When I was very young, I was always getting some sort of lung congestion. I vividly remember my mom applying a very cold and nasty smelling clay compound to my chest. Aside from that, I'd always been a very healthy kid. But as a teenager I noticed that I was not a good runner. Over and over I tried to be a jogger, but could not do it. I smoked from about age 15 until I was 30. I'm 48 now. In my teens, my mom smoked about four packs of cigarettes a day and in the morning there would be a thick milky way of smoke hanging in the hallway accompanied by her exceedingly powerful perfume. I recall being affected breathing wise by those things.

I moved from Chicago to New York in 1979 and from the minute I arrived there I began getting sick and that continued for the twenty years I lived there. All through my twenties I was getting lung infections, colds and the flu quite frequently. I was a very active person: going to the gym, walking miles and miles, singing on stage and quite often being a bartender/waiter in smoky restaurants.

In my late twenties, I began to notice this shortness of breath when I would get upset about something. I would sort of lose my breath. Finally at age 30 I quit smoking. At first, I started feeling better and then my breathing got worse. Doctor after doctor said I was fine and that I might have allergies to cat hair and to the feather comforter.

Still, I walked and walked on a daily basis, along with weight training and singing. I biked a lot too, but noticed that it was really tough going up hills. I began working out in a boxing gym and really noticed not being able to get a deep breath sometimes. The trainer would yell at me to breathe.

I got sick more and more during my early thirties. I washed my hands compulsively and began to feel like I was a very weak person. At one point I did go to a Pulmonologist who did an fev1 test, but she thought I was doing it incorrectly because I was 33 and was too young to have this obstruction in my lungs. Do you smell law suit? By the time I got back to them, my records were gone. They sent me out of there with a Proventil inhaler sample.

It got to the point where I would be sick almost constantly from the beginning of September to the end of May. It was really working my last nerve. At that point I was tending bar in a very smoky bar and playing music in other smoky bars.

One night while walking home from singing in a bar for five hours, I had my first panic attack. I remember stopping and resting on a fence more than once. I rushed in my apartment and I was so embarrassed I didn't want my girlfriend to see me like that, so I ran into the bathroom. I couldn't even talk. She was very scared and so was I. I showered and got a lot of the smoke off me and felt better. In addition to that, I remember wheezing so loud that I’d wake myself up.

After that she insisted that I go to another doctor. I made an appointment with an allergy specialist. Sometime before the appointment, a friend of mine who was studying to be a nurse told me that she'd read something about some missing enzyme and that it could affect ones lungs. I told this to the doctor and after testing for allergies, of which I had none, I guess he decided to test for Alpha 1.

I will never forget sitting in the doc's office for the follow up visit. He had this very sad look on his face when he walked in and I said, "Okay, lay it on me...I've got Asthma right?" He said, "I'm afraid it's more serious than that." These words were very foreign to me; I had never heard anything like that before in my entire life.

He told me what it was and what it did and with tears in my eyes, I asked him to write it down for me because I knew I would forget that name. Ha...fat chance! I still have that prescription sheet.

Now, understand that I did not have insurance at the time. My whole entire life just flipped upside down. This doc sent me to a Pulmo doc who took care of me and did her best to treat the dis-ease. She was very kind money wise, but got very upset with me when I demanded something, anything to help me. She had a number of CF patients and thought that they really had a bad roll of the dice. Well, it's just that first few months that were the hardest because I knew so little. In this case, ignorance was not bliss.

So, this doctor prescribed all the medicine I needed in terms of pumps etc. She told me there was this stuff called Prolastin, but that it was extremely expensive and totally out of my non-insurance ball park. Oh Great! Then she found this clinical study for a new Prolastin by Alpha Therapeutics. I did get in the study and began flying to Cleveland for gobs of tests and this new therapy for two years.

Boxes and boxes of supplies began arriving at my apartment which included: syringes, a centrifuge to spin blood, a pump, tubing and big foam boxes for shipping blood, Sharps containers and on and on. My girl friend just freaked out (I wasn’t too happy either). I recall feeling so bad and in a panic, doing my best to conceal all this stuff in our tiny Greenwich Village apartment. She did adjust a bit, but she never did go to Cleveland with me for support. Clearly, she was not a natural caregiver.

After about the first year of treatment, I got my first pneumonia and it was a doozy! I was in such pain, I begged for narcotics and got them and got addicted. About seven months later, I got it again and then three months after that I got it one more time. That was when I decided it was time to leave New York. I asked my girlfriend if she wanted to go along, she said yes. (The doctors couldn’t figure out why I had so many pneumonias and didn’t loose any lung function. I told them that that was their job to figure that out since they were the doctors and making big salaries. I also told them that it was a secret…he, he, he!) We had been looking around the country for a place to live for about three years, but for me, push had come to shove and that was it for me. Tucson here we come.

I remember reading an article by a germ specialist who said that New York was a veritable Petri dish; every day thousands of people arrived from all over the world with all sorts of fascinating germs. OY!

Immediately, Tucson living had a much better affect on me. I lived in a nice house instead of a 100 year old apartment, drove a car instead of taking the subway and spent more time around less people. I loved the dry air and warmth. Tucson has its own issues such as dust storms. As you know, living with a lung issue is a challenge because wherever we go there is some thing that affects us adversely. It’s terribly discouraging at times.

So, I began my new and much healthier life. I fulfilled my dream of purchasing a van and being a touring musician. I called my first tour “The Hypoxia Tour” because I would be traveling mostly to places at very high altitudes. I did my best to laugh at my folly of lung disease, but I did pay for it as well. Although I stayed pretty healthy even with all the travel, I was easily exhausted on the road and required enormous amounts of rest.

I have had a few bouts of pneumonia in the past six years here in Tucson and battled with drug addiction. Narcotics made me feel invincible and…I just felt good on them. What I didn’t know was that the drugs were actually shutting down all my systems as well as diminishing my lung capacity. About four years ago, I took an odd combination of prescription drugs and nearly died. I went into pulmonary arrest. The following day in the Intensive Care Unit, a very gentle male nurse said, “God didn’t want you yet.” Then he pulled the tube out of my penis. Ahhhhhhhhhhhhhh. My sense was that he was an angel.

I’ve been clean since then. I did get pneumonia in fall of 2004 and asked for Narcotics. I took them for about two weeks and then went through a miserable three day withdrawal from them.

Today, I do the best I can to exercise regularly, meditate, and do some yoga and Qigong. I am holding steady at 38% lung function. I travel more and more these days. I do get exhausted and tend to rest a great deal. After 20 years of being constantly sick, I still have a phobia about groups of people. I have a bottle of alcohol in my car and van and wash my hands with it obsessively. When I’m not in front of people singing, I tend to live a much more solitary life. I need to stay healthy for my work.

That’s my story in a nutshell. I thought the diagnosis of Alpha 1 was a death sentence, but it was actually a new beginning.

For more information on Alpha₁ Antitrypsin Deficiency, 
call 1-800-4ALPHA1 or visit any one or all of the above sites.