Living Well with a Bad Diagnosis - Lung Disease

Wednesday, October 31, 2012

What's that Smell?

First, an OOPS! The big parade to celebrate the Giants winning of the World Series happens today not yesterday. Hopefully, the rain will hold off until the parade is over.

Also, a William update: All the concerts are still on including Friday night in New York. What a surprise.

Happy Halloween! We have lots of plans and people coming into our lives today and will report back tomorrow.

At rehab yesterday, I was greeted by both of my rehab boys for the first time in months. Dick was just there for a visit as he needed to get home to his recovering wife. Her hip replacement was a huge success but she still needs him to get around. He said after the next round of her rehab, he should be able to return to our class. Sherman and I have missed him.

There was also an unusual incident in the rehab class yesterday. It was a bad odor. It smelled of really strong old urine and a dirty body. I noticed it while walking past a woman working out on a machine in the back corner of the gym. She was a nice older woman who was quiet, very overweight and who looked mean until I got her to smile then her whole face lit up. She has been in rehab for less than a year.

Another woman in the class, who I have written about in the past, was very vocal. She was complaining to the staff about the smell while I kept my mouth shut as I continue to stay under the radar. When it was time to workout with the free weights, I had to be near the odor. I grabbed the weights and got through about a quarter of the routine when I just couldn't take it any longer. It was bad. It was to the point where it made me a bit queasy. I fled to the other side of the gym.

At the end of the class, the exercise physiologist Kelly asked if I had done my entire routine. I said that I could only do part of the weights. She paused, looked at me and said, "I got it. It has been addressed."

It must have been very embarrassing for the woman to be told that she stinks. I hope she doesn't just quit coming to rehab because it has been very good for her. I hope to see her Thursday and plan to greet her, get her to smile again and have a bit of a chat.

Tuesday, October 30, 2012

Sending Love to the East

Poor New York and all the people from all the other cities along the eastern seaboard who were affected by the hurricane last night. The pictures on TV this morning showing all the damage are horrible. Devastating. I fear the death toll will rise. Why, oh why, did people not follow the evacuation orders? It was a life changing storm.

William is scheduled to fly out tomorrow for a Thursday concert in Minnesota, then several concerts in New York and other eastern cities. I have a feeling they will all need to be rescheduled.

Here in California, the sun will shine and we will continue on with our lives. In the city, the parade for the World Series Champion Giants will work its way down Market Street to the Civic Center later this morning. I will go to the rehab class around the same time. People will go to their jobs and schools but we will all be thinking of what is happening to millions of people in our country.

Monday, October 29, 2012

The Scoops

The Giants. Almost cause me to have a heart attack but they won. We finally climbed into bed and drifted off around 10:00. Suddenly at 2AM, I was awake for over two hours. Too excited to sleep. It was a long night and I will be dragging all day.

The storm. It looks terrifying. We heard from our friend in Raleigh who is expecting to be hit with lots of wind and rain later today.

The lungs. Feeling good. Breathing well. The other rehab is going to see me early this morning for a hard workout before spending the day with mom.

The vote. We filled in our mail-in ballots yesterday and will mail them today. VOTE.

The phone call. Dave, who built our fence for us two years ago, phoned Saturday morning to ask about pulmonary rehab. He had just been diagnosed with COPD after seeing his primary doctor for over a year. He had been actually bleeding from his lungs. COPD? No bronchoscopy. No biopsy. No CT Scan. No series of PFTs but just one test for lung capacity. He was finally seeing a pulmonologist for the first time on Thursday. I told him not to worry about rehab yet, let's get a proper diagnosis and worry about the cause when we find out what it is. He felt he is ill due to an exposure at work. Very possible. But, he was a longtime smoker who quit over a year ago. His doctor had discounted his lung disease because he was a smoker.  He was talking about disability and not being able to work. We talked a bit about that whole process. Dave was an older father with a very young son who is in the 1st grade. I heard a lot of fear in his voice. I hope I was able to give him good information to carry with him to the pulmonologist on Thursday.

Dear Readers on the East Coast. Stay high and dry. It is going to be a rough few days.

Sunday, October 28, 2012


I am feeling the effects of all the hard, daily rehab. My clothes are looser and I am definitely breathing better. I'll weigh in on Tuesday. After doing all the yard work yesterday, I sat out in the garden to get some sun on my legs. I even noticed that the muscles in my thighs are beginning to show definition again. Ah, it is good to be back.

The recording of the F1 race is on from India and I snuck a peak to see who won - Vettel. Again. The fog is thick this morning but expected to burn off soon. It was rather weird to wake up around 2:00AM to discover that there was a 7.7 earthquake off Canada and about the expected tsunamis in Hawaii and here on the California coast. We have sirens that will go off when there is a warning. This morning was just a tsunami watch. No siren. I'll bet William and Kimberly felt a big shake in Seattle.

The huge hurricane is expected to hit NYC this evening. Oh my. I hope that is somehow misses it!

Our plans for today? The top down on the car, a ride down the coast and a simple light lunch. The Giants play again later this afternoon. A full day ahead. The two of us. Together. Having some fun.

Saturday, October 27, 2012

Conversation in Passing

It's a F1 weekend from India. We are watching the qualifying right now and it should be interesting race with lots of passing. Alonso? Vettel? My money is on Vettel.

For years, I have been working out at the other rehab and often say hello and have conversations with many people there. A nice man older man and I had that type of relationship until yesterday. I was wearing my oxygen and he asked how I was doing. "Not well," was my reply and that led into a very interesting few minutes. Answering his questions, I told him how I got my disease, that I had never smoked and we even got into a conversation about Warren Buffett and his devastating long-term disability insurance which screws ill people. He told me about the death of his wife from lung cancer over 17-years ago. Even though they had five children, he was lonely and felt very forgotten. With a lot of therapy, he was able to walk the road of grief.

He then mentioned that he was a retired teacher from my high school. I knew him. He was my teacher. I was stunned.

His story continued. A couple years after her death, he was done. Finished. Announced his retirement. After a job search, they hired a woman from LA and during the school's Christmas Party, the woman's sister and he were thrown together on a karaoke stage, where they both admitted to not being able to sing. Their next conversation was at a dinner where there was really no conversation. Finally, something happened. Five years after the death of his wife, they married. That was twelve years ago. Her son hated him. His children accepted her for the most part, all except his oldest daughter who was his caretaker. Her job was usurped! It took a few years but everyone loves everyone now.

