Living Well with a Bad Diagnosis - Lung Disease

Monday, June 30, 2014

Together All Day

It is funny how quickly plans changed yesterday morning. It was way too beautiful for Michael to do any work over the hill. The coast was clear, sunny and fog-free!

I have been on a mission to fix things around the house. I have made a written list. A long list. On the list was to replace the inlaid LED lights embedded in the pavers along the driveway and the side of the house. Six of the dozen were no longer working. Last Friday, I ran into the contractor who did the driveway years ago as he was installing a driveway around the corner, asked about the lights, mentioned the conversation to Michael and on Saturday, he arrived home with six lights. Yesterday, Michael figured out how to remove the pavers, broken lights, install the new lights and this morning, I was delighted to see everything lit once again. While he was doing this, there were two pavers that had been pushed up because of a birch tree root and he fixed them, too! It took just an hour.

The plumber was here on Friday to replace the water pressure valve and we now have pressure! The water sprinklers have never worked so well! The toilet is flushing so much better! Filling the washing machine is so much faster. Joyous!

At least a decade ago, we had new carpeting installed in the bedrooms and ripped the closet floors down to the sub floor with anticipation of wood flooring. I spoke with Wayne to get on his calendar to finally take care of this. We are book for mid-August.

The paint on our house still looks great except for on the west and south sides where areas are in need of a touch up. We also need the arbor painted. We will be having these areas done after Wayne is here (he needs to remove two posts from the arbor and add support to the other posts).

Yesterday, I emailed an electrician we have used in the past to see if he could help us remove the recessed fluorescent lights in the master bathroom and replace them with LED lights. I hope to hear from him today.

Also on the list was to buy a TV table for the living room. I have been fighting against having a TV in there since we moved here in 1982. I finally have given in. We have a 52" plasma TV in the garage just waiting for us to set it up. Yesterday, we went to IKEA to buy the TV table as he feels it is too heavy to hang on the wall. So, we now have to move a large round leather-topped table to William's room, move the 1920s English bar to the front entry, get rid of the couch in William's room and call DirecTV to help get it all set up. I have a headache thinking about it! Anyway, we went over the hill where it was about 95 degrees and fought our way through the maze of IKEA. We found a perfect TV table, paid the extra bucks to have it delivered (it is an order only item) and it will be here in a week.

From IKEA in hot Palo Alto to our little home on the coast, we took our most favorite ride through horse country, up the very rural mountain to the top then down the western slope, through the huge redwoods, past the ranches to the coastal hills to the ocean and watched the temperatures drop with each mile. It was 73 when we got home. During the drive, the windows were down, a CD of early Elvis was playing while we sang along and we really didn't hit a lot of tourist traffic. A small miracle. After we got home, we sat in the garden and just enjoyed the beautiful weather. It was a nice day of just the two of us hanging out together. And doing chores!

Sunday, June 29, 2014

Lovely Sunday

Beautiful morning sun shining through the front windows made me wander outside. It is already warm and the air smells so fresh and clean. The gardens are cut and watered and the windows are now clean. It was a good day yesterday. Bills were paid, the checkbook was balanced, clothes were washed and ironed, errands were run and the tank in my car was filled to the brim. We also received the great news that Michael's sister's 7-year old granddaughter was going home. The IV drugs for her pneumonia plus her WBC count gave her the get-out-of-hospital-free card. No cancer. Huge sigh of relief. With the day's hard work plus cooking a really great dinner, it was a struggle to stay awake until 8:00!

I love Sundays. It is the only day of the week when I can stop or choose what I want to do for the day. Today, I am going over the pass with Michael where he can finish up a project while I workout at the other rehab before we meet for lunch. The ride home will be a traffic challenge but we will be together.

William is in Denmark today. He has been texting so I know he is well.

Sunday. Reflective. Relaxing. Regenerating.

