Saturday, October 31, 2009
We moved to California in 1966 when I was in the 8th grade. My dad told me that in my new school, they would give me an instrument and teach me how to play it. He suggested that I not pass up this opportunity.
The music teacher took me into a room with several huge string basses lined up along the wall and said; “I only have you for one year. You know how to read music so I can teach you enough for you to be able to play bass in a high school orchestra.” He did, I did and I later met my husband while playing bass.
In the mid-1980’s I returned to the instrument and played with orchestras and other venues until 2002 when I took a leave due to work.
When Dr. K. told me that I would never work again, I thought that I could return to performing. I began to look forward to playing with the symphony again until I tried to lift the instrument.
One of the issues of my disease is that I lose oxygen saturation under various conditions, one of which is lifting or carrying heavy objects. The string bass is a very heavy object. Then I thought about standing up for the three-hour rehearsals, concerts every 4-6 weeks and massive rehearsals during concert weeks. I just don’t have the concentration and stamina anymore.
It occurred to me that I might never play my wonderful bass again. A few months ago, I asked my son if he wanted to take the bass home with him. He also plays. He looked at me and said, “No, not yet.” Maybe he knows that I am not 100% convinced that I won’t play again.
Next: September Song
Friday, October 30, 2009
I was talking with a wonderful woman in rehab today. We have known each other for about a year and her husband is in my Tuesday/Thursday rehab class.
She was very frustrated over all the blockades and hoops she has to jump through for a kidney transplant. We talked. I said that writing these blogs has made me realize that living with a bad diagnosis is a matter of constantly adjusting, to staying upright and moving forward with conviction that it will all work out. Keep jumping through the hoops and break down the barriers.
She also begins to worry about things that have yet to happen and feels defeated. Another lesson I passed along to her was one that was the hardest for me to adopt. I pledged that I would not worry about something until I was given cause to worry. This is especially helpful while awaiting test results.
I was raised in a Chicago suburb where summer heat and winter snows kept us inside for many months. We played a lot of games but our family especially loved to play cards. My dad was an excellent Gin Rummy player and refused to “throw” a game so any of us kids would win. I finally beat him on my wedding day. Ah, it was so sweet to finally win.
One lesson I learned from him is that if you are dealt a bad hand, play it out. Don’t fold.
I have been dealt a bad hand, my disease was not caused by anything that I had done, but I am going to play it out and not fold.
My final words to my friend today were, “Don’t fold.”
Next: The Music Stopped
Thursday, October 29, 2009
Traveling is a challenge. Because of having no immune system, I cannot fly on a plane or travel on a cruise ship. If I get a cold, it can be dangerous. If I get the flu, it can be fatal. So, we had to learn how to travel in a way that would not put my health at risk.
We failed the first time we traveled after the diagnosis. Michael’s mom lives in Las Vegas so we went for visit. On our way home, my ankles swelled to at least four times their regular size and Michael had picked up a virus to shared with me while we drove home for nine hours. I lost a lot of lung capacity with that virus.
I swore I would never travel again.
Luckily, the rehab nurses said that they would teach me how to travel in a safe manner. I learned to stop often, get out of the car and do my rehab stretches. I was also told to drink plenty of water, snack on fruit and wear compression hosiery to keep the fluid moving in my legs. They said to wipe down the hotel rooms with Clorox wipes, wash our hands and keep Purel in the car. With these tricks under our belt, we took a short trip to visit our son to see if I could travel without getting sick. It was a success. We then tried short trips. Great!
The other problem with traveling is that I need oxygen to sleep every night, in high altitude, walking uphill and stairs. In the beginning, we ordered the oxygen to be delivered to the hotel where we were staying. That was fine if we were staying somewhere for several days but it is problematic on long trips with different nightly stops.
We are travelers. We have been to most of the states and many cities throughout the world. But, we like to wander, not always knowing where we will be the next night.
Some wonderful person invented a portable oxygen system that is a concentrator. It takes room air and transforms it into supplemental oxygen delivered at a specific level. I need 2 liters. It is on wheels and can be used in the car, on airplanes, and in hotel rooms. Originally, they cost around $5,000 and were not very dependable. After three or four years, they have become smaller and much more refined. They now run about $3,500. The good news is that they can be rented for around $350.00 a month. Bingo. We have taken two long cross-country trips in the last two years. I have never gotten sick.
Here is a photo of one of the systems:
It feels so good to be able to get out and see the world. We still can’t fly, still avoid crowds, but we follow the advice taught to me by the rehab nurses so we can travel safely.
We are planning our next trip up the coast from Key West to Maine.
Next: Playing the Hand I’m Dealt
Tuesday, October 27, 2009
I am grateful for the disease. I know that sounds strange but even in the beginning I never asked, “Why me?”
So, it was about a year after the diagnosis when I was driving home along the ocean from rehab around 1:30 in the afternoon on a beautiful, warm Indian summer day. The windows were down on the car and great music was playing on the radio. It suddenly occurred to me that if I was working, I wouldn’t have noticed the beautiful sunshine.
With that, I started being aware of things that I would not have been doing, if I was still working: meeting old friends for lunch, Christmas shopping at 10:00 on a Monday morning, gardening when I wanted to instead of only having a small window of time to get it done, cleaning out closets, going for a walk after lunch, reading anytime, being in bed at 8:00 in the morning, and so much more.
The disease also made us tightened our circle of friends. Time has become valuable and we spend it with a small group of friends.
I have an older sister and a younger brother. Throughout our lives, I do not remember any conflicts, arguments, or jealousies among us. We had amazing parents.
My brother lives several states away and my sister lives 100 miles away. We don’t see each other often. We are all very busy with our lives though we wish each other all good things in life.
When we drove home from Indiana after burying my aunt in 2007, we stopped to see my brother and his wife. We had a great time together and I realized that time is running out. I told Michael that we needed to make a commitment to see them more often before I can’t travel anymore. I wanted a real relationship with them. A friendship. It started slowly with e-mails and has blossomed into a real relationship with both of them. This would not have happened had I not been ill. I would have been too busy. They would have been too busy.
For this and many other reasons, I am sometimes grateful for having a bad diagnosis.
