Living Well with a Bad Diagnosis - Lung Disease

Friday, September 30, 2011

Difficulty Setting New Goals


I had an amazing dad. If you, dear reader, have read the previous blogs about him, you know that. He was a huge believer that it was easy to drift through life and really just stagnate. He believed that we all need to dream. Dream about what you want then set a goal to get it. Begin with small steps and plan out where to go and what to do at each step. 


Set a goal, follow through and you can achieve anything. 


The goal I set to lose weight in order to begin the lung transplant process has certainly been reached. No one is more surprised that I am that it worked. And rather quickly, too. I met with the nutritionist in December of last year and the weight has been off since late July.

2011 has been the year of my diet. All about me. But, what I am currently struggling with is: What next? For years, weight has been an issue and now it isn’t. Done. I need a new focus. I need a new goal.

I’ve been thinking a lot about this the past few weeks and my friend Barbara is in about the same place. She wrote that she is feeling a need for a new outlet. Something creative. Her focus has changed as exciting and interesting things no longer give the same thrill or excitement. She says she needs something new.

Exactly. That is what I am feeling, too.

I have no answers yet. I am open for suggestions! I am ready to take the next step if only I knew what steps to take!

Thursday, September 29, 2011

Working Man Takes a Break

Michael has been working seven days a week. I told him to keep it up and he should burn himself out before the end of the year. He got the hint.

Yesterday, we had a plan: Meet at home after lunch and enjoy the afternoon together.

Early in the morning, I took off for rehab then shopped for food while he went in the other direction to finish up some work. When I got home, there was enough time to make my breakfast quiche (pancetta, scallions, tomatoes and arugula) and my lunch for the next few days (Laughing Cow cheese and spinach stuffed portabella mushrooms) along with some chicken breasts that needed roasting.

We met around 12:30. The weather was delightful – sunny and mid-80's along the ocean. We headed to the top of the pass and drove the ridge and were both stunned at the beautiful views. On one side, the entire Bay Area at our feet and the other side, the endless ocean and beautiful hills. Into the redwoods we drove. Deep redwoods. All the windows were down, the music was playing a CD of our son's group, and the smell of Fall was in the air. 

It felt like we were playing hooky. 

We stopped at an area high in the hills that has a restaurant on one side and a little market on the other where Michael ran in for a Klondike Bar. He does like his ice cream! We drove down the back side of the hills through the redwoods into the rolling hills then the pastures and farmlands. The temperature kept dropping from the high 90's into the low 80's the closer we got to the ocean. Finally, we drove the coast back to our house. 

In the evening, I had a really fun orchestra rehearsal. A full but lovely day. A reminder that life is good.

Wednesday, September 28, 2011

Preparing for a Conversation about Life

When I had coffee with my old friends from high school, Donna mentioned a friend of her’s who is in need a liver transplant. He sounded just scared, didn’t have the facts and was just miserable. In an e-mail this week, she asked me to speak with him.

She wants me to tell him about my illness and give him hope. Inspire him.

What an honor.

I told her I would love to meet with him in person but could also speak with him via phone.

He apparently was showing off to his grandson on a skateboard and broke his leg and ankle, and tore three out of four of the muscles involving his right rotator cuff. He is recovering at home but might need a bit of time before we speak. Donna also mentioned that she thinks he would more likely be responsive to a stranger than a friend. Enter me, the stranger!

As such a private person, I am very careful whom I let into my blogging world. Neither Donna or my other high school friend Nancy knows about it. Maybe this friend of Donna's might need this blog. We’ll see.

Tuesday, September 27, 2011

Pulmonary Function Test and CT Scan

The news was good. Really good.

Yesterday, I had my first full Pulmonary Function Tests in over a year and a high resolution CT Scan thrown in for fun. I am radiating! It was a beautifully sunny day with very light traffic when I drove into the city. I was, of course, early enough to have a cup of herbal tea before the CT Scan. 

They took me right in. Done within minutes. Easy.

So, off I went across the street to the main hospital. A while ago, I discovered Cert's sugar free 3-Hour Breath Mints and cannot find them anywhere else other than that hospital's gift shop. I bought six rolls! Up to the 13th floor for the PFT, I discovered that it was closed until 1:00. I chatted with another sweet lady who had COPD and was really at the beginning of the whole process. I listened a lot. Sometimes, people just need you to listen.

The PFT's began with the spirometry. A nice 8% increase. Thank you very much. Then the DLCO - diffusion. Ah, the DLCO - the most important number to those of us with an ILD. To review, when I first arrived at the clinic in October 2005, my DLCO was 7.7. They transplant at 7. With drugs, it rose to 12. Once it was 13 for a brief moment. Yesterday, it was 14.8. The highest ever. The other two tests also showed a remarkable increase.

I should also mention here about hemoglobin. Blood is taken during the tests, sent to a lab and the hemoglobin levels are figured into the adjusted number for the DLCO. As one gets closer and closer to the lung transplants, the hemoglobin numbers go higher and higher. It is the body's way of adjusting to the lack of efficient oxygenation of the blood. My hemoglobin number was 16 yesterday. That is high. Not REALLY high, but high.

I have known the crew in the PFT lab for many years. We have become friends. The head of the lab walked in while I was between tests and was shocked at my weight loss. She told me to stand up and take a turn around. How? Weight Management Group. She knew about it. 

In other news, the nurses who were on strike are returning to my rehab hospitals this morning. Welcome back! Today is my first rehab class in a week. Boy, am I going to feel it!

Monday, September 26, 2011

News About Congress from the Coalition for Pulmonary Fibrosis

I received the below e-mail from the wonderful people at the Coalition for Pulmonary Fibrosis. They have brought the disease to the forefront on a National level. They have also funded major specific research regarding pulmonary fibrosis.