He also mentioned that his father was the premier confectioner in SF before WWII but during the war, he was not able to get sugar. He became the master confectioner at See's Candy. During this part of the conversation, he mentioned that he and his daughter had a store. I finally asked the name and it was the candy store that mom and I went into where the spa above them began to leak water onto the counter. I have been going there for years, I know his daughter and have even met him in the store through the years. It really is the best chocolate. In fact, the last time William and Kimberly were in town, we dropped in and I bought William a pound of their chocolates.

But what made this conversation so special to me, is that he was surprised with my attitude and my conversations about my death with William and Michael. He so wished he would have had those difficult few minutes with his wife. He also offered to talk with Michael when my time gets closer. He was stunned how I referred to this disease as almost a gift. I have learned and grown so much because of the disease. A forced learning! He ended our conversation with very kind words, which are often hard for me to hear. I try to maintain my focus on the work ahead. I have five weeks before I see Dr. K. and I am working hard to see if exercise will improve my lungs. Already, I have seen an increase of saturation numbers and I am breathing better. We'll see.

Friday, October 26, 2012

Falling into Halloween

I love this time of year. It will be in the 70s during the day but we will be covered in layers of blankets tonight. Halloween has become an evening of company and fun. A party.

Our neighbor Melanie will be turning 16-years old this Halloween. It seems just moments ago that we held her as a new born baby. She is coming to visit, to open her present and to enjoy some hot-spiced cider and a birthday cupcake. I love visiting with her and talking about her life.

Later, Natalie and her entire family will be here to Trick 'N Treat. Their complex does not allow it so they use us as their base camp. Natalie with take Oliver out to just a few houses on our street while Ethan and Winnie run house to house for as long as they can stand it! I will have goodies ready for everyone.

We have been enjoying the World Series and it will be hard to adjust to a normal evening when it is all over. Watching a ball game every night has become a routine! Michael is waving the 2010 Giants Rally Towel during the first game of the World Series. I guess it worked!

Me? When I am not pacing, I am in my recliner biting my fingernails. We have the night off tonight while the teams travel back to Detroit.

And I am heading back to rehab this morning, then to the butcher's and mom's and Target and Trader Joe's. Here are the menus for the week:
Fresh fish - We are going to the boats to buy some fresh fish sometime this weekend. It will be served with some roasted vegetables.
Lamb Stew with Eggplant, Tomatoes and Peppers -
Baked Parmesan Chicken - served with a side salad

The chicken is very different from the other Parmesan Chicken of two weeks ago. No tomato sauce on this one! Really good.

Thursday, October 25, 2012

Returning to Rehab

I returned to the rehab class on Tuesday for the first time in almost three months. As you may remember, the new RN for the program is not well trained on managing a group of people and tends to  say very inappropriate things. I was also not looking forward to her inquisition about where I am medically, though that didn't turn out to be a problem. She was so focused elsewhere that I got away with sharing very little with her. I found that she takes any information given to her and somehow twists it to be used against you later. And she usually does it loudly and in front of the entire group.

But the exercise physiologist Kelly got it. She asked questions while taking my vitals and I told her the truth: I have been working out for over a week at the other rehab and my medical condition is unsettled with continued bronchitis.

My rehab boys: Dick is still AWOL while taking care of his wife who is recovering from hip replacement surgery. Sherman looked fantastic though he said he still feels some effects from his latest bout of bronchitis.

The fantastic news? I had been a bit worried about my weight as I had not been weighed in months during the large dosages of prednisone. I knew I was okay as the size 10s were still fitting, but it was with relief when the scale indicated just a one pound gain.

Our Giants. Well, what can I say? What a game last night. Unfortunately, I had an orchestra rehearsal and missed the final four innings. Game two tonight.

So, back to the rehab class today. I will once again try to stay under the radar and just work out as hard as I can.

Wednesday, October 24, 2012

Living Well with a Bad Diagnosis

One of my readers, Mandray, posted a comment to ask what the initial symptoms were at the beginning of my disease. I love hearing from people who read this blog. We are all trying to understand what happened to us and are going through the process of learning and living with a horrible, life changing diagnosis.

So, I just re-read my first six blogs which are about my symptoms and how I was finally diagnosed. All the emotions came flooding back. It was such a terrifying time of not understanding what was happening to me physically, the complete non-support of the school where I worked, losing my income due to Warren Buffett's Long-Term Disability insurance as part of my employment package which only exposed them to 24 months of payouts for any disease because of extensive exclusions, the four-year Worker's Comp lawsuit and its private investigators following us and beginning rehab. All of it was life changing.

Other than rehab, what still drives me is the continuing need to understand the disease, to learn about the latest research and this blog. It makes me face my life every morning when I write it with a cup of coffee in hand.

I have come a long way mentally and emotionally since I started this blog in 2009. I have met amazing people, learned so much and have accepted the bad diagnosis and wrapped it into our lives, which we try to live in the fullest manner every day.

That, my friends, is living well with a bad diagnosis.

Tuesday, October 23, 2012

Return to Rehab

What a night. The final game of the National League Championship Series ended with a big win for our beloved Giants. And to add to the drama, a huge storm blew in for the final two innings. They will join the Detroit Tigers in the World Series on Wednesday.

Today is the first day I have been to the rehab class in months due to the bronchitis. I am a bit nervous. The RN who took over for Alyson is the issue, I think. She uses information given to her to get back at the patients. It is hard to explain. Somehow when I talk about anything - from food to exercise - I either don't know what I am talking about or doing something the wrong way and am corrected loudly in front of everyone. It makes one not willing to share anything. So, I need to remember to give her as little information as possible, which is not the type of relationship one wants when going through rehab. It will be great to see everyone else and get back into the groove.

I thought I had dry eyes before I saw Dr. W. last week. He explained that I actually have an allergy to the preservative in my glaucoma eye drops. He forgot to give me some samples so I ran by his office yesterday. If the insurance doesn't cover the new drops, they will cost $800.00 for three months. That is a lot of money. After trying the new drops for a month, he will write a letter to the insurance to prove that there was a problem with the old drops and that I am improved with the new ones. Hopefully, that will prove to them that I need the new drug.