Saturday, June 28, 2014

Museum Day - #2


Mom and I spent the day with our favorite group of children at the Oakland Museum. It had been completely redone since I was last there and I was stunned. Museums are not the old museums of my past. This one was interactive. The lowest 1st floor featured a Natural History museum of five specific areas of California. It was there where we spent most of our day. We toured each of the five areas looking at the different animals and features. Lots to touch. Lots to feel and smell. There was even an area where the kids made an animated video. At the end, there was a huge room with a movie of different sea creatures moving across two floor-to-ceiling walls. It was hard to get mom and the kids to leave!

We all went to the second floor, which featured a History Museum (we never made it to the third floor, which was the Art Museum). We wound through the very beginnings of California with the Natives to the Spaniards to the Missions to gold being discovered, all the way through to the fun 1960s and 1970s to the current immigration issues. It was really well done and again, totally accessible for children. It was very impressive.

Mom said it was the most walking she had done in a long time and even I began to search out a bench or two towards the end. I must mention once again, that the children were fabulous. Most had been there with Barbara so they had their favorite areas. What made my mom's heart sing was when the youngest child grabbed her hand and said, "You have to come see this!" It was hard to say goodbye to two of the children who are leaving Barbara's daycare. We had known them for three years!

Friday, June 27, 2014

Low and Highs

Well, I think I have discovered why my energy level has been so low since last weekend. At the pulmonary rehab class yesterday, my starting blood pressure was 85/52. That is low. Very low. They took it again while standing and it went up, which allowed me to exercise. Afterwards, I took another nap. I will make sure to mention it to all my doctors at the next appointments.

In other news: Michael's sister Anna has three grandchildren, all adorable. But, her 7-year old only granddaughter, Kloe is the most adorable little girl who was born with the "it" factor. As a toddler, she would sit in a highchair at a restaurant and wave and chat to her minions. With gorgeous red hair, she is so full of goodness and happiness and smiles that I fell in love with her at first sight.

Well, the poor thing had been fighting high fevers, painful headaches and non-stop vomiting. She spent a couple days in the hospital but was sent home. Yesterday, she was readmitted and her parents were arranging for her to be transferred to a children's hospital. No diagnosis was confirmed but scary words like leukemia and brain tumor and meningitis were tossed about. My heart was just breaking with each update. Finally, late last night I received this text message: "Oncology just came by, she really feels that it's just an infection not cancer. She tested positive for mycoplasma pneumonia. So she is getting IV antibiotics now. If the WBC's go up again after treatments then oncology will re-evaluate. Good news!" It has been a tough few days and my fingers will stay crossed for a few more days.

Today? Another field trip with Barbara's daycare children. I am sure mom and I will have a fun day with these marvelous children.

Thursday, June 26, 2014

First Summer Field Trip

Yesterday, we went on our first field trip of the summer to a sweet little museum in a sweet little town. It was about an hour east of me, the same town where Randy lives and where we went for his surprise party a few weeks ago. An old fashioned Main Street. Ice cream stores. Small cafes. Lots of buildings going back to the 1800s. Our friend Barbara arranges an activity everyday of summer vacation for her daycare kids. From aircraft carriers to bee keepers, her field trips are educational, active, diverse and just plain fun.

Mom and I arrived early, of course, hit a Starbucks and prepared to spend a few hours with the most delightful group of children on earth. There were six kids this year. When given a task, they not only did it but they pushed the creativity button to high and once again impressed the docent. From an art project to a leather stamping project, they were totally engaged. We have spent two other summers with them and every docent has remarked to us about how they were all focused and asked such insightful questions.

What we really love about them is that they seem to like each other. I also love that they are kind to my mom and treat her as a friend who they have not seen for a while. We were given hugs as we were leaving yesterday from all but the oldest boys, who shook our hands. Not forced hugs but kind, sweet, true hugs.

We are so looking forward to meeting them once again on Friday when we all go to a much larger museum in a much larger city.

Wednesday, June 25, 2014

Tell the FDA About Your ILD


Want to tell the FDA about how it is to live with an interstitial lung disease? Now is your chance. I received this email from the wonderful folks at the Coalition for Pulmonary Fibrosis. Simple enough. Tell your story.