Here is the e-mail:
“As you know, this week is National Pulmonary Fibrosis Awareness Week and the Coalition for Pulmonary Fibrosis (CPF) held 70 meetings on Capitol Hill in Washington on your behalf with your fellow patients and advocates earlier this week. 
We need your help NOW to get your members of Congress (U.S. House of Representatives and U.S. Senate) on board with the Pulmonary Fibrosis Research Enhancement Act (H.R. 2505 and S. 1350).  Members respond to local requests from their constituents before signing on to national legislation, like the PF bill.  So, let them know now that YOU support it!
Our champion in the U.S. House of Representatives, Rep. Erik Paulsen, spoke on the House floor this week and asked his fellow members of Congress to sign onto the Pulmonary Fibrosis Research Enhancement Act.  YOU can make sure your member does it just by emailing or calling their district or DC office to let them know the bill is important to you and your family!  Here is a link to the short video of Rep. Paulsen speaking about the bill: http://www.youtube.com/watch?v=tXxICKCjxn0&feature=channel_video_title
Also, Rep. Paulsen and our champion in the Senate, Sen. Chris Coons, sent out "dear colleague" letters this week asking their fellow members of Congress to support the bill now.  Your call or email as a constituent will help drive that message home - please call or email them now!  Simply click here to send a note now!
Here's What you can do NOW:
1.  Call or email your Member of Congress and the Senate now (there is an easy-to-use link to this email) and ask them to support the Pulmonary Fibrosis Research Enhancement Act NOW!  Just click here to send a note:
2.  See the video link from Rep. Paulsen's short speech and then post it to your "status" on Facebook, LinkedIn, Twitter or any other social networking site you use.  Just copy and paste this into your status: http://www.youtube.com/watch?v=tXxICKCjxn0&feature=channel_video_title
Below is a press release we sent out this week about efforts on Capitol Hill this week.  Please share it, too!
Sincerely,
Mishka Michon, CPF CEO
LATE PATIENT’S HUSBAND, FELLOW ADVOCATES ASK CONGRESS FOR HELP FOR LETHAL LUNG DISEASE
Ninth Annual National Pulmonary Fibrosis Awareness Week Sept. 18-24
 
Culver City, Calif./ September 19, 2011– Doris Lowenthal planned to be on Capitol Hill this week. As a member of the Coalition for Pulmonary Fibrosis’ (CPF) Pulmonary Fibrosis (PF) Awareness Week volunteer team, she was scheduled for more than 60 meetings with members of Congress and staff members.  She prepared just what she wanted to say to them to gain their compassion and their co-sponsorship of a bill that had the potential to save her life and those of thousands of others.  Doris died just weeks ago before she could deliver the message herself.  Instead, her husband, Barry, and her fellow Pulmonary Fibrosis (PF) advocates will share her story along with their own as they canvas Capitol Hill this week during the ninth annual National Pulmonary Fibrosis Awareness Week through the 24th. 
Doris was a two-time breast cancer survivor, but nothing could stop the lethal disease that ravaged and destroyed her once healthy lungs.  She received a single lung transplant several years ago in hopes that she’d live a somewhat normal life and could remain active in the fight to find treatments and a cure for the disease that claims as many lives each year, ironically, as breast cancer (40,000) and affects a known 128,000 Americans.  Weeks ago, Doris, a Mary Kay independent consultant, was flying from her home in Maryland to Dallas, Texas when she became so ill that the pilots were forced to make an emergency landing in Memphis, Tennessee. 
The ensuing weeks were difficult on Doris, but she remained upbeat and positive, and assured her friends and family that she’d be out of the ICU and on Capitol Hill again in this year.  She lost her fight on August 14 to the disease that has no FDA approved treatment and no cure. 
“I am here this week for Doris,” said Barry Lowenthal.  “She was so passionate about finding a treatment and a cure for PF so that others wouldn’t have to go through what she did.  I will do everything I can to continue this fight for her and each step I take, she’ll be with me.”
The primary goals of this year’s activity are to ensure passage of the Pulmonary Fibrosis Research Enhancement Act (PFREA, H.R. 2505, S. 1350) in the Senate and the House, and to raise awareness of Pulmonary Fibrosis issues in communities nationwide.
This year marks the CPF’s ninth visit to Capitol Hill, and a new alliance with Congressmen Erik Paulsen (R-MN) and Congresswoman Tammy Baldwin (D-WI) as well as Senator Chris Coons (D-DE) and Senator Mark Kirk (R-IL) to reintroduce the PFREA  in the 112th Congress.   This historic, bi-partisan legislation would authorize $16 million in new federal funding to create the first national patient registry for PF, and provide much needed support for research into the deadly lung disease.  The Pulmonary Fibrosis Foundation (PFF), in demonstration of its support for the PFREA, will be joining the CPF for the Hill meetings.
“We are inspired by the strength and courage of our patients and family members,” said Mishka Michon, chief executive officer of the CPF.   “Having the voice of the patient community heard loud and clear will make things happen to bring attention and awareness to PF in Washington and beyond.”
“The PFF joins in thanking the volunteers who travel to Capitol Hill each year to request the support of our legislators as we seek to find answers to PF.  It is our hope that this effort will help us move closer to answers to this disease,” said Patti Tuomey, chief operating officer for the PFF.
The progression from a bill of recognition of the disease, H. Con Res 182, which was passed in 2007 to a bill establishing funding for PF research, is indicative of increased responsiveness on the part of Congress. Over the past nine years, the CPF and its advocates have met with hundreds of Members of Congress.
PF patients, families and those affected by PF can help with 2011 awareness efforts and help gain passage of the PFREA by joining the CPF’s advocacy campaign, Campaign ACT. For further information, visit the CPF at www.coalitionforpf.org, call 888-222-8541, or email info@coalitionforpf.org.”

