11/23/06 - Thanksgiving Day

Thanksgiving Day - the day that we set aside for giving thanks for what we have. Normally a day to sit on the sofa after a huge meal and watch football. However, this year feeling like I do, it would be real easy for me to become absorbed in that and forget how much there is around me to be thankfully for.

I spent the day with family, and while I found the 'getting there' to be more trouble than last year. And while I've discovered that I've limited my speaking as much as possible around the people I see on a daily basis, the family that I rarely see doesn't understand the need for my voice conservation, so I was speaking more than I have been in months. This 'extended' me more than I should have. And the biggest problem was that my niece and nephew who are both under the age of 5, certainly don't understand why I cant chase them around like I used to. Overall I felt 'limited' this Thanksgiving. But I look at a few things as things to be thankful for.

First and foremost, I'm still alive. This may not seem like something to mention, but I myself have and on too many occasions to count have listened to the sickened first responder say that 'it would have been much easier if I had died five years ago.' This probably wont make much sense to a lot of people, but for many - 5 years of suffering with poor health and restricted lifestyles, these thoughts do occur. But I am still here. I have done a lot in the past 5 years, and I have big plans for the next years that I am here. To get caught up in what I've lost would take away the focus Ill be needed to push thru hard times to accomplish anything in the future.

The second thing that I thought of yesterday is to look at where I am from the angle of others worse than I. Its easy to look at me from the view point of someone healthy and see bad luck - that's, I guess how I do it normally. But I have spoken to many people over the past few months who are so much sicker than I. Most of these conversations I have had over the phone and or in person, so I don't have a record of them to pass along to you (besides my lousy memory). But one has been documented in the papers and is my friend who inspired the conference and the other I have in a series of emails. I would like to share these peoples stories (at least part of them) so you see, not only some diversity in what people are dealing with, but hoe its actually quite easy for me to find something to be thankfully for.

The following is about a 42 year old volunteer;
"He lurches forward, puts one hand on his thigh to brace himself as his body lurches, and covers his mouth with his other balled-up fist. His face reddens, and veins in his neck bulge as he tries to catch his breath. His teenage son hurries from the kitchen with a glass of water. He waves his hand in front of his face to apologize for the coughing fit. When he gets it under control, his body relaxes and he slumps back in his living room chair....Months after his time at ground zero, he developed what he initially thought was a cold-related cough. When it persisted, he had it checked, and he was diagnosed with pulmonary fibrosis -scarring of the lungs - which, without a double lung transplant, is a death sentence. He has no health insurance. It ran out before he completed a series of tests that would have put him on the lung transplant list. With no money to afford refilling the 25-plus pills he is required to take each day, he is running out. His financial ills, at least in the short term, would be helped by the World Trade Center Disability Pension, which would give him access to the care he needs. In order to meet the qualifications for the pension, public employees must have worked at least 40 hours at ground zero. He said he worked for two straight days, which should make him more than eligible. But union officials told him they could not prove he spent 40 hours there, because he and union Vice President, the only coworker with him at ground zero, were separated and there is no official documentation of his service...In March 2004, he was diagnosed with pulmonary fibrosis, a lung scarring that does not allow the body to oxygenate blood. It has afflicted many firefighters and police officers who worked at ground zero.
The condition worsened. He had to stop working, because his job often took him inside old school buildings that don't have elevators. Walking up a few steps taxes him. Climbing three or four flights is impossible.
His doctor told him to file for disability. He applied for medical leave with pay, which lasts six months. Once that was exhausted, he applied for leave without pay for another six months. That expired.
Now he has no insurance. He had his oxygen taken away because he couldn't afford it. The oxygen that keeps him alive now is donated by a company in his hometown, which has promised him a lifetime supply."

This is the story of 45 year old, female EMS worker;
"I heard about the first tower being hit and jumped into uniform on a day I had taken off to go vote the primary. Long story made short, I ended up being the staging person at Shea because the EMS person left and told me to take over.

I was in the first team to go from Shea. We arrived just after the second building collapse.