Glaucoma. He believes that I have it due to the prednisone. Great. Add that to the list of organs damaged  by seven years of continuous prednisone use: liver, kidneys, pancreas, skin. But, it saved my life.

Monday, October 22, 2012

Pirfenidone Approved in Canada

Thanks to Susan from the ILD Support Group who send the following information to me:

Health Canada Approves Esbriet® as First Treatment for Fatal Lung Disease

- Novel oral therapy slows progression of IPF in mild to moderate patients -
- Esbriet expected to be available on January 1, 2013 -
- Company to provide more details on third quarter earnings call -

BRISBANE, Calif., Oct. 2, 2012 /PRNewswire/ -- InterMune, Inc. (NASDAQ: ITMN) today announced that Health Canada has approved Esbriet® (pirfenidone) for the treatment of mild to moderate idiopathic pulmonary fibrosis (IPF) in adult patients. IPF is a progressive and uniformly fatal disease that affects approximately 5,000 to 8,000 Canadians, is characterized by scarring of lung tissue, and has a similar short life expectancy to that of many forms of cancer, including lung, colorectal and breast cancers. Health Canada designated Esbriet for Priority Review and completed the accelerated review according to target guidelines of 180 days.
"After over a decade of failed clinical trials of multiple innovative drugs for IPF, today's announcement of Health Canada's approval of Esbriet is an exciting one for IPF patients and the larger IPF community," said Charles Chan, M.D., an IPF researcher and Consultant Respirologist at University Health Network, Professor and Vice-Chair of Medicine, University of Toronto. "I am very pleased to finally have a treatment option with proven benefit for patients with this challenging disease."
Pirfenidone is the first and only medicine approved anywhere in the world for the treatment of IPF. In addition to Canada, pirfenidone is approved in 29 European countries under the InterMune trade name Esbriet and in Japan and South Korea where it is marketed by Shionogi & Co. Ltd under the trade name Pirespa®. Under different trade names, pirfenidone is also approved for the treatment of IPF in China, India, and Argentina. InterMune is conducting an additional Phase 3 study, ASCEND, to support the regulatory registration of Esbriet for the treatment of IPF in the United States.
"With the approval of Esbriet by Health Canada we are very pleased to have made another big step toward our objective to bring Esbriet to as many IPF patients as possible – and as soon as possible," said Daniel Welch, Chairman, Chief Executive Officer and President of InterMune.
While Health Canada has now approved Esbriet for the treatment of mild to moderate IPF in adult patients, it is not yet available for sale in Canada. InterMune expects that Esbriet will be available on January 1, 2013. The company is currently working to secure reimbursement of Esbriet from private insurance providers and the public (provincial) drug reimbursement plans in Canada. Approximately one-third of IPF patients in Canada are covered by private insurance and InterMune expects to secure private insurance coverage from some private insurance plans in the first quarter of 2013 and from substantially all of the private insurance plans in the second quarter of 2013. Public (provincial) drug reimbursement plans cover approximately two-thirds of IPF patients in Canada and reimbursement of new medicines from these plans is typically secured within six to 18 months of launch.
Preclinical and in-vitro evidence suggests that Esbriet has both anti-fibrotic and anti-inflammatory effects. In its clinical development program, Esbriet was demonstrated to be effective in decreasing decline in lung function, slowing the progression of the disease and preserving exercise tolerance.
Esbriet was also safe and generally well-tolerated with the most frequent side effects reported being rash and gastrointestinal symptoms. The safety and tolerability of Esbriet in IPF patients is well-characterized based on both clinical studies and the expanding post marketing experience. Safety results from ongoing studies of Esbriet demonstrated that long-term treatment with Esbriet for up to 7.7 years was safe and generally well-tolerated, with a long-term safety profile similar to that observed in Esbriet's original clinical study program.
About Esbriet® (pirfenidone) 
Esbriet is an orally active drug that inhibits the synthesis of TGF-beta, a chemical mediator that controls many cell functions including proliferation and differentiation, and plays a key role in fibrosis, or scarring, of the lung. It also inhibits the synthesis of TNF-alpha, a cytokine that is known to have an active role in inflammation.
On February 28, 2011, the European Commission granted marketing authorization for Esbriet in adults for the treatment of mild to moderate IPF. The approval authorized marketing of Esbriet in all 27 EU member states. Esbriet has since also been approved for marketing in Norway and Iceland -- and now, Canada. Esbriet is now commercially available in Austria, Denmark, Germany, Iceland, Luxembourg, Norway and Sweden, and is expected to be made available in France by the end of 2012.
About IPF
Idiopathic pulmonary fibrosis (IPF) is a progressive, debilitating and ultimately fatal disease characterized predominantly by fibrosis (scarring) in the lungs that compromises lung function and hinders gas exchange. Approximately 5,000 to 8,000 patients are estimated to be living with IPF across Canada, of whom 3,500 to 5,000 are estimated to have mild to moderate disease. IPF is a progressive disease, meaning that over time, lung scarring, symptoms, and functional limitations increase in severity. The median survival time from diagnosis is two to five years, with a five-year survival rate of approximately 20-40 percent, which makes IPF more rapidly lethal than many cancers, including ovarian, colorectal, and breast. Patients diagnosed with IPF are primarily between the ages of 40 and 80, with a median age of 63 years. The disease tends to affect slightly more men than women.
About InterMune 
InterMune is a biotechnology company focused on the research, development and commercialization of innovative therapies in pulmonology and orphan fibrotic diseases. In pulmonology, the company is focused on therapies for the treatment of idiopathic pulmonary fibrosis (IPF), a progressive and fatal lung disease. Pirfenidone, the only medicine approved for IPF anywhere in the world, is approved for marketing by InterMune in 29 European countries and Canada as Esbriet and is currently in an additional Phase 3 clinical trial to support regulatory registration in the United States. Additional information about the study is available at For additional information about InterMune and its R&D pipeline, please visit
Forward-Looking Statements 
This news release contains forward-looking statements within the meaning of section 21E of the Securities Exchange Act of 1934, as amended that reflect InterMune's judgment and involve risks and uncertainties as of the date of this release, including, without limitation, the statements related to the estimated size of the patient population in Canada suffering from IPF; the number of patients in Canada covered by private insurance and public drug reimbursement plans; InterMune's expectation and the projected timing for making Esbriet available in Canada in January 2013 and in France by the end of 2012, securing private insurance coverage for Esbriet, and securing reimbursement of new medicines from public drug reimbursement plans; the role of Esbriet in the treatment of patients with IPF and InterMune's expectation regarding the timing and nature of full enrollment in the ASCEND study and the prospects of success thereof to support regulatory registration of Esbriet for the treatment of IPF in the United States. All forward-looking statements and other information included in this press release are based on information available to InterMune as of the date hereof, and InterMune assumes no obligation to update any such forward-looking statements or information. InterMune's actual results could differ materially from those described in InterMune's forward-looking statements. Other factors that could cause or contribute to such differences include, but are not limited to, those discussed in detail under the heading "Risk Factors" in InterMune's most recent annual report on Form 10-K filed with the Securities and Exchange Commission (SEC) on February 29, 2012 (the "Form 10-K"), most recent quarterly report on Form 10-Q filed with the SEC on August 8, 2012 (the "Form 10-Q") and other periodic reports filed with the SEC, including but not limited to the following: (i) the risks related to the uncertain, lengthy and expensive clinical development process for the company's product candidates, including having no unexpected safety, toxicology, clinical or other issues and having no unexpected clinical trial results such as unexpected new clinical data and unexpected additional analysis of existing clinical data; (ii) risks related to the regulatory process for the company's product candidates, including the possibility that the results of the new 52-week Phase 3 clinical trial (ASCEND) having an FVC endpoint may not be satisfactory to the FDA for InterMune to receive regulatory approval for pirfenidone in the United States; (iii) risks related to unexpected regulatory actions or delays or government regulation generally; (iv) risks related to the company's manufacturing strategy, which relies on third-party manufacturers; (v) risks related to our ability to successfully launch and commercialize Esbriet; and (vi) InterMune's ability to obtain or maintain patent or other proprietary intellectual property protections. The risks and other factors discussed above should be considered only in connection with the fully discussed risks and other factors discussed in detail in the Form 10-K, Form 10-Q and InterMune's other periodic reports filed with the SEC, all of which are available via InterMune's web site at
Esbriet is a registered trademark of InterMune, Inc.

