It has been a tough couple of days. For some reason my pain has been completely out of control. Judy, my palliative care nurse was able to get Dr. Giannini to write for the IV Benadryl. As I've said before, the IV Benadryl helps make the dilaudid more effective and last longer. I was getting IV Benadryl with the IV antibiotics, but since I won't be getting any more IV antibiotics, I needed it to help with my pain. It took many days to try to arrange it. First, for some reason it was difficult to get the order to professional home care. They faxed it multiple times, but for some reason, the pharmacy didn't get it. Then, it was a task to get it and have it delivered. I was in such severe pain that I was crying. I couldn't sleep as I was woken up by the pain shooting through my body. Each breath is pain staking. Even the pain medication doesn't touch the pain. I worry that I'm becoming dependent and that is why it is growing less and less effective, but the pain is getting so much worse. I know that soon we will have to change to either liquid or IV medication. It frustrates and scares me.
I had another episode of bleeding from the trach. I didn't do anything for it because I know there is nothing they can do. I know that I will not bleed to death and it looks worse than it is. You never get used to coughing up blood. My cough is worse as well which proves to me that once again the IV antibiotics didn't kill whatever it is in my lungs. My sats have been low as well. I am on 10L and can't really go any higher. I was in so much pain yesterday that I couldn't go to the movies with mom as we had planned. I know it hurts her to see me in pain.
I met with the hospice team on Thursday. They would like me to meet with Dr. Steingart before stopping the infusions. They talked with my pulmonology team, who of course said that they feel that my condition is not terminal. Even though my condition continues to decline, they refuse to see it. They then called Dr. Steingart whom I haven't seen since I got back from rehab, at which point I wasn't as sick. He hadn't known about my deterioration. Obviously, he was caught off guard since last I was doing better and the trach had helped my breathing. When they asked him about life expectancy if I came off Igg, he was unable to give a fixed amount of time. I know that it's okay because Dr. Giannini is the main person managing my care and she is able to sign the paperwork. The hospice team does want to make sure we have exhausted all options of treatment. I wish that we could find something that would help and make a difference. It is my one true wish. But I don't want to keep suffering. I worry this will keep me off hospice. I don't want to be on hospice if there is hope in something else, but I can't live like this either - with every breath being agonizing. I pray to breathe easy.
Another cyster (person with cystic fibrosis) died last night. Cystic fibrosis is a genetic disease that because of a gene mutation they have no chloride ion channels in their cells. This causes their mucous to be very sticky. They have a lot of lung problems. They get a lot of infections because their mucous is so thick and sticky that they can't cough it up. The many infections damage their lungs, somewhat the same as me. It is almost inevitable at some point they will require a double lung transplant as their lungs go into lung failure. For some, they get too sick to qualify for transplant. Others, for some reason, may not be candidates. In cases such as these, they die at a young age. Hannah was 20. It makes me so sad to think of all those that have died way before their time. I think of many others with different lung diseases that cause them to die young. It's just not fair. This is a world in which I wish we had more answers, more solutions. Medicine has come a long ways over the years. What used to be open heart surgery is now done laparoscopicly. Despite the advances, still many die too young. I grieve for all the mothers and fathers, sisters and brothers, family members and friends, boyfriends and husbands, who are taken from this world too young. They are such wonderful amazing people, whose lives are cut short. How I wish for me and those like me, there were ways to prevent this and give them the opportunity everyone deserves, the opportunity to live life.
Showing posts with label Treatment. Show all posts
Showing posts with label Treatment. Show all posts
Saturday, December 10, 2011
Monday, December 5, 2011
Transition to Hospice
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.
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.
Wednesday, September 21, 2011
The Blame Game
Medicine today is much different than it once was. It used to be that you had one doctor, a general practitioner. They handled all aspects of your care. When you got sick they admitted you to the hospital, and they saw you while you were in the hospital. If they really got stumped and in over their head, only then, they would refer you to a specialist. They did not farm you out at the easiest possible second. They took care of you themselves. Often whole families from grandparents all the way down to grandchildren, all saw the same doctor. The doctor was in many ways, part of the family. This is no longer true. The only type of doctor this still applies to is a pediatrician. The only way you see your doctor while in the hospital is if that doctor is a specialist and he has privileges at that hospital. For the most part, however, you do not see your doctor. Decisions about your care are made by hospitalists. They do not know you or your medical history. If you're lucky, they will have read your chart, but most of the time, they haven't even done this. You will probably have several different hospitalists throughout your stay. You may get one that lasts for a week and then changes. You may have one during the week days and a different one on the weekends. Depending on the hospital, you may even have a different one nearly every day. If you're in a teaching hospital, you most likely will have a team of doctors. The residents will be the ones who actually evaluate you; then they present your case to the attending. You may not know who your doctor is, seeing so many different faces throughout the day, not knowing who is who.
