Living Well with a Bad Diagnosis - Lung Disease

Sunday, February 28, 2010

Job Description

After reading through the previous blogs, I kept mentioning what a huge job I had at the school. I felt there was no one who could take over at a moment’s notice, which is why I resisted leaving even after my lung biopsy. The resident wanted me to leave but I told him I was functioning and wanted to stay. How very foolish of me. I often wonder if I did permanent damage to myself being in the portable from January to August 2005.

Some things still haunt me.

I look back on this and wonder how I did it all. It was a huge job. In the end, they broke up the position and stopped a lot of the performances and community outreach. Sad. It was such an amazing program. I hear that the head of the school wondered how I did it by myself after I left as others have refused to do it all. I guess I made it look easy but in fact, I was working my brains out.

So here, dear readers, is my Job Description for 2003-2004, which was pretty much the same for the 2004-2005 school year except for what I taught. It will give you a sense of the “largeness” of the job and will explain the minimum of 60 hours a week I put into the school since 2000. I have changed some things in order to keep it anonymous. *** replaces the names of the advanced music program and the name of the school.

Due to the constraints of the blog, the format of the document is reduced to its simplest form. Please excuse the minor problems.

Job Description

Acting Music Coordinator

It is essential that the Acting Music Coordinator have a broad overarching understanding of the educational philosophy of the *** School that is systemically foundational to the development of each student.

The key pillars of principles that must be at the forefront of any discussion of the Acting Music Coordinator’s responsibilities are: Integration and oversight of the diverse elements that constitute the Music Program at ***, Community Outreach/Service Learning, Social and Emotional Understanding, Lifelong Learning.

The main areas of responsibility for the Acting Music Coordinator is accountable include: curriculum design, faculty, performance programs, teaching, parent and alumni relations, financial and fundraising, and ***(Program for top instrumental students), instrumental and competition coordinator.

CURRICULUM DESIGN

· Integrate and oversee the curriculum of the General Music and Choral Programs

· Integrate and emphasize the overarching goals of the General Music Program

Enjoyment, satisfaction and love of music-lifelong learners

Participation in music

Sensitivity of musical sounds and styles

Emphasis on the relationship between music and other curricular areas

Social and Emotional awareness of the relationship between music and life

Musical skills are built upon a gradually enlarging spiral of activities and experiences

· Solo Review

Create schedule for the performance of every instrumental student at *** to be heard by the entire Music Faculty

Oversee the Solo Review process to assess effectiveness of the music teachers and the progress of the students

Ensure that the process addresses the Social and Emotional Understanding issues that arise from this format

· Mini Concerts

Hire musicians from a wide variety of genres to perform for all school events

Hire musicians to integrate music with a level’s thematic unit

Identify parents and other community members through community outreach who are able to present appropriate mini-concerts i.e. Indian music presentation, translation and explanation of Auld Lang Syne, bagpipe demonstration

· Master Classes

Through community outreach, interview and hire local and world-renowned musicians

Liaison between visiting artists and music faculty

Coordinate event to present to the *** community

Ensure that the children are secure and supported in this format

FACULTY

· Hire instrumental, classroom and choral teachers who support *** educational philosophies including lifelong learning and who support the social and emotional needs of the students

· Integrate and oversee the curriculum of the General Music and Choral Programs

· Oversee the integration of the overarching goals of the Music Program

· Mentor the Music Specialists

Oversee continuity of the Music Program

Ensure music basics and theory taught to all levels

Discuss and approve choral music

Oversee the integration of the general music classes with the choral program

Identify songs and listening activities, which integrate each grade level’s thematic unit

Ensure that the students are supported socially and emotionally in choir and general music classes, i.e. to be able to express opinions openly, safe environment to experiment with ideas and voices, questions are answered

Ensure that community outreach continues to bring the *** program to a broader audience and supports the larger community

· Integrate, coordinate and educate the Instrumental Music Faculty

Ensure continuity of the Instrumental Music Program

Educate Music Faculty about the school and the Music Program’s philosophies

Integrate music performed at one venue to another venue, i.e. performance at Student Recital repeated at Assembly, performance in Lunchtime concerts, played in general music class

Integrate and coordinate the music faculty with applicable Student Study Teams

Serve as liaison between Music Faculty, faculty/advisors and parents

Direct Music Faculty Meetings at least three times per year

Oversee the process of student evaluations

Oversee and maintain Music Studio schedules

On-going adjustments to facilitate the changing needs of the students

Create and maintain database of the music lessons for *** administration and faculty

PERFORMANCE PROGRAMS

· Performances – Each may include community outreach events, integration with other programs, coordination of performers, space, rehearsals, applicable instrumental teachers, *** faculty, Music Specialists, and/or Tech Crew

Tea on the Green

Halloween Parade

Grandparent’s Day Concert

Lunchtime Concerts – 15 per year

Winter Program

Holiday Sing Along

*** Competition Winners Concert

Instrumental Week – 4 concerts

Choral Night

Music Fund Raiser Concert

Student Recitals – 8 per year

Sing/Assembly – 36 per year

Solo Review

· Community Outreach and Service Learning

Arrange and organize instrumental and choral field trips, which may include service- learning opportunities