Sunday, October 21, 2012

Exhaustion, Pumpkins and Hugs

Friday was an exhausting end to an unusually busy week. Traffic was a nightmare on the pass to our little town on the coastside. With mom in tow, I drove over the pass four times and sat in heavy traffic caused by a major accident or pumpkin tourists. Leaving home before 7AM allowed me to workout at  the other rehab, see the butcher and buy the weekly groceries at Trader Joe's before picking mom up for the trip over the hill for our 10:00 appointment in town. We both had our toe nails done followed by a early lunch of fish tacos for her and a salad for me. We ran a few errands, I dropped her off then sat in more traffic heading home.

I had not seen Natalie, Winnie and Oliver for a couple of weeks, so I met them at Winnie's swimming lesson in town at 4:00. And yes, there was a three car accident on the only highway into town. More traffic. But, it was worth the hug I got from Winnie and the squeal of delight in seeing me from Oliver. Natalie and I were able to talk about her job and my health. I was also heartened to hear that Winnie has been accessed and that she is one of three kindergartners who are reading. Natalie has been hired to teach music to all the students on Friday afternoon. This is a very small school of 90 students from kindergarten through 5th grade. All the students play together. She told me that while she was teaching the 5th graders, one of the boys asked if she was Winnie's mom and said, "She is very polite."

Exhaustion was the word of the day. I slept over 10 hours. But after Michael left Saturday morning, I went back to bed for several more. By noon, I was feeling better so I cut the grass in anticipation of the rains beginning today. I also made a killer Ginger Beef dinner in the wok.

I am feeling pretty good this morning and have decided to go over the pass with Michael today. I'll hit the other rehab for a good workout, we'll have some lunch then head home the long way because of the pumpkin tourists. So happy when Halloween finally arrives!

Saturday, October 20, 2012

The Coalition for Pulmonary Fibrosis - FDA List

I received an e-mail from The Coalition for Pulmonary Fibrosis regarding their request for letters being sent to the FDA to add Pulmonary Fibrosis to a list. The list is of other disease areas to be addressed by the new Patient-Focused Drug Development program at the FDA.

Thank you to those who sent in the one of 1,500 letters. 

Here is the e-mail:

The Coalition for Pulmonary Fibrosis asked for our members' help concerning a key issue -- that Pulmonary Fibrosis (PF) isn't listed as a disease area that may be addressed by the new Congressionally mandated Patient-Focused Drug Development program at Food & Drug Administration (FDA) (for the disease areas FDA includes, see pasted at the bottom of this email).  
We asked you to send letters to the FDA asking them to include PF.  
YOU answered our call!  Thank you!  More than 1,500 letters have gone to the FDA in the last couple of weeks.  The comment deadline from the public on the issue was yesterday.  
Also, our Champions in Congress sent a letter of their own to the FDA asking for PF's inclusion in the program!  Click here to see the letter.  Join us in thanking Senator Chris Coons (D-DE) and Representative Erik Paulsen (R-MN) and their staffs for asking for the FDA's help in PF!  They are championing PF efforts, as well, with the Pulmonary Fibrosis Research Enhancement Act (H.R. 2505, S. 1350).
The CPF understands there are limitations on the number of diseases the FDA can address, but it is our role to encourage attention to PF, and we appreciate your willingness to join in that effort.
Mishka Michon, CEO of the Coalition for Pulmonary Fibrosis

Preliminary Disease areas recommended by FDA:
  • Pulmonary arterial hypertension
  • Heart failure
  • Primary glomerular diseases
  • Narcolepsy
  • Huntington's Disease
  • Depression
  • Autism
  • Peripheral neuropathy
  • Fibromyalgia
  • Obesity
  • Nocturia
  • Chronic fatigue syndrome
  • Irritable bowel syndrome
  • Inflammatory bowel disease
  • Alopecia areata
  • Diabetic ulcers
  • Female sexual dysfunction
  • Interstitial cystitis/painful bladder syndrome
  • Fracture healing
  • Diabetic foot infections
  • Hepatitis C
  • HIV
  • Patients who have experienced an organ transplant
  • Sickle cell disease
  • Chronic graft versus host disease
  • Amyloidosis
  • Aplastic anemia
  • Melanoma
  • Lung cancer
  • Cancer and young patients
  • Cancer treatment in pregnancy
  • Cancer and sexual dysfunction
  • Cancer and depression
  • Clotting disorders (e.g., hemophilia A (factor VIII deficiency) and von Willebrand disease)
  • Thrombotic disorders (e.g., antithrombin deficiency and protein C deficiency)
  • Primary humoral immune deficiencies (e.g., common variable immune deficiency)
  • Neurologic disorders treated with immune globulins (e.g., chronic inflammatory demyelinating polyneuropathy)
  • Hereditary angioedema
  • Alpha-1 antitrypsin deficiency.

