I had my IVIg today. I have enough Igg for one more infusion, and then I either have to order more or stop the infusions. This is such a hard decision to make. My goal has always been to make it to Christmas. I was trying to hold off transitioning into hospice until after Christmas because it was very important to me to make it to Christmas and have an enjoyable holiday with my family. I have pretty much reached my goal and think that even if I were to go into hospice now, I'd still be here to enjoy Christmas. The hard part about all of this is deciding when to stop the Igg. I finished my last dose of IV antibiotics today. I have decided that this is my last dose of IV antibiotics. I won't be doing anymore antibiotics. Though this was a difficult decision to make, it is not nearly as difficult as deciding when to stop the Igg. Since September I've been fighting this infection. I have been on countless different IV antibiotics. Despite all the antibiotics, I still have the infection. Nothing seems to be killing it. The infection seems to start to get better when I start on the IV antibiotics, but somewhere in the 14 day course, the antibiotic seems to stop being effective, and the infection once again takes hold and gains the upper hand. I have just come to the point that it doesn't make sense to keep doing different IV antibiotics when they don't seem to be helping. It makes no sense to put these drugs into my body, medications that cost a lot of money, when they don't seem to be effective. There comes a point where you have to say, enough is enough. I am tired. My body is tired. I am the one that does all the medications. I don't have someone who does it for me, and as I grow weaker, as I decline and get sicker, even the simplest of tasks becomes overwhelming.
I tried to talk to Kathy again today about hospice and discuss with her that I was getting closer and closer to transitioning into hospice. She refuses to acknowledge reality. She wants to bury her head in the sand and live in denial. I know this is hard for her. I know that she has come to care deeply for me. I am not just a client/patient. I am more than that. I am like a daughter and a friend. She does not want to lose me, but denying reality is not going to help things. It won't make it different.
She looks at this as me giving up, throwing in the towel. But I am not giving up. Had I just been diagnosed and refused to even try treatment, that would be one thing, but I have done 6+ years of treatment. I have done IVIG. Most people do infusions once every 3 or 4 weeks, I do them once a week. I have given my life up to this disease. First I gave it my career in nursing, then I gave it my career in research and my Ph.D. I gave it animation and finally my tutoring. I have done the treatments,the tests, the medications. I have gone for 2nd and 3rd opinions and consults. And what have I gotten in return? She wants me to seek another opinion, but I have already done that many times. The only thing the doctors in Boston could offer me is more questions, no answers. If there really was hope that they would figure things out and find a treatment that would help me, I'd be more than happy to do it. I don't want to die. But, there are no answers. She says to me, "But they don't have a terminal diagnosis. They don't have an organism that is causing this severe infection." This is true. I could go to countless more doctors and undergo many more painful and invasive tests in hopes of having a diagnosis or coming up with a cause for my decline, but to me this is not important. It may make my treatment providers feel better. They will have answers and an explanation. They may feel less like a failure, but to me it is not worth it. The diseases and diagnoses they would be looking at are for progrssive terminal illnesses. Is it that important to have a reason why when there is no treatment? It won't change things. The result will still be the same. I will still be dying and there still won't be anything they can do to prevent it. The difference will be that I will have wasted some of the precious time I have left in doctors' offices or hospitals, undergoing painful and invasive medical procedures. For years I have gone from one specialist to another. I have heroically withstood procedure after procedure. I rarely cried or complained. I took the tests and treatments with strength, hoping that it would lead to answers, but it didn't. Now that my time is coming to an end, I dont want to waste the precious time I have doing procedures and tests. I want to spend the time I have with my family and friends, enjoying the time I do have and making memories that will last after I'm gone. It kind of reminds me of last summer when Abby got sick. The vet offered to do an X-ray and blood work and other tests to fully diagnose what was going on. When I asked how this would change her treatment protocol, I was told that it wouldn't. She'd be given the same medication. The difference would be they'd have a concrete clinical diagnosis. I chose not to have the tests done and instead just give her the medication. Why put her through those tests and be charged the extreme fee of having the tests when the treatment would remain the same. Even if I did all the testing, it wouldn't change the treatment. It may make my doctors feel better because they'll have a concrete cause of why this is happening, but it won't change anything for me. I will still be dying.