Next: On the Road
Sunday, October 25, 2009
My lawyer returned and asked, “Do you know anything about another employee filing a lawsuit?” I said yes. I had heard that a former receptionist was claiming stress because of my illness and that she had hired a very famous lawyer to represent her.
When I first found out, I was furious and stopped all contact with her. Her claims were bogus. She had been fired and was looking for a way to get back at the school. I felt her claim diminished my suit and that I was being used. The timing could not have been worse.
I told my lawyer that we wanted nothing to do with her. Also, I wanted him to make a statement on the record at the end of the deposition stating that we were not in collusion; I have had no contact with her and did not support her lawsuit.
Months later, I ran into her. They had settled her suit but she couldn’t tell me the amount of the award. She did say that she was going to take the entire family on a trip. I was thinking Paris, London, Hawaii! “Where?” I asked. “Tahoe,” she replied. I guess she got a lot less than I had anticipated.
Next: Grateful for the Bad Diagnosis
Prednisone. It saved my life. It alone brought my DLCO up from 7.7 to 12. I can function. I have been on it since March 2005 mostly at a 20 mgs. dosage but it has increased several times to 40 mgs. when the disease has flared. During surgery this past February, I was on 100 mgs. That was fun!
It works but it is not without costs. I think the main complaint I hear about prednisone is that it causes a manic/depression cycle. In my case, I never saw the depression. I was manic. When I was on 40 mgs, the house and all of its projects were finished. I ironed sheets, for heaven’s sake! I was no fun to live with.
Weight gain: I often want the doctors who prescribe prednisone to have to take some so they understand what it feels like. It stimulates the thymus gland, which stimulates your hunger. Not just hunger but a HUNGER that if you don’t eat right now, you will die. I could eat a huge dinner and have no sensation of having eaten.
Every person I know gains weight on prednisone. And, of course, the doctors tell you that you have to lose weight. I gained 35 pounds the first time. Now, I am more aware of its problems and gain around 15 pounds every time the dose increases. Then, I have to lose it. Again.
Prednisone promotes hair growth in places never hairy before. With my new muscles and increased hair growth, my husband has begun to call me “Bruce.” I am waiting for my voice to lower!
Long-term prednisone users have jowls, a moonface, weight at the mid-section and a small hump at the base of the neck above the back. I have all of these.
In rehab, my heart rate is high because of prednisone. I also have thinning skin which bruises easily, developed glaucoma, have lost bone mass, horrible heartburn causing my lungs to flair, flushing of my face, increased sweating, muscle cramps in my legs and feet, a sensitivity to light, swelling in my feet and ankles, and tiredness.
New research has discovered that Restrictive Lung Disease people can reduce their levels of prednisone when combined with a drug that works with the bone marrow – Cellcept or Immuran. I have been on these drugs for almost two years and have slightly reduced the prednisone yet remained stable. The possible side effect, though, is cancer.
Another side effect has just showed up recently. I began to lose my hair in large hunks. Dr. K. told me that the drug has a cumulative affect and that I would eventually lose all my hair. As I am going to be on the bone marrow drugs for life, I will not have hair anymore.
Hairlessness is worth having stability with my lung disease.
Next: Co-Worker's Lawsuit
Saturday, October 24, 2009
It was my wonderful Workmen’s Comp lawyer who asked when I had applied for Social Security Disability benefits. Applied?!? I had no idea what that was or how to apply. At home, I downloaded the form and made a 4:00PM appointment in late December 2005.
I arrived with my box of paperwork (photo), not knowing what they would need. I sat in this totally packed horrible room and waited. Finally, a woman came out to greet me. She led me into another room to her desk. She warned me that I would be taking a recorded oath at the end of the interview swearing that everything I had said is true. We began to talk. I was very honest.
There were many times throughout the process – SSI, WC claim, Long-term Disability – where I could have “shaded” the truth for my benefit. I had decided in the very beginning that I was going to tell the truth no matter what the issue. They can’t catch me in a lie if I don’t lie. Simple.
During the SSI interview and with all of her experience, I guess it appeared to her that I was being extremely open and honest. One question she asked was when I diagnosed with depression? Now, I know people get SSI for being depressed. I am not depressed. I will never be depressed. I told her that I have never had a depressed day in my life. Her demeanor changed. Her voice changed. She mentioned one of her stepchildren. We started talking about school and children, I shared things I had learned working at the school and suggested some resources. We finished the interview. I reminded her that I was to record an oath for her and she said, “No need,” and smiled. It was 6:00PM and we were the only people left in the entire office. She walked me to the door where we hugged goodbye.
I began the wait to hear if I was going to receive the SSI benefits.
According to the paperwork, all decisions are to be made within 90 days. I received a notice that they were needing additional time. Finally, on July 7, 2006 I received a phone call from the same woman at the SSI office. She remembered me. She told me that SSI has approved my claim. Dear reader, you have to understand that it is rare for someone my age to be awarded these benefits the first time submitted and without the help of a lawyer.
She said that I have been declared disabled as of August 29, 2005. There would a waiting period so I was going to received disability checks beginning in February to July 2006 then a monthly check thereafter.
But, what she said next made me burst into tears. I would be eligible for Medicare in February 2008. Medicare. We were not going to have to sell our house to pay for all my medical bills. We would be bankrupted if not for Medicare.
I will never forget the woman at the SSI office or her kindness. I am sure her report had a lot to do with the approval of the claim.
Next: My Love/Hate Relationship with Prednisone
Friday, October 23, 2009
Hear Ye, Hear Ye! All long-term disability insurance plans as part of your employment package are a scam. Yes, scam. If I could have enough energy to add one more thing to my plate, it would be to work with our state and federal representatives to outlaw how these companies operate.
These are big companies. Mine has a very famous owner. Now I know how he got rich! I often imagine what a hell would be for him. I imagine that he would have to pay out claims! That would be his hell.
The concept of long-term disability insurance is to cover the difference of your net income between State Disability income (good for two years) and your regular paycheck. When the State Disability runs out, they are to cover the difference of Social Security Disability and your net paycheck until you are 65 years old. This is why we have this insurance. It is to protect our income in case we become ill.