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The Coalition for Pulmonary Fibrosis (CPF) is proud to announce a special partnership with Genetic Alliance that will bring the experiences and needs of Pulmonary Fibrosis (PF) patients directly to the Food and Drug Administration (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 athttp://www.coalitionforpf.org/peer-portal/
This important new 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.  Your voice can be critical to finding the answers we need.  Please take a few minutes to complete the survey – those few minutes may prove of immeasurable value to the entire community.
In an effort to capture as much information as possible, families and caregivers who have lost someone to the disease are also encouraged to participate.  This inclusive approach will vastly increase the potential for information sharing in this important program.
This is a time sensitive effort as Pulmonary Fibrosis is one of three diseases that will be the focus of FDA attention in 2014-2015 in drug development public meetings that will be held later this year.
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.
Sincerely, 
Mishka Michon, CEO, Coalition for Pulmonary Fibrosis
Share Your Experiences!  Click Here http://www.coalitionforpf.org/peer-portal/
 
 
 
Coalition for Pulmonary Fibrosis
10866 W. Washington Blvd. #343
Culver City, CA 90232
(888) 222-8541
info@coalitionforpf.org
 

Tuesday, June 24, 2014

Quiet Day

Still sore. No rehab today. The morning sun is shining so I will take the oxygen and have a nice walk along the ocean. The goal will be not to cough or sneeze but I will try to keep breathing deeply, even though it hurts!

The plumber came yesterday to confirm that we have no leaks in the house - thank goodness - and will be back this afternoon to install a new pressure regulator. Check that off the list. Michael is phoning Wayne today to get on his calendar to install the wood on the closet floors. I think we are making progress!

My new little plants need some watering, I need to make my pizza lunch for a field trip tomorrow and send our friend Fran some flowers. She tripped on a dog toy - they have a large standard poodle - and must stay off of her foot for eight weeks. Awful.

My mom is not feeling well since her pacemaker was checked last Friday. Exhausted and sleeping a lot. No energy. This is not like my mom. I encouraged her to phone the clinic to let them know and will follow up with her today. A worry.

A much needed quieter day ahead.

Monday, June 23, 2014

Recipes for the Week

My ribs are still very sore but better. Michael made me realize that I really shouldn't workout at the other rehab today. It was not just because I couldn't do any weights with my upper body but the reminder that I have pain when I breathe deeply or cough. Oh, now I remember! So, I will wait for the rehab class tomorrow to exercise in front of the RN and, if it hurts too badly, I will stop.

We need a new water pressure regulator, so the plumber is due this afternoon. I am on a tear to get a few things done around here and that is #1 on the list. Next up, I will try to get on Wayne's schedule to finally install wood (not cedar as it is too strong of a smell) on the floors of all the closets in the house. Since we put in new carpets years ago, the closets have been down to the sub floor. When he is finished, the driveway will be next on the list. After Michael hit a jackpot at an Indian Casino, we had pavers installed not only on the driveway but along the side of the house. After a many years, the lights embedded in the pavers have burned out and it is time to have them replaced. Of all the three items on my list, this will be the most expensive.

Today, I am going to the butcher's then mom and I will spend a few hours together, have lunch followed by a quick run through Trader Joe's before I have to be home to greet the plumber. Here are the recipes for the week for those of us on prednisone as we do not process sugars properly. The goal is 3-4 ounces of protein and lots of non-starchy vegetables. That's it. No fruit. No yogurt. No milk. No grains. I made a killer shrimp salad for lunch yesterday and smoked salmon, light cream cheese, red onion, fresh spinach wrapped in a La Tortilla low carb tortilla for breakfast. So good!

Breakfast:
Sausage Spinach Bake - here
I will use turkey sausage and non fat sour cream instead of the cream.

Lunch:
Parmesan Pepperoni Pizza - here

Dinner:
Rachael's Gyro Burgers with Greek Salad - here
I use 1/2 pound each of lamb and ground chuck for 4 servings. Trader Joe's makes a great tzatziki sauce  and a low fat feta cheese to help reduce the calories.

