“My first Alpha symptom was in my 20s.
In winter time I started getting short of breathing bed at night.
I thought it was the cold because I had no heater in my bedroom.
I bought a heater to try and help my breathing. I didn’t no it
then but it was the Alpha causing it.”
“My wifes’ first visible symptom was shortness of breath
while square dancing. That was years before she got sick.”
“My absolutely first Alpha symptom (with the perspective
of 20/20 hindsight of course) was a feeling of crowding in the
left side of my chest . . . a rubbing . . . a slight irritation
in the area of my heart . . . or a feeling that something just
wasn’t right with either my lungs or my heart. I even went
so far as to get my heart checked out by a specialist who determined
that my heart was in great shape. It still is. I can only assume
that was I was feeling so many years ago was the sensation of
my lungs hyper expanding as my body tried to make up for the loss
in lung function.”
“My first clinical clue (please note I don’t say symptom
here) was a preemployment chest X-ray when I was about 24 and
it was the first time I was told that I had exceptionally tall
lungs. They had to do the X-rays again on 2 sheets to get the
whole picture. Even then my body was trying to accomodate this
damned disease. The irony is that I thought it was a good thing
and a sign of my general good health that my lungs should be so
tall. Little did I realize. . . . Oh well. Life goes one and you
learn.”
“The first symptom? Well, maybe stopping
to sit on the curb and have a cigarette to catch my breath after
having run only a half mile. Or was it that forced march in the
Army when the Sargent said take a break and smoke them if you
got them. First Alpha symptom??? You’ve got to be kidding.
I’ve had them all but never knew what it was. I grew up
on Doctors that smoked (late 40s . . . early 50s). Spent 10+ years
going from one practicing(!) doctor to another who said ‘Gee,
I don’t see anything on your X-rays, try this inhaler and
tell me if it helps. By the way, see the receptionist on the way
out for your bill. Why don’t we send you to an allergist,
maybe they can figure it out. By the way, stop by the receptionist
on the way out for your bill.’ I was born in 1943 of parents
who both had two parents that came from Norway. Duh! course nobody
knew @#$% about Alpha-1 because it didn’t fit into what
they had been taught in medical school. My mother was a pediatrics
nurse and my father smoked three packs of unfiltered Camels a
day. You ask me what was my first Alpha symptom? Who knows? You
tell me. The medical community sure wasn’t there to tell
me.”
“I went for a physical when I was SOB going up and down
three flights of stairs with a three year old and one-year-old
twins. Luckily the pulmonologist at Andrews Air Force Base knew
about Alpha. Like others I have been thinking back today and remembered:
1. I nearly died of pneumonia at
5 months.
2. I couldn’t do the three laps
required to pass the Red Cross Intermediate course
needed to graduate from college.
3. I preferred reading to any sports.
What sports I did were individual and I could stop
when I needed to.”
“Sorry I’m late for your survey Jack, but I remember being
30ish and not being able to blow up a balloon for a party.”
“My very first symptom was back in 1989 when my dr told
me I had bronchitis and it was chronic and then in 1990 when I
first started the one of ‘MANY’ lung infections that
year and the next and the next, follow me!!!!! I had lung infections
from 1990 til 1999 when I really started to have some serious
issues,I had worked at the Post Office and was no longer able
to even put mail up without stopping to catch my breath, then
I went on inhalers and in Dec of 99 finally got insurance so I
could go to the Dr’s and find out just what was happening
. . . and as they say ‘The Rest is History,’ lucky
me.”<:)
“I first noticed that I was increasingly
short of breath in about 1991 or so, when I was about 46. I had
already been diagnosed with angina about 1988. I didn’t
think much about it at first, although other people noticed it
more than I did. As I have already said, I was finally diagnosed
in early 1998 after being admitted to hospital with a suspected
heart attack, which turned out to be a heavy angina. They also
noticed my COPD. One of the doctors there noticed that my liver
numbers were a bit funny, particularly the gamma-globulin figures,
and sent a blood sample off to the Hospital for further analysis.
The result? You all know.”
“I had already had symptoms of bronchitis and emphysema
but my first symptoms of Alpha was when I went to the gyno and
she felt my stomach and found an enlarged liver and sent me to
a gastro who diagnosed me. So enlarged liver did it not the breathing
trouble!!!”
“In response to your question . . . I realized that I was
getting out of breath when I started avoiding stairs. I was fine
walking at great distances but stairs would wipe out my air supply
very quickly.”
“Lucky you. . . . The doctor that noticed my liver was weird
accused me of being an alcoholic and basically accused me of being
a liar when I told him I didn’t drink . . . AT ALL. What
a maroon!!!”
“I couldn’t bent down and tie my shoes or put socks
on without getting breathless. At the time I was smoking not a
whole lot but smoking. I quit smoking for the 20 th time for good
and one year letter I was more breathless doing the same thing
with the bending and trying to tie shoes or garden or whatever.
That was in 1996 I was 44. I also couldn’t walk fast and
talk at the same time. Plus if I did get a cold which was unusual
it went to my lungs and I coughed for months. All this happened
about that same year or maybe the starts of it the year before.
I thought it was my heart and went to a cardiologist who tested
everything and told me it was anxiety (it’s easy for a doctor
to assume this with women). I insisted on seeing a pulmonologist
at that point and he thought I was being ANXIOUS again but I insisted
and he gave me a referral and then it was detected by Dr. Mazzotta
the pulmonologist the first time I saw him.”
