Living Well with a Bad Diagnosis - Lung Disease

Thursday, July 31, 2014

Shave and a Hair Cut

After all of my whining about the "gentle yoga" class, it really was fun. I will go again next week but I didn't sweat or even need my oxygen. That was a bit disappointing. I flew home, changed clothes and drove back into town for my hair appointment when I noticed a sign on their door. A new offering. Facials.

I have had three facials in my life and hated each one of them. My skin always had a bad reaction. I hated the misting. I couldn't breathe! But, my hair salon was offering 30-minute facials. They even offered them while hair coloring was being processed. Bingo! I had one. It was fantastic, there was no misting and I had no adverse reactions. It was $30.00. That is very inexpensive for this area.

Somehow, I was busy at home all afternoon and felt like I got a lot accomplished. Michael had a hair cut appointment at the same salon after work. The owner had mentioned to me that she hired a barber and in fact, she was also a licensed barber. They were finishing remodeling an area with a real barber chair already installed. I told her to offer to shave Michael after his hair cut. A real shave with a straight edge razor. Well, he came home so happy. He said he had never had anything like that. It included hot steam towels and a facial massage using fantastic products. What a treat! The cost? Twenty dollars.

As he was leaving for work this morning, we rubbed our fabulously soft cheeks together. It is the small things in life that brings such joy.

Wednesday, July 30, 2014

New Yoga, Dolphins and Paid IPF Interviews

On my walk along the ocean before going to pulmonary rehab class yesterday, I saw my first pod of dolphins in many years. A small pod, to be sure, but a beautiful group breaking through the surface of the water together as they moved north. It was magical. I stood and watched in awe. Not only dolphins, but I saw several sea lions and a small group of pelicans were back from wherever they have been hiding.

Within the hour of returning, I had to leave for class over the pass. Horrific traffic caused by a massive truck blocking all lanes slowed me down but I got to class with time to spare. The plumber did not come by later, but phoned.

Wednesday = Yoga. There is a new type of yoga class being presented in my old time slot. I am not amuse. I love a very active, aerobic yoga and the new class will featured a slower, calmer, more reflective type of yoga. NOOOOOO! I want to sweat! I want to feel it the next morning. As it is the first class, it is being offered for free. I will go. I will go with a positive attitude. We'll see how it goes. Afterwards, I will have a quick change and a run back into town for a hair appointment. Then, I wait again for the plumber.

Just a reminder for those of us with IPF that you can be paid for an interview about your experiences by a healthcare consulting company. All information is below.

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The Coalition for Pulmonary Fibrosis is notifying you of an opportunity to have a paid phone interview with a medical market research company regarding Pulmonary Fibrosis (PF) during the month of August.   You'll be paid $100 for an hour of your time.  Details are below in this email.
If you are a patient or a caregiver, please read the details below and reply directly to the company (ClearView Healthcare Partners) if you are interested in this opportunity.
The Coalition for Pulmonary Fibrosis
DETAILS of opportunity:
WHO:  ClearView Healthcare Partners, is a healthcare consulting company ( that works with pharmaceutical and biotech companies.  
WHAT:  $100 for a phone interview with an IPF patient, or a caregiver .  They are currently working with a pharmaceutical or biotech company to assist them in developing new treatments for idiopathic pulmonary fibrosis (IPF) by trying to understand what patients need most.  There have been important advancements in the field of IPF over the past several months, but there remains a lot of progress that needs to be made.  It will be important now, more than ever, to understand where that progress needs to be made.
WHEN?  August 1 - 31, 2014
WHERE?  All by telephone. ClearView will set up a day and time with you for your interview. 
WHY?  The goal of their research is to understand the experiences that you and your family have dealt with as a result of your IPF diagnosis.  
DETAILS ABOUT THE INTERVIEW: More specifically, they are interested in speaking with you if you have been diagnosed with IPF or are a caregiver of a loved one with IPF about the following topics:
  • Your early experience with the symptoms typical of IPF
  • Your journey that led to the diagnosis and what could have been done differently
  • Your daily life and how it has been impacted by IPF
  • Your current disease management strategies
  • Your interest in future therapies for IPF
The company is conducting telephone interviews so that they can get your opinion and help the client develop drugs that better and address your needs.  They have described the interview below:
  • One-on-one phone interview (August 1 – August 31)
  • ClearView will conduct the interview
  • Interviews will last 60 minutes and be conducted via telephone, but please let us know if you prefer a shorter call
  • Everything will be 100% confidential
CONTACT:  If you are interested, please contact ClearView by email or by telephone for scheduling and with any additional questions:  Laney Monsey, on behalf of ClearView Healthcare Partners: Email at or call Laney at 617-614-9539
Coalition for Pulmonary Fibrosis
10866 W. Washington Blvd. #343
Culver City, CA 90232
(888) 222-8541

Tuesday, July 29, 2014

Weight Goal

The smell of cooking ham steak is a lovely way to begin the day! I wish you could smell it right now. This special breakfast was promised to Michael and he has been so looking forward to this treat. Yum.

I am on a tear to get under my lowest weight. It is my newest goal. To that end, I am watching every single bite of food, no nut snacks in the afternoon and lots of water. This morning, I will hit the trail along the ocean before working out at the pulmonary rehab class. And in even more exciting news, the plumber is coming here this afternoon so he can tweak the water pressure valve. It barks like a dog every time we turn the faucets on and off. Driving me crazy. I am still waiting for the electrician to drop by to replace the large bathroom light fixture. He promised to swing by last week...

Back to the weight: Since Michael is leaving me Friday through Sunday, I thought it was my chance to make food I have been craving and the opportunity to do some heavy chores. We have an amazing drainage system in our back yard but about every 8-10 years, the dirt in the collection area needs to be "fluffed." I've never done it before, just watched it happen last time. It requires moving small stones away from the dirt then turning the dirt, replacing the small stones then moving the larger stones next to that area, turn the area under them, etc. I will also add roughing up the dirt around the stepping stones near that area to help with the drainage as well. It will be a lot of work. I will sleep well that night instead of tossing and turning and missing him next to me.

