing the trach doesn't seem too terribly difficult, it is not something that I just want to do myself without having been taught or shown how to do it.

Finally the results came back. As expected, it did grow bacteria. Honestly, had they said it was negative, I would've had them do another. All I had to do would was take out my trach to show them - the look and smell alone made it obvious that there was an infection. When I called the doctor to get the results, she said she was going to call in an order for ceftin. I get really frustrated by doctors. They write orders to treat you without having looked at your chart first. I'd been on ceftin for 5 days. At the time of the culture, I had been on it for 3. Obviously, this strain of bacteria was resistant because if it was going to work, it would have already begun to do so. In addition, she had been the one to call in the antibiotics previously; she should've known I was already on cefin. I then told her how oral antibiotics weren't effective because I didn't absorb them properly, and IV antibiotics are best. Since I have a port, there is no reason to not get them at home. No reason to have me get so sick that I need to be hospitalized. It is better to be proactive, start the IV antibiotics, and prevent a hospitalization, especially since I am more at risk of getting an inflection in the hospital. With the trach, my lungs are more stable. Thankfully she agreed.

Though I love Kathy, my nurse, she can be quite frustrating. She has strong opinions, some of which I don't agree with. She had screwed up the IV Benedryl and my chance of using it because of her belief that it could cause a potential side effect in the possible future. When I told her about the IV antibiotics, she was not supportive and in fact she suggested they do a second culture because mine may have been contaminated. Her argument was that it should've been done at the doctors office or by the VNA. Personally, I was insulted by this. Originally, I had wanted the doctor's office or VNA to collect the sample, but neither would do it. The only reason I wanted them to do it was that I had never done it before, and they had more experience. But because they wouldn't do it, I had to. I was a biology major and had worked with cell culture before. Plus, it's not exactly rocket science. I swabbed the inner cannula both outside and in. I swabbed inside the trach, using sterile technique, and coughed into the cup. Everything I had was clean and sterile, so there was no chance of contamination. Anything that was cultured was from my own body. If a doctor or nurse had done it, there would be the chance that they could contaminate it with their own germs, by breathing on it. So I was kind of insulted to have her suggest that I had not done it right. Had a second culture needed to be done, it would have postponed treatment. By the time it had been done, sent to the lab, and results obtained, it would've been Monday, and I would've been sick for over a week. In my opinion, prompt treatment was important and the sooner I got on the IV antibiotics, the better. I was really trying to avoid the hospital. Thankfully, she didn't call my doctor. My doctor was able to get it set up through my oxygen company. This was best because they were able to get it to me that night, whereas had they used BioRx, though I love them and am happy with the IVIg, I wouldn't have been able to start until it had been mailed to me. I am proud of myself for advocating for my care and getting what I needed. I am very glad I did because my lungs have gotten worse. I am short of breath and not really able to use the pmv. In addition, I began running a fever. So while Kathy can question whether I had an infection, it was obvious I did. I know my body, and a change in my trach indicates an infection. I know when I have an infection and when I do not. It's more obvious with a trach because the mucous coming up is directly from my lungs. So any indication of an infection is from your lungs. The frustrating part is that I've only been home two weeks and already have an infection. I didn't when I was in rehab. One of the tenets is coughing a lot, so I am concerned I got it from him, but who knows. Just hope this won't be a trend. I know I'm at greater risk since I now have the trach and because I'm in contact with many more people and all the potential germs they carry. In rehab I was fairly secluded and protected. But I can't exactly live in an institution.

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.

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

Trach Surgery. Time to throw away the plan...

Tuesday I had surgery to put in a smaller trach. Well, I had a lot of problems with bleeding and something that was obstructing my airway, so the doctor decided the best thing would be to do a bronchoscopy, to take a look and see what was going. on. For this, the plan was to put me to sleep, do the procedure, and fix whatever was going on. I was quite nervous as waking up from the previous surgery was a less than stellar experience. After surgery, according to the plan, I would go to the PACU and after I woke up, I'd go home. Things didn't go exactly as planned. Instead of waking in the PACU as was planned, I woke up in the ICU. I don't honestly know what went on, but my doctor decided that he wanted me to stay in the hospital for observation. I guess he did a lot of manipulation of the trach while in surgery. There was also a lot of bleeding. He cauterized the blood vessels that were bleeding, however, he said it doesn't seem like I heal properly. Every time he went to cauterize the blood vessel, if he then touched it, it would start bleeding again. He is not exactly sure why this is occurring, but this is what is causing the bleeding and preventing the site from healing properly. He thinks it may be because of the prednisone, but I don't believe this theory. I doubt it for a few reasons: one, I've been on long-term prednisone before and not had this type of effects; two, I'm on only 10mg of prednisne, which isn't a really high dose; three, I had this bleeding problem before I started the prednisone. Before surgery he had me go for blood work. He tested my  PTT, which tests the time it takes for your blood to clot, hemoglobin, and hematorcrit. Interestingly, my PTT was normal. My hemoglobin and hematocrit were low. Having my hemoglobin and hematocrit to be low, was not surprising since I have been bleeding for over 3 weeks; however it was surprising to have my PTT to be normal; it would be expected that all this bleeding would be because my blood was not clotting. If this were true, my PTT would be low. The doctor also said that the obstruction was caused by severe inflammation.