At first contact, they wanted everything. Great, another investigation into my financial and personal life. Then, they had a long questionnaire to be completed as soon as possible, which ended up being seven computer pages long. Everything had a deadline. If you didn’t jump through this hoop by a certain date, the claim would be disallowed.
Immediately they sent this to me:
No LTD benefits will be payable to you for any Total or Partial Disability during
any of the following periods:
- any period of your Total or Partial Disability that is due to Chemical and Environmental Illness, unless you are under the continuing care of a Physician
- providing appropriate treatment in accordance with your disabling condition.
- After you complete your Elimination Period, LTD benefits are payable for 24 months.
- Benefits after the first 24 months are payable only if you are confined in a Hospital or Institution.
- The threshold question for determining the applicability of this 24-month provision.
or the environment including but not limited to :
a) Environmental Allergies
b) Sick Building Syndrome
c) Multiple Chemical Sensitivity syndrome
d) Chronic Toxic Encephalopathy
Chemical and Environmental Illness does not include Asthma or Allergy-induced
reactive lung disease. (emphasis added.)
They said, “Sorry, but you have an environmental illness and we will only pay for 24 months.” And they did. I have no income other than $1,164 from Social Security. I used to earn over $65,000 for nine months of work. What would loss of your income and an increase in medical expenses do to your budget?
We hired a lawyer to write a letter to fight this determination. It cost us just about $5,000.00. Great letter but it didn’t work. The Porsche in the photo at the beginning of this blog was sold to pay for this lawyer.
I did learn from the lawyer, who requested and received the entire huge long-term disability policy, that for any illness, there was an addendum shortening or absolving them of any long-term payouts.
Demand to read your work policy then buy a private long-term disability policy that you have thoroughly read. End of tirade.
Next: Social Security Disability
Thursday, October 22, 2009
My birthday is coming up in early November. Getting older has never bothered me as I always believed that with age comes wisdom. Since the diagnosis, birthdays are a reminder of another year closer to the end. Tougher. Not something to celebrate any longer.
But Christmas’ have become dearer to me. I love everything about Christmas and try to drink in every moment with the entire family; the music, smell of winter, Christmas lights, the tree, the spirit of the season that creeps into my soul about the first of December. I love the house full of family on Christmas morning. I take snap shots in my mind all day long. Some years, especially the first few after the diagnosis, I often fought back tears all day. Tears for the Christmas’ I would miss.
And I always wonder if this will be my last Christmas.
My disease is not one with a slow decline but it is one of flares and crashes. Fine today, dead next week. In the beginning, I was finding that a bit difficult to deal with. A wonderful man in rehab named Roy had IPF – also a Restrictive Lung Disease. In 2005, I asked him how he dealt with death hovering at all times. He said that he doesn’t think about it. If it happens, it happens. No sense worrying about it. He told me to take care, wash my hands and live the rest of my life well. He died two months ago at 85-years old. I miss him. He was a classy, intelligent, and a very kind man. I learned so much from him.
Our son is very aware of my doctor appointments and lawsuit processes and will phone to find out how it is all going. He is an adult who lives 800 miles away and is running his own busy life. But, I don’t think he really understand how important some things are to me since I have been sick. Like Christmas. It is a marker of time. Proof that I fought to live one more year and hoping to be able to see the next one.
He didn’t come home for Christmas two years ago. It was an extremely sad one for me. I never told him. I wonder if he really comprehends that I am dying but just doesn’t want to deal with it or does he not really understand?
Hmmm. I really need to work on this. I would love to know how other adult children talk with a parent with a bad diagnosis. Do they avoid the ill person? Begin to separate? Do they not want to talk about it? Do they want to talk about it but are afraid to do so? Any advice would be appreciated.
Next: Long-term Disability Insurance Scam
Wednesday, October 21, 2009
I took her on as a challenge. I am very good at breaking down the formal mask that so many people wear. She was not going to be easy. Her staff wished me luck and told me to keep at it. She was equally tough on them.
It began to changed when I took control. I asked if there was anything I could do to stabilize my lung disease? She said no. I feel that the human body is always trying to heal itself and I had heard about an anti-inflammatory diet. As my disease is an inflammatory disease, why not try it? She agreed. I have been on it for almost four years and feel that it is definitely one of the reasons I have staved off transplants.
Along with the diet, I pushed her for more rehab. As rehab sends written reports to Dr. K. every three months, she still is delighted that I have been so religious about five days of rehab a week. For years. No other patient had ever been so committed.
Most people want the doctor to “fix” them. As one doctor said to me, “You are doing everything that we could ask you to do.” Every doctor who has been involved with my different issues has more interest in me because I have contributed to my end of this process. I do the work.
Our relationship really changed in February 2009 when I was recovering from stomach surgery for acid reflux. I had been aspirating into my lungs causing the lung disease to flare. Dr. K. came to visit me in ICU. She was smiling and jovial. Michael and I looked at each other like, “Who is this person?” We had never seen her like that. At one point, the surgery team came in with some residents. She said, “Let me tell you that once or twice in your entire career you will be lucky enough to have a patient like this.” I beamed. She then said, “See you soon,” and left.
Since then, it seems like we are friends. Well, almost.
Next: Birthdays and Christmas
We deposed the Head of the school. I sat in on the deposition but was not allowed to speak though I did pass notes to my lawyer when necessary. We were a good team.
He asked her a lot about the rat problems at the school and she admitted to having a constant problem not only around the grounds of the school but in our portable. On the conference table sat a stack of mold reports measuring at least 2-1/2 feet high. These reports compared the inside mold numbers against the outside mold numbers. It was amazing that the outside mold numbers improved as the inside numbers got better. We had discovered that the tests were taken just after turning off the industrial sized hepha filter fans. What a joke. CYA reports.
Throughout the deposition, the Head kept referring to the mold reports as proof that there was no unusual ratio between the inside and outside mold levels therefore, not the cause of my disease. Towards the end of the deposition and with brilliant timing with his hand on the huge stack of mold reports, my lawyer asked, “If there was no problem with mold in her portable why so many mold reports?” There was silence. They look down at the table, to the floor, they shuffled in their seats until the Head said, “We were just worried about her health.”
