In January, I was short of breath. I called for an appointment
at my doctor's.
I told him I was short
of breath and that I was still coughing up blood.
I asked him to send me for an x-ray,
because I thought I
had pneumonia.
I have had pneumonia quite
a bit in the past few years.
He told me that it was just
Bronchitis, but he will send me for an x-ray any ways.
It came back negative for pneumonia.
In February, I was sick again. Short of breath and still coughing up blood.
The amount of blood was
increasing, and I was getting worried. He again excused it as Bronchitis.
This time he didn't send me for an
x-ray. He gave me another antibiotic. He asked me to start a
series of sputum cultures. I only took one back
the next day. He found nothing
in the first one, so I felt no reason to continue to bring them back each day.
In the beginning of March, I developed a Urinary Tract infection. I was in extreme
pain.
I never had one so I
really didn't know what to expect. I was told that you
could have a mild one or a bad one, where you can't
even urinate. I went to work, then it hit me.
I was urinating pure blood, within a few hours. I called to get a
doctors appointment, left work,
and went to the appointment. He wanted an urine sample. But
by the time I
got there I couldn't give him one. He told me to bring one back the next day.
He gave me a prescription(an
antibiotic). He said I could stay off work, that he would give
me a slip.
I went back to work.
March 31,1993.......I was again short of breath, and weak. I thought for sure it was pneumonia .
I asked
him to send me for an x-ray. He told me that it wasn't necessary, that it was just
Bronchitis.
The next day I
couldn't breath and my chest was killing me. The medication he
prescribed wasn't helping, it seem to only
make it worse. I called the doctor
back,
he then sent me to the hospital to get x-rays.
April 4, 1993.......I was getting pains in the lower right back. I was in a lot of pain
I thought maybe it was
my kidneys. I was short of breath and very weak,
I was still coughing up blood. I went to the ER. they gave
me a pain killer and a muscle relaxer.
They had 2 people do it. Gave them to me in each arm at the same
time. I passed out.
They notice I was wheezing, so they gave me a breathing treatment.
They didn't take a x-
ray to make sure it was my kidneys or pneumonia.
They gave me a sleeping pill to take when I got home.
They gave me a slip to get out of work for 2 days and discharged me from the ER.
April 6, 1993.......I was in bed all day, unable to get out of bed, only to crawl to
the bathroom, and run
back. And pass out for a few hours. I called my mother and told
her that I didn't go to work again and that I
was off for 2 days. My father was having a fit.
He was afraid I was missing too much work and that I would
loose my job.
April 7th, 1993 .......I was still very sick, and very weak. I don't remember
the last time I ate. I felt like I was passing out every time I
stood up for a
long time. I thought something must be very wrong. I called my brother and
told him I was
still very sick, and that I thought I should go to the hospital.
I called my friend Linda, and they came and
picked me up. My brother came upstairs
to get me in my apartment. He said I looked very gray. It took me
almost a
1//2 hour to get dressed. When I got to the ER, I couldn't breath and I was very dizzy.
I was only
waiting a few minutes, when they called me in to examine me.
They took my blood pressure, both lying
down and standing up. I passed out when I stood up.
When I woke up, I was hooked up to an IV, oxygen and a heart monitor. They kept
putting cold clothes on my head. They brought an x-ray machine and took an x-ray.
They feared I would
pass out if I stood up. After that I was in and out.
They wanted a urine sample, but I couldn't give one.
They put a catheter in and
then I don't remember the rest of the time in the ER. I remember them saying I
was going to ICU. I woke up and I was in ICU. I was again in and out.
My mom, was there very upset.
She said she called my father and that he would be there after work.
I had an oxygen mask on my face..
They also found out I was anemic and gave me 2 pints
of blood. I was told to take deep breaths, my oxygen
level was too low.
I was told if I didn't get my level up, I would be put on a respirator. The nurses
came in
and did this procedure called suctioning. They stick a tube in your
nose and down into your lungs. and
suction what ever there is in your lungs out.
They wore masks for a precaution. I was scared, because I
knew I must have had something
bad for them to wear masks. I remember a man saying that he was an
anesthesiologist. That he was there to put a tube down my throat to help
me breath. When I woke up my
hands were tied, and I heard this machine beeping.
I was told not to fight the machine. To relax and let the
machine do the breathing.
I was on the respirator for 3 days, I think. I was then sent to a step-down unit
and then a regular room, and then sent home. Diagnosis, pneumonia.
April 28, 1993......I was scheduled to go back to the doctors for a 2 week check-up.
He was also going to tell me
when I could go back to work. When I went he
said I was doing good, but wanted to get an x-ray taken to
make sure my
lungs were clear. My brother got a call the next day from the doctors office,
saying they were
going to admit me for test. They found something in the x-rays.
And that I was to go to the hospital, they
would call and admit me. I called the doctors office,
I didn't even feel sick. I was still coughing up blood
though. They said that I had fluid in
and around lungs. So they wanted to admit me to run tests to see why
this, whatever it was,
came back so fast. And to see if they could fight it before it got worse. When I got to
the admitting office, they already knew I was coming. I was sent to my room,
where a nurse would be in to get me settled. Within a 1/2 hr I was hooked to an
IV and oxygen, but I felt fine, except for coughing up blood. They told me that
they were going to run a bunch of blood tests. My doctor and a specialist came in
and told me they wanted to do a Bronchoscopy. They had scheduled it the last time,
but I got well and saw no reason to. They said I had signed the papers the last time
(I don't remember). But they made me sign them
again. It is a procedure where they numb
your throat and nose.
