11/21/06 - A Split Double Header.
So today I had two major things that I needed to get done, and for those not overly familiar with the baseball reference a double header is two games played on the same day and splitting is win one - lose the other. In looking back that what today was.
The first part of my day I went to see the pulmonologist that I had been referred to. It was a bit of a drive, and I was kinda harried getting there, but all in all I arrived in one piece. So I'm sitting in the waiting room and nervous that I had driven all this way to be told the same thing. I thought maybe its me, maybe I'm just not wanting to listen because I'm not hearing what I want to hear. (Which sparked off the thought - what do I want to hear? And I didn't come up with an answer to that) So while all of this is running thru my head, the doctor stuck his head out and called me into the office. I gathered my things and sat across from him as he read over what I assumed was my chart. (I had brought all the test results from the other docs) Furrowed brow he did not look up but made some notes on the new page they had placed in my chart.
When he spoke he still didn't break eye contact with the pages of my chart, but said, "I'm not really sure why your other doctors started treating you but haven't pushed it further." Still flipping thru the pages he sighed and stated, "Ok well I'm sure that the pulmonologist has told you that this is coming from your occupational exposure of five years ago..." I stopped him in his tracks by saying, "no. The pulmonologist is convinced that this isn't coming from the WTC exposure." He looked up and at me and very seriously and asked, "why do you think he believes that?"
I explained to him that when we spoke he stated that "we don't know what's wrong with you but its not lungs, from looking at your lack of respiratory history and that we don't know where it is coming from." My reply to him was, "this is more than likely the trade center exposure" to which I was cut off by the dramatic wave and told, "5 years ago, too long. Not possible."
My new doctor alternated glances between my chart and me, finally dropping my chart on his desk and pushing himself back from the desk. "Not possible? Who is this doctor?" Then he shook his head and said, "no. Don't tell me. It doesn't matter." He pointed to a stack of charts on his desk that was around 30 in number and said, "See all of these charts? Cops, firefighters, Verizon workers, Con Ed. They all have the same story. Respiratory problems that start out slow, go unnoticed for a while, explained away by the patients as 'something else' for months. Then something happens, another bad fire, chemical irritant exposure, virus, something that enables them to pinpoint the exact moment when it got a whole lot worse." Then pointing to my file he looked up and said, "or being exposed to thin air at altitude, that sound familiar?" I nodded and he continued, "all these stories have two things in common, the narrative of symptoms and where you all were 5 years ago."
He sat back and tapped the files and said, "the answers they need are all right here. I shouldn't have to do any of my own testing, but I'm gonna just to back myself up." From here he ushered me into a room to perform a spirometry exam. After the exam I went back into his office and waited for him to read the results. He looked at me and said, "ok here's what we are going to do. You have the same thing everyone else has, Hyper-reactive Airway and or RADs (reactive airway disorder). So we are going to increase some of your Advair to 500/50, put you on a Spiriva inhaler and I want you to get a nebulizer and use it with Albuterol at home. If this regime doesn't work, we have other options."
And just like that I felt a calm come over me that the fog of uncertainty that had been surrounding my health was lifted. This doctors attitude infused hope back into the equation. His take-charge-stand shifted the responsibility of me having to find what was wrong with me and how to treat it and placed it on his own shoulders. THIS is what I was hoping for weeks ago! THIS is what a doctor patient relationship should consist of. I left the office feeling that this was going to be addressed after all.
Some research turns up that RADs is when your airways - from a toxic, exposure usually, become very susceptible to future irritations such as; exercise, allergens, cold, altitude, viruses ect. When re-irritated the result is that of severe asthma or COPD (chronic obstructive pulmonary disorder). The goal right now is to un-irritate the airways, how long that takes I am not sure of. This also may present a condition for the rest of my life, where irritations are only identified when they set off a reaction. But I am getting too far ahead of myself, right now - step 1 is to get out of crisis mode. From there I will be able to think and speculate about the future. All I do know is, knowing and having a plan brings me great comfort. This was the best part of my day. The 'W' in Game 1 if you will. For the second part it was all downhill.
