Thursday, May 24, 2012

The ATS Speech

It went great. Finally done.


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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