I understand that this is not a position that doctors are comfortable with. They went into medicine to save people. This is especially true because I'm so young. If I was 70 and had lived a good life, they would not have as hard a time accepting this as they do with someone my age who has not really even been given a chance to live. They feel powerless, and they feel like failures. But I don't view them as such. I am very grateful because they have given me more time than I would've had otherwise. Though the trach wasn't a cure, it gave me more time. Even an extra couple of months is something to be extremely grateful for, but it is important to realize that medicine doesn't have all the answers. It can't cure everything. There are times that things happen that we don't understand why. It may seem unfair. But I hold no anger at the circumstances. I am very grateful to have been given what I have. Medicine doesn't have all the answers and it can't fix everything. There is a time when you have to give it up to the Lord, and trust in Him. We like to think that we have control over all things. In truth, we have very little control over things.
I have found that how a person responds to me and the fact that I'm dying largely depends on how comfortable they are themselves with the topic of death. Death is a natural part of life. We are all dying. From the moment we take our first breath, we have already begun to work towards taking our last. Some of us are dying sooner than others, but the fact remains, we are all dying. It is impossible to escape this. Death is a natural part of life. While many view it as the end, in reality, it is just the beginning. I embrace this time of my life. I have struggled and suffered for many years now. My body has grown weak and no longer has the ability to fight. Instead, it embraces death as a freedom from the pain and suffering I have endured.
Right now life is such a struggle. Every breath hurts. The purpose of the trach was to increase my quality of life. Though I am grateful to have had this time, my time here on this earth is coming to a close. Every person has their line of things they are willing to tolerate, and the point at which they say enough is enough. I have reached that point. I am tired. I am weak. My body is weary and needs a rest. It is tired of fighting to live every day, every moment. I have fought so hard for many years, but now it is my time for peace, time for my suffering to come to an end. I do not have a quality of life. Kathy often says that she would never be able to do the things I do every day. If she would not want this quality of life herself, then how can she expect it for me? Do I not deserve to be free of suffering? I am not giving up. I have done treatment and therapy for many years, but what is the point if it has no benefit and only increases your sufferring? Don't I deserve to be at peace? She asked what terminal diagnosis I have. I don't have something concrete such as cancer. But I know that I am dying. The infusions are no longer working. All the medications I take and therapies I do seem pointless. If they were working, I wouldn't be in this position, and if they truly aren't working, what is the point on continuing them? There comes a point when you have to reach acceptance and give it up to the Lord. I am yours God. Your will be done. I know that I am powerless. I have no control over my life and death. If I am meant to die, nothing on this earth will keep me here. In the same way, if it is not my time, I will not go. Whether I go into hospice or not, will not matter. Going into hospice won't make or prevent me from dying. It will, however, determine my comfort level through my final journey.
The hardest thing about all of this is giving up the Igg. Logically, I know that it is no longer working. If it was, I would not be as sick as I am, but actually stopping the Igg is a difficult step. I don't want to die. If there was another option, if I were to get better, if there was a treatment, I'd be most happy. Since being diagnosed, I have fought for my Igg. To me, Igg is synonymous with life. No Igg is equal to sickness and death. Though I know it isn't working and doing no good, giving up the Igg is a true step of accepting that I will die. I know that when I stop the Igg I will get sicker and my pain will get worse. I am terrified of sufferring, of feeling like I am suffocating to death and not be able to do anything about that. This is what I am afraid of. I do not know what scares me the most, the idea of dying, or the idea of living indefinitely like this. I don't understand how people can say they wouldn't want to live as I do but then judge me and expect md to continue to suffer in this way. I have no quality of life. My body is dying. It is shutting down. It scares me to see how I have deteriorated. I can no longer shower myself. I am too weak. When I came home from rehab my weakness was due to muscles being weak. This is no longer the problem. The problem is not something that can be treated with physical therapy. It is a result of my body shutting down. My lungs are bleeding and falling apart. There is no way to treat this or fix it. Each breath is immensely painful. I can no longer do things for myself. I need help showering and dressing. I am no longer independent. I can't drive. I can't just get up and go somewhere whenever I want. I am reliant on others to get out of the house. I can no loner walk. I can't tutor. I tire so easily and after being awake for more than 2 hours, I am so tired that I must sleep. I fall asleep talking in mid-sentence. Technically I need to be vented, but I really don't want to go that route. I grow weary at having to do everything, care for everything myself. It is a daunting task. I ache. I hurt. I pray for relief. Hospice will give this to me. This is not easy. No person my age should have to be making these decisions. People make this process even harder by judging me. How I wish they could accept me and support me in whatever I decide is right for me.