Friday, October 19, 2012

ILD Annual Luncheon and Lung Transplants

I was on my way to the ILD Support Group Luncheon when I spotted Carol from my rehab class. She has not been to rehab in almost a year and we had wondered what happened to her. She looks like she is in her 20s, works full time, has a 30+-year old son and has been dealing with bad lungs since she was a child.

There she was. I called to her, we hugged and talked. She had depleted very quickly since I had see her last and was actually on her way to an appointment at the Lung Transplant Clinic to be assigned a number and to begin the waiting game. She had already jumped through all the hoops, passed all the tests and was really ready to get new lungs.

She is relatively young in the world of lung transplants. I suspect she will do very well. My fingers are crossed.

I checked into the luncheon a bit early. The expert of my disease joined our table. She was on crutches with a broken foot and announced that she had a baby just 6-months ago! She and her doctor husband are older and had never had children. Her father keeps referring to the baby as a miracle. She looked fantastic and was still adjusting to a new little one in their lives. I asked her if Dr. K. ever retired or moved to another university, would she take me as a patient. She agreed to take me on. She also shared that Dr. K. was just given a huge honor by receiving an award from the “fellows” which, apparently is a very prestigious nod to her as a teacher. A big deal. I am not surprised. She is an amazing doctor.

Marty, who has HP and a member of the support group, also chatted a bit. He is not doing well and was teary just talking about wanting his life back. He is tethered to oxygen 24/7 and is very frustrated. After our conversation, he decided to begin the first steps beginning with the interview process towards lung transplants.

The beautiful Susan is retiring next month due to her diagnosis of IPF. It is rather sad that this brilliant woman who is at her peak in a very challenging job must retire because of her health. It seems so wrong but I wonder what she will do when that page is turned. I know that she will continue to be involved in her passions.

The luncheon was inspiring. Many lung transplant patients were present, all looking fantastic and a speaker was one of the transplant coordinators. Amazing people doing an amazing jobs. It is really a team of people, from doctors to staff to RNs to researchers to the patients. All working together. As they kept commenting, they all feel that they have more than just a job and that working with the lung patients has become a passion.

It was hilarious to hear how the hospital began doing lung transplants in the 1970s. Pulmonologist Dr. G. read about one in the New England Journal of Medicine and, in his words, said, “Cool!” He phoned the doctor, related the information to one of his fibrotic challenged patients who flew to the other doctor’s hospital and had the transplants. So, Dr. G. talked a heart surgeon into doing a lung transplant with him. He had another patient who was game, it worked and he said they were friends for many years. Now remember, this was before immune suppressant drugs were even available. These patients survived for over a decade without the help of our current array of drugs.

It was after many more successful lung transplants that the dreaded memo arrived from above asking who had given him permission to begin doing lung transplants. He smiled. By then, he had a whole system in place and he was off and running. Too late to ask permission! He built the entire Lung Transplant practice at my university hospital. What a guy.

I must say that it was a clear, warm beautiful drive home through the city then along the ocean cliffs. All the windows of the car were down and the temperature was In the 80s. It was only 2:00 when Michael met me at home, we sat in the garden, turned on the Giants and 49er games after a very light dinner of Scallops Wrapped in Bacon. See you next year, Giants!

Life is pretty darn good.

Thursday, October 18, 2012


I hit the other rehab with renewed vigor yesterday. After telling the RNs who were there for a cardiac rehab class about the downturn with my lungs, they strongly suggested that I use a mask while at their gym. One said that I cannot afford anymore lung capacity lost due to a cold or the flu. It could kill me. She is right. So, I will be wearing a mask along with my oxygen while working out.

Something I forgot to blog yesterday that Dr. K. talked about during the appointment on Monday was microaspirations. Non-acid microaspirations. Here is some background information I pulled from the Internet:
Aspiration is defined as the inhalation of oropharyngeal or gastric contents into the larynx and lower respiratory tract. The clinical syndrome due to aspiration (e.g. aspiration pneumonitis, aspiration pneumonia) depends on the nature and volume of aspirated material, the frequency of aspiration, and the host’s response to the aspirated material.
The term “silent” microaspiration is used when patients have asymptomatic aspiration of small volumes of oropharyngeal secretions or gastric fluid into their lungs. Approximately half of all healthy adults aspirate small amounts of oropharyngeal secretions during sleep and other co-morbidities may increase the risk of aspiration (e.g. scleroderma, cerebrovascular disease, and degenerative neurologic disease).However, normal host defenses (e.g. glottis closure, cough reflex) are usually able to compensate.Depending on the frequency and intensity of the silent microaspiration, and, perhaps, genetic predisposition, patients may manifest with cough, wheeze, or mild gas exchange abnormalities.
Gastroesophageal reflux and silent microaspiration is associated with several lung diseases and among those who have had lung transplantation. Lipoid pneumonia is caused by the silent microaspiration of exogenous lipid (usually a complication of long-term ingestion of oil-based compounds) that leads to a chronic inflammatory pneumonitis that often progresses to fibrosis. Silent microaspiration has also been suggested as a cause of chronic bronchiolar and interstitial lung disease. Lastly, data from the lung transplantation literature strongly suggests that chronic silent microaspiration is associated with post-transplantation bronchiolitis obliterans, the primary lesion in chronic organ rejection. In fact, several studies have suggested that early fundoplication improves survival and decreases chronic allograft rejection in this population, presumably through reducing the frequency of silent microaspiration.
Stuff coming up from the gut into the lungs causing problems with the lungs. I have had the fundoplication surgery, but she said that often the microaspirations still get through. I sleep on a wedge yet I have noticed that I had been burping a lot recently - it has since slowed down - so maybe she is right, once again. She told me to remember to stand straight, do not lean forward to eat or to garden or while driving. It apparently helps to stay totally upright so ballet posture!