Bacon Beef Rolls with Spicy Cauliflower Stir Fry - here and here
The beef roll recipes actually serves 10-12 servings. Recipe can be cut in half.

Parmesan Baked Fish with Bok Choy and Green Onions - here and here

Paleo Lettuce Wraps - here

BLT Chicken with Zucchini Chips - here and here
I use only 1 pound of chicken for 4 servings.

Sunday, June 22, 2014

Gardening Accident

What a race. We are watching the F1 race from Austria while I blog. At the halfway point, it is really hard to predict who is going to win at this point. Very interesting.

While doing the gardening yesterday, I was loading a huge tub of leaves that I had gathered along the fence line into the recycling container when something happened. The lid just would not stay open, I was positioned in a twist trying to dump the contents of the heavy tub when the huge container slammed into my side, just below my left arm pit. I didn't hear a crack but I knew I had hurt a rib. I checked my breathing to make sure I didn't fracture it or punctured a lung. Check. I took a deep breath. OUCH! I coughed. DOUBLE OUCH. Clearly I did something.

Did I stop? Nope. I still needed to cut the back, trim, blow and water. There was a bit of a worry that if I suddenly couldn't breathe, no one would come to my aid. Suddenly, I noticed that Ron was in his garden on the phone with his daughter. Okay. If I needed help, he was there. I continued.

Before going into the yards that morning, I was tired and planning a nap. After getting everything done, I fell into the chair and slept for two hours. While still in my gardening clothes and my hair matted from the hat, the door bell rang. It was my dear friend Sue. We met through our children when they were in kindergarten and she just was driving by, decided to stop for a quick hello.

She stayed and chatted an hour. It was delightful. We booked a lunch together after she returns from a visit with her family in Boston. Suddenly, it was 4:30, Michael was home and I was still a bit groggy. I fell into bed at 8:30 and slept until 6:30 this morning.

The ribs are sore but really not any worse than yesterday, so that is a good sign. I will take it easy today with a quick trip to the grocery store followed by a walk along the ocean.

Saturday, June 21, 2014

Surviving the Week

What a week this has been. I am pooped and looking forward to a day working in the gardens and doing laundry. And a nap. I need a couple days of downtime.

Randy's dad's burial service at the cemetery at the top of the pass was bathed in sunshine and very little wind yesterday afternoon. We arrived an hour early, expecting hundreds of people, only to find a small group. The obituary in the local paper did not mention the time of the interment. The actual visitation then funeral service was in a city across the bay where he had retired. I understand that both were very well attended. It was a very touching burial and we were so happy to have been there to spend some time with the family.

But to get there on time, mom and I arrived an hour early to her appointment for the injection into her eye for macular degeneration. We told them that I needed to be at a funeral and they fast-tracked us. We were out of there with enough time to drop her off at her home then swing back to pick Michael up at work, eat peanut butter sandwiches in the car for lunch (I had mine on the rye crackers) and a bottle of water while driving up to the cemetery.

After we said our goodbyes, we shared a rare late Friday afternoon together in our garden. A dear friend dropped by for a bit, we had a fantastic dinner I whipped up and we both fell into bed early. This morning, we watched the stunning qualifying for tomorrow's race from Austria. Massa and Bottas are on the front row, both with Williams Martini Racing. This is a major shakeup in the F1 world and it should be an interesting race.

Friday, June 20, 2014

T Cells Instead of Immunosuppressive Drugs after Transplants

I did not get the "science" gene. I got some other great genes but I really wanted to try to understand science. A few years ago, my brother (with a PhD in Atmospheric Physics, I might add) gave me a subscription to Science News in my science quest. Each month, I continue to try to read every article but I really can't get through the articles about space. I still try but...just will not sink in.

The June 14, 2014 Science News featured a cover article of "T Cell Attack" which was about how engineering patients' immune cells are being used to battle cancer. They explained that a man had leukemia, chemo wasn't working anymore, and he was depleting. The researchers chose a particular immune cell from his blood and inserted a virus into the cell, which provided new genes that tells the cells (t cells) to attack leukemia cells. They took the altered T cells and through an IV, allowed his immune system to become a "cancer-seeking " weapon.  A month later, he was cancer free.