Monday, July 28, 2014

Mondays and Upcoming ILD Support Group

Mondays always feels good when all the chores are done: food in the refrigerator, gardens done, house cleaned, laundry ironed. A good way to start the week. Mom has a dentist appointment here on the coast this morning so we might swing by so I can walk her through the gardens. They look full of life and in bloom right now. After her appointment, we will enjoy some grilled fish tacos for lunch before heading back over the pass.

It is a rather quiet week ahead, thank goodness as I am still recovering from last week! This morning, I noticed I have a short, dry cough. Not a good sign. I so hope I am not getting sick from too many late nights and not enough sleep last week.

The ILD Support Group in August is going to feature a speaker from an oxygen company talking about the different machines and insurance. As I am the last standing charter member of the group, I have seen this presentation before. Twice. I do like to go to the meetings as I can meet and talk with the newly diagnoses people but I almost feel like it is a waste of time and a lot of energy. I give up a rehab class in order to attend the meetings but sometimes, I think it is more important to attend the rehab class. This may be one of those times.

What I do love is the annual ILD Support Group luncheon. It is a time to see all the former members of the group who have had their lung transplants and also have chats with the various doctors I haven't recently seen in person. That luncheon is scheduled for September. Something to look forward to.

Something not to look forward to is Michael leaving me Friday morning through Sunday evening. I love that he goes to hot, mountainous Reno, NV for their annual nod to the automobile, Hot August Nights. He is in car heaven. His favorite part of the whole weekend is during the parade of cars when he is given a VIP pass to where they serve all the ice cream he can eat! He is one happy guy. It is good for him to get away but I really miss him. We are so rarely apart.

Sunday, July 27, 2014

Day For Recovering

I don't feel as awful as I expected. We didn't get home until midnight after a unique dining experience. We had been to this restaurant once before and it was so ironic that we were seated at the same table! But, it was a treat as it looked out at the Bay Bridge lit up in all its glory. It was one of those three-hour dinners featuring great conversation, delicious seafood appetizers and perfectly cooked salmon for me. It lived up to its reputation of being one of the very top restaurants in the city.

The fog is in this morning and it is rather cool. The house across the cul de sac from us is for sale and its first open house is today. My old walking buddy, Margit and her husband Bill have been living on their boat in the city and has been renting it out for the last eight years. There is currently very little inventory on the coast and all properties are involved in bidding wars. It should be interesting to see how much they get for it as it really needs updating and a lot of work. It still has the original aluminum framed single paned windows.

I find that after such a busy week with two nights out, I need down time to recover. But, even during recovery times, I try to exercise. To get moving, I am going to drive to the harbor and walk along the shore for an hour. Later, I want to do a bit more gardening. Hand trimming with just a little pair of clippers. My zen place.

Happy Sunday!

Saturday, July 26, 2014

Paid Interviews of IPF Patients

We have a flowering plum tree in the far corner of our back yard, which foretells the change of seasons. It has dropped its leaves already so we are expecting an early Fall. The entire state is praying for rain and we are now looking at water restrictions. Hopefully, we will be able to get through it with our landscaping intact but it will definitely be a challenge.

My lab numbers were so good that the endocrinologist gave me a year before I have to see him again. I am stable. He also said to drop in if I am not feeling well. Love that. Afterwards, mom and I went to the Dutch bakery on the Avenue and had a lovely lunch and talked non-stop.

I am going to push myself to do some major trimming in the gardens today after a quick run into town. There might even be time for a nap before we drive into the city to a fancy dinner in our fancy clothes with fancy people. It is going to be another late night.

Below is an email from the Coalition for Pulmonary Fibrosis regarding paid interviews of IPF patients with a drug company.

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In an effort to keep you informed, the Coalition for Pulmonary Fibrosis is notifying you of an opportunity to have a paid interview with a medical market research company regarding Pulmonary Fibrosis (PF).  There are in-person interview opportunities in San Francisco on July 30 and in Los Angeles on August 4 - you'll be paid for transportation costs and an additional $100 for your time.  Details are below in this email.
If you are a patient or a caregiver, please read the details below and reply directly to the company (Schlesinger Associates) if you are interested in this opportunity (email or call 1.888.282.9300, extension 209).
The Coalition for Pulmonary Fibrosis
Schlesinger Associates, a national market research firm, is looking for patients and caregivers of patients with Idiopathic Pulmonary Fibrosis for a paid medical research interview.  This interviews will be taking place in San Francisco on July 30 and Los Angeles on August 4.  
The individual interview will be one hour, and for your time, you will paid $100, plus transportation costs.  Each interview is done one-on-one and strictly confidential; no sales are ever involved.  
If you or someone you know might be interested in participating, please feel free to pass on the company contact's information:  Ryan Wolfson can be reached by email or phone and 1.888.282.9300, extension 209.
Coalition for Pulmonary Fibrosis
10866 W. Washington Blvd. #343
Culver City, CA 90232
(888) 222-8541

Friday, July 25, 2014

Feeling Better

It is unusually hot here in the Bay Area. Today, it is expected to be 91 at mom's, 97 at Michael's work and a lovely 77 here on the coast. Traffic on the weekend is going to be horrific. We are meeting a foodie friend and his wife from Michael's work on Saturday evening at a major restaurant in the city. We have 8:45 reservations but with the traffic, we will give ourselves two hours to get there on time.

I climbed back into bed yesterday morning and slept until 11:00. I really needed the sleep. After cleaning up, pulling on some shorts and a t-shirt, I spent some time reading while on the garden swing. It was so beautifully warm and quiet and peaceful. Afterwards, I settled into my chair and slept another hour.

Michael came home completely spent from the heat. I had a dinner of roasted chicken, fingerling potatoes and corn on the cob waiting for him. He made lots of yummy sounds. We both were awake around 3AM because it was so warm, even with a fan blowing on us.

This morning, I am seeing Dr. M., my endocrinologist. Another long drive into the city. Afterwards, mom and I will spend the day together.