One of the problems with medicine today is a lessefair mentality. No one wants to take responsibility. If you're a complex patient with many different medical problems, as I am, you have a slew of doctors, each with their own specialty. Often I feel as if I am in the middle of a circle of doctors. I begin spinning around and around, faster and faster, looking toward the circle of doctors that seems to be getting larger and larger as I rotate going faster and faster. I become more and more confused not knowing who to turn to or where to go. Everyone has the "not me" attitude. No one wants to take ownership. No one wants to do the work. Instead, they pawn it off to someone else in a different specialty. You have problems with bleeding - not my job says the immunologist, and he pawns you off to the hematologist. It might be related to a mitochondrial disorder - not my job, see a neuromuscular doctor. It could be alpha-1-antitrypsin deficiency - not me, talk to the pulmonologist. They only do what they absolutely have to, no more. Anything they can pawn off to anyone else, they do. Not my job, they all say
This, however, means that you, the patient, have to be your entire medical team. You are the patient. Yet you also need to be the doctor, knowing what tests to run, what possible diagnosis it is or could be, what effects it has, and what treatment is given. You are the the nurse, taking the blood sample, sputum culture, urine analysis, and getting it evaluated properly. You must call and get the results because you know that the doctor will never call you back on his own. You'll be lost in a slew of reports. Then you have to prescribe the proper treatment because he/she will forget they even put you on treatment. You will be a one-man show. And you must do this all while you are sick. You do not feel well; you are weak and tired. Once you have played doctor, patient, nurse, and lab tech, you also must play insurance company to make sure all the test and procedures are billed correctly, have proper pre-authorization, and get paid for.
I think one of the most frustrating parts of this system is not only do you need a gazillion different specialist because each doctor says it's not my job and just pawns you off to the next person, none of these specialists communicate or work together. They are all cowboys, shooting off from the hip. In today's day and age, there is no excuse for this. We no longer need to wait for the Pony Express, nor do we need to send a telegram or use Morse code. In fact, we don't even have to write a letter, put a stamp on it, and wait for it to arrive in the mail. We can pick up the phone and call the person. Through the use of cell phones they can even be reached day or night, and in just about any location. But even better than this, we can send out an email, that will reach them nearly instantly, and they can reply just as quickly. They don't even have to be at their computer to get it or respond. They can do this from their phone. Yet, many times they can't be bothered. They don't communicate with your other providers. It is becomes up to you to enforce communication and keep everyone up-to-date. Just one more daunting task for you to do so that you get adequate health care when you're sick. It's all extremely frustrating.
Sometimes, one just has to wonder; it shouldn't have to be this difficult. I went to go see Dr. S, my immunologist/hematologist. I haven't seen him since before the trach. Though I didn't call him to specifically notify him that I got a trach, he knew. He had to because the doctors called him to get orders for my Igg. In rehab, I went up to Baystate to get my Igg and he wrote the orders ect. I knew I was going to see him soon, and didn't see the point in calling him just to tell him I had a trach put in. What would be the point? Some asked if I contacted him before getting the trach to ask his opinion. Well no. What was he going to say? It wasn't up to him and really there were no other options. It wasn't an elective procedure. Whether he supported it or not, I needed to have it if I wanted to continue to live. From an infection standpoint, it was a risk. But again, there weren't a whole lot of options. Whether he supported it or not didn't matter. Anyways, I often feel appointments with him are rather pointless. I long ago ceased being a run-of-the-mill patient. I am not your typical patient with CVID. Most patients with CVID start Igg treatments and with these treatment, they are able to live fairly normal lives. Their infections are pretty well managed. Unfortunately, I am a complex patient. Just traditional Igg treatment hasn't been effective. It has improved things. It has kept me alive. I am not constantly in the hospital, or at least I wasn't after I had been diagnosed and started Igg treatment, but I still got frequent infections and was in the hospital a lot. The frequency of infections and hospitalizations have increased, despite an increase in dose. I am currently on quite a significant amount of Igg. I receive 20 grams weekly, a total of 80 grams a month. Most people are on ~40 grams a month. One of the frustrating things is for many patients with immune deficiencies, their immunologist is at the center of their care, directing other aspects of their care and guiding other specialists such as pulmonogy and primary care doctors. They direct all aspects of their care and how it relates to a primary immune disorder. This is important because PIDD effects every organ system. But Dr. S has always had a fairly hands off approach. When it came to pain and CVID, his opinion was that's not my specialty and told me to see someone else, but it is part of the immune deficiency and thus he should've at least referred me to a doctor. Even if he referred me to a pain specialist, he should've been an active participant, consulting with the pain specialist, since my pain was directly related to my immune disorder, not due to some sort of pain syndrome. When it came to my periods and how they were making my CVID worse, it was - I don't know anything about that. I'm not saying he's a bad doctor, but he isn't a free thinker. I was the one to bring journal articles to him. He went with whatever my doctor suggested. I didn't expect this visit to be different. I did want to discuss with him the ideas of Pompe, or a mitochondrial disorder. I wanted to get tested for possibly an Alpha-1-antitrypsin deficiency. Most importantly, was the source of the bleeding issues. That I had such severe bleeding and that it had taken over 2 hours to stop the bleeding was a concern. This visit was especially frustrating because though I was there for over an hour; he was only in the room with me maybe a total of 10 minutes.