*** Avenue Open House – Instrumental Students and Junior Chamber Singers

*** – 6th grade choir

Senior Center and retirement homes – choir field trips

*** Hospice – volunteer choir

*** Country Club – Junior Chamber Singers

***, INSTRUMENTAL AND COMPETITION COORDINATOR

*** Program Coordinator

Organize and oversee the fall and spring auditions with strong understanding of possible Social and Emotional implications

Create tuition agreements with Business Office

Create and mail acceptance forms to scholars’ families

Accept students into the program with emphasis on a long-term commitment

Create and maintain parent volunteer schedule

Attend parent/teacher conferences of each *** Scholar twice per year

Counsel individual students with their progress throughout the program

Create performance opportunities through integration and community outreach

Choose and supervise *** parent chairpersons with Fundraiser Concert

Order and present awards for the end of year ceremony

Coordinate three *** Luncheons per year for the Scholars

· Tech Crew

Assemble, organize and teach

Oversee a rotation, which includes a mentoring between new and returning members

Integrate into the *** community by providing staffing for school wide events, i.e. Parent Association community events, individual instrumental studio recitals, Book Faire speakers, Alumni speakers, Music Program events

*** Competition

Community Outreach is the basis of this program as it brings *** Music Program to a larger community

Design *** Competition database for the mailings of the application

Create Application

Hire judges

Create and maintain all data received by the competitors and music teachers

Run the competition

Coordinate the responses to all participants with judges’ notes and certificates

Coordinate parent volunteers

Social and Emotional precepts are successfully included into the competition

Integrates the Winners with the*** community through the Winner’s Concert

· Admissions

Assess the proficiency levels of potential incoming students in a very supportive and positive manner

TEACHING

Exploring Jazz class in music block with 7/8 graders first semester and 7th grade the second semester

Academy (2 hours on Fridays) featuring a musical review of Broadway Showtunes culminating in an assembly performance

Instrumental students for holiday music on ***Avenue as community outreach

Lunchtime musical theatre workshop

Lunchtime Concerts

Directly teach performance skills and expectations of an audience

Tie individual pieces of music or instrument to the larger musical context

Speech class for the 7 and 8 graders

Opera a la Carte

Select students with an understanding of the Social and Emotional implications

Arrange rehearsal schedule

Run10-15 rehearsals to teach lines and blocking

Serve as liaison between the school and the opera company

Integrate the upcoming performance into the general music class by presenting the synopsis of the opera to PreK-8 grade students

How to run the lighting and sound equipment for the Tech Crew

Substitute teach for the Music Specialists and the large ensembles

Assist the Music Specialists with choirs

Sing/Assembly

Choose instrumental soloist and group music each week

PARENT, ALUMNI AND COMMUNITY RELATIONS

· Educate parents about the *** Music Program via phone, e-mail and articles in the School newspaper

· Guide the parents through the process of beginning and maintaining music lessons

· School Newspaper

Keep the *** community apprised of the Music Program events and enrichment opportunities

Parent education – articles about enrichment opportunities, ***philosophy and music program

· Create and maintain professional relationships with the area’s elementary, secondary and university communities and music program heads, Boards of Directors, classroom music teachers and instrumental teachers.

· Alumni Relations

Maintain contact with former *** students

Offer continued performance opportunities within the *** school events, i.e. assembly, evening Student Recitals, Music Department Fundraiser concert, 35th Anniversary concert, 25th Anniversary concert

FINANCIAL AND FUNDRAISING

Financial Administration

Contracts – create, develop and send to instrumental teachers

Oversee budgets

Approve purchases of classroom instruments, choral and recorded music

Negotiate ***salaries and fees

Coordinate with the Business Office the monthly paychecks for the ***teachers and choir piano accompanists

Identify families who are willing to underwrite mini-concerts

Oversee the music department fundraiser, which includes the funding of all school mini-concerts, classroom instruments, choral music

Saturday, February 27, 2010

Back to Rehab

During vacations or periods of doctor’s appointments or relative’s visits, I may miss a block of rehab time. This is not a good thing. I notice that my ankles and feet begin to swell and my muscles begin to lose definition in just a short period of time.

When I return, the rehab nurses reduce my time and levels on each apparatus. It takes weeks to work back up to the level I was before the break in my routine.

It is not fun going back for the first week. My muscles are tight and become sore afterwards. I need naps again after working out.

It is a struggle to return and I just want to forget fighting back once again. But, at this point, I see rehab as my job. I have to go. Also, people are expecting me.

After a week of working out in rehab, my legs are better, my muscles are defined and I feel so strong. I have to remember that as I fight to make myself begin once again.

Next: Job Description

Friday, February 26, 2010

Singing in the Rain

It’s raining.

The colder and the wetter it is, the better I breathe. I love it. My numbers are up in rehab and I am able to push myself harder.

In fact, when the sun is out and it gets over 70 degrees, I have a hard time functioning.

When I was first diagnosed, we thought we would have to move to a warm, dry climate. It turns out that the moist cool air is exactly what I need. Fans also help me breathe better.