From here I got in my car and drove to pick up some of the other members of the charity. We were to go to a 9/11 Health Crisis Conference, that was inspired by a volunteer rescuer that has been having major health problems as well as financial problems as a result of his exposure at Ground Zero. I had found an article online about this man and there was a one line mention of this upcoming conference. So with a little research, I was able to find out that a friend of his who works as a forensic intelligence analyst was pulling together a compilation of media, politicians and first responders to shed some light as to what is happening. I gathered all the information and the team decided that we would be there as a show of solidarity.
When I went to RSVP to the number listed on the letter, I found that I was speaking to the man whom had started all this himself. It was an interesting conversation, between 2 people who have difficulty speaking. However it took no time at all to realize that this poor man was so much worse off than I. We had a great conversation and hearing his story as well as his determination to fight was very emotional. I was even more determined to rally as many people as I could to be at this conference. Over the course of a week, we emailed and spoke several times and each time the excitement in his voice as some politician or news station or noted rescuer RSVPd. He believed that this would be what so many people who were suffering had hoped for. To have someone, like himself, stand up in front of TV, radio and news reporters and show the public what was happening. To have politicians stand up and say that they were working as hard as they could to do the right thing. For the physicians running the treatment and tracking programs to give some reassurances that they were getting a handle on things. That the sheer number of those affected would scream a message to the public that could not be ignored. And as soon as we walked in the door it was painfully obvious that none of that was going to happen.
The room was set up with a dais that had several people present and the floor wasn't occupied by too many more people. We all looked at one another when we walked in with that 'this is it?' expression on our faces. Upon sitting down, we proceeded to listen to the discourse between speaker and audience and the depression over the whole situation began to set in. The media was not present as far as we could see. The politicians had not bothered to make a personal appearance, but sent staffers to speak on their behalf. Even the physician who runs the major tracking and treatment program spent her whole allotted time telling us that they need more funds or they would only be able to treat people till sometime in 2007 and track people till sometime in 2009. My friend sat on the end of the table, hooked up to oxygen, and my heart broke for him.
However, if the dais wasn't bad enough, the people who has actually showed up as first responders was even worse. A visually shocking site and appalling to listen to. No one had the forethought to dress for the occasion. And every time one of the speakers attempted to say something one of the people in the audience would interrupt them and angrily interject a personal story. The people were angry at the speakers and each other - even attempting to speak over other audience members. Overall, the scene was ugly. Our stay was short lived, I presented my friend with some of our shirts and offered him to sell them to raise money for his financial woes. After that we were on our way, quite and depressed.
Now one may wonder why this scene depressed and even angered me. Don't I, of ALL people understand what they are going thru????? Who am I to judge how people should react to a life altering event?? Don't I get angry?? And the answer to this from an individuals standpoint is - Yes! I do understand what they are going thru and I think people should be allowed to react however they see fit, and I absolutely get angry. But yesterday wasn't about me. Hell it was inspired by one person, but in reality it isn't even about him. Its about thousands of faceless people who have had their lives drastically altered because they either did their job, chose to help out or were in the wrong place at the wrong time.
Looking at this from the standpoint that it should be looked at, we cannot and will not be taken seriously as a population until we learn to act as a population. Yesterdays event was to bring to light what's happening amongst first responders and volunteers, by using my friend as an example. He has pulmonary fibrosis, in short terms this means that someday he will need a lung transplant or he will die. He knows this. Yesterday we as a population, a growing population needed to turn out in large numbers and be united. Every person who interjected their own story with anger, did nothing but serve to remove themselves from the population. And while I don't subscribe to 'conspiracy theories', you've got to think that as long as the powers-that-be don't have to deal with us as a motivated, well spoken, organized front - we will never get the help we need. And my friend will die, as will lots of other friends and strangers. There is a time and place for everything, writing your senator and congressman is the time to tell your story, however - we have also arrived at the time for us to present ourselves as united group; worthy of and waiting for the support we deserve.
Maybe the only good thing that came out of that whole fiasco yesterday was this, on the way home in his own words - one of our members stated, "after seeing that place; I know that I have to work so much harder, because we are the only hope these people have!" This statement made me both sad and hopefull. This group knows what we can do, on 3 days notice we put together an event at St. Johns University; selling over 50 shirts, taking orders for 70 more and passing out flyers and speaking to countless students. These students by the way, to a large degree are our future. SJU is a school that is heavy science; pre-med, PA, and a lot of Pharmacy majors.