Thursday, July 24, 2014

Two Down, One to Go

It is amazing how we don't wander out of our routines for months on end then suddenly...BOOM! No routine! If I don't get some sleep soon, I will get sick! Crawling through the day yesterday, I added a fun hour with Natalie and Winnie after my run into the city for the two appointments. I remember driving home and falling into my chair. I think I passed out from lack of sleep! After an hour, I pulled it all together again, we drove back into the city and had a great dinner with British Don. German food. Sauerkraut. Yummy. Then, to bed. Warm. Cozy. Passed out.

I have cancelled everything today and will go back to bed this morning. I need a few more hours of sleep. The grass is a foot long and the gardens are calling to me. Maybe I will feel awake enough to get out there this afternoon. Tomorrow, I will drive back into the city for yet another doctor's appointment.

The two appointments yesterday were with the nutritionist and Dr. K., my lung doctor.

My weight? Fine.

Dr. K.? Busy. All was well so we will meet again in six months, unless I get sick. She did confirm that the scheduling for my liver transjugular biopsy was in process. Did I mention that it requires an overnight stay at the hospital? Thank goodness it does NOT require general anesthesia.

Tomorrow is a visit with Dr. M, my endocrinologist to check on my Hashimoto's Disease (thyroid) and my cholesterol. A quick visit. I will then meet mom for lunch and conversation.

All doctors taken care of for a few months. I hope!

Wednesday, July 23, 2014

Need Some ZZZZZZs

I am visiting with two people today: the nutritionist, Mr. B. and my lung doctor, Dr. K. Lovely people but their offices are on two different campuses. Lots of intense city diving for me today! We also are going back to the city tonight to have a small dinner with British Don, who has just returned from Taiwan.

The one, small, minor problem? I am dragging. I blame it all on Extreme Weight Loss on ABC last night. Damn. Got sucked into it again. Then in the every morning hours, I was a little cold, grabbed a blanket but couldn't go back to sleep so I only have six hours of sleep under my belt. I am a 9-hour a night girl. Today is going to be brutal.

We finally heard from our son who is home, expect for the weekends when he will be flying to festivals. It was a long tour in Europe. He loves the group with whom he is working, didn't get sick on tour, back to working out with his personal trainer, has agreed to go to LA with us to see Michael's mom (he hasn't seen her in probably eight years) and driving down for a visit to see us in September. All good news.

Tuesday, July 22, 2014

Recipes for the Week

Tired. Recovering from the weekend. It seems to take longer to get my feet back under me after changes to my schedule, especially a short trip. I was out the door by 8AM for a good workout at the other rehab then spent the day with mom. We talked non-stopped. After a couple of stops for groceries, I was finally home, settled and taking a deep, relaxing breath at 4PM before making a breakfast casserole and starting dinner.

Below is my food for the week with recipes: non-starchy vegetables with 3-4 ounces of protein. Prednisone therapy makes processing sugars very difficult, thus massive weight gain. Sugar is in milk, fruit, yogurt, grains, starchy get the idea. Cheese? Fine, just watch the calories. Sour cream? No problem.

Breakfast and Lunch:
Low Carb Mexican Beef and Spinach Casserole - here  I use low fat cream cheese and non-fat sour cream.

Scrambled Eggs wrapped in a La Tortilla Low Carb tortilla

Peanut Butter on a two Wasa Rye crackers

Sirloin Tips with Vegetables - here

Pan-Seared Fish with Shiitake Mushrooms - here

Pork Chops with Walnuts and Blue Cheese (with a side of cole slaw) - See below

Roasted Chicken (with a fresh vegetable) - here  I don't use the Hoisin part of the recipe but add just a bit of a low carb BBQ sauce at the end.

Pork Chop with Walnuts and Blue Cheese
4 pork chops - 4 ounces each
1/4 cup chopped walnuts
2 ounces blue cheese (about 1/2 cup)
2 green onions, chopped
1/4 t. pepper

Heat skillet over high heat, add the nuts and toss until they almost begin to brown, about three minutes. Remove from the pan. Cook the pork chops. Add the rest of the ingredients to the walnuts and mix well. Spoon over the hot, cooked chops. Serves 4.

Monday, July 21, 2014

LA Road Trip Wrap-Up

We are home. Thanks for being patient.

Michael with Aunt Patty
It was a wonderful trip but so much colder than expected. I wore a jacket during some of the family reunion. At Anna and Doug's in the desert, it was overcast and cool! No air conditioning needed! In fact, when we got home yesterday, it was the first sun we had seen all weekend and it was muggy! We slept with the windows opened and just a sheet to keep us comfortable. What a reverse of fortunes!

Michael with Cousin Shannon
The trip was to surprise Mary for her 81st birthday and to attend a family reunion. Done and done.  When we walked in the door, I was beginning to rethink the surprise thing. She was so shocked, I was worried we were going to have a surprise visit with the paramedics, too! Utter shock! We chatted a bit then piled into the car for the reunion.

Michael with cousins Shannon and
I was able to spend some time with Michael's cousin Shannon, who hauled Michael to a rehearsal where we met forty-three years ago. I was 17-years old! A baby! But, I knew everything! HA!

We also spent time with his other cousins, aunts and an uncle. We had not seen him in over three decades. Afterwards, Mary directed us about an Irish Pub nearby, we enjoyed Corned Beef and Cabbage and Pot Pies and celebrated her birthday.

Michael's sister Anna and Doug
We drove home Sunday through the newish wine country near Paso Robles, had breakfast for lunch at a sweet little place, Michael had Danish pancakes and sausages before our trek north on Highway 101 to Highway 1 to our own sweet town and home. It was only three days away but it felt like forever. It was good to be home.

Today: WORKOUT! Afterwards, there will be a visit with the butchers, mom, Trader Joe's and Safeway followed by a frenzy of cooking for this week's breakfasts and tonight's dinner. A long day. Actually, a long week. I have three appointments this week: lung, weight and thyroid. Fun, fun and fun.

PS Anna and Doug live in a house with stairs and it became very clear that I really could never live in a house with stairs. Often, I would forget something and have to go up then down. Finally, Michael would run up the stairs for me. It was a good lessons as I always thought that I could have a master bedroom upstairs because I would only go up them a couple of times a day. HA! How wrong I was. Lesson learned.