Showing posts with label Infection. Show all posts
Showing posts with label Infection. Show all posts
Monday, December 5, 2011
Sunday, September 18, 2011
Whose Opinion is it anyway?
Have you ever noticed that everyone has an opinion about everything? This is what you should do; this is what you shouldn't do. This is what you should think, ect. This happens about everything - religion, politics, education, career choices, even medicine - what medicine you should take, what procedures you should have done, which doctors you should see. Granted, the main reason people do this is because they care.
When I had the trach, many people questioned whether this was best decision. It was done proactively rather than reactive. It was planned rather than waiting for an emergency. I remember my mom's initial response when I told her that the doctors wanted me to have a trach "No!!" It was a knee-jerk reaction . She didn't want her daughter trached or on a vent. I don't blame her. As you know, I've always had a "no trach" policy, so it must have come as a shock to her when I was actually considering it. After, people asked me if I had made the right choice. I did; I chose to live rather than die. You soon realize, however, that everyone has an opinion - what they would have done, or would do. In reality, they wouldn't truly know what they would do in the situation until they are actually in that situation. You can make all the plans you want, but reality is much different. One of the things many people said and continue to say is that I should have/should get a second opinion. At the time of the trach, I was in no position to be traveling to Boston for second opinions. I was on bipap continuously, hence the reason they were discussing a trach in the first place. Had I been stable, then yes, a second opinion may have been warranted; however, this wasn't an elective procedure. It wasn't something they did just for the heck of it. They did it because there were no other options. Had there been less invasive options, they would have gone with that. But they had run out of other options, and here I was fighting for my life and losing the battle. A trip to Mass General, just wasn't in the cards. There really wasn't a person to get a second opinion from, unless I wanted to take a chance on getting sicker and not making it. Honestly, even if I got a second opinion, what would it be? Would they say "no trach"? If so, then what would they suggest? Would they have a better plan? Or would they just be like - no trach, but we don't have any other options. This is most likely. We already knew that I couldn't remain on bipap indefinitely. They had tried to ween me, and that didn't work. Most likely, they would have more questions, no answers, and no solutions.
Kathy, my infusion nurse, thinks I should get all my care at Mass General. Though their doctors are supposed to be bigger names and more experience with complex disease, I have never once had a doctor in Boston who had answers and offered solutions. Rather, all I've ever gotten is more questions. "We don't know why this is." "We don't know what is wrong." Since we don't know what is wrong, we don't know what to do. It has always been a frustrating experience. But more than that, how practical is it to have my doctors in Boston. I can no longer drive myself and would have to find someone who could drive me. This entails them taking the day off so that I can see the doctor. If my doctors are in Boston, it will take me 2 1/2 hours to get there. This is not very practical when you're sick. I would have to plan it, and most likely this isn't possible. I can't travel the 2 1/2 hours when I am sick. I can't drive there, and most people can't just stop everything they are doing to drive the distance to get me there. Never mind what happens when I need to come home or if I don't get admitted. If I'm too sick, I'll still end up in the hospital here, and be seen by doctors who don't know me. When you get sick as I do, You go to the closest hospital. I can get sick very quickly. In the morning I could be fine, but a few hours later I am gasping for breath and needing to be intubated. There is no time to drive all the way to Boston. When I first moved home after graduating, I still got all my care at Baystate, which is 45 minutes away. I remember one time I had difficulty breathing and needed to go to the hospital. Mom drove me. I was gasping for breath and mom was trying as best she could to get me there. Finally as we hit Springfield I was too sick to continue and we had to get to the nearest hospital, which was Mercy. I was intubated shortly after getting in the ER. It was a scary experience for both mom and I. Her trying to drive and afraid she was going to have to stop and do CPR. When you crash as quickly as I do, you need to go to whichever hospital is closest to you. It is best if your doctor is on staff there so they are the ones treating you and making the decisions about your care, not someone who doesn't know you. It doesn't really help if you're in the hospital here and they're 2 1/2 hours away. They can consult, but they aren't actually seeing you, and who knows if the doctor actually does what they suggest. Gets to be one big mess.