Currently I am a peer counselor in group on line for people who have gotten PTSD from line of Duty. Its not all EMS & Fire, we have Police, dispatchers, ER Nurses too.

My symptoms:

My life has slowly spiraled down hill ever since I was at Ground Zero. I have multiple medical problems. Flashbacks, nightmares from my PTSD (post traumatic stress disorder), headaches, acid reflux, sinus infections, rhinitis, sinusitis, difficult breathing, constant fatigue, multiple masses in both breasts, clogged salivary glands, chronic depression, cough, my right lung has severe scarring, my left kidney has something that appears to be a cyst but we don't know yet if it is something worse, they found polyps in my sinuses when they were checking for a head injury after an episode of lack of oxygen caused a fall, my breathing is on average 92% on room air, recently, I have had abdominal pain and back pain causing me to stay in bed for 3-5 days at a time. There is more but the sad part is we only find these things as we figure out what is wrong when I am horribly sick. The sinus polyp and kidney mass were found on accident while treating other matters."

In reading these stories they are just 2 of thousands like them. And they make me see that there are people much worse off than I. If I can see why these are reasons to be thankfully - hopefully you as a reader can take the same message away as well.

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.

Background

So I begin my journey by finally having to go to the doctors because my cough has progressed to horrific. And while this was the most 'loud' of my symptoms, the more troubling was shortness of breath and dizziness upon exertion and or talking. So I make an appointment with my primary doctor, whom I happen to like a lot, and head into the office. I like my doctor because she goes out of her way for her patients, calling them at home to check on them and always calling herself to give you the results of tests, even if they are normal. To me its the little things that make a difference.

To summarize a 3 week process they beginning treatments were for severe asthma. PFTs (pulmonary function tests) were significantly reduced while other tests such as Xrays and Cat Scans were normal. MEDICATIONS. I went from not taking ay medications to becoming a walking Rite Aid. Proventil, Advair, Prednisone, 2 different types of cough syrup, 2 different types of antibiotics. And the cough lingered. So the then pronounced this to be "coming from something other than lungs", lets see what that is. This begins my journey to specialists.

The next round of treatment that I got is, so far the only points the medical community have scored in this little battle I've been waging here. A combination treatment, began on the same day, for chronic sinusitis and GERD (GastroEsophageal Reflux Disorder) over a few days reduced the cough to manageable levels. And for this I can not tell you how happy I am. But the shortness of breath upon exertion (and by exertion at this point I mean walking) and talking has not gone away. When I get short of breath I get dizzy and when I speak my voice is hoarse. For this the doctors do not know why.

There was a reason I mentioned that I like my doctor, it was because I know this woman will go out of her way to care for her patients. But I feel like I'm stuck back in a nightmare I lived thru 3 years ago. Back then when I got sick, it was something atypical than what the other first responders were seeing. It was something HIGHLY atypical for someone my age to get. 5+ months in the hospital and it took them 5 1/2 weeks to figure out why I had what I had. This may not seem to be too much of a big deal, but people want to know why they are sick.

After things for me now began to deviate from what the doctors considered 'normal' I began to get that same feeling again, we don't know why your sick. My PFTs have continued to show poor results, but other tests don't back up the diagnoses that they are looking for - such as asthma, pulomnary embolism, heart failure. And they cant understand why????? And as a matter of what really scares me, is that the suggestion that this may be coming from the exposure to the toxins at the WTC - they have totally dismissed it. The pulmonologist that they referred me to even threw in a dramatic dismissive wave for effect! WOW. This terrifies me! What ever happened to "Primum non nocere"? (The quote often mistakenly associated with the Hippocratic Oath, but really came from the Roman physician Galen) This "First Do No Harm" is supposed to be KEY to the pratice of medicine stemming from ancient times.