Sometimes people make the dumbest comments. You can't help but wonder what were they thinking. Better yet, were they thinking... Probably not. On coming in the room, he asks, "So I see you've got a trach." Powers of astute observation. Yes, it would appear so. "Well how's it working for you?" Just dandy; it's great. Think everyone should get one. Don't have anything better to do with your time? Get a trach. Life certainly won't be boring afterwords. Certainly wasn't how I planned to spend my summer, that's for sure. In fact, I can think of just about a million other things that I would rather do than get a trach. I mean, one good thing, I'm still alive. But definitely poses some challenges. I told him about the bleeding and after much convincing, he agreed to run the test for von Willibrans. Everything else - not my specialty; see someone else for that. This is what I mean. Everyone wants to put it on another doctor, any other doctor really. They just don't want to deal with it themselves. Doctors are not the only ones that fall victim to this. Nearly everyone wants to get away with doing as little work as possible. If they can make it someone else's responsibility so that they don't have to do the work, they will.
I went to see Dr. O this week. I had the appointment from before I had the trach. It worked out well though, because I was able to see the doctor with having this infection. Last Thursday I was put on IV Rocephin. First of all, by Monday, I still had not seen any results. In fact, I was still getting sicker. I was more short of breath. My trach was still disgusting, didn't look or smell any better. More than that, the Rocephin made me horrifically itchy. No matter what I did, I felt like I wanted to itch my skin off. Oral Benedryl had no effect. I tried taking a dose of Benedryl before my dose of Rocephin. I slowed down the push from 5 minutes to 10 minutes. Other treatments such as a shower, lotion, even Atarax didn't help. The only thing effective - IV Benedryl. When I brought it up, Dr. O refused to write a script for it. He stated that I would have to call Dr. S and get him to write for the Benedryl. This made no sense to me. The allergic reaction was not due to my immune disorder. It was not related to the IVIg. No doctor is going to write a prescription for a medication to counteract or treat the side effects to a medication they did not prescribe. That would be insane. No doctor would do that. The doctor that had written the prescription for the medication was responsible for any side effect that occurred as a result of the medication. Again, an example of doctors not wanting to take responsibility. Finally, I told him, he had two choice - he could either prescribe a medication to treat the side effect, I had already tried every non prescription method I knew of, or he could change the medication. I could not continue to be in live in such a manner; to do so would cause me to go insane - literally. He decided to stop the Rocephin and switch to IV Doxycyline.