I used to hate the rain but now it is a lovely sound on my roof.

Thursday, February 25, 2010

From Hong Kong with Love

One of the piano teachers at the school was of a very famous family from Hong Kong. Her family included five sisters. One was an international ballroom dancer and another was a top piano teacher. Others were also tops in their fields.

When I would drive to school in the morning, I would hear her recordings being played on the classical music radio station. She was probably the most famous of all the music faculty members though there were others almost up to her level.

During one summer, she and her friend started a school with her other sister and the three of them made a huge success of a piano summer school. She and her friend would stay with relatives in Hong Kong while she taught at the piano summer school in which the students would audition for one of very few cherished spots. It also was very expensive.

For some reason she liked me. She liked me so much that she told me that I was her favorite Caucasian. High praise from her. I think what she meant by that is that I worked hard and had manners which were both very important attributes to her.

She and her friend would take me to lunch a couple of time a year. I always felt like it was a test but I soldiered on and ate everything they ate. I am a bit squeamish about certain foods. Michael and William eat anything. I just don’t.

When we arrived at a Hong Kong restaurant, no matter where the host pointed us to a table, they always refused and chose one they wanted. Every time. I now do the same in Hong Kong restaurants. It is saying, “I may be a Caucasian but I know what I am doing.” We usually order from the other menu – the traditional one. I now know what to order!

They would always be stunned that I would eat everything they ordered. The waiter would always question them in Mandarin and point at me. They would respond, yes, that's right, she wants it too. The waiter was always impressed that I would eat it all. They never told me what I was eating until the end.

Though the years I have eaten: snake soup, the gelatinous matter from the shark fin which looked like snot but had pieces of crunchy cartilage in it, shrimp heads, pudding made of blood, goat, and a special soup for Spring which included an egg and black broth. It was delicious but I discovered that it too was made of blood.

The last time we spoke, she was very unhappy at the school. She felt that the children were too lazy to do good work. She felt that the parents were too soft. She was talking about going back to Hong Kong to teach. She has just a few kids in her studio at the school now and seems to be easing her way out. The program is just not the same after I left. She is done.

Her sister currently has the number one placed pianist internationally. She had the second placed student. I think she is searching for another good prospect and not finding it at my old school. It will be a sorry day when she leaves. Sadly, no one knows to fight to keep her and to find her high-level serious students. She brings so much credibility to the program.

She and her friend were at the memorial service on Saturday. She deeply respected GG.

She is one person I miss so much.

Wednesday, February 24, 2010

No Jinx, I Hope!

I have been weighing whether I should even write this blog or not. I may jinx it. Okay, here it goes:

I feel great.

It began to change after meeting with the doctors about my acid reflux and the problems after my Nissan surgery. We fixed the problems. When I met with Dr. K. last fall after all the issues were addressed, my DLCO had changed from 10 to a record breaking 13!

Since then, I seem to be feeling better and better.

This terrifies me!

As I have a chronic disease – “What goes up must come down.” I have been waiting for the other shoe to drop. Instead, I keep feeling better. I am breathing better and my stamina is better. I can even inhale longer.

Just better.

In my rehab class, my normal saturation rate on two liters of oxygen on the treadmill is 91%. It has been up to 92% lately. This is very rare!

My saturation rate on the recumbent bike has gone from a normal 92% on two liters to 93-94%. The normal numbers are changing. That is good.

I wonder if my recent weight loss may be part of this pattern. I can’t wait to see Dr. K. in May and have a test for my DLCO. I think it is going up.

Who would have thought that the fumes from the acid reflux going into my lungs at night could do so much damage? Or, is something else driving this?

Tuesday, February 23, 2010

Clueless

Mary phoned after she got home from her visit with us earlier in the month. She had spent the final two days with the twin and his family. During our conversation, she was concerned that she might have over-stepped her bounds by saying something to him.

While they were at the movies waiting for it to begin, the twin asked her how I was doing. She told him. Truthfully. He replied, “But she is getting better?”

She replied, “She is never going to get better.”

I thanked her for telling him the truth.

I was shocked that he didn’t get it. After all this time with Michael sharing all of our appointments and all of our ups and downs with him yet he still thought I was going to recover and be just fine?!?

Duh.

Michael doesn’t want to bring it up in conversation with the twin because he would know his mom shared it with me. He is waiting for the twin to broach the subject. May never happen.

Clueless.

Monday, February 22, 2010

More About GG's Memorial Service

When I became ill, Natalie tried to do my job and teach her normal schedule. It was, of course, impossible. I recommended the brass teacher to take over my job. He did great. It was a huge learning curve but he had the educational chops to pull it off.

He was ill for the Memorial Service but asked me to read the below:
Back in the fall of '05 I was desperately trying to maintain continuity in the music program going; actually, the music department was doing just fine but I thought the fate of ***’s premier instrumental program was entirely up to me. I was wrong of course but I knew one thing: GG had hired me years earlier as a trumpet teacher and I understood then, and now, that she expected much from her music faculty. The following reading is, for me, a fine reflection of GG's values. I found it amongst her files.
Here's the text of the reading I was hoping to do; in my absence I was hoping (me) might do the reading.
"Servant and master am I: servant of those dead,
and master of those living.
Through me spirits immortal speak the message
that makes the world weep and laugh,
and wonder and worship.