With all the bleeding and everything else that occurred, he wanted to keep me overnight where I could be closely monitored and observed. I had a LOT of pain, more than the original trach surgery, which wasn't expected since no incisions had been made. The doctor explained that this was due to the fact that he did a lot of manipulation. I also wasn't able to swallow because of all the swelling. The first day was extremely hard because I was in such extreme pain and quite out of it. Today the pain was manageable and I was able to eat normally. I had a lot of bleeding the first day, he had used a special type of gauze around the trach site, which causes blood to clot. It seems to be helping since I am not coughing up as much blood, and when I clean the trach there is less blood in it.

The original plan was to stay over the weekend and be discharged today (Monday), but as I said before plans often get thrown out the window. I mentioned to the nurse that we were trying to get me into rehab, but had not been successful because of insurance. The discharge coordinator said that she didn't see a problem. I will be going to Fox Hill, a rehab facility, either tomorrow or Wednesday, depending on when they have a bed. I will get my IVIg tomorrow. I am somewhat hopeful, but I'll believe it when I see it. We'll see...

Trach Surgery

Tuesday I went in to have my trach downsized from an 8 to a 6. Supposed to be a simple thing, but I'm a true zebra and whatever is supposed to be simple is not. First of all, I now understand HoJo's anxiety when she had her bone marrow biopsy and she couldn't have her passy meir valve. With me since I can't yet use the passy meir valve, I have a writing board and pen. You write on the board (kind of like etch-a-scetch) and press a button and it erases it. Anyway this is my only means of communicating currently. I obviously couldn't have this in surgery and this made me very nervous because I had no way of communicating with anyone at all. At one time, just before they put me out, they had the trach mask on but it wasn't on right or something was blocking the trach, or something, but I couldn't breathe right. Well the problem was my arms and hands were all wrapped in for surgery so I didn't fall off the table and so I couldn't adjust it myself, and I couldn't get the nurses' attention or the anesthesiologist. I started freaking out and finally they figured out what was up and fixed it, but for a moment it was quite scary.

I never deal with anesthesia well, not even since birth. My first surgery was at 7 months. They gave me anesthesia then and they give it to me now and it never fails, I wake up crying every time. After the initial trach surgery I was extremely disoriented. I didn't know that surgery was over or had even begun. I was on the vent and because I was so disoriented I fought the machine terribly. I finally calmed down once I figured out where I was and what was going on. This time I asked the nurses to make sure they told me where I was and that surgery was over so that I wouldn't be disoriented after. This helped. But I was told that there wouldn't be any pain. Well I knew this meant I would have some pain, but nothing is pain free and doctors don't know what they are talking about. But oh, my God, I was in extreme pain. 2mg dilaudid, didn't touch it. Finally after another 2mg it was starting to be under control. He had to use a lot of stitches because apparently there was a lot of bleeding. So that is one source of pain. I also had a lot of swelling and so initially couldn't swallow even water. They gave me sips of water and I ended up choking. I also woke up with horrible coughing. I kept coughing and coughing, these horrible whole body coughs where you can't catch your breath at the end. You feel like you're coughing your insides out. This of course hurt like hell and I was coughing up massive amounts of blood - totally not cool. Every breath I took, I ended up having the horrible coughing fits. The only thing to avoid them was to not breathe, and that wasn't exactly a legitimate option. So, yeah, after surgery was not fun.

I had so much difficulty with my breathing and it was getting to be 5 o'clock, when the nurses want to go home. Supposedly they had no way to directly admit me so they sent me to the ER. Well the ER was packed, but thankfully I got right in, being a day surgery patient and all and having difficulty breathing. But once in the room, that was a different story. I had the same doctor I had last week when I had to go in with the bleeding. He is a real asshole. Thinks he knows everything, but in truth knows nothing. He's new and honestly that just makes everything worse. They didn't even call my pulmonologist. Gave me some pain medication and some ativan and that's it. Didn't listen to my breathing. Didn't pay attention to the fact that my sats were bouncing from 79% to 90%. Yes, the 90% is ok, but the 79% not so much. We found out I had a fever before surgery of 100.8. This is extremely high for me because 1) my normal temp is 96.5 2) I never run a fever even when sick, so if I do, it's quite alarming. Based on this, we knew something was amiss. After surgery my temp had gone up to 101.6. Definitely not good. The doctor didn't even draw blood. He did do a chest xray, which came back clean, but then a chest xray is only going to show pneumonia, not much else. He determined that this was just anxiety and I just should go home. So home I went. I didn't actually get home until midnight. It was a long day and they never resolved my difficulty breathing.