It is so frustrating to have to fight for every little thing. I am sick. I don't feel well. Yet I have to be the patient, the doctor, the nurse, the pharmacist, ect. It's as if it's a one-man show, featuring me. When you are sick, you are tired and weak. You don't feel well. This is not the time that you want such a fight. Being sick is hard enough. But there are no other options. The thing about Rocephin is that I never should've been put on it. It is contraindicated in people allergic to penicillin. Well I am allergic to penicillin. Something that should've been considered, but they don't read the chart or take these things into consideration. The only way they know what drugs to try is by looking it up on PubMed, or in the PDR (physician drug reference), a book with every medication, the diseases they treat, and interactions with other medications. Honestly, it's pathetic and infuriating. The other thing is that I saw him at 2:00, was out of there before 3:00; plenty of time to fax the script to Professional Home Care, the company that manages my IV medications, so I could have my antibiotic when I got home. I called Professional to let them know to expect a fax from the doctor. they had not yet received anything and said they would have to get something by 5 to be able to get the med to me that day. I called the doctor back. The script wasn't faxed until 4:45. They hadn't included the form stating I'd had the med before, and by the time they were able to contact me, it was after 5, at which point the office was closed, and I couldn't get the antibiotic until the next day. Again, you shouldn't have to do all the work. Doctors should communicate amongst themselves without you doing it for them. They should take responsibility and treat you themselves without trying to put it on someone else. Yet somehow they have removed the patient from patient care. How I would love to go back to a time when doctors cared about their patients, when they'd did whatever they had to do to provide good patient care. They had a vested interest in their patients and general practitioners did it all. Unfortunately, those days are gone.
One of the problems with medicine today is a lessefair mentality. No one wants to take responsibility. If you're a complex patient with many different medical problems, as I am, you have a slew of doctors, each with their own specialty. Often I feel as if I am in the middle of a circle of doctors. I begin spinning around and around, faster and faster, looking toward the circle of doctors that seems to be getting larger and larger as I rotate going faster and faster. I become more and more confused not knowing who to turn to or where to go. Everyone has the "not me" attitude. No one wants to take ownership. No one wants to do the work. Instead, they pawn it off to someone else in a different specialty. You have problems with bleeding - not my job says the immunologist, and he pawns you off to the hematologist. It might be related to a mitochondrial disorder - not my job, see a neuromuscular doctor. It could be alpha-1-antitrypsin deficiency - not me, talk to the pulmonologist. They only do what they absolutely have to, no more. Anything they can pawn off to anyone else, they do. Not my job, they all say
This, however, means that you, the patient, have to be your entire medical team. You are the patient. Yet you also need to be the doctor, knowing what tests to run, what possible diagnosis it is or could be, what effects it has, and what treatment is given. You are the the nurse, taking the blood sample, sputum culture, urine analysis, and getting it evaluated properly. You must call and get the results because you know that the doctor will never call you back on his own. You'll be lost in a slew of reports. Then you have to prescribe the proper treatment because he/she will forget they even put you on treatment. You will be a one-man show. And you must do this all while you are sick. You do not feel well; you are weak and tired. Once you have played doctor, patient, nurse, and lab tech, you also must play insurance company to make sure all the test and procedures are billed correctly, have proper pre-authorization, and get paid for.
I think one of the most frustrating parts of this system is not only do you need a gazillion different specialist because each doctor says it's not my job and just pawns you off to the next person, none of these specialists communicate or work together. They are all cowboys, shooting off from the hip. In today's day and age, there is no excuse for this. We no longer need to wait for the Pony Express, nor do we need to send a telegram or use Morse code. In fact, we don't even have to write a letter, put a stamp on it, and wait for it to arrive in the mail. We can pick up the phone and call the person. Through the use of cell phones they can even be reached day or night, and in just about any location. But even better than this, we can send out an email, that will reach them nearly instantly, and they can reply just as quickly. They don't even have to be at their computer to get it or respond. They can do this from their phone. Yet, many times they can't be bothered. They don't communicate with your other providers. It is becomes up to you to enforce communication and keep everyone up-to-date. Just one more daunting task for you to do so that you get adequate health care when you're sick. It's all extremely frustrating.