Sunday, September 25, 2011

Renewing Old Ties Over Coffee


On Saturday morning, I was staring at faces I had not seen in 40 years. My friends from high school, Nancy and Donna met me for coffee. My goodness, are we that old?

Two and a half hours later, we vowed to meet every six to eight weeks and to invite others from our class to join us.

It was interesting to me that Nancy really had kept in touch with so many of our classmates. I knew no one. When I was a freshman and sophomore, I dated a guy who was three years older than I was. When I turned sixteen-years old, I wanted my life and my freedom back. I was growing up and he was resistant to that fact. So, I had no, zero, none interest in any of the boys in our class or at school. I really didn't know the name of most of them. Ignored them all together. What I didn't want was another relationship or boyfriend. Had enough of that.

Over our coffee, Donna and Nancy talked all about the boys they had crushes on or dated. I realized then why I didn't date any of the high school boys. Never really thought about it before.

Both the women never had children, Nancy was married twice and Donna was never married. Both live in their parent’s homes. Donna is the caretaker of her two disabled siblings and Nancy is the caretaker of her elderly mother.

I am so grateful that Michael and I met when we were just teenagers. I am so grateful that we worked hard and built our lives together without any help from anyone. I am deeply grateful that we were able to have, raise and enjoy our son.

It is so interesting to see how life has taken all three of us down very different paths.

Saturday, September 24, 2011

A Big Ouch

I had a wonderful five hours in the gardens yesterday, except for one small thing. Within 10 minutes of bending over and pulling the small roots of plants out of the hard earth, I pulled a bit too hard and heard a "pop." Man, oh man, it hurt near a rib on my left side just under my breast. I thought at first that I cracked a rib then I realized that it was probably a pulled muscle.

Did I stop right there? Oh, no.

I continued working except I found I couldn't use a shovel or even my left side. The garden recycling container is filled to the brim but I am only about a third of the way finished cleaning up the very front area. This is going to take me about another two weeks to get it all finished.

So, I turned all the dirt in the front flower beds along the house, cut the grass, watered then headed into the back yard. With just simple cutting, trimming and watering, I was finished and sitting in the sunshine when Michael suddenly appeared at 1:30.

Shocked! I knew he had a full schedule but there he was like a vision.

I had phoned him around 12:30 because I was worried that if something happened to me due to the rib that he wouldn't know what had happened. He said that if I called, he knew that it was bad. So there he was. He always puts my health first. My hero. Then, I felt badly that I messed up his day and really shouldn't have phoned.

So, there we sat. Both of us enjoying the sunshine on a warm Fall afternoon in the finished gardens with the fountain gurgling softly in the background. Heaven.

After midnight, I woke up very sore and couldn't find a comfortable spot. My side hurt. My body hurt every time I moved. It has been a long night. I am very, very sore this morning.

But, am I stopping? Nope. This morning, I am meeting two women from high school whom I haven't seen in 40 years for a cup of coffee and a chat. How could I miss that?

Friday, September 23, 2011

Garden Workout

Let no one think that real gardening is a bucolic and meditative occupation.  It is an insatiable passion, like everything else to which a man gives his heart.
~Karel ńĆapek, The Gardener's Year, translated by M. and R. Weatherall, 1931

My body is restless, tired and just not happy. It needs exercise. The strike is over but the nurses are locked out until Tuesday. No rehab for a total of five days.

Today’s Plan:  Yard work. Heavy, dirty, sweaty yard work.

Besides the normal weekend work, I am going to hit the very front area. The plants have grown too big so they need to be removed and other plants will be installed in the Spring. After digging them out, I have to cut them up with hand shears then toss it into the  garden bin.

This will be an all day event.

By tomorrow, I want my body to feel like it went through a workout and even be a bit sore. Plus, the yard will look better. Two wins. 

Thursday, September 22, 2011

Living with an ILD


“Success is to be measured not so much by the position that one has reached in life as by the obstacles which he has overcome.”
Booker T. Washington
(1856-1915)

Okay, I got the above quote from my afternoon Good Earth tea bag but it still says it all. If you are reading my blog, you either have or are very close to someone who has a lung disease. It is a struggle. I know. I understand.

But, this is what I know to be true: MOVE. Get up and physically challenge yourself everyday.

Pushing yourself today just might make tomorrow a little easier. It worked for me. Please, push yourself. If it scares you to be short of breath, talk with your doctor about kicking up your supplemental oxygen needs while exerting yourself.

Walk just a little farther, eat just a little bit better, get out of your routine and your safe place. Take a chance for your own health. Take charge of your health.

Living with a lung disease is an obstacle. Living well with a lung disease is to embrace it, wrap it into your life but not allow it to run your life. Overcome the obstacles.

All this from a tea bag!!!

Wednesday, September 21, 2011

No Rehab

Just when I am back into the rehab groove, the nurses are going on strike tomorrow. After that, the hospitals here are locking them out through Monday. I just can't cross a picket line of the nurses with whom I have become friends. Just can't.

Today will be the last day working out until Tuesday. My plan? I want to do extra yard work, except for Thursday when Winnie and family are coming for lunch and except for Friday when I meet my friends from high school for the first time. But, I should be able to do some work Friday afternoon after our morning coffee. So that leaves Saturday and Sunday and Monday. The upside? The gardens will look fantastic!