They give you anesthesia, but you are still
awake.
They put a tube with a light on it,in your nose and down into your lungs.
They flush your lungs
with a saline solution, and then they flush it back out.
They took five syringes of blood and saline solution
out of my lungs. Then they took
a instrument and put in down the tube to take biopsies out. I think they
took 3.
I thought I was dying, they said you don't feel anything but when they
take the biopsies out. I felt the
whole thing. I thought they were going to drown me.
I will never go through that again. They studied it and
found nothing, except that
maybe it was a disease called Goodpastures Syndrome. They wanted to do an
open lung biopsy and I asked to be referred to another doctor. Both doctors
seemed upset and felt no reason for
me to asked to have a second opinion. My doctor
said they(him and the specialist) were capable of handling this. He referred me and
I was to see him the next day. The 3rd doctor came in that night, while
my mom and brother were still there. He
said he would run a series of blood
work and send them to a lab in NYC. He said that he was concentrating
on one
disease called Goodpastures Syndrome. I went home the next day,
and was scheduled for an
appointment back to Dr. Witte and discuss the results.
He said that I could either have a disease called
Pulmonary Hemosiderosis or
Goodpastures Syndrome. He suggested that I have an open lung biopsy done.
But he wanted to recommend another done for a second opinion.
I was sent to Dr. Aquilina in the Erie
County Medical Center(ECMC).
I went and saw him in May. He looked at my x-rays and the hospital
reports. He seemed
to
be very upset, with the x-rays, and lab reports prior to my hospital visit, and the
way the doctors had handled it. He also said
I could have one of these diseases.
He said to detect for sure he recommended an open lung biopsy. He gave
me a name of a surgeon, that would do the surgery. And felt he would do a
confident job. I went and saw
him. Dr. Hoover, chief surgeon of Buffalo General.
He told me that because everyone was baffled, this
would be the only way to tell.
He explained the procedure, telling me it was an operation, that it wasn't
simple.
There were risks. There would be a lot of pain, they will give me pain killers for it.
He told me to go
home and think about it, and call back to make an appointment
if I wanted it done. I told him there as no
more thinking about it. I wanted to find out
what was wrong with me. The procedure would go like this.
They would administer anesthesia, put a tube down my throat to look around,
make an inscision and seperate 2 ribs. Put a tube between the 2 ribs, and take
a piece of tissue the size of a man's thumb. They will have a pathologist in
the operating room to make sure the piece is enough, etc, before they close up.
They will put me on a respirator for 24 hr. for a precaution, and put me in ICU.
The surgery was scheduled for July 8, 1993. I was to be there July 7th
to be prepped. I went to Buffalo General on the 7th, and was escorted to my room.
My friends Carrie and Jeannie took me there. I was amazed how big it was.
My room number was 1455w. I was told I could stay in my clothes till they found me
a doctor. He came in late. His name was Dr. Romanucci, he was very nice,
he examined me, and went over the procedure again with me. I saw 3 other people
that night. A black doctor that would assist Dr. Hoover, a respiratory therapist,
and an anesthesiologist. They all explained what there job would be. The next
day i was taken down to surgery around 12. I was given anethesia and went
in to the operating room. I remember seeing Dr. Hoover, and then I was out. I woke
up in a place, must have been recovery. A nurse came over and showed me this button.
Told me to push it when I was in pain. She kept telling me to push it, but I didn't
feel anything. I woke up and I was in my room. I was very tired and slept alot.
Friday they got me in a chair and I threw up. They said maybe I was having a reaction
to the anethesia. I was on a liquid diet. Sat my parents came to see me. I was still
throwing up. I didn't like the nurse, they expected too much of me, and I was so weak.
2 doctors came in and made me cough, to see how the liquid in my lungs was being
expelled.
They called it a bubble machine, it just made noise. It hurt really bad to cough.
My aunt and mom came on Sunday. I was still very sick, and throwing up.
I was now off the bubble mchine, so I could walk to the bathroom. I still had
the chest tube in, so I had to carry this little machine that was hooked to it.
It collected the liquid from my lungs. Monday, Dr. Romanucci came in and
told me he was going to take the chest tube out. It hurt really bad, when he pulled
that out. The pain finally came. I was off the morphine by IV, so i had to take
tylenol for pain. I was allowed tylenol every 4 hrs and I asked for them everytime.
Tuesday i went home, and was told to call Dr. Hoover for an apointment in 2 weeks
to get the stitches out. I had restrictions, no lifting, no pulling, no pushing. I was told
not to drive at least till the weekend, in fear i would pull the stitches out, so my
mom
drove me everywhere. When I got home the pain finally came hard, and I could
hardly move. It hurt to
breath, move, do anything. I was told I could take the
bandages off. That only made the pain worse. I had to sleep in a chair, because
lying down pulled on the stitches and hurt. I didn't get much sleep in the following days.
I went to my appointment with Dr. Hoover on July 26th. He told me it was
Goodpastures Syndrome. He told me the open lung biopsy told us what we needed
to know, and it was very helpful. He told me I was to see Dr. Aquilina the same day.
Dr. Aquilina explained the disease and told me I would be on a pill called Cytoxan, and
continuing the Prednisone. I was looking forward to getting off the Prednisone, my
face had gotten so fat. But it didnt look that way. The disease is suppose to affect
your lungs and your kidneys. I asked him why my kidneys weren't affected, and
he said I was lucky. Usually they are affected first. He said they would do frequent
urinalysis to make sure my kidneys arent affected. And try and stop the progression
if they are. I would be continung to see Dr. Witte, and he
will be treating me for this.......