Since being trached, I haven't done much. There were a slew of doctor's appointments I missed and should reschedule, but haven't. Part of it is because I just don't have the energy to go from one appointment to the next. The other, I just don't care. Even if they do have answers, what good is it if they don't also have solutions. So they give you another diagnosis, but they don't have a treatment, just more questions. Really, what good is that? I'm too tired to play the game. People ask, "did you talk to this or that doctor" "Did you get their opinion." No, I did not talk to that doctor. Personally, I was working on fighting to live and getting through the day. I know that chances are, right now, if I saw another doctor they would suggest pulling the trach. They'd probably feel it was unnecessary and overkill as treatment for the problem at hand. Of course, that is easy to say now that I am stable. They weren't there as I gasped for breath or when I was on bipap. Even if they had been, would they have had a better solution? If I was decannulated, what then? How would they treat it? More than likely I'd be back on bipap, unable to breathe, with no options available. They might have to re-trach me, and with all the complications of the first trach, I am certainly not up for a repeat experience. So excuse me for not racing after this doctor or that doctor. The time I have left is too precious to be wasted sitting in doctor's offices. Even if they offered a solution I'm not sure that I'd want to take it. A lung transplant might fix my lungs, but would the new ones be destroyed just as these ones have? Would I even survive? While some may not understand why I don't want to do anything and everything possible, such as having a lung transplant, it is such a gamble. There is no guarantee. It could make me sicker. It may be too much of a fight. I am tired and when my time comes, I want to accept it gracefully. I want to enjoy the time I have with my family and friends and not think about what could have been, but rather what is.
When I had the trach, many people questioned whether this was best decision. It was done proactively rather than reactive. It was planned rather than waiting for an emergency. I remember my mom's initial response when I told her that the doctors wanted me to have a trach "No!!" It was a knee-jerk reaction . She didn't want her daughter trached or on a vent. I don't blame her. As you know, I've always had a "no trach" policy, so it must have come as a shock to her when I was actually considering it. After, people asked me if I had made the right choice. I did; I chose to live rather than die. You soon realize, however, that everyone has an opinion - what they would have done, or would do. In reality, they wouldn't truly know what they would do in the situation until they are actually in that situation. You can make all the plans you want, but reality is much different. One of the things many people said and continue to say is that I should have/should get a second opinion. At the time of the trach, I was in no position to be traveling to Boston for second opinions. I was on bipap continuously, hence the reason they were discussing a trach in the first place. Had I been stable, then yes, a second opinion may have been warranted; however, this wasn't an elective procedure. It wasn't something they did just for the heck of it. They did it because there were no other options. Had there been less invasive options, they would have gone with that. But they had run out of other options, and here I was fighting for my life and losing the battle. A trip to Mass General, just wasn't in the cards. There really wasn't a person to get a second opinion from, unless I wanted to take a chance on getting sicker and not making it. Honestly, even if I got a second opinion, what would it be? Would they say "no trach"? If so, then what would they suggest? Would they have a better plan? Or would they just be like - no trach, but we don't have any other options. This is most likely. We already knew that I couldn't remain on bipap indefinitely. They had tried to ween me, and that didn't work. Most likely, they would have more questions, no answers, and no solutions.