I tell the story of Love, the story of Hate,
the story that saves and the story that damns.
I am the incense upon which prayers float to Heaven.
I am the smoke which palls over the field of battle
where men lie dying with me on their lips.

I am close to the marriage altar,
and when the graves open I stand near by.
I call the wanderer home, I rescue the soul from the depths,
I open the lips of lovers,
and through me the dead whisper to the living.

One I serve as I serve all; and the king I make my slave
as easily as I subject his slave.
I speak through the birds of the air,
the insects of the field,
the crash of waters on rock-ribbed shores,
the sighing of the wind in the trees,
and I am even heard by the soul that knows me
in the clatter of wheels on city streets.

I know no brother, yet all men are my brothers;
I am father of the best that is in them,
and they are fathers of the best that is in me;
I am of them, and they are of me."

For I am the instrument of God.
I AM MUSIC
-Anon.
It was so much fun to see the kids I taught in Kindergarten all grown up and working in their fields of study. I loved seeing the parents I knew so long ago. It was lovely to see the founder of the school and a long ago head. It was uncomfortable to see the current head. She just gave me a little wave and scurried away.
I mostly loved talking with the music faculty. I so love each and every one of them.
The music needs to receive a special notice. A former student who arrived at the school in the early 70’s who is an excellent pianist and one of the violin music faculty members performed throughout the service. They brought us together with “Air” from Suite No. 3 by Bach.
We were asked to join together and sing two verses from Amazing Grace. Always a favorite and every child at the school knew that song.
After my reading, they performed Ava Maria with the violin as the voice. It was stunning. People around me began to cry.
After words from former students and GG's son, the pianist performed the most beautiful Moonlight Sonata I have ever heard. As it is a favorite, I have heard it performed many, many times. I closed my eyes just to drink it into my body and brain. Everyone was sobbing around me. The shear beauty of the music brought me to tears. I don’t have the words to describe how beautiful it was.
The school has a song that every child learned and was sung at the end of every performance. It was Let There be Peace on Earth. We were asked to stand and sing it together. It was so perfect.
Salut D’Amour by Sir Edward Elgar was played as we left the service.
We were served a lovely lunch where I was able to take a few grapes and a bite of bread as I talked with everyone.
It was a very satisfying day, which brought with it so many memories of my 14 years at the school.
My adrenaline was so high and I felt great! Many mentioned how great I looked and noticed my weight loss – about 40 pounds since I had seen them in 2005. The adrenaline wore off and I crashed about 5:00 that evening, I fell into bed at 6:30 and slept through the night. Michael said I snored. I, of course, deny that!
It will be a few days to collect all of my conversations and memories from the service and think about all the children I knew.
I deeply miss the school. I deeply miss the students. I deeply miss the faculty. I do not miss the hard work. I do not miss the administration.
My memories of the school, after everything that has happened, are good. It will be best to focus and remember the people and the music as I go forward.

Sunday, February 21, 2010

GG

When I went to work in the music department in 1994, the head of the program was a wonderful woman who put her life into the program and the school. She had PhDs in music and education from Stanford. One very smart woman.

She took time to explain processes to me, exposed me to choral music which was totally new to me, showed me how to teach the music classes, made me sing with the alto section of three choirs which greatly improved my singing range, shared ways to manage the instrumental faculty, taught me how to produce a program, and how to write a paper for publishing.

She was generous with information. Often people in administrative positions keep information to themselves almost as a power play. She felt that I needed to know everything: problems with a music faculty member, a teacher, a parent or a student. She wanted one voice to come from the department.

She didn’t have a good reputation when I arrived. She constantly had to explain her program to new faculty members who felt they knew better. She was pragmatic in her running of the program. As each new head of the school arrived, they wanted changes. She would adapt but would fight for the core values of the program. She was tough.

When I first began working with GG, people would ask me how I could stand working with her. I thought that part of my job was to change this perception. I never complained about her. When something amazing happened in the class, I would tell members of the school faculty. Within the year, her reputation was restored and challenges to the program ended.

In 2000, she was forced to retire at 71-years old, before she was ready. She felt she had five more years in her. In truth, I noticed that her patience had grown short, she was yelling more at the kids in choir and the classroom, she was irritated in processes because she had done everything before, she was moving slowly and just looked tired.

She was not happy that I replaced her.

She sold her two homes in the Palo Alto area and moved to Florida to be near other family. I saw her about two years ago. She was still sharp but was in a wheelchair. It was sad to see this strong, feisty woman depleted.

The music program at the school has greatly changed since I left. This made her very sad. I told her that her program was continuing through Natalie. She was teaching in the same manner as the old program. That made her smile. I wanted her to know that what she taught me, I taught Natalie and it continues on.

That was the last time I saw her.

She died on January 25th at the age of 81.

The memorial service was yesterday.

The number of people who attended the service stunned me. The crowd included lots of former students and parents, former classroom teachers and administration people as well as many members of the music faculty. It was so good to see everyone who I have not seen since 2005.