This is the 'L' in Game 2 for me, and while I'm glad to have found hope in a new doctor, I feel as one person took a step forward but the whole lot of us took a step back.
The first part of my day I went to see the pulmonologist that I had been referred to. It was a bit of a drive, and I was kinda harried getting there, but all in all I arrived in one piece. So I'm sitting in the waiting room and nervous that I had driven all this way to be told the same thing. I thought maybe its me, maybe I'm just not wanting to listen because I'm not hearing what I want to hear. (Which sparked off the thought - what do I want to hear? And I didn't come up with an answer to that) So while all of this is running thru my head, the doctor stuck his head out and called me into the office. I gathered my things and sat across from him as he read over what I assumed was my chart. (I had brought all the test results from the other docs) Furrowed brow he did not look up but made some notes on the new page they had placed in my chart.
When he spoke he still didn't break eye contact with the pages of my chart, but said, "I'm not really sure why your other doctors started treating you but haven't pushed it further." Still flipping thru the pages he sighed and stated, "Ok well I'm sure that the pulmonologist has told you that this is coming from your occupational exposure of five years ago..." I stopped him in his tracks by saying, "no. The pulmonologist is convinced that this isn't coming from the WTC exposure." He looked up and at me and very seriously and asked, "why do you think he believes that?"
I explained to him that when we spoke he stated that "we don't know what's wrong with you but its not lungs, from looking at your lack of respiratory history and that we don't know where it is coming from." My reply to him was, "this is more than likely the trade center exposure" to which I was cut off by the dramatic wave and told, "5 years ago, too long. Not possible."
My new doctor alternated glances between my chart and me, finally dropping my chart on his desk and pushing himself back from the desk. "Not possible? Who is this doctor?" Then he shook his head and said, "no. Don't tell me. It doesn't matter." He pointed to a stack of charts on his desk that was around 30 in number and said, "See all of these charts? Cops, firefighters, Verizon workers, Con Ed. They all have the same story. Respiratory problems that start out slow, go unnoticed for a while, explained away by the patients as 'something else' for months. Then something happens, another bad fire, chemical irritant exposure, virus, something that enables them to pinpoint the exact moment when it got a whole lot worse." Then pointing to my file he looked up and said, "or being exposed to thin air at altitude, that sound familiar?" I nodded and he continued, "all these stories have two things in common, the narrative of symptoms and where you all were 5 years ago."
He sat back and tapped the files and said, "the answers they need are all right here. I shouldn't have to do any of my own testing, but I'm gonna just to back myself up." From here he ushered me into a room to perform a spirometry exam. After the exam I went back into his office and waited for him to read the results. He looked at me and said, "ok here's what we are going to do. You have the same thing everyone else has, Hyper-reactive Airway and or RADs (reactive airway disorder). So we are going to increase some of your Advair to 500/50, put you on a Spiriva inhaler and I want you to get a nebulizer and use it with Albuterol at home. If this regime doesn't work, we have other options."
And just like that I felt a calm come over me that the fog of uncertainty that had been surrounding my health was lifted. This doctors attitude infused hope back into the equation. His take-charge-stand shifted the responsibility of me having to find what was wrong with me and how to treat it and placed it on his own shoulders. THIS is what I was hoping for weeks ago! THIS is what a doctor patient relationship should consist of. I left the office feeling that this was going to be addressed after all.
Some research turns up that RADs is when your airways - from a toxic, exposure usually, become very susceptible to future irritations such as; exercise, allergens, cold, altitude, viruses ect. When re-irritated the result is that of severe asthma or COPD (chronic obstructive pulmonary disorder). The goal right now is to un-irritate the airways, how long that takes I am not sure of. This also may present a condition for the rest of my life, where irritations are only identified when they set off a reaction. But I am getting too far ahead of myself, right now - step 1 is to get out of crisis mode. From there I will be able to think and speculate about the future. All I do know is, knowing and having a plan brings me great comfort. This was the best part of my day. The 'W' in Game 1 if you will. For the second part it was all downhill.
From here I got in my car and drove to pick up some of the other members of the charity. We were to go to a 9/11 Health Crisis Conference, that was inspired by a volunteer rescuer that has been having major health problems as well as financial problems as a result of his exposure at Ground Zero. I had found an article online about this man and there was a one line mention of this upcoming conference. So with a little research, I was able to find out that a friend of his who works as a forensic intelligence analyst was pulling together a compilation of media, politicians and first responders to shed some light as to what is happening. I gathered all the information and the team decided that we would be there as a show of solidarity.
