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.