Diet info: I bought a new cookbook written by Dana Carpender which includes many appropriate low-fat, low carb recipes.  I made her Greek Meatza - a meat pizza made with lamb - which was so rich we froze half of it. Last night's dinner was white fish covered on both sides by aioli and parmesan cheese then baked. We had a side salad of avocado, celery, scallions, a little blue cheese, hard-boiled eggs tossed with a raspberry vinaigrette. Wonderful.

Tuesday, September 20, 2011

Road Trip to the Valley

I drove back into the Central Valley of California yesterday. I went to check-in with my mom. She is doing great with not a walker in sight. She really doesn’t need me but it makes me feel better to see how she is doing.

She is a professional shopper. She stalks merchandise and watches the prices fall until they are ridiculously cheap. She has not been shopping since her broken pelvis so off we went to the mall. Her friend Ellie joined us and we found mom's outfit for my niece's wedding. On the way back through Macy's, I found my dress for the wedding! What a shock. It is a Calvin Klein. Black. Perfect to wear with the over 100-year old turquoise belt. It was also just $89.00. Crazy.

All three of us went to Mimi's Restaurant for lunch. Ellie is a friend who is in her 70’s, a former neighbor who loves to gamble as much as my mom. They made plans for their first casino trip since mom's broken pelvis. There was never a pause in the conversation during our almost 2-hour lunch. I headed home afterwards.

The cold, wet summer weather has blossomed into the most summer-like Fall. It is beautiful here. The smell of Fall is in the air, the trees have begun to lose their leaves yet it will be in the mid-70's today. We are enjoying every moment.

Monday, September 19, 2011

Dear Mr. Buffett

I try to stay away from politics. I really do. I hate politics and all politicians.

But, with Mr. Warren Buffett in the news, I just have to comment. He suggested and is getting his wish that millionaires be taxed at a much higher rate.

Here is my shout out to him:

Instead of giving your money away to the government, why don't you pay on your policies for the disabled? Why did your disability policy in my employment package say you will pay a large percentage of my income until I am 65-years old if I become disabled? When the horrible happened and I tried to collect on the policy, my lawyer was shock to discover that every illness had a huge number of "buts..." If your disease was caused but x, y, or z the claim would be paid for only 24 months.

Every disease had a huge number of disqualifications listed. Every disease.

So, Mr. Buffett, what percentage of disability claim are paid for longer than 24 months? My guess? Little to none.

After we lost my income after 24 months (and he really only paid 12 months since State Disability Insurance paid the first year), I would picture what hell would be for Mr. Buffett. It would be having to write checks to disabled people.

May he rot.

Sunday, September 18, 2011

Sunday, Sunday

It is a beautiful Sunday morning. The sun is shining, which has been a very rare event this summer. Considering Fall is beginning next week, it is time we had a bit of summer.

The plan? Sitting in our garden together. Maybe a nap. Maybe a drive.

That's the thing about Sundays. So many options. Or not.

Enjoy your Sunday. And all your options.

Saturday, September 17, 2011

Big Oops



HA! I guess it happens when you open up life to a day of "no routines." I had a wonderful time with Dolores yesterday and we talked about such personal feelings and thoughts that I usually don't share with people other than Michael and you, dear reader.

But, after I bought all the food for the dinner tonight, I got an e-mail from Lori that Dave is just not up to having dinner with anyone. Cancel. Stop the presses. Delete.

Oops. What am I going to do with a 5-pound pork rib roast?

After leaving a message for Michael, I headed into the garden to work in the front yard. The back will be attacked this morning. He phoned and agreed to ask his friend Ricky and his wife Fran to dinner. Both have been here before and are very nice people. She is an amazing, mostly Italian cook. High level. The heat is on for tonight!

Funny how it all worked out. It will be fine. It will be fun.

Friday, September 16, 2011

Routines and No Routines

It is clear: I need routines. I do better with routines. Diets, exercise, friends. But, sometimes it gets a bit dull and then I fall out of my routines.

I am currently jumping from routines to out of my box moments. It has been interesting.
  • Doctor appointments and meetings - done for a few weeks.
  • Orchestra rehearsals have begun again for the January concert. A good routine!
  • I returned to the rehab class yesterday after being absent for almost two weeks (William was here). Sherman looked great and even Barbara had returned once again. 
  • Friends. I am "taking today off" to have breakfast this morning with my friend Dolores. It has been too long since we have seen each other. I love our time together. 
  • My friend Lois is struggling with her brother's death yesterday and the fast spiralling downward health of both her mother-in-law and brother-in-law. We are planning to see each other when she returns from the funeral and the final visit to the in-laws. All are in the Mid-West.
  • Other friends, Dave and Lori, are coming tomorrow evening for a nice, relaxed, casual dinner. Dave had surgery for carpal tunnel and it did not go as well as expected. He needs a change of scenery. I don't think they have ever been here for dinner. It was a spur of the moment decision and very out of the box. We usually plan everything well in advance.
  • We have reconnected with an old friend who is back living a good life. I am also meeting two friends from high school for coffee in a week. It's been 40 years since we have seen each other.
So, after seeing Dolores today, I am buying a 5-pound pork rib roast and some groceries for tomorrow night. The menu? Antipasti appetizers, Roasted Pork Roast with Potatoes and Applesauce and vanilla ice cream with homemade Caramel Corn. An odd menu but good and simple.

Also, this afternoon I am beginning the weekend yard work. I want to save enough energy tomorrow to enjoy being with Dave and Lori in the evening.

Monday, I will drive the 200 mile round-trip trek to see my mom. She is doing really well and the broken pelvis is beginning to heal. 