My lawyer said that he wanted a moment with me. We walked outside where they could not see us and I was shocked when he started to do a little dance and was smiling. This was not the lawyer I had grown to know! “We got them! She admitted to a huge rat problem. Judges don’t understand mold. Judges understand rats!”
That was the tipping point.
Later, as the new insurance lawyer deposed me, she tried to challenge the rat problem. My lawyer responded that the issue was already on the record by the Head of the school. The lawyer was not happy.
Another year passed.
We arrived at the State building in early 2008. They wanted to settle, we agreed on a dollar amount but they would not pay for future medical for my lungs. Medicare would not pay for them either as they felt that it was not their fault that I was ill. I was going to have to pay the bills for any future costs for my lungs. Talks broke down.
Another year passed.
In February 2009, we arrived at the State building expecting another mediation hearing – we had recently been to 2 or 3 other useless ones. Our lawyer said they wanted to settle. Today. They would pay for a third party to place a dollar amount – in Medicare dollars – on what my damaged lungs were going to cost until death. The insurance company would agree to give that money to me to put into a separate account which can be audited by the State. Medicare would bill me for any services for my lungs. If the fund ran out before I died, Medicare would then cover all medical costs. This is called a Medicare set-aside.
We settled. It was so anti-climatic. With the judge making copies and the comment of, “It is a fair settlement. Congratulations,” we shook hands with our lawyer and walked outside to the car. It was surreal.
It was over.
No more lawyers, no more investigators, no more insurance doctors, no more waiting. We would finally begin to plan for our future.
Next: The Less Terrifying Dr. K.
Tuesday, October 20, 2009
The first year, I was deposed by one of the Workmen’s Comp insurance lawyers for three hours. They began their investigation. We heard nothing for almost two years. The three D’s of insurance claims: deny, delay, death. Next, twice a new WC insurance lawyer deposed me. I was examined and questioned by their chosen third party doctor. He said he was going to challenge the diagnosis. I was examined and questioned by my lawyer’s choice of a third party doctor. He, by the way, was brilliant. He stated the cause of the disease to be 100% the fault of the school. And, in the end, it was his report that stopped the lawsuit and made them settle. They wanted to have a full inspection of our house. He noted issues about our house and denied that they could cause my disease. The judge agreed. The Insurance Company filed an appeal. The Appeals Board denied their appeal. This set up the settlement talks. It also did not allow them in my house.
Boy, they did everything they could to get information regarding my house. Do you know that if you have made an insurance claim on your house, it is in a database accessible to anyone? During their investigation, I was called at least twice a week at home for a “survey” and they even represented themselves as our homeowner’s insurance representative who wanted to update information. The questions were weird. Did I have wallpaper, did I have carpet, did I have a hot tub, did I have a bench in my shower, did I have a fan in the bathroom, did I have a window in the bathroom, and did I have French doors? They wanted any information so they could claim my home caused my disease. We knew what was going on and finally refuse to answer any questions on the phone explaining that we were involved in a lawsuit. The calls stopped.
They would drive by our home and take photos of me doing yard work. They would take photos of me pumping gas. They even dropped a pack of cigarettes near the phone line on our property and, of course, being followed which we talked about in an earlier blog.
I hired my lawyer because he was the only WC lawyer I interviewed who didn’t want to hold a press conference and stake out the school. He was also not a “mold” lawyer, as I hated the ones I interviewed. He was a bit like Columbo as he stumbled and bumbled which put people at such ease they would open up to him. It was a joy to watch. He was perfect for me. I also discovered that he had long-standing tickets to the opera, symphony and was an excellent classical pianist. We were kindred spirits.
Next: Workmen’s Comp Lawsuit – Part 2
Monday, October 19, 2009
I thought it might help to understand the specifics of what was taught in the rehab classes. This list is what I learned during the first 8-weeks of classes and exercising which I still follow today.
I learned in rehab:
• to feel what it is to be low of oxygen. I can tell when it gets down to or below 89% and used to try and work through it but now realize what harm it does to my heart and other organs.
• that I just can’t try to ignore the disease as it must be a priority.
• about the disease and the physiology of it.
• the necessity of flu and pneumonia shots – my first.
• relaxation classes taught me techniques to stop, meditate and relax my body so the saturation rate increases.
• all about energy conservation. This is key to keep doing daily activities. I can do them all just not on the same days but must plan ahead.
• must fight to maintain current activities. Continue gardening until I can't anymore.
• short trips are fine but must be plan for it. Oxygen must be ordered ahead to be at the destination. Try to take naps during traveling. It is important to stop and move at least every two hours. Try to relax and breathe. Try not to over-do.
• pursed-lipped breathing and diaphragm breathing – use this while walking on flats, food shopping. This technique can slightly raise saturation rates enough to help.
• how to make the bed without being out of breath. We bought the tallest bed we could find. I don't have to lean over to make it so I don't get out of breath. Proof is in the photo!
• to take cooler showers because hot showers make me short of breath.
• to wear slip on shoes so I don’t lean over and get out of breath.
• to cook dinner one night and use leftovers for the next 2 or 3 nights.
• to use paper plates – more energy conservation.
• how to shop for groceries using energy conservation.
• about germs – worry about colds, flu and pneumonia. Wash hand constantly. Wipe down shopping carts with bleach wipes and keep Purel in car and use whenever returning to car. Wash my hands the moment I return home.
• grew muscles so I can stand longer.
• from other people – one taught me how to continue to be able to do my light yard work by rolling the large oxygen tank into the yard and to connect a long hose.
• not to panic and to breathe through bad situations like having to do a small set of stairs.
• to slow down – probably the hardest thing for me to learn.
• to take rest periods.
And I am still learning.
Next: Workman’s Comp Lawsuit – Part 1
Sunday, October 18, 2009
The goal of Pulmonary Rehab is to build upper and lower muscles for increased stamina and ability to continue with daily activities. They teach energy conservation. I tell Michael that we can do anything; I just need time to plan for it. If we were invited to dinner on a Friday night, I would begin to prepare on Wednesday by sleeping more and not doing any extra activities. It would always take a day afterwards to recover.