Sometimes, one just has to wonder; it shouldn't have to be this difficult. I went to go see Dr. S, my immunologist/hematologist. I haven't seen him since before the trach. Though I didn't call him to specifically notify him that I got a trach, he knew. He had to because the doctors called him to get orders for my Igg. In rehab, I went up to Baystate to get my Igg and he wrote the orders ect. I knew I was going to see him soon, and didn't see the point in calling him just to tell him I had a trach put in. What would be the point? Some asked if I contacted him before getting the trach to ask his opinion. Well no. What was he going to say? It wasn't up to him and really there were no other options. It wasn't an elective procedure. Whether he supported it or not, I needed to have it if I wanted to continue to live. From an infection standpoint, it was a risk. But again, there weren't a whole lot of options. Whether he supported it or not didn't matter. Anyways, I often feel appointments with him are rather pointless. I long ago ceased being a run-of-the-mill patient. I am not your typical patient with CVID. Most patients with CVID start Igg treatments and with these treatment, they are able to live fairly normal lives. Their infections are pretty well managed. Unfortunately, I am a complex patient. Just traditional Igg treatment hasn't been effective. It has improved things. It has kept me alive. I am not constantly in the hospital, or at least I wasn't after I had been diagnosed and started Igg treatment, but I still got frequent infections and was in the hospital a lot. The frequency of infections and hospitalizations have increased, despite an increase in dose. I am currently on quite a significant amount of Igg. I receive 20 grams weekly, a total of 80 grams a month. Most people are on ~40 grams a month. One of the frustrating things is for many patients with immune deficiencies, their immunologist is at the center of their care, directing other aspects of their care and guiding other specialists such as pulmonogy and primary care doctors. They direct all aspects of their care and how it relates to a primary immune disorder. This is important because PIDD effects every organ system. But Dr. S has always had a fairly hands off approach. When it came to pain and CVID, his opinion was that's not my specialty and told me to see someone else, but it is part of the immune deficiency and thus he should've at least referred me to a doctor. Even if he referred me to a pain specialist, he should've been an active participant, consulting with the pain specialist, since my pain was directly related to my immune disorder, not due to some sort of pain syndrome. When it came to my periods and how they were making my CVID worse, it was - I don't know anything about that. I'm not saying he's a bad doctor, but he isn't a free thinker. I was the one to bring journal articles to him. He went with whatever my doctor suggested. I didn't expect this visit to be different. I did want to discuss with him the ideas of Pompe, or a mitochondrial disorder. I wanted to get tested for possibly an Alpha-1-antitrypsin deficiency. Most importantly, was the source of the bleeding issues. That I had such severe bleeding and that it had taken over 2 hours to stop the bleeding was a concern. This visit was especially frustrating because though I was there for over an hour; he was only in the room with me maybe a total of 10 minutes.
Sometimes people make the dumbest comments. You can't help but wonder what were they thinking. Better yet, were they thinking... Probably not. On coming in the room, he asks, "So I see you've got a trach." Powers of astute observation. Yes, it would appear so. "Well how's it working for you?" Just dandy; it's great. Think everyone should get one. Don't have anything better to do with your time? Get a trach. Life certainly won't be boring afterwords. Certainly wasn't how I planned to spend my summer, that's for sure. In fact, I can think of just about a million other things that I would rather do than get a trach. I mean, one good thing, I'm still alive. But definitely poses some challenges. I told him about the bleeding and after much convincing, he agreed to run the test for von Willibrans. Everything else - not my specialty; see someone else for that. This is what I mean. Everyone wants to put it on another doctor, any other doctor really. They just don't want to deal with it themselves. Doctors are not the only ones that fall victim to this. Nearly everyone wants to get away with doing as little work as possible. If they can make it someone else's responsibility so that they don't have to do the work, they will.
I went to see Dr. O this week. I had the appointment from before I had the trach. It worked out well though, because I was able to see the doctor with having this infection. Last Thursday I was put on IV Rocephin. First of all, by Monday, I still had not seen any results. In fact, I was still getting sicker. I was more short of breath. My trach was still disgusting, didn't look or smell any better. More than that, the Rocephin made me horrifically itchy. No matter what I did, I felt like I wanted to itch my skin off. Oral Benedryl had no effect. I tried taking a dose of Benedryl before my dose of Rocephin. I slowed down the push from 5 minutes to 10 minutes. Other treatments such as a shower, lotion, even Atarax didn't help. The only thing effective - IV Benedryl. When I brought it up, Dr. O refused to write a script for it. He stated that I would have to call Dr. S and get him to write for the Benedryl. This made no sense to me. The allergic reaction was not due to my immune disorder. It was not related to the IVIg. No doctor is going to write a prescription for a medication to counteract or treat the side effects to a medication they did not prescribe. That would be insane. No doctor would do that. The doctor that had written the prescription for the medication was responsible for any side effect that occurred as a result of the medication. Again, an example of doctors not wanting to take responsibility. Finally, I told him, he had two choice - he could either prescribe a medication to treat the side effect, I had already tried every non prescription method I knew of, or he could change the medication. I could not continue to be in live in such a manner; to do so would cause me to go insane - literally. He decided to stop the Rocephin and switch to IV Doxycyline.