Routines are good. Opening my life up to things out of the routine is also good. Where the struggle lies is with the balance. That is the constant struggle.

Thursday, September 15, 2011

Hypersensitivity Pneumonitis - September ILD Meeting


This month’s meeting featured Dr. Paul Blanc, Chief of Occupational and Environmental Medicine. He is conducting a first of its kind study on Hypersensitivity Pneumonitis. It includes a questionnaire, a lung function test, a home inspection for dust samples and blood tests.  There has never been a systematic evaluation of people’s homes or even a questionnaire involved in any other study. When putting together the questionnaire, he contacted the National Jewish Hospital, who is an expert of HP, to ask for their questionnaire to use as a guide. He discovered that even they have not done a complete study of patients who have this disease.

He has completed that part of the study and has sent the dust and blood samples off to a lab in Sweden. Apparently, there are no labs in the US who test for a variety of antigens against a blood sample.

He did say that HP’s hallmark is that for some reason a sensitization to something happens then once sensitized, it continues.

Dr. Blanc went through part of the questionnaire with us, which studies different possible exposures in the workplace and at home. In the workplace, here are some known exposures, which have caused HP:
Epoxy, two-part glues or cements, super glue, acrylate or hot melt glue
Urethane, polyurethane or iso-cyante
Pharmaceutical products
Pyrethrun or other pesticides
Hay, silage, straw or agricultural waste
Saw dust, tree bark or other wood dust
Other plants or natural fiber dusts
Compost, waste processing or sewage
Animal hairs, dander, fur or animal waste
Bird feathers, down or other bird-related materials
Sea shells or mother-of-pearl
Water humidification systems
Indoor fountains, water features or other water sprays
A swamp or desert cooler for air conditioning
Moldy conditions or water-damaged workplace
Metal cooling or cutting fluids
Metal dust or fumes, including from welding
Sand, silica, quartz, diatomaceous earth or stone or concrete dust

In the home, the questionnaire focused on water features, water collection systems, feather bedding or goose pillow, comforters or duvets, a “Sleep Number” or “Select Comfort” bed and tatami mats. They also included questions about water damage, mold or mildew, carpets laid over cement and indoor pesticide applications. He also said that if any mold is on drywall, the drywall must be removed. It cannot be cleaned.

Also in the home section, there were questions about pets but the focus was on large birds. There were questions regarding outside birds roosting on the roof or bird droppings on the exterior of the home or even if there were regular fly-overs or migrations by flocks of birds. Hot tubs also seem to be an issue and several question dealt with them.

The first time HP was mentioned in Medical Journals was 1932 and the two cases cited that year were Maple Bark Strippers Lung and Farmer’s Lung.

What is HP? It is a lung disease “allergic” process that brings on an immune related response or “sensitization.” Continued exposure to this antigen makes the disease worse. HP is NOT due to the same types of allergies like hay fever or cats, for example. How to know the difference? An allergy to cats would exhibit immediate symptoms. A reaction to an allergen, which develops into HP, has no immediate reaction.

This is also the one and only lung disease that will not be contracted if one is a smoker. Something in the cigarettes nullifies the antigen.

Causes of HP? Inhalation, a biopsy has distinctive chest CT and Blood Antibodies test. It is caused by fungi/bacteria, animal derived substances, exposure to synthetic organic dusts, chemicals used in industrial settings and exposure to selected pharmaceuticals.

But, there are caveats to the above, instead of inhalation it can be caused by medications,  a biopsy can be non-specific, the CT in advanced disease can look like ILD, the blood tests only work if the doctor knows what to check for which is rare.

It was interesting to learn where a group of people got HP:
Agriculture – Livestock – 24
Agriculture – crops – 18
At home – 10
Construction – 3.3
Trucking – 3.3
Hospital – 3.3
Yarn and Fabric factories – 2.5
Elementary and secondary school – 1.6
There were other listed but the numbers were very small and I did not copy them from the presentation.

Common causes of HP are:
Farmer’s Lung from moldy hay, Bird Handler’s Lung from bird droppings and feathers, Lab Worker’s Lung from rat urine, Ventilator Lung from humidifiers and dehumidifiers, Cork Workers Lung from mold, Mushroom Worker’s Lung mostly in Japan, also hot tubs.

Dr. Blanc then showed a chart culled from information on death certificates. Of the 64 death certificates, the following died of:
Avian Antigens – 29
Hot Tub Disease – 18
Farmer’s Lung – 9
Household exposure – 8
Heavy indoor mold – 4
Could not get a positive in history or serologic testing – 21

How common is HP? It is rare. Very rare. Dr. Blanc showed us a graph of deaths relating to HP. I copied just a few of the numbers:
1991- 36
1996 – 51
1997 – 38
1998 – 57
Again, that is for the entire US.

It was even more interesting to discover the states with the highest number of HP deaths: They were mostly agricultural states with a high number of dairy farms. It included Idaho, Colorado, North and South Dakota, Iowa and Wisconsin.

Can HP be cured?
  1. Consider HP in a diagnosis and try to identify the exposure then remove person from the exposure.
  2. Immune modulation – steroids
  3. Lung transplantation. There has be only one case at this university hospital where someone re-contracted HP post transplant. 

Wednesday, September 14, 2011

Stairwell Conversation and Dr. K.

A reminder before we begin: The flu season seems to be early this year. So many friends have already fallen to it. For people struggling with lung diseases, it is imperative that we are protected from the flu. It could be deadly for us. We both got our shots on Sunday at the local Walgreen's. Please, please get your shot ASAP.

Now, about the ILD meeting yesterday:  It was fantastic. I was exhausted when I got home and didn’t write up the meeting notes. I will blog them as soon as possible. Hang in there with me.