It was buried a bit in the article but it also discussed autoimmune diseases like rheumatoid arthritis or type 1 diabetes as the possibility of being cured using this method. So, what about those of us who have an interstitial lung disease? Apparently, Dr. Bluestone at UCSF is working in his lab to see if this T cell therapy could also be used in organ transplants.

"His lab is developing ways to use specific Tregs in transplant setting so that the cells recognize the transplanted organ and 'educate' the immune system to see the organ as part of its own tissue. Such treatment may eventually eliminate the need for ongoing treatment with immunosuppressive drugs.

Current drugs used to suppress the immune system may work for years, but many transplanted organs are ultimately rejected by the patient's body."

There is so much more information about using this method post organ transplants instead of the cocktail of drugs currently used. For the complete article, the site to buy Science News is here   It can also be found on magazine racks of your local bookstores.

Thursday, June 19, 2014

Bumping into Nasty

Just a quick blog this morning because mom has an early morning appointment to check and adjust her pacemaker. All went well yesterday. I made all the appointments on time and even cooked dinner! But I thought I should share this conversation that happened as a nice man held an elevator for me as I headed to the weight management clinic on the 5 floor. There were already four other people in the elevator, I hopped in then noticed that none of them had pressed what floor they wanted so I said:

Me:  What floor can I press for you?

From the back: 3, please.

Another: 2, please.

Another 4, please.

Me:  Pressing buttons! That is something I am good at!

Numbers 2 and 3 got off on their floors while I continued riding with an older woman.

Older woman while exiting the elevator: Your enthusiasm for pressing buttons is overwhelming. (Said in a snarky and disgusting manner. In other words, I was way too happy.)

Me in a louder voice as she was now out of sight:  I am just happy to be alive as I should have been dead five years ago! (Now comes my confession: I added a very quiet "b*tch" after the elevator continued to my floor. I NEVER use that word but somehow it felt just right.)

While checking in with my friends at the front desk, I was telling them what had just happened. Imagine living with someone so nasty and so negative and so mean. They started telling me stories of some of the most horrible things that have been said to them. I wonder if we are so self absorbed these days that we have lost all sense of propriety and kindness? Or was she just a nasty woman?

Wednesday, June 18, 2014

Very Tight Schedule

Today is going to be all about timing. By 8:00, I need to be in Safeway buying a REV for a portable lunch and a couple of things I forgot so I can make some dinner tonight. Drive home. At 8:40, I need to be back in the car with my oxygen and yoga mat to make the 9:00 yoga class in time enough to calm down from all the running around. After yoga, I have 30 minutes to drive back home, change my clothes and put on some makeup then be back in town for my 11:00 hair appointment.

Fast forward, I will take my beautiful new haircut and color back into the car and drive deep into the city for a 3:00 appointment with the weight doctor, who always runs late. I always run early. This will be my last appointment with her as she has been awarded some grant and will not be seeing many patients for a while. It seems I am always nervous about weighing in.

Then comes the long drive home, probably around 5:00. Time to make dinner and pick up the house for the housekeepers on Thursday because it is going to be another mad day and an even madder day on Friday.

I am trying not to panic!

In other news: William leaves for Croatia this morning for the beginning of an interesting month of concerts throughout Europe. He is especially looking forward to concerts in Norway, Finland and Denmark. He will have stories to tell.

Tuesday, June 17, 2014

Still Breathing

The funeral for Randy's dad is Friday. It will be at the cemetery on top of the mountain on the pass. The views of the entire Bay Area and ocean make it a breathtaking site. We plan to attend.

The sun is shining this morning. What a welcomed sight! I am going to get dressed, throw my walking shoes on and hit the trail along the ocean before going to the rehab class. Two workouts! I am worried about tomorrow's weigh in. So worried that I won't miss tomorrow's new morning yoga class before having my hair cut. After a quick change of clothing, I will drive deep into the city for the meeting with the weight doctor.

But for today, a good walk, seeing Dick and Sherman and watering the new plants in the yards is my agenda.