Rehab has become my main social contact with people. On Tuesdays and Thursdays, several of us arrive an hour early to share stories, food, recipes, and just have fun. We learn from each other. We worry about each other when someone is going through a rough patch and visit classmates when they are in the hospital.
On Mondays, Wednesdays and Fridays, it is just a community fitness center in a hospital where half of the equipment is being used for Cardiac Rehab classes. There are always nurses available, in case I need help. I have made great friendships with several people at this rehab as well.
I currently do 10 minutes of warm-ups then begin my program of exercises:
11 minutes at 3.3 mph on the Treadmill
5 minutes at 25 watts of resistance on an arm bike
11 minutes at 65 watts of resistance on a recumbent bike
5 minutes using 8-pound free weights to do a series of 6 exercises
11 minutes at 3.3 mph on the Treadmill.
This series is ended with 10 minutes of stretches.
After working out, I stand taller, breathe better, and feel looser and strong. I also sleep like a baby at night! I highly recommend rehab for anyone with a lung condition. It is about improving your qualify of life. Try it. Please.
It was in rehab where I met my first person who had become her disease. When asked, “How are you?” she would answer, “I am not well. The doctor doesn’t help.” It goes on and on from there. It usually includes how the doctor is wrong and she is more knowledgeable. Their whole life surrounds around their disease and never allows anyone to forget that they are sick. They must be a pure pleasure to live with!
I refuse to “become the disease.” When someone asks how I am, I say “Fantastic!” I am so grateful to be upright and alive. I have no complaints. I have carved out a new life and have folded the disease into it. It does not run my life. I won’t let it.
Next: What I Have Learned in Rehab
Saturday, October 17, 2009
We have found that humor is the best cure for bad news. When we realized that I was not going to survive many more years, our jokes became more gruesome. Friends and relatives are now used to it but I would sometimes forget if another person was around. At a friend’s house, Michael and I were teasing each other and I said, “This from a man who is going to pull my plug! If this continues, he might pull it early!!” We all laughed expect the poor person not used to our talk who suddenly turned pale.
When the news was really bad, I found that nature was the way to work through my emotions and put things into prospective. We live along the ocean. Many hours have been spent with the top down and the heaters on in the car for long drives along the ocean, into the hills surrounded by mammoth redwood trees and deep forests. During these drives, we talked. Often we were just silent enjoying the splendor of nature with our favorite music playing softly. These drives allowed me to gather my strength.
We were dealing with: drug side effects, long-term disability insurance company and lawyer, Workmen’s Comp lawsuit and lawyer, loss of income, chronic illness, endless paperwork, good tests, bad tests, surgeries, acid reflux due to the drugs, Social Security Disability Insurance, my bed-ridden aunt (I visited every week and was in charge of her finances), not feeling well, helping the person who took my place at the school, adjusting to rehab everyday, and exhaustion.
In September 2006, Dr. K. first mentioned the possibility of lung transplants. It was a shock to both of us. She said that only 50% are alive after 5 years post transplant. It is not about extending life but about quality of life. If you are sitting on a couch needing 10 liters of oxygen just to survive, that is not living. You are willing to take a chance of dying on the table for maybe another few years. It is the least successful of all the transplants.
We stumbled out of her office and began the long walk to the car. Michael asked, “Where do they get the lungs?” “Where do you think?” I replied. “Dead people?” he asked. A minute of silence. “So, if you get a man’s lungs, are you going to pee standing up?” he asked with a grin. “Certainly!” I replied. It went down hill from there and we were roaring with laughter when we got to the car. Somehow, the thought of transplants has not been so daunting since then.
Finally, I believe that we all have a choice on how we leave this world. I do not want my family to say, “Thank heavens she’s dead. She was so miserable these past few years.” I want them to say, “She stayed positive and active until the very end.” Death is going to have to chase me because I am not going to sit around and wait for it. I want to leave with dignity and grace.
Friday, October 16, 2009
Your entire life is an open book: childhood, teenage years, marriage, children's lives, past and current drug or alcohol use, relatives health, past jobs, finances, and so much more will be investigated. I promise.
How do they investigate? Web searches, bank records, phone records, listening to cell phone and home wireless phone conversations and a GPS system hidden on cars. Yes, they also follow you. All day. Every day for months.
In January 2006, I had begun working out at the other hospital three days a week and had to bring my own oxygen with me. Going up and over the pass, I noticed that my portable tank felt light. Oops! I had forgotten to fill it. As it is a dangerous pass, I waited until I reached the top of the hill, got into the left turn lane and pulled into a huge parking area to turn around to head back to the house to fill the tank. As I prepared to pull out into traffic, a new white pickup truck came screeching to a halt and a young white guy just stared at me. Neither of us moved for about 15 seconds. It felt like a long time. I took off with him following behind me.
After this episode, I became an expert in finding my shadow in traffic. I also made a game of losing them. I got so good, in fact, that I said to my mom on our wireless phone for their listening benefit, “They all look alike: all young white boys in trucks. If they put an Asian woman in a fancy car, I wouldn’t spot her.”
The next morning, I didn’t notice a Mercedes station wagon fighting to get behind me at a stoplight to go over the pass until people began honking their horns. Funny, it was an Asian woman. She clearly was not a pro. After we cleared the pass, I was over a ½ mile ahead of her on the 2-lane freeway. I moved to the right lane, she moved to the right lane. I moved back, she moved back. This happened four times. Finally, I knew that there was an off ramp just at the end of a large curve in the road and a truck would block her view of my exit from the freeway. Worked like a charm.
Often, I would drive in the left lane and make a quick, last minute right turn. They would expose themselves by following me. I would then pull over and they would have to pass me. Sometimes I even waved as they passed by.
It was really creepy and I soon became angry. I am not faking an illness! This went on for months. I told the nurses at rehab and they told me not to do or change anything, I was how I was, continue on with my life and ignore them. That was easier said then done. I noticed that they were finally gone in April of 2006 but we always watched what we said on the phone until we finally settled the claim in February 2009. That is a long time to be looking over your shoulder.