While I was at the hospital complex yesterday, I was a bit early for the meeting. After having an iced tea in the cafeteria, I was walking down a flight of stairs in the stairwell to the main floor when I bumped into the co-head of the Interstitial Lung Disease Clinic, Dr. L. K. She was shocked to see me. At last year’s holiday luncheon for all the ILD doctors, staff and patients, I told her that I wanted to lose weight. So, she said, “Well, you told me you were going to do it!”

She asked very specific questions and said that she will share the information about the diet with other patients they treat in the ILD Clinic. So, I have the Liver Clinic, The Lung Transplant Clinic and now the ILD Clinic all referring patients to Mr. B and Dr. M-J at the Weight Management Clinic. I should get a percentage!

I am excited and nervous to see Dr. K tomorrow. She is going to be surprised to see the additional weight loss and the remarkable change regarding my supplemental oxygen in rehab. But, I am beginning to sneeze a lot and went into my healing mode last night: Antihistamine, Vick's Vapor Rub on my feet and socks. Add to that my face cream and the oxygen cannula, I am both lovely and smelly! Ha!

Tuesday, September 13, 2011

To the City - Day 2

Dr. Paul Blanc
Back to the city this morning. But after weighing in yesterday, I am heading to the other rehab before going to the Interstitial Lung Disease Support Group. I did gain two pounds and was devastated. Dr. M-J said that I am still at my goal weight and not to panic. Get back to rehab. Get back into my routines.

She also said that research has shown that when a person panics with a small gain, they cut back on their healthy eating habits and increase their exercise then binge on food because they are extra hungry. They never remain stable. That made good sense to me. I also have to remember that I had a fasting blood test before the appointment then ate a small breakfast just before being weighed. So, I am not panicking. I am going to work out today and bring my lunch with me to eat before the meeting. I am also going to weigh myself on Thursday before the rehab class. We’ll see how I do.

So, today we are meeting Dr. Paul Blanc, Chief of Occupational and Environmental Medicine who will talk with us about Hypersensitivity Pneumonitis, my ILD.

Then, it is back to the city – Day 3 tomorrow. I am meeting with the fabulous Dr. K. who is going to love my additional 20-pound weight loss and the news about needing less oxygen in rehab. 

Monday, September 12, 2011

Sleepy but Busy

Such a nice weekend but a busy week is ahead. I am seeing Dr. M-J, the Weight Management doctor, this morning for possibly the last time.  I am heading to the city at 9:00 for an 11:00 appointment because I need to get a fasting blood draw for the liver people. No coffee or food for me this morning!

I am a bit nervous to weigh in as I ate more than normal when William was here. Cake was involved. I have not been to rehab to weigh myself but during the last several days but I have been feeling that I am fine. Everything fits. I have been very careful about my food since he left. We'll see. 11:00. Think of me!

Tired. Didn't sleep well. Normal Sunday night. I guess my body is so used to activity six days a week that it does not like my "day off" on Sundays. I never sleep well. Last night, I fell asleep around 8:30 but was wide awake from midnight to 4:30AM. King of the Hill, Family Guy, Dateline on ID and Imus kept me occupied.

Also, I was thinking a lot about my goals for next year and two people who have suddenly appeared back into our lives.

Mark was one of the kids who hung out at our house in the very early days. 1975. I think he practically lived with us. It took a few years to figure out why. He had a very difficult home life and we were his safe place. After we had William and moved, Mark disappeared. He has re-surfaced. He has had a difficult life but seems to be back in the land of the living. We are beginning to chat. I would love to see him in person.

Nancy was always seated in front of me in high school. Our last names were close so I saw her back through four years of PE and classes that we had together. I discovered the Class Reunion website, we connected, been chatting on line and now plan to meet for coffee late next week.

Tomorrow, I have an ILD meeting at my hospital. The speaker will be the guru of my disease - Hypersensitivity Pneumonitis. I will take notes and report back to one and all.

Until then, I think I will need a nap later this afternoon!

Sunday, September 11, 2011

Ten Years

Ten years ago. Seems like forever. Seems like moments.

Michael was up beginning to make coffee. I was still in bed but due to leave for work early. I had hired a new music teacher who had broken her arm in a car accident and couldn't drive. I offered to drive her to and from work until it was healed.

He came running in, "Turn on the TV. A plane crashed into a building." I watched in horror, got up and was watching the TV in the family room. Suddenly, I saw the second plane crash into the other tower. I remember feeling the energy drain from my body. I realized then that this was no accident.

I got dressed and left the house listening to the radio all the way to the music teacher's house. She hopped into the car. She had no idea what had happened.

People were in shock at the school. The schedule was changed. It was a long day.

I remember just wanting information.

I remember feeling numb.

Later, I learned that the music teacher was dating and later married a guy from Tunisia. He had danced with joy while watching the repeated showings of the buildings falling. The marriage didn't last long.

Ten years ago today. Our world forever changed.

Saturday, September 10, 2011

Finances

While William was here, we were able to go over all of our finances. I wanted him to know where everything is organized and what will need to be done shortly after my death. He really handled it all very well. It was a hard conversation.

Two accounts are his alone. They are the Workmen’s Comp settlement and the Medicare Set-Aside. A lot of money. I told him where they both live and how to access them. There could be complications with the Medicare Set-Aside so I told him not to spend it for two years. He might receive bills from my final days that need to be paid from that account. I also suggested that he has the money wired from both accounts into his account the moment the death certificates are issued. His eyes grew wide.

I also showed him where the life insurance policy is along with my retirement account. Both need to be handled within a specific time period after my death. I tried to emphasize that all of our accounts must be dealt with in a timely manner and that Michael is going to need his help.