One of the indicators of how I am breathing is the amount of oxygen I use in the garden, on my walks and at the other rehab. I usually crank it up to 4 liters (I use 2 liters in the rehab class) so I can push myself even harder without worrying that I am not getting enough oxygen. There is a feeling that I get when it is too high. It is like it hurts my sinuses. It had been a long time since I had turned it down to 3 liters but that was what happened yesterday. That it a good sign that I am breathing well. I am interested in seeing what my numbers are during the rehab class today.

Speaking of numbers, I have learned through the years not to panic with the ups and downs. Last Saturday, we were at the restaurant right on the ocean having a few minutes with the owner before their road trip. He is taking his wife and grown sons in an RV to South Dakota. It will be good for all of them. His wife was diagnosed with breast cancer several years ago and has been fighting a long, tough battle. He told us that she was a bit depressed about her latest numbers as they were not horrible but they were suddenly not stable. We talked about how I learned not to worry about the numbers until there was proof that I should worry! The "what ifs" can kill you mentally!

It was only after we left that I recognized that she and I have different end points. If my numbers go south, I am looking at transplants. If her numbers slide, she is facing death. Yeah, I guess I would worry with every little change, too.

Monday, June 16, 2014

A Rather Teary Father's Day

Even though it was cold and foggy all day, we had a lovely Father's Day celebration, though there were some tears in the morning. It began with us staying in our jammies until 10:00 while watching "Saving Mr. Banks." What a surprise pick for a Father's Day. We both were sniffling at the end. Then, I opened the computer and my heart broke.

At Randy's 57th surprise birthday party two weeks ago, his dad was there, looking great and happy. On Facebook yesterday, Randy posted: This is a picture of a canvas print my very good friends made for my birthday this year. It's of my dad and I when we went on a drive to Monterey a few years ago with my car club.

Since retiring I have got to spend a lot of good quality time with my dad, trips to the coast, rides in the Chevy and a lot of doctors visits. While these have been nice and we have shared stories (that neither of us had remembered the same) about each other they are not as important as the times I spent looking up to this great man growing up as a child. The most important things he taught me were not always said, but were shown in his actions. He was a very caring man who would do anything to help a fellow human being, he was fair with everyone and always had the right advice, not that I always followed it 

Fathers Day has always been a very special day in my life for I get to show and tell dad just how very special he is. Unfortunately this year is a bit different as I won't be able to tell him in person. Dad passed from this earth this morning after a week of hospitalization for a weak heart. While some feel it is bad that he died on Fathers Day I see it as him making this a day our family will remember forever. I will miss this great man daily and am forever grateful to have had him as my father. Go to Mom you are once again united, you will never be apart again. I love you Dad!


So, more tears flowed. His dad had been so kind to us through the years and just a good man. He was 85-years old and born the same year as my mom. Gloomy weather and tears!

But, it got better. We decided to get dressed for a nice lunch, headed down to the Ritz but ate at the pro shop, which has really great food and never crowded. A hidden gem. Just as we walked through the door afterwards, the phone rang. It was William. He and Michael talked forever. He is leaving for Croatia on Wednesday for the beginning of their European tour. Who goes to Croatia to play in a club? He was rather excited to explore someplace he has never been. He also had decided to set aside the big group he had been with for 10 years and stick with this group he met at Coachella. They are on the fast track upwards. He enjoys that ride. He and I talked about his new personal trainer and his goals. It will be interesting to see him as he says he already sees changes to the shape of his body. 

We then watched the imploding of the Giants, enjoyed a bit of pate then Michael lit the coals for the rib eye steak. I also asked him to cook a full cut-up chicken for tonight's dinner (and some lunches and other dinners). The rib eye was served with fresh carrots and his favorite ice cream, which he said was the perfect Father's Day dinner. It really was a nice, but sad day. 

Sunday, June 15, 2014

Happy Father's Day

The nice sunny morning yesterday has changed into a windy, foggy, cold morning today. What a Father's Day! Michael has suddenly changed our plans. We are staying home. I will be making a lovely Greek omelet for his special breakfast. William will probably phone around noon and hopefully, the sun will make an appearance for our grilling later in the day.