The service included music performed by two extraordinary professional musicians. It was stunning. The pure beauty of the music brought tears to my eyes.

I can never thank her enough. I was a good head of the program when she retired because of what she taught me.

Next: More about the Memorial Service

Saturday, February 20, 2010

Identity Theft

On a lovely Saturday afternoon in January 2008, I went out to get the mail. There was a note in there from a credit card company to confirm a change of address for us. As we did not apply for a credit card, I called the company immediately. We stopped the card but not before $6,000 of computers were ordered from HP.

That afternoon I learned a lot about identity theft.

I learned that there is a government web site that includes a form to be sent to the FTC with a checklist of things to do. By the end of the evening, we had filed the form online, contacted the credit bureaus, put a fraud alert on our accounts, set up passwords at our banks and filed a police report. We also signed up for LifeLine. It has stopped three other attempts.

During the investigation, a person from the credit card company was questioning me. He asked where I suspected my ID was stolen. The day my credit was checked was a day I was at the university hospital. I felt that it was stolen there.

The credit card company investigator said, “Hmm.” I asked, “Hmm what?”

It turns out that he had six new claims to investigate. I was number five. All of us had a connection to the university hospital.

Later, I learned that 90% of all ID theft is from hospitals and doctor’s offices. They have our Social Security numbers. Also, remember that Medicare uses Social Security numbers as their form of ID. It is in our files.

The frustration is that we know where the thieves live. We also have their phone number. We reported it all to the police. I even reported it to the security of the university hospital who asked what I wanted done? I replied for them to see who accessed my file on that specific day. That would at least narrow down the suspects.

Nothing was done. ID theft is not worth pursuing by the police. The thieves are smart enough to live in one county, order goods from another county then bill a credit card to someone in a third county. None of the counties share information or care.

When I heard that there is a push for all of our medical records to be available on computers to be accessed everywhere, I can only imagine the huge increase in the level of ID theft.

Friday, February 19, 2010

Sleep Apnea

It is nasty. It can cause heart attacks, strokes and death.

It is Sleep Apnea.

People with lung disease often have Sleep Apnea and most are tested for it. I was tested in 2005. I did not have it but they did discover that during REM sleep, my oxygen saturation rate dropped into the low 70’s. It should be 100%. This is when they discovered that I needed to use my regular supplemental oxygen at night.

Sherman had not been feeling well. He seemed to be out of breath more than usual. He talked it over with the nurses at rehab and his doctor.

About two weeks ago, he was telling me that he falls asleep in a recliner during the evening after dinner then wakes up around 11:00 to go to bed. His daughters have told him that while he is asleep in the recliner, he flails his arms and legs. I knew that was a possible sign of Sleep Apnea.

I told him about Sleep Apnea and its relationship to lung disease. He called his doctor and arranged a sleep test.

A sleep tests is interesting. It begins with an arrival to the hospital in the evening while in PJ’s, sitting in a chair while they hook up electrodes to different areas of the head with a gooey gel, tape tiny microphones under a nostril and near the corner of an eye, and sensors on the arms and legs.

Now the climb into the bed is a bit interesting with all the wires. Try to sleep! They don’t want the patients to use any sleep aids as it may affect the results of the test. During the night, cameras are keeping track of each patient and the images are fed into a room of people who monitor the tests throughout the night.

If there are 10 or more incidences of the patient stop breathing during each hour, the diagnosis is Sleep Apnea.

Sherman got his test results. His saturation level went below 50% during the test. It is amazing that he did not have a stroke, heart attack or died from lack of oxygen. He doesn’t know how many times he stopped breathing during the night but they did diagnosis him with Sleep Apnea.

He got his equipment and slept with it for the first time last night. He said he slept for six hours – the longest he has slept in many years. He was thrilled.

He is going to feel so much better.

Thursday, February 18, 2010

DLCO

This photo is of Pulmonary Function Testing equipment. There is a hose that goes from the computer to the patient with a mouth apparatus like a scuba mouthpiece and the nose is pinched closed so the breathing only goes through the computer.

That took a while to get used to. During one test, the door to the glass box is closed and pressure is used to measure lung capacity. During the test for the DLCO, gas is inhaled and is monitored to determine how long it takes for it to clear.

The full bank of tests takes between 60-90 minutes as each test has to be done three times. If there is a variable, the test has to be repeated until there are three similar results. It is exhausting.

My biggest issues are DLCO and the Single-Breath test. The Single-Breath test measures the downward progress of my disease.

I found a web site that describes the DLCO test and why it is so important. It is a bit "medical” and may be a bit of a bore but some people might be interested.

It won’t hurt my feelings if you don’t want to read or try to understand it. It even took me awhile to understand it all. Please don’t miss the comments at the end.