When I went to RSVP to the number listed on the letter, I found that I was speaking to the man whom had started all this himself. It was an interesting conversation, between 2 people who have difficulty speaking. However it took no time at all to realize that this poor man was so much worse off than I. We had a great conversation and hearing his story as well as his determination to fight was very emotional. I was even more determined to rally as many people as I could to be at this conference. Over the course of a week, we emailed and spoke several times and each time the excitement in his voice as some politician or news station or noted rescuer RSVPd. He believed that this would be what so many people who were suffering had hoped for. To have someone, like himself, stand up in front of TV, radio and news reporters and show the public what was happening. To have politicians stand up and say that they were working as hard as they could to do the right thing. For the physicians running the treatment and tracking programs to give some reassurances that they were getting a handle on things. That the sheer number of those affected would scream a message to the public that could not be ignored. And as soon as we walked in the door it was painfully obvious that none of that was going to happen.
The room was set up with a dais that had several people present and the floor wasn't occupied by too many more people. We all looked at one another when we walked in with that 'this is it?' expression on our faces. Upon sitting down, we proceeded to listen to the discourse between speaker and audience and the depression over the whole situation began to set in. The media was not present as far as we could see. The politicians had not bothered to make a personal appearance, but sent staffers to speak on their behalf. Even the physician who runs the major tracking and treatment program spent her whole allotted time telling us that they need more funds or they would only be able to treat people till sometime in 2007 and track people till sometime in 2009. My friend sat on the end of the table, hooked up to oxygen, and my heart broke for him.
However, if the dais wasn't bad enough, the people who has actually showed up as first responders was even worse. A visually shocking site and appalling to listen to. No one had the forethought to dress for the occasion. And every time one of the speakers attempted to say something one of the people in the audience would interrupt them and angrily interject a personal story. The people were angry at the speakers and each other - even attempting to speak over other audience members. Overall, the scene was ugly. Our stay was short lived, I presented my friend with some of our shirts and offered him to sell them to raise money for his financial woes. After that we were on our way, quite and depressed.
Now one may wonder why this scene depressed and even angered me. Don't I, of ALL people understand what they are going thru????? Who am I to judge how people should react to a life altering event?? Don't I get angry?? And the answer to this from an individuals standpoint is - Yes! I do understand what they are going thru and I think people should be allowed to react however they see fit, and I absolutely get angry. But yesterday wasn't about me. Hell it was inspired by one person, but in reality it isn't even about him. Its about thousands of faceless people who have had their lives drastically altered because they either did their job, chose to help out or were in the wrong place at the wrong time.
Looking at this from the standpoint that it should be looked at, we cannot and will not be taken seriously as a population until we learn to act as a population. Yesterdays event was to bring to light what's happening amongst first responders and volunteers, by using my friend as an example. He has pulmonary fibrosis, in short terms this means that someday he will need a lung transplant or he will die. He knows this. Yesterday we as a population, a growing population needed to turn out in large numbers and be united. Every person who interjected their own story with anger, did nothing but serve to remove themselves from the population. And while I don't subscribe to 'conspiracy theories', you've got to think that as long as the powers-that-be don't have to deal with us as a motivated, well spoken, organized front - we will never get the help we need. And my friend will die, as will lots of other friends and strangers. There is a time and place for everything, writing your senator and congressman is the time to tell your story, however - we have also arrived at the time for us to present ourselves as united group; worthy of and waiting for the support we deserve.
Maybe the only good thing that came out of that whole fiasco yesterday was this, on the way home in his own words - one of our members stated, "after seeing that place; I know that I have to work so much harder, because we are the only hope these people have!" This statement made me both sad and hopefull. This group knows what we can do, on 3 days notice we put together an event at St. Johns University; selling over 50 shirts, taking orders for 70 more and passing out flyers and speaking to countless students. These students by the way, to a large degree are our future. SJU is a school that is heavy science; pre-med, PA, and a lot of Pharmacy majors.
This is the 'L' in Game 2 for me, and while I'm glad to have found hope in a new doctor, I feel as one person took a step forward but the whole lot of us took a step back.
posted by Iloveny_marf @ 1:16 PM
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