Next: Dealing with Bad News
Thursday, October 15, 2009
When I speak with other disabled people with heart or lung disease, one subject is always discussed: disability parking. Everyone has a story. Here are a few of mine:
There is something call Activities of Daily Living. I found that I could do two activities a day without having to “pay” for it the next day or two. For example, I could go to rehab and take a shower; food shop and cook dinner; or yard work and go out to dinner. Sometimes, with the muscles and stamina I have gained with rehab, I could begin to add a third activity maybe once or twice a week.
A disability parking space allows me to not have to carry heavy oxygen into stores and it saves just a bit of energy that I don’t have to use walking across a parking lot. I imagine gathering all these energy saving nuggets we learned about in rehab so I can add one more activity that day. It really makes a difference by the end of the day. I could maybe even cook dinner!
Within a year of rehab, I was so proud to be able to food shop by myself and later, actually lift the groceries into the trunk. One afternoon, I was thrilled and very proud of myself for being able to do it all without oxygen. As I shut the trunk, a man walked by and said, “Disabled? I don’t think so!” and kept walking. I was furious. I wanted to run in after him and tell him what I had and how it has been a struggle just to do minimal tasks. Instead, I drove home. I had been so surprised that I didn’t reply quickly enough though nasty responses flooded my brain for days.
It is always men who confront me.
The first time it happened, we were in a very bad period of the disease. We had planned all week to go out on Friday night to our sweet Chinese restaurant 45-minutes away. A real treat. We agreed not to talk about the disease at all that evening. It was going to be a special time for us to forget, just for one night.
After dinner, we parked the convertible in a disability spot at Trader Joes. Heading back to the car with one bag, we were laughing and feeling great. An older man stood in front of our car and said, “Which of you is disabled?” with disgust in his voice. I raised me hand, “I am!” “You don’t look disabled,” he replied. With that, Michael said, “Mister, you shouldn’t have said that,” then climbed into the car to watch the fireworks.
It took me just over five minutes before he apologized, hugged me and wished me good luck. My sweet husband told me that I had totally verbally humiliated the old guy. Good. I didn’t want him to ever do that to another disabled person again.
Not all disabled people appear disabled.
Next: Private Investigators
Wednesday, October 14, 2009
On November 18, 2005 a janitorial crew was operating a pressure washer system to clean the outside of the portable and oops, there was a malfunction and the portable caught fire. Most of the damage was to the IT area and the west side of the building.
Everyone was moved out of the portable due to the fire damage and smell. So the work began: new roof, new siding, new windows, and new carpet in our classroom and office (though no water or fire damage reached our office or classroom…hmmmmm). During the Winter Break, the maintenance department removed the north wall – the one mentioned in the May 2005 mold report and redacted – and totally re-built it. Unfortunately, it was raining when they removed and replaced the siding.
When the music teachers arrived back to work at the first of the year, the inside walls were warped due to moisture. It all had to be re-done. Also, there was a horrible smell. They installed three huge industrial sized fans with hepha filters and ran them for weeks, 24 hours a day. Funny, when they came to take air quality tests, they turned off the fans then took the air quality tests. Hmmmmm. Wonder what the tests would reveal if they were kept off for several days before the tests? Anyway, the classroom was not able to re-open until March or April of 2006.
I finally figured out how I got sick. We had moved the music department into the portable for school year 1998-1999. Why was I not ill until late 2002/early 2003? The answer is new janitors. We always left the door opened from our office into the classroom because the thermostat and cold air return were in the classroom and the actual hot air vent was in the office. When the new janitors arrive, the Head of the school said that they must close and lock all doors. At a meeting, I asked that our office door be left opened. I explained the heating situation and that when I arrived to the office at 7:00AM; it was 90 degrees in the office and freezing in the classroom. The heater would be running all night. My request was denied, as it would “confuse” the janitors.
Now I know that when I sat in that office for hours every morning, I was inhaling all the concentrated antigens that shut down my lungs.
Next: Parking Wars
Tuesday, October 13, 2009
While I was out in October, one of the IT people was working at his desk when the head of maintenance and a hired HVAC man opened a locked closet door in the IT office. His ears perked up when he heard them say in unison, “Oh shit!” and quickly re-locked the door. Inside the closet was the heater for the portable. It shared a wall with my office.
Later, he tracked down the maintenance head and asked what was going on. He was told that he couldn’t tell him but he could show him. They opened the door. There, under the heater, the entire platform was covered with mold and rat feces.
Knowing the causes of my disease, he grew concerned about his own health. He called OSHA – Occupational Safety and Health Administration – which is the government agency who is to protect workers in their workplace.
They dropped in for an inspection.
The Head of Human Resources, the Head of Maintenance and the OSHA inspector arrived together in his office. The inspector pointed to the locked closet and said, “Open it.” There before them was the mold-covered platform scattered with rat feces. “That is mold,” the inspector said. “We don’t know if it is mold or not before it is tested,” the HR person said. “Lady, I have a PhD in biology. I know mold when I see it.” And with that, he gave them a citation for mold, rat feces and water intrusion.
The portable was shut down. No one was allowed in it.
After denying to me for months that there was any problem with the portable, suddenly lots and lots of money was being spent on mold reports and environmental services companies. By the way, the company hired in May to show that there was nothing wrong with the portable was not hired again. Hmmmm.
It was also noted that the north side of the portable needed to be totally re-done from the foundation up. That was also mentioned in the May report and redacted. Funny, it now needed to be replaced. I took these photos of the portable and the water pooled on the carpets in my office while I was still on campus.
Next: Fire in the Portable
Monday, October 12, 2009
Life had dramatically changed. I went to a hospital about 12 miles away on Tuesdays and Thursdays for an eight-week class regarding lung disease. For the last 45-minutes of the class, we exercised under the supervision of RNs and Exercise Physiologists. We were assessed before and after we exercised including heart rate, oxygen saturation rate, and blood pressure. When the 8-week classes ended, I entered the maintenance program of two exercise sessions a week. After rehab, I would take a nap and use the following day to recover. It was grueling. It was discovered that I needed supplemental oxygen. Every three months, a report is sent to Dr. K.