Friday, July 18, 2014

Pirfenidone? Done. READ THIS IF YOU HAVE IPF

It is now official. There is now a treatment available for people with Idiopathic Pulmonary Fibrosis. Here is yesterday's press release.

InterMune has added a news release to its Investor Relations website.
Title: InterMune Receives FDA Breakthough Therapy Designation For Pirfenidone, An Investigational Treatment For IPF

Date(s): 7/17/14 12:39 PM

For a complete listing of our news releases, please click here

BRISBANE, Calif., July 17, 2014 /PRNewswire/ -- InterMune, Inc. (Nasdaq: ITMN) today announced that pirfenidone has been granted Breakthrough Therapy Designation from the U.S. Food and Drug Administration (FDA).  This designation is reserved for drugs that are intended to treat a serious or life threatening disease or condition and preliminary clinical evidence indicates that the drug may demonstrate substantial improvement over existing therapies on one or more clinically significant endpoints.  As described in the FDA Fact Sheet: Breakthrough Therapies, "If a drug is designated as breakthrough therapy, FDA will expedite the development and review of such drug." In May, InterMune resubmitted its New Drug Application (NDA) for pirfenidone and noted a target FDA review of six months under the Prescription Drug User Fee Act.  Pirfenidone is an investigational treatment for adult patients with idiopathic pulmonary fibrosis (IPF).
InterMune logo.
"The Breakthrough Therapy Designation underscores the significant need to help patients with this irreversible and ultimately fatal disease, particularly as no FDA-approved therapies are currently available," said Dan Welch, Chairman, Chief Executive Officer and President of InterMune.  "We are pleased that the FDA recognized the importance of pirfenidone as a potential new therapy for IPF, a disease with great unmet medical need."
About Pirfenidone Pirfenidone is an orally active, anti-fibrotic agent 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.  Pirfenidone 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 (EC) granted marketing authorization for Esbriet® (pirfenidone) for the treatment of adults with mild to moderate IPF.  The approval authorized marketing of Esbriet in all 28 EU member states.  Esbriet has since been approved for marketing in Norway and Iceland. In 2011, InterMune launched commercial sales of pirfenidone in Germany under the trade name Esbriet, and Esbriet is now also commercially available in various European countries, including key markets such as France, Italy and the UK.
On October 1, 2012, Health Canada approved Esbriet for the treatment of mild to moderate IPF in adult patients.  Health Canada designated Esbriet for Priority Review and completed the accelerated review according to target guidelines of 180 days.  InterMune launched Esbriet in Canada in January 2013.
Pirfenidone has been marketed as Pirespa® since 2008 in Japan and since 2012 in South Korea by Shionogi & Co. Ltd.  Under different trade names, pirfenidone is also approved for the treatment of IPF in China, India, Argentina and Mexico.
Pirfenidone is not approved for sale in the United States.
About IPFIdiopathic pulmonary fibrosis (IPF) is an irreversible and ultimately fatal disease characterized by progressive loss of lung function due to fibrosis (scarring) in the lungs, which hinders the ability of lungs to absorb oxygen.  IPF inevitably causes shortness of breath, and a deterioration in lung function and exercise tolerance.  IPF patients follow different and unpredictable clinical courses and it is not possible to predict if a patient will progress slowly or rapidly, or when the rate of decline may change.  Periods of transient clinical stability in IPF, when they occur, inevitably give way to continued disease progression.  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 malignancies, including breast, ovarian and colorectal cancers.  IPF typically occurs in patients over the age of 45, and tends to affect slightly more men than women.
About InterMuneInterMune 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, irreversible, unpredictable and ultimately fatal lung disease. Pirfenidone is approved for marketing by InterMune in the EU and Canada under the trade name Esbriet®.  Pirfenidone is not approved for sale in the United States.  InterMune's research programs are focused on the discovery of targeted, small-molecule therapeutics and biomarkers to treat and monitor serious pulmonary and fibrotic diseases.  For additional information about InterMune and its R&D pipeline, please visit
Forward-Looking StatementsThis 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 potential for pirfenidone to be approved as a medicine to IPF patients in the United States and the anticipated FDA review period of its NDA for pirfenidone.  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 24, 2014 (the "Form 10-K") 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, in particular in connection with our resubmission of a Class 2 NDA with the FDA seeking approval of pirfenidone or other government regulation generally; (iv) risks related to our ability to successfully launch and commercialize pirfenidone in the United States, if approved by the FDA and (v) 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 and InterMune's other periodic reports filed with the SEC, all of which are available via
InterMune's web site at
Logo -
SOURCE InterMune, Inc.
Investors: Jim Goff, InterMune, Inc., 415-466-2228,

Thursday, July 17, 2014

Liver Appointment

All went well yesterday except I think the new yoga class instructor was trying to kill us. Really. I was dripping in sweat. My hair was soaked. I crawled out of there, got our travel money from the bank then stayed home the rest of the day. The fun continued. It is supposed to be a bit wet this morning so I cut the grass and did the rest of the yard work yesterday afternoon. Yoga + Yard work = One sweaty, tired person. On the plus side, I slept all night.

We are still waiting for the electrician to swing by to look at installing new LED lights in our bathroom. He emailed that he was going to try to swing by yesterday afternoon...nope. Maybe today?!?

Off I go to the liver clinic appointment during rush hour this morning. Yikes. When I get back home, the housekeepers will have been here so the packing for the trip with begin. It will be a day of trying to remember what I am forgetting to pack!

Just itching to get on the road again. There is a very cool place right on Highway 5 called Harris Ranch. Fantastic food. Great place. And, it is half way to LA. It is our breakfast stop. Michael orders their huge "Ranch hand" breakfast then I eat some of the eggs and part of his ham steak. Since we are going to Corona, near Riverside, we are going to drive along the mountains through Pasadena then down through the Chino Hills to avoid the horrible Riverside Freeway. It is so pretty through the hills and really not a bad drive, especially during the time we will be in that area. Hopefully, we will arrive to Anna and Doug's between 1 and 2PM.