Wednesday, October 17, 2012

A Giant Step Closer to Lung Transplants

Lots of drama yesterday. I met our friend Don at the university hospital in the city and went up to the lung clinic for his first appointment. He has been having breathing issues that are quite pronounced. We met a new “Fellow” who did the input interview, then brought in the doctor after they discussed everything between them.

I recognized the doctor and he kept looking at me like, “I know you from somewhere…” We talked at an ILD luncheon two years ago and have bumped into each other through the years. Anyway, Don answered his additional questions, they both told him they don’t think that what he has was serious and ordered a full set of pulmonary function tests and a chest x-ray. The entire appointment was just over an hour.

After running Don downstairs to visit with my most favorite x-ray tech, we retrieved his car from valet parking and he took off. He did say that he felt that he was listened to, that he was in good hands and is confident that they will figure it out.

I ran back up to the clinic for my 3:00 appointment. While having my vitals checked, Don’s doctor came by for a chat. He asked my name again, remembered that I had HP and was with Dr. K. I told him that Don felt that he was in good hands and thanked him.

 I did just two PFTs - Spirometry and DLCO – before seeing Dr. K.

Not good. Still around the same numbers compared to 6 weeks ago. She believed that more antibiotics and continuing the higher dosages of prednisone wouldn’t improve my lungs at this point. She heard a lot of crackling.

She believed that what I am experiencing is just part of the HP disease process. A big, fat giant step toward lung transplants. The dreaded transplants. Only 50% of transplanted people are alive after 5 years. Not great odds. Something to be put off as long as possible.

Sooooo, I am one never to throw in the towel. Per Dr. K., I haven’t been to rehab in over eight weeks. Exercise has worked for me by keeping my disease stable these past seven years, so I am going to hit the gym hard. I am seeing her again in just six weeks. I have six weeks to exercise everyday to see if I can improve my lungs. If not, at least I tried.

Here we go.

Tuesday, October 16, 2012

Big Oops!

I think I need a handler. Driving early enough to my university hospital in the city to get a blood draw before my afternoon appointment with Dr. K., I was rather shocked to discover that I was a day early for the visit. A day early. Duh.

The good news is that I was going to be there anyway today to hold our friend Don's hand for his first appointment in the lung clinic. We are meeting at noon in the lobby and the appointment should end around 1:45/2:00. I guarantee that we will talk together afterwards before I have to head back up to the clinic for the PFTs at 4:00 and appointment at 4:30.

A long day ahead. The traffic coming home will be slow and irritating! Dinner is already in the refrigerator ready to be reheated.

The Giants won last night and have the day off today while they travel back to St. Louis.

So, back into the car I go!

Monday, October 15, 2012

Along the Trail

We went for a walk along the ocean yesterday. It felt horrible. I could not get loose and needed 6-liters of oxygen to walk at a decent pace. We had to cut it short because I just didn't have the stamina to walk our normal route. I was very disappointed.

While on the trail, we stopped to look at a house and someone on a bike riding with a little girl asked if we were birdwatching. Turned out to be Wayne's neighbor, a relatively new friend of Michael's and a highly regarded very successful man in his field. I had met him once. What joy. There I was in walking clothes, backpack full of oxygen, cannula in my nose, baseball hat and sweat dripping onto my shirt. A picture of beauty! He was kind, never mentioned the oxygen and shook my hand after a lovely chat before taking off on his bike.

We walked north as far as I could go, paused to gaze at the deep blue/green ocean, which was pretty choppy and just beautiful before turning back south towards home. Just off the trail, Michael spotted one of Jim's sons talking with someone in a driveway, so we stopped to say hello. They asked if I was carrying beer in my backpack before realizing that it was oxygen. He knows I am ill and felt like he stuck his foot in his mouth but I made a joke and everyone laughed. Some music came on, the older owner of the house did a cute quick dance and I joined him, "I've got the oxygen cranked up all the way so let's dance!" Everyone laughed! We said our goodbyes and returned to the trail.

When we got home, I was soaked in sweat. Every inch of my hair was dripping wet. It took time sitting in my chair to recover before I watered the garden and watched the Giants lose to the Cardinals.

My stress today? My lung doctor Dr. K. and an appointment at 4:00 this afternoon. We will see if I still have bronchitis after almost three months.

Sunday, October 14, 2012

German Night

We had a perfect evening after leaving one car at Fran and Ricky's house far away from the local Pumpkin Festival. I got out of town early to avoid the exodus of the masses. We arrived right on time to a rather gritty part of the city yet found a perfect parking spot right in front of the restaurant. Here was the sign on the front door going into the place:

So interesting. It was soooo German. East German.

Throughout the evening, men wearing leather lederhosen arrived on bicycles and scurried into the back room. The "Oktoberfest" room. Lots of serious fun going on back there!

There was never a pause in our the conversation. The boys on one side of the table, girls on the other. It was great fun to have some time to have serious a conversation. Margit is the special education teacher for a middle school so we talked a lot of teacher talk. The boys? I heard a lot of laughing from that side of the table!

The food. Glorious. Very traditional. Since Speckman's closed in SF, there has been no really good German restaurant to be found. We were thrilled to discover this gem. Michael ordered the Grilled Thuringer Bratwurst with sauerkraut and mashed potatoes while I had the Beef Roulade (Tri-tip stuffed with bacon, pickles, mustard and onions) with spatzle and red cabbage. I gave Michael half of mine and he shared a bite of his sausage. It was marvelous. We also traded my spatzle for his sauerkraut. Margit and Bill had the Schnitzel (huge breaded porkloin) with mashed potatoes and veggies and the Garlic Roast Pork with potatoes and veggies. Bill and I had water, Margit enjoyed a glass of wine and Michael smiled through a wonderful German beer.

Desserts. There were only three offered. We ordered all three! I took a forkful of each:
Michael - A tiny layered cake made with chocolate, rum and butter cookies
Margit - Red Berry Pudding with Vanilla Sauce
Bill - Apple Strudel with Ciao Bella Vanilla Ice Cream served warm.

