I changed my clothes three times before deciding to wear the new dress before heading towards the city. We arrived around noon so the streets were full of people out for their lunch break. It took forever to make a right or left turn as the crosswalks were packed. Then, we missed the parking garage entrance. After three right turns and avoiding one-way streets, we missed it again, had to go past it and make three left turns before finally parking. A little stress! I am so happy that we had built in a lot of extra time.
We had lunch at Chevy's - my first time ever at that restaurant. Their have a wonderful fajita salad! Afterwards, we crossed the street and walked the long block to the North Convention Center, got our badges then head another long block to the West Convention Center, up huge escalators to a massive open space leading to a huge hallway where all the vast rooms were either full of people during a seminars or empty but ready for a seminar.
We found our room, had a chat with the guy in charge of the room and met a number of physicians who were also speakers after me. Dr. Schmidt arrived with a Ferrari bag from the store just up the street. Michael was immediately jealous and offered to watch the two race cars which were for her little son at home. She laughed and said that if she heard him playing with them, he was going to have to put them back! Then Susan from the ILD Support Group arrived along with the head of the group, Sally. Then she came. What a shock! Dr. K. arrived, HUGGED me and offered good luck on the speech. I was so touched that she came to hear me speak!
Since we were the final seminar of the convention, I was surprised that the room was as full as it was. Probably well over 100 people. I was the second person to present so I didn't have a long time to sit and worry.
So, here is the speech:
My
adventure began in August of 2003 when I noticed I was short of breath and
sometimes had a dry, hacking cough on exertion. At the time, I was walking five
miles, three days a week at a 14-minute per mile pace. By July of 2004, the
symptoms grew to be quite dramatic. During the walk, I would cough to the point
of having to stop, bend over, my heart would race and I had a hard time
catching my breath. Afterwards, I would collapse into bed for a half-hour then
drag myself to work.
I
was the head of a highly regarded classical music program at a school, which
included music education as part of their core curriculum. It also had an
instrumental program taught by renowned musicians. The faculty included
seventeen instrumental teachers and two classroom/choir teachers. I was
responsible for the music education of every child from Pre-K – 8th
grade. It was a big job. The roster of families at the school included movie
stars and captains of high tech industries.
At
work, I realized that I stayed in my office more than usual, as I just was not
up to running up and down the 90 stairs, which I used to take at a full run. My
stamina was greatly reduced and, while producing programs, which involved
physical work like moving pianos, I was sweating a lot. It was embarrassing.
My
continuous coughing spasms became so uncomfortable for my walking partner that
she refused to walk with me until I saw a doctor.
But
it was May, all the end of the school events were scheduled. I saw the local
doctor in June who diagnosed it as exercise induced asthma, prescribed
Albuterol and sent me on my way. It didn’t help; the once a day dosage was
increased to twice a day then to three times a day then Flovent was added but I
was back in his office every two weeks as I continued to feel worse and growing
weaker throughout the summer. I kept reporting to him that I couldn’t get
enough air into my lungs. I couldn’t inhale. I couldn’t yawn deeply. I was
exhausted and spending a lot of time on the couch. I was panting in my sleep.
We cancelled our summer vacation as I was just too ill to travel.
One
parent at the school was my endocrinologist at **** for a thyroid problem. I
phoned him to ask for a referral and met with the Faculty Chest Clinic in
October. Within minutes, I was diagnosed as having an interstitial lung
disease. They also said that I could toss all the inhalers. My first DLCO upon
arrival was 7.7. It currently fluctuates between 11 and 15. In January 2005, I
had a VAT lung biopsy, which revealed the culprit – Hypersensitivity
Pneumonitis.
After
gathering all my personal information, the resident spoke with an environmental
hygienist and when he mentioned that I worked in an 18-year old portable
classroom, she literally said, “Bingo!” When the school was notified that the portable
was the probable cause of my disease, they denied it.
I
began my love/hate relationship with prednisone in March of 2005 with 40 mgs
for seven weeks and I tap danced through to the end of the school year on 20
mgs. I was manic. I was even ironing our sheets at home and driving my husband nuts!
Due
to being immune suppressed and because of my job with children, my wonderful
new doctor, Dr. K., declared me disabled in late August of 2005.
I
was 52-years old. It was a shock to leave my job, my 6-days a week and 14-hour
a day job, with no warning. Boom. Because I filed a Workmen’s Comp claim, which
the school denied, there were no goodbyes. There was no formal announcement. I
was suddenly just gone.
With
the Workmen’s Comp claim, which was settled after four years, came lawyers and
private detectives and reams of paper work and depositions. There were good medical tests, bad tests, surgeries, helping the person who took my place at the
school, adjusting to rehab, and exhaustion. It was a lot of stress for someone
trying to deal with a fatal diagnosis and loss of income.
Two
months after I left the school, the other people working in the portable were
worried about their own health and phoned OSHA. The surprise visit reveled rat
feces and mold. Eventually, the exterior walls were replaced, roof repaired and
new carpet installed all while denying there was a problem. My first PFTs and
CT scan after leaving my job dramatically improved. Dr. K. said that was proof
that the antigen was at the school though we may never confirm what it was
specifically.
My
husband and I will be married 40-years next year. Yes, we were just children!
We have a son who was away at college when I became ill. I was at my peak
earnings in a job that I loved and suddenly it all stopped. There was State
Disability for a year and Long-Term Disability for another year than nothing
other than Social Security Disability.
We
survived because we always lived below our means, had no debt and had money in
the bank. We adjusted our life style to just one income. On the day we settled
the Workmen Comp lawsuit, our lawyer told us that most people going through
this process are divorced, bankrupt or living with relatives. He didn’t know
that we are committed to each other to the very end. Not that it has been easy,
yet we are determined to fold this disease into our lives and not allow it to
drive it.
Speaking
of driving, we had a convertible so when I was feeling overwhelmed or having a
difficult time, we put down the top, turned up the heaters and drove down the
coast or up into the giant redwoods. Those drives allowed me to gather my
strength during the worst of times.
In
November of 2005, I began Pulmonary Rehab, which changed my life. Other people
with lung diseases now surrounded me! I was not isolated! I had social and
emotional support all while developing muscles! I learned so much including:
• all about energy conservation. This is key to keep doing
activities of daily living. I can do everything but maybe not on the same day.
• pursed-lipped breathing and diaphragm breathing
• to use paper plates – more energy conservation.
• not to panic and to breathe through bad situations like having
to do a small set of stairs.
• and to slow down – probably the hardest thing for me to learn.
For
the past seven years, I have worked out five-days a week in hospital rehabs and
Saturdays in my garden. I believe this workout routine has delayed lung
transplants.
After
a downturn in May of last year, I had my first assessment with the **** Lung
Transplant Clinic where they released me back to Dr. K., as I was deemed too
healthy to begin the process. Oddly enough, in November, I gained 200 ccs of
lung capacity, my CT Scan was back to 2008 levels and my DLCO was the highest
ever at 14. Sadly, in March I lost 10% of my lung capacity and my DLCO fell to
11 due to a bout of bronchitis. But last Wednesday, after a six-week run of
high dosages of prednisone, my unadjusted DLCO was 15.36. Best ever.
Thus
is the life of living with an interstitial lung disease.
To
end, I believe we all have some control over how we leave this world. Instead
of saying that I was miserable the last few years, I want my family to be able
to say that I was positive and active as long as possible. I want them to
remember that I never whined or asked the Lord above, “Why me?”
I
am determined to leave this life with dignity and grace.
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