I will report back about the reaction of the liver doctor to the change in my decision about the liver biopsy. He will be pleased. We also will review my labs, which appeared to be improved. Again, this problem is caused by ten years of prednisone. At least I am still alive.

Wednesday, July 16, 2014

Checking off the List

Little check marks are appearing on my list of things to do before we leave for a short road trip to Southern California. SoCal. Some of the other chores planned for today are picking up the house for the housekeepers tomorrow, making a fantastic dinner, getting travel cash from the bank and doing the laundry. But first, there is my yoga class this morning followed by a nice walk along the ocean this afternoon. Right now, it is foggy, wet and humid outside. We NEVER have rain during the summer but there is actually enough to be measured. Rather shocking.

Today is my niece Shelley's birthday. She has had a rough year but out of the darkness came Russ. He is a true gem or as she says, "He is the cheese to my macaroni." She also confirmed my belief that when a relationship is good, it is so very easy. If it is not right and a person is always struggling to make it work, it is so very hard. She said that she never felt like this in her whole life. It is sad that some people never feel it. It is all so very clear when it is a deep love. Her future looks bright and shiny.

I am breathing so well, the numbers in rehab yesterday were excellent. While we are in LA, there will be a potluck family reunion in a park. Michael's cousin, who brought him into the folk mass group I was running, is going to be there. We haven't seen him in decades. But, with all potlucks, I will not be eating the food. I always worry that someone is fighting a cold then licking a spoon or sneezing over the food or not making it in a clean environment. Any of that could make me very sick.

The other issue that is causing me concern is the heat. It is going to be very hot. We are packing shorts and light shirts and grateful that Anna and Doug have air conditioning in their house. We just are not used to high temperatures and I know that sleeping will be difficult. Melatonin! That will help!

Tuesday, July 15, 2014

Thoughts on Liver Clinic Appointment

After a good night's sleep, I am feeling so much better this morning and ready to face the next few very busy days. Before rehab class this morning, I need another run to Bev Mo for a bottle of Buffalo Trace and a special bottle of Blanton bourbon as a present to Anna's husband. Doug will appreciate them so much more than a bottle of champagne! I found out yesterday that he actually retired from his job as a public defender just last Thursday! I thought it was formally going to happen around his birthday next month. We must celebrate that milestone while we are visiting them in LA this weekend.

Mom and I arrived on time to her early morning eye appointment. There was a nasty accident of the freeway and somehow we were able to get there though many others did not. The waiting room was empty. We were in and out within thirty-minutes. A record. We did a run to See's Candy - another present for Doug - before having a fantastic lunch at the Elephant Bar overlooking the Bay and the runways of the airport. It was so beautiful and such an unexpectedly delicious lunch. Mom, who watches every bite she eats, ordered the crispy, wok cooked sesame teriyaki beef with grilled veggies and rice. She couldn't stop eating it but as it was so much food, she brought over half home with her. It was so much fun watching her enjoy herself. I had an appetizer of minced chicken lettuce wraps.

Before I can really focus on the trip beginning Friday morning, my mind wanders to Thursday's liver appointment. I still worry that my liver may develop serious non-alcoholic cirrhosis and cause me to be denied a lung transplant. It is the result of ten years of prednisone. With Dr. K.'s encouragement, I am going to relent and have the transjugular biopsy to measure the pressure of the liver and she wants something else checked out while there are in there. I will let the liver doctor know to contact her to arrange it all. A liver problem is something I never expected to have to deal with. It is all totally out of my control, as it the lung disease. But, the only thing I do have control of in my life is exercise and to continue to watch what I eat and to stay positive.

Monday, July 14, 2014

Losing My Mind!

I now have proof I am losing my mind. Mom and I always joke that we need an assistant to follow behind us to remind us of all the things we have forgotten. Yesterday, Michael and I had a plan. We drove over the pass. All was well but I had a nagging feeling that I had forgotten something. After dropping Michael off, I headed to the other rehab to workout and it was only when I was pulling into the driveway that I realized I had forgotten my oxygen. Nuts! I had to do a slower rate on the machines but I added time. It was irritating as I had been looking forward to a hard workout.

Since we were planning to have a nice lunch, I walked out to the car, grabbed my black shoes from the back seat to change into only to discover that I HAD BROUGHT TWO DIFFERENT BLACK SHOES! There was no way I could go to lunch wearing my running shoes sooooooo, I drove to DSW and found the cutest pair of flats on sale and with my discount, they were only $12.47. I will be wearing them during our road trip to LA this coming weekend!

Michael laughed when I told him all my trials and we enjoyed a fantastic lunch at the Dutch Bakery on the Avenue. I had fresh turkey slices on top of lettuce with house-pickled cucumbers, pickled beets, tomato slices, slivered carrots and a bit of fresh cranberries. Delicious. Michael had Eggs Benedict. We were not hungry for dinner so I had two Wasa Rye crackers with a bit of peanut butter and I made Michael a grilled cheese sandwich and tater tots covered with leftover chili. He was very happy. And full!

We are counting down the days before we leave and it will be a really busy week ahead. Today, mom has an appointment for the shot in her eye then we will go to lunch. It will be the last time I will see her until next Monday.

Sunday, July 13, 2014

Grateful for the Day

Within minutes, I will be making a special breakfast for us - an egg tart with veggies and goat cheese. After breakfast, we are going over the pass: me to workout at the other rehab, Michael to do a bit on a project. We are planning to connect with British Don, who just got back from Taiwan followed by an early dinner at a nice restaurant this evening. A day together. It has been a busy and exhausting week with just not enough sleep. Finally, as of this morning, I feel like I am fully awake and functioning.

I realized while working in the yards yesterday that I have been breathing really well. And feeling well. Next week, I am seeing the liver doctor and the following week, I have appointments with the lung doctor, endocrinologist and nutritionist. It takes a lot of doctors to keep this ship afloat.

Grateful. I am so grateful to still be able to go and do whatever I wish. There was a time when that was not possible. I used to dream about being able to take a walk. I was envious of a woman walking along the highway and so wishing that one day, I could be taking a walk. There was only so much I could do in a day.

