My Experiences

I will list them from Past to Present:

It was around Easter 97.

I woke on Sunday at around 4 am. I was freezing.
And had a cough. I was feeling ok, except for a little heartburn.
I got up, went downstairs and took some TUMS to try and relieve
the heartburn. I went back to bed. But my chest was so tight. It felt
weird. I was able to fall back to sleep only to wake up a few hrs
later. With heartburn again.This time much worse. I decided to
get up and start the day. I offered to make the Dinner. My parents
were coming over. I made the dinner, not eating much though. I was
so tired, and feeling strange. The next day. I woke up at 7am or so.
I was feeling really bad. I called my mom and she said she needed
to come over and do some laundry. Her dryer decided to quit. She
got here and looked at me. She knew there was only a matter of time.
That i would ask her to take me to the ER. About an hr, after she
arrived. I announced, "ok take me to the ER" But by then it was
too late. I started to hyperventilate. And she called the
ambulance. They arrived very quick. The hooked me up to
100% oxygen, A heart monitor, took my blood pressure, my
temp. All this done in the comforts of my home. They wheeled
me out into the ambulance. And gave me a breathing treatment,
took a blood gas. And gave me an IV. I have grown to learn that
when an IV is inserted. I am stuck. I was in alot of pain. My
lungs hurt so bad, and I didn't want to breath. We got to the
hospital. Went into a room, given another breathing treatment.
And was taken for x-rays. It was then announced that I would
be transferred to the ICU. I went and the rest of the day, I don't
remember much. I was hooked up to the heart monitor(because
hyperventilating caused my heart to overwork). And my blood
pressure was high. 170/50. I was given breathing treatments ever
4 hrs, a high dose of Prednisone(steroids), an antibiotic, and
Tyelnol, my temp was 102.6 and rising. The next day I went to a
regular room, they felt I was out of danger. I took the heart monitor
with me though. My blood pressure was still very high, and so
was my temperature. By the 3rd day in the hospital I am ready to
go home. But because I am on high dosages of Prednisone, I have
to be monitored. So I learn that I am usually stuck in there for 5 to
7 days. I went home and relaxed. I have learned that you feel
really good in the hospital. But as soon as you walk out the
hospital doors. You become very tired, and you are still very
weak. I went to the doctors a week later for a check-up. And
went back to work the next Monday. I learned that it was
pnuemonia and not a relapse of Goodpastures Syndrome.

November 12th 1997

Lately, I have a few breathing problems. I went to the ER once
for an asthma attack. Knowing that it wasn't Goodpastures
Syndrome. I have grown to learn the symptoms and know when I
will be down for a week or so. I went there and they gave me 3
breathing treatments and a boost of Prednisone and sent me
home. I went back to work the next day. I was then prescribed
breathing treatments at home. And since then I have only had to
use it a few times. I usually have a problem, breathing, chills, a
chest pain. when the weather changes. Or its hot during the day
and the temperature falls in the night.

I have some good news and bad news. 1st I am off the treatment.
And have been for 2 weeks now. I am hoping I am off it for a long
time. But realize I may have a relapse. And will be prepared to go
back on the treatment. So far no problems. 2nd, I have found out
some disturbing news. I maybe sterile. My periods have stopped
about 2 yrs ago. And now I was told it was from the Cytoxan(chemo)
and its possible that I may never have children. That is one reason
why I asked my doctor to discontinue the treatment for awhile to
see if I get my cycles back. But for some strange reason I don't
believe I will. It has been over 2 yrs. I was told to wait 6 mths
and see if it comes back. If not my ob/gyn will try a treatment
to try and jump start it. It will take some tests to see if my
ovaries have failed. Or if I still have eggs. Right now I am single,
and hope someday I will get married. I know now that I will not
beable to raise a child on my own. These things, my illness,
knowing I may not have children has put a strain on my life. I
still work, a full time job, have my own home. But sometimes its
very hard to get out of bed in the morning. Sometimes I want to
give up. But know I can't. I have a family that needs me. I have
friends, a job. And I have a very special friend that has been
there for me. And wouldn't change that for anything.

Nov.20th

Well another relapse to occur.
Went in the hospital on the 15th, and came out today. I was
admitted tot he hospital after waking up on Sat 1am unable to
breath, and very weak. I took a cab to the ER, where I was
told my oxygen level was 86% and falling, my temp was
102.3 and rising. They took an x-ray saying I had fluid in
my lungs. I was given breathing treatments, high doses of
prednisone, antibiotics, and transferred to the ICU unit. I was
put on a heart monitor, oximetry, and oxygen. I stayed in ICU
for 2 days, and transfered to a regular room. Where I stayed
on the heart monitor and oxygen for another day. I was
released on Thursday, saying that I had a relapse of
Goodpastures.

Feb.6, 1998

I was admitted to the hospital again.
After 3 days of high temperatures, a cough, unable to breath,
and just weak. Tuesday night, I began to get a cough. It was
an annoying cough. Within a few hours I began to have chills.
And a temperature of 102.5. I bundled up in blankets and laid
on the cough watching TV. The next day was pretty much the
same. On Thursday I called my doctor and told him what was
going on. He called me in prescriptions. Prednisone: a boost
for 7 days. An antibiotic, called Floxin, and a cough syrup. My
mom had to go and get it. I was too weak too drive. She
brought it over. My temp was 103.7. I took the meds, and
went upstairs to bed. And stayed there(except for getting
some water, until Friday around 10. When my brother came
and got me and took me to the ER. Where I didn't wait long,
my brother said my lips were purple. I was given 3 breathing
treatments and a boost of Prednisone, oxygen, tylenol(for
the temp of 103.5. Then I was put on a heart monitor, because
my blood pressure was high, and also because of the high
doses of steriods I was given. I was later admitted. My doctor
saying it was a relapse of Goodpastures. I had blood taken
from my finger. The next day I asked my doctor why and he
told me that when I am put on high doses of medication. My
sugar goes up. So they gave me a couple of shots. I stayed
in the hospital for 4 days.

June 11,1998

Well alot has happened since I
wrote last. I have no job. I was on Worker's Compensation,
and was suppose to be off from work for 3 weeks. While I
was off, I got sick and ended up in the hospital. That would
have been Feb. 6th,1998 the next entry. While being off I
received a letter from my company. They terminated me.
Yep, you read that right, they terminated me while being on
sick leave. They tried to say that I abandoned my job. But
seriously, who in their right mind would walk away from a
job, while on sick leave. Don't make sense to me. I am
trying to find a lawyer, but so far no luck. They fought me
on Unemployment and I beat them. They are fighting me on
Workers Compensation. And well I am still fighting that. I
have stopped the treatment. (Cytoxan and Prednisone)And
so far have been off for almost 4 months. Which is great
news to me. So far no trouble breathing, etc. I keep thinking
that the company I worked for caused me to be sick. And
because I was still working there, I wasn't getting better.
My doctor said that the company didn't cause it. But it
didn't help me either. Hmmmm isn't that the same thing?
All I know is that I wasn't sick until I worked for the
company 9 mths. I am looking for a job.But for some
reason, I am not getting one. I think that the last company
wrote a bad referral. Who knows. But gee wiz I can't even
get one at McDonalds. Well I will keep you updated as
things happen.

I am a member of NORD!

My Experiences..August,1998....

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