I was the youngest in the class. By decades.
At work, I had recommended a music teacher to take over my position. We talked several times a day and, quite frankly, I directed him through the entire first year. He needed me less the following year and hardly at all the third year. I never went back onto the campus.
In September 2005, I filed a Workmen’s Comp lawsuit. I also disappeared in the eyes of the school community. No letter was sent home regarding my absence. No thank you celebration for 16-years of hard work. Nothing. Ever.
In October, Dr. K. ordered PFTs and a CT. These were the first tests since I left the portable. Dr. K. told me that the “ground glass” was gone and I had an impressive increase in my PFTs. She turned to us and said that this is the proof that I had been removed from the exposure causing my illness. She said that I would never return to any work, could not fly on airplanes, be very careful about germs, don’t be around groups of people and keep washing my hands. We also ordered oxygen for my home, as I needed it to sleep at night. She also approved two more days of rehab at another hospital using supplemental oxygen. Yippee!
The school had denied my Workmen’s Comp claim; we hired a lawyer and began what turned out to be a four-year odyssey. By now, the people still working in the portable began to worry about their health. One called OSHA.
Sunday, October 11, 2009
As the tests continued and the illness played out, it became clear that I was not going to recover as hoped and that, in fact, this was a fatal diagnosis. I shared all information with my family with no drama attached. Simply stated the facts. I always tried to find a positive statement to make going forward. With bad test results and new problems, I knew that I had to be strong because everyone was watching me to gage their own reactions. In doing so, I often felt like I was the sick one holding up my husband, son and mother. Comforting them.
I was angry that the school administration knew about the portable and still let me work in it knowing I was having breathing problems. I was angry that my life was going to be greatly shortened. I was angry until I realized that the people who made these decisions continued on with their lives with nary a thought of me. It is then that I realized that the anger could only do me harm. I would save my anger for when I faced them in court.
Depression never entered my body though I think all the exercise helped. With very limited time here on earth, I refuse to waste one moment of one day being depressed.
Since we married, who ever left the house first in the morning was walked to the door, kissed goodbye and sent off on their day by the other. One morning when the future looked so very dim, we were standing on the front porch looking at the garden and beginning to say our goodbyes when he said, “You promised me that we would grow old together. I don’t think I can go on without you. I think I will just off myself after you die.” I grabbed the front his shirt and said, “Listen Mister, I am putting you in charge of our future grandchildren. You have to tell them about me. You have to be the grandparent for both of us. Buck up.”
About a year later, I had a conversation with him and a separate one with our son. I wanted them both to hear from my mouth to their ears that it is okay for Michael to re-marry. It is important to me that our son supports it, if it happens.
I deeply missed my job. I missed the children and I especially missed the income. In a future blog I will write about the financial implications of being disabled. It is not pretty.
Next: Back to our story – The Proof is in the PFTs
Saturday, October 10, 2009
In May 2005, we had focused on the portable building on the school campus as the cause of the exposure. I loved the school and didn’t want to panic the parents. The disease only affectes 1 out of 10 people exposed and the students spent only an hour in the room twice a week. I spent a minimum of ten hours a day in the building.
During the May appointment with the resident at the clinic, he interviewed me then came back with a doctor I had never met before. She was the new head of the clinic. She began by verbally dressing down the resident for not insisting to the school that I be immediately removed from the portable. She turned to me and said that I was never to set foot again into the portable. Never. She then turned to Michael and drilled him on my sleeping habits and noises. She left the room. We all looked at each other and I said, “Well, we all have just been spanked!” She was terrifying. I was used to dealing with famous people at the school and soon learned not to be intimidated by anyone. But, Dr. K. totally intimidated me.
The resident wrote the school to tell them that I was to be removed to another work area and not allowed into any portables on campus. The problem was a lack of space. My materials were still in the office and I had to go into the building several times a day to retrieve needed documents. It was frustrating.
As I worked through the summer of 2005, I was in the portable a lot. I was not feeling well yet still girded myself to begin the new year in mid-August. It was a surprise when I arrived at my mid-August appointment with the terrifying Dr. K – who was now my doctor – that this meeting would change my life. She would not allow me to return to work. I was devastated yet oddly relieved. The thought of another very busy year ahead had become overwhelming. I didn’t know where I would find the strength.
I had earlier complained about the weight increase due to the prednisone and she had ordered an exercise test to see if I was strong enough to exercise. During the test, my arterial blood gasses dropped to 59% at one point. She gave me permission to begin a Pulmonary Rehab program at a hospital closer to my home. I was not to exercise outside of this setting. She also ordered a sleep apnea test.
My beloved rehab began on August 23, 2005. It, too, has changed my life.
Next: An Emotional Break
Friday, October 9, 2009
This information gave me the strength and confidence to carried me through the early stages of the Workmen’s Comp lawsuit. I knew that we were on the right track.
When we discovered that portable buildings are known to cause my disease, my doctor requested a mold report from the school. The end of the year was coming and no one ever showed up to test the portable. I learned of a mold test kit at Home Depot. In May, I followed the instructions, placed the test kit on my desk then sent it off it to be analyzed.
The very next day, a man with a test kit arrived to test the building. The lower school music teacher watched while he took over a dozen tape samples of different surfaces in the classroom and our office. A dozen. When I was given his final report, there were only 4 samples listed. He had also recommended that the portable needed a lot of work around the foundation due to water intrusion, which he later redacted. Hmmm. No mold. Everything was just dandy.
My little mold report came back with a specific mold listed as being prevalent in the air. His fancy report showed no mold. Hmmmm.
I smelled a rat.
Next: The Terrifying Dr. K.
Thursday, October 8, 2009
I requested that the ceiling tiles be cleaned. A week later, we arrive to find rat feces covering our desks and the carpet. They had tipped the tiles to remove and clean them thus scattering the feces to the surfaces below. Rats had caused a disturbance by fighting with a family of cats underneath our office floor one morning, we would find dead rats in our office, we even had a rat trap in the office and one aggressive rat dropped down from an opening where the tile had not be correctly replaced and watched us from the top of the door. These were BIG rats.