As we run around today, that will be in the back of my mind. I will look around, breathe deeper and say a small prayer of thanks. I so appreciate every moment that I am functioning as I know that could change at any moment.

Saturday, July 12, 2014

Attention: IPF Patients - Share Your Experiences with MedQuery

Below is an opportunity to share what it is like to live with IPF and get paid for it! Please read the below information about MedQuery and the interview contact information.

email header

In an effort to keep you informed, the Coalition for Pulmonary Fibrosis is notifying you of an opportunity to have a paid interview with a medical recruiting company regarding Pulmonary Fibrosis (PF).  There are opportunities for phone interviews(so it doesn't matter where you live in the U.S.) and there are in-person interview opportunities in Chicago, IL.  Details are below in this email.
If you are a patient or a caregiver, please read the details below and reply directly to the company (MedQuery) if you are interested in this opportunity (their contact information is in the information below).
The Coalition for Pulmonary Fibrosis
The company holding the interviews is MedQuery, a medical recruiting company (to learn more, visit their website at
They are looking for patients and caregivers for interviews about their experience with Pulmonary Fibrosis and their perspectives.  
The interview dates and descriptions of design are listed below as well as the descriptions of the types of patients and caregivers they are seeking to interview.  If you are interested in any of the opportunities, please contact the company directly (please don't contact the CPF):  Lindsey Marlow, (312) 698-4394.
In-person Interviews (Chicago):
Tuesday, July 22nd – Various Times (looking for patients and caregivers)
Incentive: $150
Length of Interview- 60 Minutes

Telephone Interviews (National- USA only) July 18th, 24th, 25th & 28th – Various Times
(looking for patients and caregivers)
Incentive: $100
Length of Interview- 60 minutes
Description of Patients Needed:
Diagnosed with IPF
Have been diagnosed within the past 2 years Aged 50-80 years Treated or seen by a Pulmonologist
Description of Caregivers Needed:
Caregiver to patient of IPF (non-paid)
Patient diagnosed within past 2 years
Patient treated or seen by Pulmonologist; Lives with the patient they care for

Interested?  Call:
Lindsey Marlow
(312) 698-4394
Coalition for Pulmonary Fibrosis
10866 W. Washington Blvd. #343
Culver City, CA 90232
(888) 222-8541

Friday, July 11, 2014

Changes To Live with Chronic Disease

I have recently been reminded of the all the changes we made to our lives in order to live with this chronic disease. We bought a higher bed (easier to make), hepa filters for the house, changed my diet, closed our circle of friends, educated myself about the disease and so much more. 

It was always trying to find the balance between pushing myself but not over doing anything. Prednisone required me to adjust our social life. I hated appearing at parties with extra weight and a huge round moonface. And the sweat. Oh, the sweat. We also worried about being around a lot of people because I also had no immune system. Still don't. Still worry. No movies or live concerts or anyplace where I would be surrounded by people. Coughing, ill, contagious people. I also hated being short of breath just doing simple tasks. It was embarrassing. I didn't feel like myself. I lost the feeling of being a woman especially at night when I had to sleep on a wedge and attached to the long oxygen hose. I never felt attractive. 

I felt ill. 

What changed? Pulmonary rehab. It was my social and emotional support group as well as kicking my butt. The more I worked out, the less I would sweat. I suddenly could do simple tasks without being short of breath. I began to feel more like myself again. I no longer felt "sick." Michael and I began to venture out and tried to wrap the disease into our lives instead of letting it drive our lives. He kept reassuring me that I was still me. He loved me. We would do this final walk of my life together. 

Little did either of us know that ten years later, I am still here. I am in the best shape of my adult life. I am fit and ready for a lung transplant if I experience the sudden crash. I continue to astound my doctors. We adjusted our lives for the disease then lived it as normally as possible.

Thursday, July 10, 2014

Tell the FDA

Another reminder from the Coalition for Pulmonary Fibrosis to share your experience with the FDA. Check it out:

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Have you ever thought your experience with Pulmonary Fibrosis (PF) could help researchers and efforts to find treatments?  You're right.
Your insight is important in making progress in the disease efforts and this is your chance to help change things! Please go to this link now to answer an important survey and share your experience as a patient, caregiver, or family member of a patient past or present:
Sharing information from your perspective will help the Coalition for Pulmonary Fibrosis (CPF) inform the Food and Drug Administration (FDA) on what's reallyimportant to patients and families as they review drugs coming to market for PF (and they are reviewing two drugs now: InterMune's pirfenidone and Boehringer Ingelheim's nintedanib).  
Hurry!  The Survey Results will be Provided to the FDA prior to the Workshop in Sept. 26 but we need your input NOW!
We'll compile your input into a report to the FDA so that they are well-informed about what patients want and need.  We'll provide the report to FDA prior to the FDA Idiopathic Pulmonary Fibrosis Workshop to be held on September 26th. So, it's important to get your perspective now! Please answer the survey:
About the FDA IPF Workshop
This important FDA workshop (part of the FDA's Patient Focused Drug Development Program) is a result of the FDA’s commitment to gaining patient perspective on 20 disease areas. The  search for treatments and a cure depend on understanding what types of risks and benefits are meaningful to patients as drugs are researched and reviewed. 
By the way, if you want to participate in the workshop either in person in Silver Spring, MD at the FDA offices or online, visit:  (Space is limited for both the in-person meeting and the online webcast, so register as soon as possible at the lnk above).
Background on the Survey
The CPF announced this special partnership with Genetic Alliance that will bring the experiences and needs of PF patients directly to the FDA.   Patients and caregivers are encouraged to take advantage of this unprecedented opportunity by responding to the PF questionnaire now available as a link on the CPF website at
About the Technology
Genetic Alliance and the Pharmaceutical Research and Manufacturers of America (PhRMA) developed the initiative to explore the use of a technology-enabled, crowd-sourcing approach to patient engagement as a complement to ongoing patient-focused drug development efforts under the Prescription Drug User Fee Act (PDUFA V).  The CPF is delighted to have been selected by Genetic Alliance to partner in this vital gathering of information about patient experiences.
Mishka Michon, CEO, Coalition for Pulmonary Fibrosis
Share Your Experiences!  Click Here
Coalition for Pulmonary Fibrosis
10866 W. Washington Blvd. #343
Culver City, CA 90232
(888) 222-8541

Wednesday, July 9, 2014

Liver Tests

My poor liver. It has been processing prednisone for almost 10 years. It is tired. This morning, I will be driving into the city for blood tests in anticipation of my appointment with the liver doctor next week. During my last visit with my lung doctor, she reviewed the report of the liver sonogram I had earlier that day. It was no longer swollen. I mentioned that I was very nervous about having a liver biopsy via my jugular vein. She responded that it was very safe and that, in fact, she would also like to have a couple things tested while they were in there. Great. I am still nervous about it but next week, I will probably relent and schedule the biopsy.