Something very personal that I have never written about is that my siblings and I are to receive a lot of family money after the death of one person.

This week was really the first time I have gone into detail regarding this money with my son. He was stunned. The only problem is that if I die before this person, William will receive nothing and the money will be divided between my sister and brother.

I am determined to live long enough so my son and his children have this money.

He and I were also able to talk about the plans I have for this money. There will be many LLCs and some of it will fund commercial real estate. Apartment buildings. Other money will fund whatever he wants: restaurant, recording studio, whatever. Most of it will be invested. We talked about how he is never to give anyone the power to sign checks. We talked about reviewing all the accounts and having everything looked at by outside auditors. Having this generational money will be a responsibility. A huge one.

I know that he will be thinking about our conversation for a while but will continue on his own path. 

Friday, September 9, 2011

New Job and High School Reunion

Natalie has been hired to teach two levels for a private children’s choirs and to grow the entire program. Perfect. She will be great. The per hour rate is good but she is still struggling with childcare issues. How do people afford childcare? She finally hired a 22-year old for three late afternoons a week. Hopefully, Natalie will net some income.

Last week, we met at Nordstroms to buy some professional clothing for her new job. I only had an hour before I had to be in the rehab class so it was a quick run. Besides Nordstroms, we also ran through Ann Taylor and Macy's where I picked a ton of clothes, ran them into the dressing room where she tried them on. She loved all the things I chose and was able to buy many working basics. 

Today, she and the kids are coming for lunch. I want to hear how it is all going. It is so great to talk music again. Before they arrive, I am going to make homemade caramel corn. It has been so many years since I made it last time that I think William was very little. Winnie is going to love it!

But, the big news is about tonight. My 40th High School Reunion begins tonight with a cocktail party at a hotel over the hill. It has been so much fun reading about everyone on our class website and so many memories have come flooding back. I never was one who looked back and never thought I would care about a reunion. Somehow, I am excited to see these people who shared those very important years. Michael is even looking forward to meeting everyone.

Thursday, September 8, 2011

Idopathic Pulmonary Fibrosis Webinar and an Empty House


The house is empty again. After I left for orchestra rehearsal last night, William and Kimberly began their long ride back to Seattle. The house felt cold and empty when I woke up this morning.

I am exhausted not just from their visit but from the continuous stream of energy zapping things without much downtime. A real killer for me. Today, I am going to rehab, swing by the store for the makings of caramel corn (Winnie is coming for lunch on Friday) then the plan is to sit in the back yard. Quietly. Maybe a nap.

Tomorrow, we are going to the cocktail party for the beginning of my 40th high school reunion. Saturday will find me working in the gardens then nothing, sweet nothing, on Sunday.

I received the below in an e-mail from the good people at CPF. This might be very helpful especially for readers of this blog who are in countries around the world where the latest information regarding Pulmonary Fibrosis is so limited. Follow the directions and you can join this Webinar.


"The Coalition for Pulmonary Fibrosis (CPF) is pleased to invite you to a free webinar on September 14th entitled "New Directions for IPF Treatments: Understanding the Basis for Current Clinical Trials".  Reserve your Webinar seat now at:
https://www1.gotomeeting.com/register/992892200 (note: do not reply to this email to register - click on the link provided).
It is part of PF Week at the ATS (Sept. 11-18) - and also in tandem with National PF Awareness Week (Sept. 18-23).  This patient-education web event is presented by the American Thoracic Society (ATS) in partnership with the CPF and is hosted by Andrew Tager, MD.  You'll want to invite your family, friends and caregiver(s) to join this free event, too!
What?  Join us for a Webinar on September 14 -
 New Directions for IPF Treatments: Understanding the Basis for Current Clinical Trials

When?
Date:
 Wednesday, September 14, 2011
 Time:
 2:00 PM - 3:00 PM EDT

Space is limited.
Reserve your Webinar seat now at:
https://www1.gotomeeting.com/register/992892200


After registering you will receive a confirmation email containing information about joining the Webinar.
System Requirements
PC-based attendees
Required: Windows® 7, Vista, XP or 2003 Server
Macintosh®-based attendees
Required: Mac OS® X 10.5 or newer"

Wednesday, September 7, 2011

Family, Friends and Another Birthday Party

I was alone most of the day yesterday. William and Kimberly took off for some business, friends and shopping in the city. I took off for rehab and food shopping. Michael kept calling into jury duty for further instructions. They instructed him to go to the courtroom, they changed the location, they changed the time. He sat. Waited. Was called chosen by lottery to go into the courtroom with the judge then instructed to fill out a form if he wanted to be excused. Yes, please.

Disabled wife, sole support. He was excused.

While that drama was playing out, I was enjoying the sunshine.

I also phoned mom. She now has a rather large hernia and is meeting with a surgeon next week. She is feeling very discouraged. She has been facing a lot of health issues since 2009 and is tired of being in pain. She really doesn't want surgery.

In the evening, we headed into the city to meet Don, William and Kimberly for another birthday dinner for Michael at our favorite restaurant. The owner and girlfriend joined us. William enjoyed the Tartar and Lamb Daube. Kimberly and Michael had the Duck Confit. Decedent! I had the Bouillabaisse. Perfect. Lots of fun conversation and laughter. We closed the place near midnight.

Today: William and Kimberly are spending the day with us. After dinner, they are leaving to begin the journey home. After they leave, I have the first orchestra rehearsal for this season. It is a Russian music program. I am very happy. I am not so happy to have two new bass players joining me. Two. Oh, and they have never played bass before but "they know how to read music." Oh my.