In March 2005, I began my love/hate relationship with Prednisone. We began with forty mgs. for seven weeks. I gained 35 pounds, got the “moonface”, and became totally manic (produced over thirty programs at the school and could have tap danced all night). It did raise my DLCO to 12 where it still sits today.
In March of 2005, the resident asked me a number of questions: describe my house, any water problems, any mold, my gardening habits, my work environment, and my hobbies. He gathered this data and talked with an environmental hygienist who worked with the university. They discussed everything including what instruments I played. (Apparently, woodwinds are known to have a mold issue. I play string instruments.) As soon as he said that I worked in an 18-year old portable building, she said, “Bingo!” These buildings are renown for this disease.
Next: Deep throat
Wednesday, October 7, 2009
The school site was on 33 acres. The lower school was an old mansion and the upper campus included the Middle School. As part of the Middle School configuration, there were two 18-year old portable buildings. One was the art room with a separate conference room and office and in the other building was the music classroom, two separate offices and the IT area.
After entering the music classroom, there were two doors for separate access to the two offices. The IT office ran the width of the space behind our office. Three of us shared one of the small offices connected to the large classroom. I was responsible for the music education of every student and all of the private instrumental lessons taught during the day on campus. This also included supervising, hiring and firing approximately nineteen instrumental and classroom teachers. It was a big job. I loved it.
After the biopsy, I felt really good during the month recovery at home: no funny noises when I breathed, no hacking cough, and Michael said that there were no more panting noises at night. Two weeks into the recovery period, I went to our shared office to check in with the lower and upper school music teachers. We talked for about two hours. Walking to my car, I was very out of breath and coughed the rest of the day. I said nothing to Michael about the symptoms and he didn’t know that I had gone to the school. He mentioned the next morning that the panting and noises were back when I slept. I confessed that I had been to the school. For the next four days, the coughing, noises and panting continued. Then they stopped.
Michael said that he was convinced that the trigger for the disease was in my office.
Next: Investigation of the exposure begins
Tuesday, October 6, 2009
“No more exercise until we figure this out,” he said. No more of our beloved walks along the ocean in the morning. They ordered Pulmonary Function Tests and a CT Scan. PFT’s are a series of breathing tests to measure specific functions of the lungs. I vomited afterwards. It is like asking a person who has a broken leg to jump up and down on it for two hours. The CT Scan revealed “ground glass.” Clearly something was wrong. For those lung people reading this blog, my DLCO was 7.7. They transplant at 7.
After a disappointing bronchoscope in November, it was decided that I needed a lung biopsy. On January 12, 2005, they deflated one lung then remove a small pie wedge from each lobe. That was fun. I won’t go into the draining tube coming from my lung and out near the shoulder blade, nor the removal of said tube with no pain meds on board, nor the tear in my bladder due to catheter problems, nor the month recovery. It was all worth it to have a correct diagnosis.
I waited to hear the diagnosis. Left messages. Waited. Days passed. It was the 22nd when I finally heard from the resident who “forgot” to tell me the results. HYPERSENSITIVITY PNEUMONITIS. He said that it was not even in the top 10 of their suspected Restrictive Lung Diseases. An environmental trigger of organic dust, fungus or mold causes it. He said that we would try to find out where I am being exposed and, after removal from the trigger and with the help of Prednisone, my lungs would heal. He also said that my lungs were better than expected and that they were going to see if they would heal on their own without drugs. We were so hopeful. He was so wrong.
Next: The suspected exposure
Monday, October 5, 2009
The journey begins in August of 2003 when a neighbor and I made a commitment to walk 5 miles three mornings a week. We gradually increased our pace to a 13-minute mile; I lost about 30 pounds, developed amazing thighs and was feeling great. I began to notice that I was out of breath at the beginning and end of our walks and sometimes I would cough. Odd. We loved our walks. We would watch the beginnings of dawn, which silhouetted the Coastal mountains against the slightly lighter sky. We saw dolphins swimming in the moonlight. It was magical. We walked in the rain, in the winds and in the cold.
While in Florida in January 2004, I noticed I was out of breath walking up a ramp. Odd. By May, I lost a lot of stamina, was out of breath a lot and coughed like I was losing a lung whenever I exerted myself. My walking partner said that she would no longer walk with me unless I saw a doctor.
But, I was a teacher and May was a very busy month. I was a classical bassist and head of a highly respected classical music program in a school for gifted children whose population included movie stars and captains of industry in the Silicon Valley. Internationally recognized names were in the school roster. I loved my job, the children, and the school.
I limped to the end of the year and made an appointment with my local doctor in early July. I was diagnosed with exercise-induced asthma; he gave me an inhaler and sent me on my way. I followed his instructions yet continued to grow worse as I saw him every two weeks for the entire summer. I asked to see a lung doctor yet he kept saying there was no need though he continued to increase the medications to no avail.
One of the parents at the school was my endocrinologist for a thyroid problem. I called him and explained my worsening symptoms. He wrote a letter to gain entrance into the university clinic system and I got my first appointment in October 2004 in the Chest Faculty Clinic.
Next: The correct diagnosis
Sunday, October 4, 2009
After many months of thinking about writing about my experiences and with recent encouragement from Dana, I have decided to plunge into the world of blogging. My promise to you, dear reader, is to be honest. In order to do that, I must remain anonymous.
In 2005 at the age of 52, I was diagnosed with a rare lung disease called Hypersensitivity Pneumonitis. No, I never smoked. It is a restrictive lung disease as opposed to obstructive lung diseases like emphysema, asthma and chronic bronchitis to name a few. There are over 200 restrictive lung diseases. It is a bad diagnosis.
With this blog, I will write about being diagnosed and the processes that followed medically, legally, socially and emotionally; current status; family.
An illness is often harder on the caregivers and loved ones than the person who is dealing with the illness. My walk through the final stages of life is with my best friend, my husband of 37 years. To understand how we are able to go through this with a positive attitude and humor, I need to share our beginning.
So that is the plan. You may have noticed the photo of this first blog. Every time I tell someone that I have a lung disease, they immediately look at my chest as if they can use their x-ray vision to see it. Thus, the photo of my chest.