Kathy, my infusion nurse, thinks I should get all my care at Mass General. Though their doctors are supposed to be bigger names and more experience with complex disease, I have never once had a doctor in Boston who had answers and offered solutions. Rather, all I've ever gotten is more questions. "We don't know why this is." "We don't know what is wrong." Since we don't know what is wrong, we don't know what to do. It has always been a frustrating experience. But more than that, how practical is it to have my doctors in Boston. I can no longer drive myself and would have to find someone who could drive me. This entails them taking the day off so that I can see the doctor. If my doctors are in Boston, it will take me 2 1/2 hours to get there. This is not very practical when you're sick. I would have to plan it, and most likely this isn't possible. I can't travel the 2 1/2 hours when I am sick. I can't drive there, and most people can't just stop everything they are doing to drive the distance to get me there. Never mind what happens when I need to come home or if I don't get admitted. If I'm too sick, I'll still end up in the hospital here, and be seen by doctors who don't know me. When you get sick as I do, You go to the closest hospital. I can get sick very quickly. In the morning I could be fine, but a few hours later I am gasping for breath and needing to be intubated. There is no time to drive all the way to Boston. When I first moved home after graduating, I still got all my care at Baystate, which is 45 minutes away. I remember one time I had difficulty breathing and needed to go to the hospital. Mom drove me. I was gasping for breath and mom was trying as best she could to get me there. Finally as we hit Springfield I was too sick to continue and we had to get to the nearest hospital, which was Mercy. I was intubated shortly after getting in the ER. It was a scary experience for both mom and I. Her trying to drive and afraid she was going to have to stop and do CPR. When you crash as quickly as I do, you need to go to whichever hospital is closest to you. It is best if your doctor is on staff there so they are the ones treating you and making the decisions about your care, not someone who doesn't know you. It doesn't really help if you're in the hospital here and they're 2 1/2 hours away. They can consult, but they aren't actually seeing you, and who knows if the doctor actually does what they suggest. Gets to be one big mess.
Since being trached, I haven't done much. There were a slew of doctor's appointments I missed and should reschedule, but haven't. Part of it is because I just don't have the energy to go from one appointment to the next. The other, I just don't care. Even if they do have answers, what good is it if they don't also have solutions. So they give you another diagnosis, but they don't have a treatment, just more questions. Really, what good is that? I'm too tired to play the game. People ask, "did you talk to this or that doctor" "Did you get their opinion." No, I did not talk to that doctor. Personally, I was working on fighting to live and getting through the day. I know that chances are, right now, if I saw another doctor they would suggest pulling the trach. They'd probably feel it was unnecessary and overkill as treatment for the problem at hand. Of course, that is easy to say now that I am stable. They weren't there as I gasped for breath or when I was on bipap. Even if they had been, would they have had a better solution? If I was decannulated, what then? How would they treat it? More than likely I'd be back on bipap, unable to breathe, with no options available. They might have to re-trach me, and with all the complications of the first trach, I am certainly not up for a repeat experience. So excuse me for not racing after this doctor or that doctor. The time I have left is too precious to be wasted sitting in doctor's offices. Even if they offered a solution I'm not sure that I'd want to take it. A lung transplant might fix my lungs, but would the new ones be destroyed just as these ones have? Would I even survive? While some may not understand why I don't want to do anything and everything possible, such as having a lung transplant, it is such a gamble. There is no guarantee. It could make me sicker. It may be too much of a fight. I am tired and when my time comes, I want to accept it gracefully. I want to enjoy the time I have with my family and friends and not think about what could have been, but rather what is.
Friday, September 16, 2011
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.
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.
Saturday, August 21, 2010
Warning Signs of PIDD
For most people, the common cold is rarely more than a minor inconvenience; however, for patients with PIDD the common cold can be a life-threatening event. In a person with a normal, healthy immune system, the immune system protects them from infection. In people with PIDD, the immune system is either absent or does not function properly. This causes them to be more susceptible to infection, and when they do get infection, they are not able to fight it off.
How does a person know when it is a typical infection or something more serious such as a primary immune deficiency? According to the Primary Immune Deficiency Foundation, the warning signs of PIDD are:
- Recurrent - the infection keeps coming back
- Persistent - won't clear up, or clears very slowly
- Severe - requires hospitalization or intravenous antibiotics
- Unusual - caused by an uncommon organism
- Runs in the Family - others in your family a similar susceptibility to infection
If the answer to any of these questions is Yes, then it is important to check with your physician for the possibility of a primary immune deficiency.
Early diagnosis and treatment is necessary to ensure a good quality of life. With proper diagnosis and treatment, patients can live full and independent lives; however, without this, patients can develop serious and debilitating illnesses.
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