Things are Never Easy

I was discharged from the hospital a week after having the trach placed. So I was discharged on last Thursday. Since then, life has been a collasal horrible disaster. They basically discharged me without any proper discharge plan. They were supposed to downsize the trach to a 6 so that I could use the passy meir valve and talk. Remember this was supposed to make the quality of my life better. Well, the surgeon decided that the trach was too new and he did not want to downsize the trach for another week. Well we will skip ahead in time to today when we called and guess what.... the doctor is on vacation this week. So is my trach going to be downsized so that I can use the passy meir valve this week? That would be a giant no because the doctor is on vacation. Can I scream? Oh wait, I have no voice! I can't even do that. And while I was told that this was a simple office procedure, guess what I find out. It is day surgery at the very least. They will bring me in, change the trach and it may be a few hours or I may need to stay over. Let's count on me needing to stay over because that is how my life is. And honestly I just want to be sure I can use the passy meir valve and talk. Because this not being able to communicate sucks and is just not fair. Just sayin'

So back to the story. The company that previously handled all my o2 needs does not do trach care or anything with trachs. Ok, understandable. Trachs take special consideration and are more complicated than plain just o2 needs. So one would think before being discharged from the hospital they would set me up with the o2 needs and humidification that I need with a trach. Also, one would think they would provide me with what I need for trach care. For those who don't know about trachs, they obviously have to be cleaned and taken care of. Well, none of this was taken care of. I was sent home without any humidification for my o2. This caused me to get very dry and that caused other problems. Also, I was sent home with 2 trach cleaning care kits when discharged. Since PromptCare, my previous o2 company could not provide my needs, it was set up that Apria would take over. Well Apria never got the proper authorization, scripts with specific o2 needs, ect. and so they never set things up. Anyway.... VNA came out Friday and were appalled that I basically had nothing - o2 wasn't set up and had no trach care kits. It was also determined that I should've been sent to rehab not directly home since I have not learned how to live with a trach, nor care for myself with a trach, and after having the trach put in, I'm sufficiently weak and really can't do much. So, yes, I need rehab. We were told to go back to the hospital and they would admit me and arrange for rehab. Well I never actually made it into the ER. I sat in the waiting room for several hours while the charge nurse made some phone calls and tried to arrange for the o2 needs with Apria. We all know that it is near impossible to be admitted for rehab on a Friday afternoon at 2pm. So we were assured that Apria was going to come and by 7pm when they hadn't, we were back on the phone trying to get the humidification I needed to get through the weekend, since nothing was going to be done until Monday. In the end, we went to the ER and picked up some humidification bottles to attach to the liquid tanks. We rolled one liquid tank into my room and attached the humidification bottle attached to the trach mask. This gives me the ability to move about a foot and a half. Basically I'm stuck in my room. So much for making my life more mobile.

On to Saturday. The VNA nurse comes again. At this point I have used all the trach care kits given to me because my trach keeps getting clogged with huge blood clots that require me to take the trach tube out and clean it because I can't breath through these clots. The nurse calls the dr that put it in (yes the doctor that is currently on vacation) and he says to go to the ER. So off to the ER we go. Also decide to mention to the ER that despite 80mg of lasix my feet are so swollen with severe edema that I can't walk and nothing fits on my feet. Oh, but does the ER want to do anything? nope. They give us a few more supplies and tell us that after talking to Dr. Constantino (the dr that sent us to the ER) that coughing up blood is normal for a new trach. (then whey did he send us to the ER?) They did do a chest xray and that is all fine. So we left with one more trach kit, some ampules of saline to squirt in my trach, and a few more supplies  to get through the weekend. Apria still has not come with o2 or supplies.

So we get through Sunday. I sleep and watch tv because there isn't much else I can do. It is now Monday. We try to get me into rehab. The VNA and my pcp are trying to work together. There is a rehab facility in town that does pulmonary rehab that would be perfect. Guess what? Medicaid won't cover skilled nursing care. haha. Life is such a collasal joke. I can't get into rehab because it isn't covered by insurance. Did I mention that Apria still hasn't come. The pulmonologist is supposed to be signing and faxing over orders so they can deliver what I need, but yet it still hasn't been done. We have been making phone calls all day. My pcp's suggestion was to go back to the ER, to which we siad no because they aren't even going to treat me but rather they will just send me home again, so what is the point of sitting there for hours. Now it is 4 o'clock and despite countless calls made by my mom and VNA since I have no voice, still no change. VNA is trying to get the pulmo to direct admit me and finally do the job they should've done originally. Yes, some of my doctors suck. Some of them are great and are trying their best to move mountains and get things done. My VNA nurse is an angel and really couldn't do more than she is.