Diffusing Capacity

Understanding gas diffusion through the lungs requires recognizing the basics of the gas exchange interface and of the various forces at work by which oxygen and carbon dioxide move by molecular diffusion. Diffusion is limited by the surface area in which diffusion occurs, capillary blood volume, hemoglobin concentration, and the properties of the lung parenchyma that separate the alveolar gas from the red blood cell with the capillary (alveolar-capillary membrane thickness, presence of excess fluid in the alveoli)

Because all lung volume is not exchanged, most gas exchange occurs as a function of diffusion independent of bulk flow. The role of ventilation is to reset concentration of the bulk flow of gas with the ambient air and to provide a constant gradient for oxygen and carbon dioxide. As spirometry measures the components of this bulk flow exchange, diffusing capacity measures the forces at work in molecular movement with its concentration gradient from the alveolar surface through to the hemoglobin molecule. The clinical test diffusing capacity of the lung most commonly uses carbon monoxide as the tracer gas for measurement because of its high affinity for binding to the hemoglobin molecule. This property allows a better measurement of pure diffusion, such that the movement of the carbon monoxide in essence only depends on the properties of the diffusion barrier and the amount of hemoglobin. The properties of oxygen and its relatively lower affinity for hemoglobin compared with carbon monoxide also make it more perfusion dependent; thus, cardiac output can influence actual measurement of oxygen diffusion measurements.

Diffusing capacity of the lung for carbon monoxide (DLCO) is the measure of carbon monoxide transfer. In Europe, it is often called the transfer factor of carbon monoxide, which describes the process more accurately. DLCO is a measure of the interaction of alveolar surface area, alveolar capillary perfusion, the physical properties of the alveolar capillary interface, capillary volume, hemoglobin concentration, and the reaction rate of carbon monoxide and hemoglobin. After a number of simplifications, the commonly used clinical tests to measure DLCO are based on a ratio between the uptake of carbon monoxide in milliliters per minute divided by the average alveolar pressure of carbon monoxide. Overall, DLCO is expressed as the uptake of carbon monoxide in milliliters of gas at standard temperature and pressure, dry, per minute, and per millimeter of mercury driving pressure of carbon monoxide. In principle, the total diffusing capacity of the whole lung is the sum of the diffusing capacity of the pulmonary membrane component and the capacity of the pulmonary capillary blood volume.

All methods for measuring diffusing capacity in clinical practice rely on measuring the rate of carbon monoxide uptake and estimating carbon monoxide driving pressure. The most widely used and standardized technique is the single-breath breath-holding technique. In this technique, a subject inhales a known volume of test gas that usually contains 10% helium, 0.3% carbon monoxide, 21% oxygen, and the remainder nitrogen. The patient inhales the test gas and holds his or her breath for 10 seconds. The patient exhales to wash out a conservative overestimate of mechanical and anatomic dead space. Subsequently, an alveolar sample is collected. DLCO is calculated from the total volume of the lung, breath-hold time, and the initial and final alveolar concentrations of carbon monoxide. The exhaled helium concentration is used to calculate a single-breath estimate of total lung capacity and the initial alveolar concentration of carbon monoxide. The driving pressure is assumed to be the calculated initial alveolar pressure of carbon monoxide. The calculated DLCO is a product of the patient's single-breath estimate of total lung capacity multiplied by the rate of carbon monoxide uptake during the 10-second breath hold.

Hemoglobin concentration is a very important measurement in interpreting reductions in DLCO. Because the hemoglobin present in the alveolar capillaries serves as a carbon monoxide sink such that oxygen and carbon monoxide are removed from dissolved gases, the concentration gradient from alveolar to arterial blood remains relatively constant in favor of dissolved gas flow toward the arterial circulation. In this way, a DLCO may be decreased when the patient is anemic. Because the level of hemoglobin present in the blood and diffusing capacity are directly related, a correction for anemic patients (DLCOc) is used to further delineate whether a DLCO is decreased due to anemia or due to parenchymal or interface limitation. Recent work suggests strongly that the practice of dividing the calculated DLCO by the single-breath estimate of total lung capacity (VA) to correct for low lung volumes (the DL/VA ratio) can yield a large number of false-negative results, and this practice should be used cautiously if at all.

A list of conditions associated with abnormal DLCO is listed. Diseases such as interstitial pulmonary fibrosis or any interstitial lung disease can make the DLCO abnormal long before spirometry or volume abnormalities are present. Low DLCO is not only an abnormality of restrictive interstitial lung disease but also can occur in the presence of emphysema. In emphysema, the lung volumes may be normal or hyperinflated; therefore, the DL/VA is not useful. Additionally, the loss of alveolar surface area, the pathologic lesion of emphysema, is not proportionate to volume. Thus, one can understand that other obstructive entities that predominantly affect the airways can have similar spirometry, but a low DLCO implies a loss of alveolar surface area consistent with emphysema. Unfortunately, it is not always this simple. Some forms of interstitial lung disease can have components of restrictive physiologies, such as low lung volume and clear evidence of decreased diffusion but also can have airway flow limitation. Sarcoidosis and Wegener's granulomatosis can produce an endobronchial component of airway webs or strictures, limiting flow before overt volume loss, and sufficient interstitial granulomatous inflammation to reduce the DLCO.

Well, that was interesting. Are you still with me? That is just one test. There are a huge number of Pulmonary Function Tests to measure for everything even muscle tone around the lungs. Really rather fantastic. When I had my first PFT, I must have done at least 10-12 different tests. Now I do 5 or 6 regularly that track my specific disease.