Tuesday, September 6, 2011

Quiet Sunny Day

It was a very quiet day yesterday. We all slept in and decided to eat lightly as we are going to the French restaurant tonight. I made a crustless quiche of pancetta, onions and spinach for breakfast. We drove to the tide pools and watch many seals sunning themselves just down the beach. Yes, sunning. The sun was shining all day. What a treat.

When we got home, we sat out on the back swing and warmed our bodies and chatted. Soon cocktails happened along with leftover appetizers. Dinner was simple. I had frozen two helpings of the lamb and eggplant dish, which Kimberly and William enjoyed. Also made Trader Joe’s potstickers then tossed a lot of cabbage with TJ’s Goddess dressing. Simple. Delicious. Oh, I forgot the cake. The two cakes are finally gone.

During the evening, I was able to walk William through our financial files and explained how the Medicare Set-Aside works. That money along with the Workmen’s Comp money is going to him at my death. I wanted him to see how the files are set up and that Michael is really going to need his help with all the paperwork.

We were in bed snoring by 8:30. Today, Michael is off to work and possible jury duty (he has to phone in at 11:30) and Kimberly and William are heading into the city early to be with a friend most of the day.

Me? I think a nap is in order. If they take off this morning, I will head over to the other rehab. A workout sounds good.

Monday, September 5, 2011

Family Time


We are having a fun and a busy time with Kimberly and William. We went to a shopping area to find some sun yesterday, had lunch at a bakery we have eaten in for years, walked the entire Avenue, bought handmade chocolates and they bought some alcohol to take home as it is so much less expensive here. It still is hard for me to let our son buy us lunch. Seems so wrong, somehow. But, still very sweet and we were very touched that he insisted.

We went to our little organic market on the way home to buy some zucchini, arugula and a variety of Chinese mushrooms along with a baguette and goat cheese. We all made dinner together: appetizer of toasted crostini topped with goat cheese and leftover prosciutto and fig jam, grilled some steaks we had in the freezer that a butcher friend gave to Michael which we topped with fresh arugula, cut and grilled the zucchini seasoned with salt and pepper and red pepper flakes and finally the sliced Chinese mushrooms grilled then served with hot sesame oil. Oh, and leftover birthday cake!

We are addicted to Breaking Bad and they are addicted to the whole Kardashian clan so we watched both. Michael had never seen the Kardashians and was rather appalled by their behavior. He kept saying that he hoped it would all be a blur in the morning and that it wouldn't invade his brain. Ha! We fell into bed and slept like babies again.

Full day ahead. We are heading to the tide pools just a few minutes north of here. Our food will be limited today as we are all feeling too full. Eggs tonight! Tomorrow night, we have reservations at our favorite French restaurant in the city and our friend Don will be joining us. William loves their Daube. Lamb Daube. I may have to stick with the fish as I am really watching my calorie intake.

It feels so good to have people in the house. It feels full and happy. I find myself smiling a lot.

Sunday, September 4, 2011

Birthday Morning After

Just a quick blog today. We are sitting together on the couch sipping a cup of coffee with the feeling of having had a great time last night. Relaxed and happy.

The neighbors arrived for Michael's birthday party at 5:00 last evening, our friend Don also came from the city then Kimberly and William arrive from their long drive from Seattle. I had made a table full of finger food from very old recipes from the 70’s and 80’s. Michael’s request. It was so much fun to revisit those tastes.

We served: Chicken Sate, Char Sui BBQ Chinese Pork, Marinated Prawns, Ole’s Bolognas, Guacamole and Salsa and Chips, Olives, Brie and Smoked Gouda cheeses with pears and grapes, and Pate with Pickles. The two cakes were also a hit. We sent half of the leftover chocolate cake home with Rick and Natalie. The carrot cake is in the refrigerator ready for breakfast, if anyone wants it!

The house was picked up, the dishes rinsed in the dishwasher when William and Kimberly joined us in the living room for a nice chat until midnight.

Clearly, it was a Happy Birthday for Michael.

Today? Why, heading to Dynamo Donuts, of course. Also hoping for sunshine. Please.

Saturday, September 3, 2011

Another Visit with the Nutritionist

Last Tuesday, I weighed myself at rehab. I lost another two pounds. It was a celebratory moment as it fell into a lower group of ten numbers. I so want to lose another four pounds and never go into the higher group of ten numbers again. Ever.

But, Mr. B. the nutritionist is not going to be happy. They wanted me to stop losing weight six pounds ago. 

Armed with this knowledge, I met with him on Friday.

We checked my weight, I lost another pound lost since Tuesday.

It turned into an interesting visit. Mr. B. told me that I really don’t need him anymore and that I have everything I need to maintain my weight. There is an actual formula: I can eat the formally banned foods with protein twice a week and stay at 1,400 calories a day. Also, I need to check my weight about the same day and time every week.

I told him that this part of the process has been the most important for me and he is my touchstone. There is a growing confidence that I will not put the weight back on. My metabolism is working beautifully. I should be careful about food but not stress over it.

So, I am seeing him next month and again in November. That will be our final appointment together.

The entire process will end after eleven months. The losing of the actual 60 pounds took seven months.

After the appointment, Michael and I spent the day together. We ran around like crazy trying to get all of our errands finished. We finally got home at 3:30 then I began my work.

Today is Michael’s birthday. We are having the neighbors join us for a small party and William and Kimberly are due sometime today. So, after a long day, I spent five hours preparing some of the food and baked two cakes. Michael helped with the cakes and they were both frosted and finished by 8:30. And so was I. Finished. I fell into bed and really didn’t stir until 7:00 this morning.

Hope the sun comes out for the party!