All of this for a grand total of $109.00. Very cheap for a city restaurant.

And the very best part, we were home by 8:00. No late night! No exhaustion!

We are primed and ready for a lot of fun today. We are watching the recording of the F1 race from Korea right now while eating breakfast, the 49er's play in SF at 1:00 and the first game of the playoff between the Giants and Cardinals begins at 5:00. It is a sports day! Oh, and the Pumpkin Festival continues today.

Saturday, October 13, 2012

Simple Things

What a magnificent win for the St. Louis Cardinals. Torturous. Stunned the stadium into silence. My brother was sure they were going to win and they did. The next game will be here on Sunday between the Cardinals and the Giants. Here we go.

The pumpkin festival begins within the hour and the town is beginning to swell with people. We are having dinner in the city tonight with our former neighbors, Margit and Bill. I will have to fight my way out of town later this afternoon to meet Michael at a friends house where we will leave his car for the evening. From there, we will drive to meet Margit and Bill at an East German restaurant in the Mission District. Ah, the Mission. It is best not to wear good jewelery or carry a large purse or look too substantial but it has some of the best food in the city. Here is the menu:

And it is often the simple things of life which bring joy. I found a dress. Not an easy task for me. I spotted it on the sale rack at Anthrogologie last weekend. Mom and I went this week and I thought that if it was still there, it was meant to be. It was. I did. Done. Yesterday, we found a pair of Anne Klein shoes to wear with the new dress at DSW on their sale rack for $54.98 minus 50%. Off to Nordstroms we went to buy the perfect colored tights and ta-da! My entire Christmas outfit for under $150.00.

Also, my oven is still filling me with delight. The smell of bacon is wafting through the house while it is being cooked perfectly. Everything comes out of that oven perfectly. Never seen anything like it. Magic.

The lovely simple things which bring such joy: baseball, friends, food, sales, cooking.

Friday, October 12, 2012

Giant's and Pumpkins and Menu for the Week

While sitting in the DMV office waiting for mom's appointment to get her disability placard yesterday, I met a woman who was following the Giant's game on her phone. We clung to each other. The last inning was torture! When the Giant's finally won, the employees and the hundreds of people waiting in lines broke into spontaneous cheers. It was so fun to be with a group of total strangers who all bonded together at that moment. Smiles all around. Congratulations to our dear Giant's.

With that win, my mom has to deal with a dilemma. If St. Louis makes it to the next level, they will be playing the Giant's. My sister and I love the Giant's but my brother is a life-long St. Louis Cardinal fan following a long tradition going back to my grandfather. Who is mom going to route for? We'll see!

We live in the middle of Pumpkin Country (and also Brussels sprouts, which have just been harvested. Nothing smells as bad as a newly harvested fields of Brussels sprouts!) which causes a lot of headaches during the month of October. Two of the largest growers along the small road over the pass try to compete with Disneyland with hay and pony rides, haunted houses and endless pumpkins. Massive traffic makes it impossible to travel the pass in a timely manner anytime during the month.

The culmination of all things pumpkin happens this weekend with the Pumpkin Festival. Several 100,000 people make their way to our little town on the coast to walk Main Street with its crafts and arts sellers and food and wine. At noon tomorrow, there will be a parade featuring the high school marching band, horses, fire trucks and kids in costumes. A small town parade.

I am staying home. Later in the day, we are going to try to make our way north to the city to meet our former neighbors for an early dinner. It is going to be crazy traffic.

Today, I am going to Trader's to make sure we have food for the weekend, which brings me to the menu for the week. It is going to be a very simple week. Remember, we who live on prednisone do not process foods like other people. After long-term usage, we don't properly process sugars of any kinds including fruits, milk, yogurt, starchy vegetables or grains. We primarily eat non-starchy vegetables and protein. I have been able to keep my weight off for well over a year using this template. And skinny Michael loves the food!

Texas Chili -

Amy's Parm Chicken served with a side of Pasta Slim (found in Whole Foods refrigerator cases) -

Small 3-4oz pork chop with a side of Baked Stuffed Mushrooms with Sausage and Mozzarella - This is an Atkins recipe which I have printed out but cannot access anymore. For those who subscribe to Atkins, it is a great recipe.

Thursday, October 11, 2012

Chapters in Our Life Book

There is a library of donated books at my mom's place which has supplied me with a steady stream of treadmill books. Mom will read one, pass it along to me then she returns it. I am reading one right now written by a first time author, Beth Hoffman. It is "The Saving of CeeCee Honeycutt." It was published in 2010 so please excuse me for being late to the party!

It is about a young girl raised by a mentally ill mom with an absent dad. When mom is hit by a bus, a great aunt arrives and her life really begins. There are nuggets of wisdom throughout the book.

I was on the phone with Michael's sister yesterday when her college freshman son announced that he was going to the club house. I heard a commotion. His sister told me that he had not gone to class because he had not been feeling well yet he now wanted to go to meet a new girl at the club house. She has been telling him that he needs to focused on school and that it is not necessary to have a girlfriend every moment. New girlfriends have been announced almost weekly on Facebook.

Anna has also been trying to help him understand that he is not in high school anymore. He needs to turn a page to begin a new chapter in his life. It sparked something I had read in the book earlier in the day. She asked that I send it to her. Here it is:

"Mrs. Odell, couldn't I live with you?"
"I wish you could," she said, pressing her check to mine. "But, that's not the way it's written in your Life Book. This is the beginning of a big adventure, and you won't want to miss it. Your Life Book is about to revel a brand new chapter, and so is mine."
I sat up and searched her face. "What do you mean?"
"The winter months are hard on me. A few weeks ago my cousin Adele called and asked me to move down to Florida, to live with her. I knew it would be a nice warm place to spend the rest of my days, but I just wasn't sure if that's where I belonged. So I thought about it awhile, and after your daddy told me that you're moving to Savannah, I decided I'd go ahead and accept Adele's offer. Life is full of change, honey. That's how we learn and grow. When we're born, the Good Lord gives each of us a Life Book. Chapter by chapter, we live and learn."
"But, Mrs. Odell, I've never heard of the Life Book."
"It's not a book you can see or touch. It's a book that's held deep within your heart. It's guarded by your spirit."
"My spirit?"
"Yes," she said, smoothing a loose strand of hair from my face. "When a chapter of your Life Book is complete, your spirit knows it's time to turn the page so a new chapter can begin. Even when you're scared or think you're not ready, your spirit knows you are."