Lungs are far more difficult to treat and understand than I ever would have guessed. These tests allow an effective way to gather data regarding the progress of the disease without surgery or high levels of radiation CT Scans. Thank goodness!

Wednesday, February 17, 2010

Home Alone

A couple of weeks ago, I was talking with a dear friend who sent her last child to college and their house was now an empty nest.

When William left for college, people would ask how we were doing about the whole syndrome thing. We quickly learned to just say how much we missed him. That usually stopped any more discussion.

Over lunch, I told my friend the truth: We loved being alone in the house. We didn’t have to close bathroom and bedroom doors, cook large dinners, have certain food in the house anymore, be home at a certain time, less laundry, we could meet for dinner before going home, we could take off for a weekend or a long drive and so much more.

We mostly noticed that it was great to not wear a parent hat everyday. We reverted back to the couple we were before we had a child.

But, if you say all this to people, they look at you like you didn’t like your child, or he was a difficult teen and you just wanted him gone. All not true. We adored him and he really liked us.

My friend started to smile. They were feeling the same way and beginning to really enjoy being just the two of them together again. Yes, it was great to have everyone home for the holidays but it was nice to get back to just the two of them.

Our empty nests are just fine, thank you very much.

Tuesday, February 16, 2010

Morning Laugh

One morning I was reading a blurb on Yahoo’s front page and just had to read more. The title was:

10 Things Never to Say to Your Man

Oh, this was going to be good. As I was waiting for the window to open, I read the title out loud to Michael as he sipped his morning coffee. He turned to me and asked:

“Only 10?”

It is so great to start the day with a good laugh!

Monday, February 15, 2010

Diet Update #2

Photo is of one pound of fat.

Everything is still going well except for a small Valentine's Day blip of homemade chocolate cake - thank, Jill. It was delicious!

I am wearing some clothes that I have not worn in awhile. It is also a great feeling to wear my tightest jeans and being able to put my fist between the waistband and my waist! Love the loose fit!

It was rather disappointing when the rehab RN was preparing my three-month report to Dr. K. last week and weighed me. I weight one pound less than in October.

One pound.

I knew I put on weight over the holidays. I didn’t realize it was as much as it was.

So from this point forward, I am charting new territory.

I know that it is every day.

I know that I have to have a plan every morning.

I know what I have to do.

What’s that logo?

“Just do it.”

Sunday, February 14, 2010

Happy Valentine's Day

Michael is someone who does not like to give gifts when expected. I understand that. He gives me amazing things throughout the year, just never today or Christmas or my birthday.

I have gotten used to it.

The bottom line is he feels he doesn’t need a holiday to show me how much he loves me. The daily things he does for me: the phone calls when he is warning me about traffic or the weather, noticing when I need a car ride down the Coast, a beautiful watch just because, making coffee and breakfast, flowers because they reminded him of me, just a note left on the counter or so many other things.

The thoughtfulness.

The caring.

I feel like it is Valentine’s Day everyday. I am one lucky woman.

Saturday, February 13, 2010

I Did It!


I did it! I actually brought up the issue I wrote about earlier in this blog about our financial situation and the relatives.

It just happened.

On the phone, a relative was telling me how much money they earned last year. I was able to bring up that people think that we are rich because we have never spoken about our financial situation.

I continued: As I was the only earner in the family when I got sick, I mentioned that we lost our income. All of it. We also had lots of additional medical costs along with little income. It has been very difficult.

She responded that she knew I had inherited money from my aunt. I told her that it is invested as I was trying to build some kind of income and it was not even a lot of money. They all assumed I was rich. She was shocked.

I was able to set the record straight.

It felt really great.

Next: Happy Valentine’s Day

Friday, February 12, 2010

Children in Old Portable Buildings

Someone asked me if I would allow my child to be taught in a portable classroom. That depends. If the portable was under 10 years old, I probably wouldn’t worry. Remember, these building were originally set up on school campuses as a stopgap until buildings could be constructed. They were built to have a life span of 10 years.

The problem is that the money ran out and the “temporary buildings” became permanent. It was also mandated that most of the new school buildings in our state be portable buildings as they were so much cheaper.

It is now 20 years later.

If I were a teacher assigned to one of these old portable, I would refuse to teach in one. I would not allow my child to be in one all day as he probably has the 1 out of 10 genetic pre-disposition to get my disease.

There is a lot written about the problems with these portables on the Internet. They focus on the inside pollutants though my disease was primarily caused by a "filthy environment" including inhaling dried urine and rat feces, I still found them informative and scary as the portable are known to cause my disease.

This report was written in the late 1990’s:

Reading, Writing and Risk

Air Pollution Inside California’s Portable Classrooms

To quote the summary from their site:

This California report examines the air pollution risk levels in the State's portable school facilities, the State's response, and recommendations for protecting children's and teachers' health in these types of classrooms. The report reveals that over two million California students spend the school day in buildings that may be harmful to their health. It states that some portable classrooms can expose children to toxic chemicals at levels that pose an unacceptable risk of cancer or other serious illnesses, but that California has no indoor air health standards for most toxins found in these types of buildings and has failed to exercise effective oversight of air quality. What types of pollution health risks that exist in portable classrooms are detailed, particularly risks from formaldehyde and carbon dioxide. Additionally reported are the unintended consequences of the State's push for the use of portables to address student population increases.