I got all of my work done yesterday but did not go for a walk. My body is just itching to move. After the run into the city, I am going to park up at the harbor and walk 15 minutes longer than ever just to see if I can. A challenge. I guess I was inspired by last night's Extreme Weight Loss with Chris Powell. If you have never seen this ABC program, it follows Chris working with a person for an entire year. The goal is always a weight loss of 45-50%, which will allow skin removal surgery. The guy last night lost 201 pounds in a year. Remarkable.

We are leaving for LA in nine days. The drive is down the most boring highway in the country - Interstate Highway 5 - but it makes for a quick trip. When we drive down for a museum run, we leave at 5AM and arrive by noon. As it is so fast, we always wonder way we don't do it more often. We are taking the Porsche for the first time and are looking forward to being together again.

Mary's sister Patty throws a family reunion every year, though only her family attends. It is an excuse for a party! This year, Anna asked if we could come down as she wanted to attend. A cousin from Las Vegas is going to be there and she wants to see him. It is also Mary's birthday. So, we have decided to surprise her. We need to bring baked pies with us for Mary's birthday party along with presents of lotions, coffee and gin for her; scotch for her sister; and hand-milled soap, See's Candy, and something else for Anna and Doug. It has been over 100 degrees there and we are going to be miserable! We are just not used to that kind of heat. I have ordered an oxygen concentrator to be delivered to their home and with that heat, I am really going to need it.

Tuesday, July 8, 2014

Day Off?!?

I am forced to stay home today. The TV table we bought from IKEA is being delivered between 10-2. It is nice not to have to rush out the door and I can be just a bit lazy. Well, maybe not lazy as I have plans.

Yesterday, Michael thought we had lots of leftover cake not knowing I had sent all but one piece home with Rick and Natalie. He asked that I drive it over the pass to his work so he could have others try it. I promised him that I would make a whole new cake today, while I am forced to stay home. He will share an entire cake with the office at his work. That will make them all very, very happy.

List: make cake

I noticed that the cabinets in the kitchen could use a good cleaning on the outsides and organizing on the insides. My refrigerator is also in need of a cleaning and organizing.

List: clean and organize the kitchen

It is so important that Michael has protein as part of his breakfast. He ate the final pieces of pepper bacon with cottage cheese this morning so I need to cook some fantastic Chicken Apple breakfast sausages. A special treat.

List: cook chicken sausage for Michael's breakfast

I have been wanting to organize the shoes in my closet, go through the clothes then wash and iron anything that looks worn. While in the bedroom, I will also reorganize Michael's closet though it is in pretty good shape.

List:  bedroom closets

Finally, I have been avoiding the cabinets in our bathroom. There is so much under the sinks that I just have not wanted to deal with it all. Time to face it as I have the time today!

List:  bathroom cabinets

This should keep me busy until IKEA arrives on my doorstep. After all my chores, I will put on my running shoes and hit the coastal trail as I will be missing my rehab class. My day off? I should be exhausted at the end of the day!!

Monday, July 7, 2014

Party Recap and Food for the Week

We had a fantastic time last night with Rick, Natalie and their college-bound daughter, Melanie. The help-yourself-buffet was a hit:  Open-Faced Ham and Cheese Baked Sandwiches with German mustard and onions on sour dough French bread, Pancetta and Porcini Potato Gratin, Chevre Spread, Hot Artichoke Dip, Sesame Chicken with Honey Dip, cheese platter with Marcona almonds and Quince, Chips and Dips and a Praline Ganache covered Chocolate Cake.

Without knowing that Melanie was a recent Elvis fan, Michael had our compilation CD we bought at Graceland on shuffle with four other CDs. That too was a major hit! Thankfully, they took most of the leftovers home with them but I still have enough here to share with mom this morning along with some plums from the yard. It is beautifully warm, I am heading to the other rehab followed by a visit with the butchers and, after lunch, Trader Joe's.

Below is food for the week for those of us on Prednisone! Low carb - only protein and non-starchy vegetables. It is amazing all the recipes available with just those parameters. Here we go:

Eggs in a low carb La Tortilla wrap
Peanut Butter of Rye Wasa crackers - 2
Sun-dried Tomato, Goat Cheese and Fresh Basil - here

Pizza - I use half of the cheese and a non-fat cheddar with only 1 egg - here
Skinny Buffalo Chicken Strips - here

Texas Chili - here
Popeye's Special - here
Houston Chicken with Fried Cabbage and Onions - here and here
Chicken Shawarma - I cut the oil to 2T. here

Enjoy Monday!

Sunday, July 6, 2014

Sick? Who Me?

Sometimes I forget I am sick. It may be that I have adjusted for the disease and it has become part of the normal rhythm of my life. But last night, I reflected on the day and realized that all the rehab and all the walks and all the yoga along with the diet have paid off in ways I had not anticipated. I really can do what I need to do. Yes, I was tired and I probably did a bit too much, but I could do it. All of it.

I won't go through the litany of it all but it included gardening, laundry, ironing, food shopping followed up by five hours of cooking for today's party. I fell into bed feeling like I had accomplished a lot in one day. So very satisfying.