So in speaking with many people who have either themselves, or have a family member that is suffering from poor health as a result of 9/11, I began to go back over and now instead of being the "shoulder to cry on" I am the investigator, searching for answers to his own mystery. One such woman runs a great website dedicated to this topic solely. Her husband is on the NYPD and I am going through a mirror of what he and his family went thru. She gave me the name and number of a pulmonologist a ways away from me, but he was not only knowledgeable about the first responders complaints, but also aggressive in testing and treatments. I called and made an appointment, he's soo popular its taken 3 weeks! But when I told her that I got the feeling my doctors didn't really know what was going on, she wrote something to me that has stayed in my head ever since I read it; she said 'if you went to get your haircut and the person screwed it up, would you ever go back to that person again?' Of course I responded, uh, well no. 'Well then why do people keep flocking back to doctors who either don't know or aren't treating them appropriately?????' Hmmm - good question.

I admire this woman tremendously, her husband is ill and cant retire on 3/4s, so he troops off to work EVERY SHIFT, with lung, liver and brain illnesses. She makes sure that he has what he needs to survive AND runs this website! Spouses and partners of the affected first responders are a rare breed, they have so much lumped on them, they will always have my undying respect.

And while I wait for the appointment, I go back and forth to the doctors that I've been going to. This needs to be addressed and maybe, just MAYBE, they stumble across something. Which leads me to one of my biggest problems with what's going on. Why do I have to hope that the doctors 'stumble' across something? A search online turned up a City Health Information PDF file. The title of which is Clinical Guidelines for Adults Exposed to the World Trade Center Disaster. This can be found at http://www.nyc.gov/html/doh/downloads/pdf/chi/chi25-7.pdf for people to download, and I did. It sets out a treament plan for doctors that even has a flow chart with arrows! If this --->, if that <----. Now why arent my doctors doing ANY of this? Reasonable answer 1) its an older document, as illustrated by my pulmonoligists dramatic wave of dismissal ("five years ago!"). Unfortunatly this document was released in August of 2006, 3 months AGO! Reasonable answer 2) physicians are so overloaded with reading that they cannot possibly read everything that comes out. Ok Ill go with that, but why have my parents and other-half become familiar with terms like RADs, GERD, Meth Challange test? Because they looked it up! Someone they know is having a hard time, they took a few minutes and googled stuff and are now asking me why havent the docs done or thought of this.

All of this while Im trying to span out getting to this new doctor, holding out hope. In the meantime at a doctors appointment last week, I would up being admitted to a Manhattan hospital for 2 days. They searched for every obscure thing that Im not a candidate for, meanwhile circumventing the "Guidelines". Poked and prodded, bruised and alone, two days in the hospital. The hospital physicians even knew what was "more than likey the cause", but when they went to my physicians they were given the same statements. Now this may beg the thought, hey! moron! maybe its just these doctors? But Ive spent far to much time discussing the illnesses and treatments with hundreds of people in my charity work and it is more the norm than the exception. Something needs to be done and fast.

From this point on, Ive caught up to the date on where I am with my treatments, future posts will be dated. I will attempt to be as current as I can. But I must leave off the Intro and Background with a message to physicians in general, because a lot of volunteers came from all over the world to help us at Ground Zero, and people who once lived here have migragted outside of NY.

For all the physicians and health care providers, go back to the beginning and "Primum non nocere". We, unfortunaly, are a growing population. When you needed us the most, we were there for you. We were in those buildings rescuing 35,000 people in 90 minutes. We were digging in the rubble for months looking for our friends and yours. We were passing out food and clothes to those working so hard. We were residents, employees and students that were allowed to return too early to our homes and jobs and classes. And right now we need your help! We are scared and feel segregated from the rest of society. We don't have the strength or energy to fight a battle to convince you to let go of everything you know about 'normal people medicine' because what we were exposed to 5 years ago was so far from normal. We don't hope that you will have all the answers, but we pray that you will do your best to search for them. We know that most medicine is an individual effort, depending on the patient, but here we are many and from too diverse backgrounds and situations to ignore the one commonality. Where we all were 5 years ago. We hope that you speak amongst your fellow health practitioners and when one or a few of you find something, make sure everyone else knows, our lives and our futures depend on it.