Here is a sample from their report:

California has no indoor air health standards for most toxins found in portables. The state has failed to exercise effective oversight over air quality in portable classrooms.

About 162,000 children in Los Angeles, and more than 2 million statewide, spend the school day in buildings that may be harmful to their health.

No Standards, No Monitoring, No Action

According to estimates by independent school analysts, over 86,500 portable (or “relocatable”) classrooms are in use in California (EdSource 1999). The number is growing each year, as districts are caught between their severely limited post-Proposition 13 ability to raise funds for new construction and state mandates to reduce class sizes. Although portables have been in use in California since before World War II, they have multiplied rapidly since 1996, when the state offered school districts cash bonuses for reducing class sizes — payments sufficient to buy or lease portables, but often not enough to build permanent facilities. Between 1991 and 1999, state officials estimate that the number of portables in use in California doubled (Peoples 1997). “As a consequence,” writes one education analyst, “many California schools now look more like migrant camps — row after row of drab wooden boxes of uncertain safety.” (Schrag 1998)

California has no indoor air health standards for most toxins found in portables. Those that do exist are based on the risk of short-term health effects, ignoring the long-term potential for these chemicals to cause cancer or other serious illnesses. California’s standards for airborne chemicals are based on supposedly safe levels of exposure for the average adult male, not children and other sensitive populations. Nor do the standards for individual chemicals take into account the cumulative effect of exposure to a combination of pollutants.

Worst of all, in the face of mounting evidence that childhood exposure to toxic chemicals can retard mental and physical development, the state has failed to exercise effective oversight over air quality in portable classrooms. There are no enforceable regulations, no monitoring programs, not even restrictions preventing manufacturers from continuing to sell portables to schools after the company’s buildings have been repeatedly implicated in health complaints. Despite these data gaps and regulatory neglect, a state report warning of potential indoor air quality problems in portables and other classrooms has languished in bureaucratic limbo since last year and has not been made public, much less acted on.

In the fall of 1998, a state interagency task force completed a report that said portables “have endemic indoor environmental quality problems, and there has not been adequate monitoring of these problems or their impacts on educational programs.” Because the document was completed during the final months of Gov. Pete Wilson’s term, the state held the report while waiting for the new administration of Gov. Gray Davis to take over (Hardy 1999). The state was still sitting on the report when the issue erupted into newspaper headlines. In May 1999, a toxicologist and a pediatrician reported that they had treated at least six children from the Saugus school district in Los Angeles’ San Fernando Valley who suffered health problems after attending class in portables. The students’ blood and urine contained elevated levels of formaldehyde, benzene, arsenic

and other chemicals commonly used in portables construction. The toxicologist said the toxins “were oozing out of the walls and just recirculating and going into their bodies.” (Aidem 1999)

One-Third of California’s Kids in Portables

An EWG survey of California’s 20 largest districts found more than 19,127 portables in use — almost 6,500 just in the Los Angeles district, the nation’s second-largest with an enrollment of more than 680,000 students. (Table 2.) At an average of 25 students per classroom (EdSource 1999), that means about 162,000 children in the Los Angeles district, and 478,000 in the state’s largest districts, attend class in portables. Applying the average number of kids per classroom to the 86,500 portables in use yields an estimate that 2.16 million California children – more than 35 percent of total enrollment – are spending at least part of each school day in an indoor environment that may be harmful to their health.

In the uproar that followed the Saugus incident, parents, teachers and editorialists called on the state to act immediately to protect children’s health. They urged the passage of AB 1207, a bill by Assemblyman Kevin Shelley of San Francisco, which would assess indoor air standards for portables and provide schools the knowledge and incentives to improve indoor air quality. “Is it too much to ask that classrooms be safe and healthy environments for learning?” asked a spokesman for the California Teachers Association (Hardy 1999).

But the warning signs of problems with portables are nothing new. According to a state school facilities official, there are reports every year of “sick building syndrome” associated with portables (Lovekin 1997). A search of California newspaper databases turned up dozens of such incidents in the last decade, increasing noticeably after 1996. Nor is the problem unique to California. Although no national estimates are available for the number of portables in use, they are found in every state, and use is heaviest in booming Sunbelt states. Where portables proliferate, complaints about air quality follow.

Today, there is no system in place to have these old structures tested for their air quality.

Now to put more fear into your chest, dear reader, my disease is usually misdiagnosed as asthma. As you have probably read or heard in the news, there is a huge increase of the diagnosis of asthma in young children. Is there a correlation between the increase of asthma and the continuing aging of portable classrooms? How many of those children diagnosed with asthma actually have my disease? Remember, if one is removed from the problem, the lungs will repair themselves, if not exposed over a long period of time.

Did your child show symptoms of asthma but, after moving up to the next grade level and out of an old portable, seem to be miraculously recovered? You child may not have had asthma.