Today we are celebrating the birthdays of our neighbors, Rick and Natalie. There is still much to be done but I am going to grab my new shoes and hit the trail along the ocean this morning. Then, let the cooking begin (and finish!).

Happy Sunday.

Saturday, July 5, 2014

New Lung Device

Thought you might enjoy reading this article in Thursday's SF Chronicle:

Unapproved device buys time for new pair of lungs

Updated 2:44 pm, Thursday, July 3, 2014
  • This handout photo provide by the University of Pittsburgh Medical Center, taken March 5, 2014, shows  Dr. Christian Bermudez of the University of Pittsburgh Medical Center checking patient Jon Sacker, who was being treated with an experimental device called the Hemolung that acts like dialysis for lungs. Doctors credit the experiment with buying Sacker time to improve enough to undergo a lifesaving double lung transplant later that month. Photo: University Of Pittsburgh Medical Center, AP / University of Pittsburgh Medical Center
    This handout photo provide by the University of Pittsburgh Medical Center, taken March 5, 2014, shows Dr. Christian Bermudez of the University of Pittsburgh Medical Center checking patient Jon Sacker, who was being treated with an experimental device called the Hemolung that acts like dialysis for lungs. Doctors credit the experiment with buying Sacker time to improve enough to undergo a lifesaving double lung transplant later that month. Photo: University Of Pittsburgh Medical Center, AP

WASHINGTON (AP) — Jon Sacker was near death, too sick for doctors to attempt the double lung transplant he so desperately needed. His only chance: An experimental machine that essentially works like dialysis for the lungs.
But the device has not been approved by the Food and Drug Administration and there were none in the country. It would take an overnight race into Canada to retrieve a Hemolung.
Sacker rapidly improved as the device cleansed his blood of carbon dioxide — so much so that in mid-March, 20 days later, he got a transplant after all.
"That machine is a lifesaver," Sacker said from the University of Pittsburgh Medical Center.
Sacker's struggle highlights a critical void: There is no fully functioning artificial lung to buy time for someone awaiting a transplant, like patients who need a new heart can stay alive with an implanted heart pump or those with failing kidneys can turn to dialysis.
"It seems like it should be possible for the lung as well," said Dr. Andrea Harabin of the National Institutes of Health.
NIH-funded researchers are working to develop wearable "respiratory assist devices" that could do the lungs' two jobs — supplying oxygen and getting rid of carbon dioxide — without tethering patients to a bulky bedside machine.
It has proven challenging.
"The lung is an amazing organ for gas exchange. It's not so easy to develop a mechanical device that can essentially replace the function of a lung," said bioengineer William Federspiel of Pitt's McGowan Institute for Regenerative Medicine, who helped invent the bedside Hemolung and is working on these next-step devices.
So when Sacker needed an emergency fix, Dr. Christian Bermudez, UPMC's chief of cardiothoracic transplants, gambled on the unapproved Hemolung. "We had no other options," he said.
Cystic fibrosis destroyed Sacker's own lungs. The Moore, Oklahoma, man received his first double lung transplant in 2012. He thrived until a severe infection last fall damaged his new lungs, spurring rejection. By February, he needed another transplant.
The odds were long. Donated lungs are in such short supply that only 1,923 transplants were performed last year, just 80 of them repeats, according to the United Network for Organ Sharing.
Still, the Pittsburgh hospital, known for tackling tough cases, agreed to try — only to have Sacker, 33, arrive too debilitated for an operation. A ventilator was providing adequate oxygen. But carbon dioxide had built to toxic levels in his body.
When a ventilator isn't enough, today's recourse is a decades-old technology so difficult that only certain hospitals, including Pittsburgh, offer it. Called ECMO, it rests the lungs by draining blood from the body, oxygenating it and removing carbon dioxide, and then returning it. Sacker was too sick to try.
"I didn't see any other alternative other than withdrawing support from this young man," Bermudez said.
Then he remembered the Hemolung, invented by Pittsburgh engineering colleagues as an alternative to ECMO. It was designed to treat patients with a different lung disease, called COPD, during crises when their stiffened lungs retain too much carbon dioxide, Federspiel said.
The Hemolung recently was approved in Europe and Canada; its maker is planning the stricter U.S. testing required by FDA. For Sacker to become the first U.S. Hemolung patient, hospital safety officials would have to agree and notify FDA.
"We had actually just almost decided to turn the ventilator off, because we were putting him through suffering," Sacker's wife, Sallie, recalled. Then the phone rang: The experiment was on.
But Pittsburgh-based ALung Technologies Inc. couldn't get a device shipped for a few days. Doctors feared Sacker wouldn't live that long. Late at night, ALung CEO Peter DeComo tracked down a device in Toronto, and started driving. It took some explaining to get the unapproved medical device past U.S. border officials. But the next day, Sacker was hooked up, and quickly improved.
Federspiel, also an ALung co-founder, said researchers' ultimate goal is a fully functioning, portable artificial lung.
Varieties under development consist of small bundles of hollow, permeable fibers. As blood pumps over the fibers, oxygen flows outside to the blood and carbon dioxide returns, explained Dr. Bartley Griffith of the University of Maryland. He has reported success in sheep, and hopes to begin the first human tests within three years.
The idea: Small tubes would connect the fiber device, worn around the waist, to blood vessels, so that patients could move around, keeping up their muscle strength instead of being restricted to bed.
There's "at the least the inkling that we can dream of sending somebody home with an artificial lung," Griffith said.
A bridge to transplant isn't the only need, said Harabin of NIH's National Heart, Lung and Blood Institute, which is funding work by Griffith, Federspiel and others.
Thousands each year suffer acute lung failure from trauma or disease that hits too suddenly to even consider transplant. Researchers like Griffith want to test if these experimental technologies could offer them a better chance to heal than ventilators, which can further damage lungs.
Back in Pittsburgh, Sacker is slowly gaining strength with his second set of transplanted lungs. He doesn't remember the fight for his life; he was sedated through it. But his wife has told him how touch and go it was.
"You get a call at the last second about a device that has never been used here in the United States — that's a miracle," he said.
AP Video Journalist Joseph Frederick contributed to this report.