Your spirit knows when you are ready. Being diagnosed with a fatal disease is a new chapter of a Life Book. It was not one I would choose and it has been probably the most terrifying part of my life but it is the chapter I have learned so much about myself and others. It strangely has made me stronger. 

Wednesday, October 10, 2012

Trying to Break Traditions

With the smells of Fall and Halloween drawing near, I find myself thinking ahead to Christmas. I know, I can't believe it is so close. Our family takes turns for the holidays and this year, my sister has Thanksgiving and I have Christmas. I love being home for Christmas.

But, there are issues:

  • I have been sick with bronchitis for around four months this year and my stamina is not up to its former levels. 
  • My sister and husband and their daughter and husband live around two hours away and they like to stay at a local hotel Christmas evening then have breakfast here the next morning. So Christmas includes not only lunch, appetizers and dinner but a full breakfast for everyone the next morning.
  • After dinner, everyone usually stays another four hours. Nice, but I am always exhausted yet have to be up early to make breakfast the next morning. 
  • We plan and serve a unique-themed dinner inspired by foods from different countries.
  • My sister and husband are steeped in tradition and do not like changes, in fact, get very angry when forced to adjust (i.e. Thanksgiving last year when we had to go to mom's because of her broken pelvis).

Short-term Solutions:

  • Michael is going to take my brother-in-law aside during Thanksgiving to let him know that we are going to have a very simple early dinner this year. 
  • He is also going to suggest that they not spend the night since it is going to be an early dinner.

Long-term Solutions:

  • My niece Shelley is going to try to talk her parents into allowing her to have Christmas at her house in Sacramento next year. Her plan? Meet at noon for appetizers, open presents, have a potluck dinner around 3:00 and out the door by 5:00. We would be home by 7:00. Perfect.
  • Very long-term - Many years from now when my mom is no longer with us, we will spend holidays separately and meet in the city for lunch a few times a year. 

So, dear reader, I need advice. How does your family change long-held traditions to adjust to your disease?

Tuesday, October 9, 2012

Faith in Humanity Fully Restored!

We received a thank you note along with a check with a bonus from the husband of the woman who hit my car last week. It was very touching. They live in Illinois and apparently, she is currently out here visiting while her husband is home. Michael had phoned her husband just after the incident and then again a couple of days later to let him know how much the tail light assembly cost. His cost. He had also mentioned in the first phone call that both of us are from Illinois.

The man was so touched when Michael told him that he would replace the unit at no charge. Total cost? $159.00. We received a check for $170.00 and the following note on a Thank You card design by the husband:

Enclosed is a check for 170.00, of which 159.00 is for the tail light assembly. The little extra is for all of you for your grief (I know how I would have felt - a good cocktail would have been needed).

They say no good deed goes unpunished - (i.e. me taking responsibility for my debt to you), but in your case, your graciousness in the matter, and keeping things simple, was a good deed in return, for which I am quite appreciative.

I hope all goes well with the replacing the assembly.

How sweet is that? Michael replaced the assembly and put a little gas in my car with the extra money.

Last night, we had a birthday dinner for British Don at our favorite restaurant, Chez Papa. It was PACKED for a Monday night. We met the owners there, they loved the presents we had brought with us and we enjoyed a specular dinner. It began with the table flooded with appetizers: Kobe Beef Tartar, Mushroom Tart, something that was made with a loose goat cheese and mushrooms, Beet Salad, the most amazing Ravioli. They also made the best olive tapenade I have ever eaten along with bread. Ah, the bread.

Michael and I negotiated what we would order before we arrived: Hanger steak. Split. Perfect portion. Did I mention dessert? Lavender Cream Brulee, Molten Lava Chocolate Cake, Panna Cotta. Everyone tasted every one!

We arrived home at 12:30AM. Early-to-bed us! We were snoring within moments of crawling under the covers. It was a fun night and we have been invited to the home of the owners in two weeks for a Vietnamese dinner. It should be spectacular!

It is a long story but during the short drive to Don's house, he quietly mentioned that neither his step-children nor his daughter contacted him for his birthday. No text. No Facebook. No phone call. No card. Nothing. I am so happy that we were with him. We feel like family. He and Michael have grown very close, so close in fact, he has named Michael as the executor of his estate. It was a rather sad ending to very nice, sweet, fun birthday celebration for a wonderful guy.

Monday, October 8, 2012

Say, "Ah!"

The Giants are not looking good. It is especially painful since our friends Joanne and Jeff live in Ohio, the home of the Cincinnati Reds. Maybe our Giants will revive themselves to give them a bit of a challenge. We watched the game from our new recliners. We are now officially old! Michael loves his so that is all that matters to me. Here are before and after photos:

Before - a little dark
When Oliver and Winnie are here, I have a footstool that opens to a pile coloring books and crayons and stickers. Also, I have thrown in any musical cards we have received through the years. These have intrigued both kids through the years. So, I sent musical Halloween cards to them on Saturday. Winnie's card sings, "The Monster Mash" and Oliver's wails, "I Want Candy!" Do you remember how exciting it was to receive something in the mail when you were a kid?

Tonight is the birthday dinner in SF for Don and the gifts are ready to go. He is getting a new brandy produced by Germain-Robin labeled Coast Road Reserve. I also found a very cool wooden toy for the almost year-old daughter of the restaurant owners who will be hosting the dinner.

I worked out at the other rehab on Sunday while Michael was busy. Unfortunately, I forgot my oxygen. Duh. So, instead of 3.4mph on the treadmill, I stayed at 3.0. At that level, I was able to keep my saturation levels up well over 90% and often into the mid-90s. I also took the opportunity to use some of the other weight machines since no one else was there. I loved them. I am going to work them into my routine three times a week.

This morning, I am visiting with our dentist for a bit of work. She is also the harpist with the orchestra. Love that so many of my doctors are also musicians! Afterwards, I am going to work out at the other rehab again, swing by Trader Joe's for some scallops that were not available last week and I might sneak in a nap since tonight is going to be a late night.