It is so frustrating to have to fight for every little thing. I am sick. I don't feel well. Yet I have to be the patient, the doctor, the nurse, the pharmacist, ect. It's as if it's a one-man show, featuring me. When you are sick, you are tired and weak. You don't feel well. This is not the time that you want such a fight. Being sick is hard enough. But there are no other options. The thing about Rocephin is that I never should've been put on it. It is contraindicated in people allergic to penicillin. Well I am allergic to penicillin. Something that should've been considered, but they don't read the chart or take these things into consideration. The only way they know what drugs to try is by looking it up on PubMed, or in the PDR (physician drug reference), a book with every medication, the diseases they treat, and interactions with other medications. Honestly, it's pathetic and infuriating. The other thing is that I saw him at 2:00, was out of there before 3:00; plenty of time to fax the script to Professional Home Care, the company that manages my IV medications, so I could have my antibiotic when I got home. I called Professional to let them know to expect a fax from the doctor. they had not yet received anything and said they would have to get something by 5 to be able to get the med to me that day. I called the doctor back. The script wasn't faxed until 4:45. They hadn't included the form stating I'd had the med before, and by the time they were able to contact me, it was after 5, at which point the office was closed, and I couldn't get the antibiotic until the next day. Again, you shouldn't have to do all the work. Doctors should communicate amongst themselves without you doing it for them. They should take responsibility and treat you themselves without trying to put it on someone else. Yet somehow they have removed the patient from patient care. How I would love to go back to a time when doctors cared about their patients, when they'd did whatever they had to do to provide good patient care. They had a vested interest in their patients and general practitioners did it all. Unfortunately, those days are gone.
Monday, September 27, 2010
Consult in Boston
As my condition has deteriorated over the past year or so, I have seen a few specialists as consults. One suggested that instead of 10g of IVIg every week, I get 20g every 2 weeks. I'm not really sure how he figured his math, or why he thought that would make a difference since it would cause greater peaks and troughs between infusions, but I never went back to see him and did not take his recommendation.
The next consult I had was with Dr. Alyea at Dana Farber for a possible bone marrow transplant. While he was excellent, he didn't feel that a bone marrow transplant was necessary at the moment. Should it be come necessary, he would definitely help me pursue it.
Since my appointment, I have talked to other patients who have also seen Dr. Cunningham-Rundles in the past. I was told that this is what she recommends to all her patients. One guy she told that if he just had his gallbladder removed, he'd be fine. She is a researcher and her research cannot be done on IVIg. IgG is a therapy, not a cure. Once you are on it, you will most likely need it for the rest of you life (at least if you are a PIDD patient). What is more, is that if you come off, it is likely that your insurance will refuse to pay for the IgG when you need to go back on it.
Knowing this, I felt trapped. I knew what would happen if I went of the IgG. I'd get extremely sick. If my doctor refused to write for it, what would I do? It was suggested to me that I seek another opinion, but I was tired of doctors and various consults. I had already sought out a second opinion and even a third opinion. I didn't want anymore. I was resigned to accept my fate; however, I was still urged to see Dr. Bonilla at Boston Children's Hospital. Finally after hearing a positive story about Dr. Bonilla from another patient who had had a similar encounter with Dr. Cunningham-Rundles as I had, I made the appointment and decided to give it a try. The worst that could happen is that he agreed with Dr. Cunningham-Rundles that I should come off the IVIg.Meeting with Dr. Bonilla was extremely different than any other consult I have had. For one, he actually listened to me and what I had to say. He took his time meeting with me and was not in a rush. Also, even though he had a resident with him, she observed. He did the entire evaluation. At most consults, the residents or interns do the evaluation, then the doctor comes in, spends 5 minutes with you, gives their recommendation, and leaves. It was nice to be taken seriously.
Dr. Bonilla definitely did not support coming off the IgG. He said that though some of the testing had not been done, it was too late to do it now. He said that once a person starts IgG, they need it the rest of their life, and coming off would actually be harmful. This was nice to hear. Rather than stopping the IgG, he actually recommended that the dose be increased to see if that would help prevent the infections I have been getting. Unlike the other consults who gave a recommendation and that was it, Dr. Bonilla wants to work with Dr. Steingart to best coordinate my care.
I've talked to Dr. Steingart, but don't know if he will be willing to try this form of treatment. It is hard to feel like the fate of your life and well-being is in the hand of doctors. Thankfully, Dr. Bonilla said that should Dr. Steingart not support his recommendations and continued to try to take me off the IgG, Dr. Bonilla could become my primary immunologist and write the scripts for my IgG. This is a huge relief. Though I hope it doesn't come to that. I love Dr. Steingart, but it is nice knowing I have someone who can help if he refuses to.
Hopefully this is the beginning of good things to come.
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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