Fathers. I always felt badly that their special day occurred during summer vacation. Sad that no school-created crafts were made in their honor as is done for Mother's Day. Talk with a successful happy woman and usually there is a great relationship with her father in her youth. I was so lucky to have a wonderful dad. I expected to be as deeply loved by my husband as mom was loved by dad. It was the standard. Fortunately, I found it.

It is joyful as a mom to watch my son's relationship with his dad. When they are together, there is an actual sparkle in their eyes as they speak with each other. Their body language is interesting as they always seem to lean towards each other. William deeply respects his dad. Michael loved and adores his son. He is proud of him for the way he lives his life as well as his achievements.

My deepest Happy Father's Day wishes to all the great dads. Enjoy the day!

Saturday, June 14, 2014

Party Time

Morning sun! A rarity of late. Perfect for my new little plants trying to establish their roots in the garden. My mom joined the rest of the world when she bought a cell Track Phone a couple of weeks ago, though she thought she really wouldn't use it. She bought a card of 90 minutes, which would have expired in 90 days for $20.00. The phone was $30.00. Not a big investment and no monthly fees.

Well, she has discovered texting. My sister, brother and I love to text her throughout the day and she just loves it. She feels connected. She was running low on minutes when I arrived yesterday so we ran to Best Buy and she is now good for almost 200 minutes. She was so very happy.

But, we had no time to squander. I had bought two "freakishly large shrimp" and a gorgeous rib eye steak at the butcher's in anticipation of our Father's Day BBQ so I needed to get the frozen shrimp into my freezer as soon as possible. I had them in an insulated bad with ice in the trunk but...I was nervous. They were $5.00 each. Yes, you read that correctly. They are huge and taste like lobster. So, after Best Buy we headed over the pass to Starbucks. Well, we just had to stop at Starbucks as mom has a true addiction to their Chai (tall, non-fat with sprinkles). Finally home, the shrimp found their home into the freezer and we took a tour of the garden with its new plants.

Ron and Susan are due home from Hawaii today. I took mom next door to see their garden and to pick some strawberries and raspberries for her to take home. She was like a little kid. She had to look at all their plants and was so happy to taste the fruit right off the vines. Quickly, we ran into town to get our toe nails done then we had a great lunch of fish tacos before driving back over the pass to take her home.

A long, hurried day. I came home, watered the new plants then cooked my breakfast for today (red cabbage, pancetta and goat cheese) and dinner last night (Cincinnati Chili). It was a very long, full day.

Today is going to be just as crazy. I need to make the pasta salad to bring to Melanie's high school graduation party this afternoon then make a quick run to the bank and Peet's coffee. The grass needs to be cut, my hair needs to be washed but all will be done in time to enjoy a party to celebrate one fantastic college-bound young woman.

Friday, June 13, 2014

Great News, Stable, Father's Day Plans and Toe Nails

As you probably have read in yesterday's blog, there is so much news about the two new successful Phase 3 trials of the first drugs to treat fibrosis. This is a bit deal. We also learned that there are four more drugs coming down the pike right now. These two drugs will be the first generation of drugs to treat fibrosis. Finally, there will be some kind of treatment for IPF.

On Wednesday, I did make it up to the city to meet with the nutritionist and I am still "stable." I gained .01 of a pound. That is a grand total of less than a pound since being weighed in after the road trip. Afterwards, I lost that .01 of a pound running to the nursery, buying almost 100 plants, working for a few hours planting and watering those plants. Still had to make some dinner. I slept like a baby that night.

Michael and I had spoken about his food wishes for Father's Day that evening. On Thursday, I hit Safeway early to buy most of his requests but will swing by the butcher's this morning to buy a nice rib-eye steak and two colossal shrimp (they taste and look like a small lobster) before I see mom. She and I have an appointment to have our toe nails done and we will enjoy our traditional fish tacos afterwards.

In the best news of all category, our taxes are finally done and I picked them up from the office yesterday. Michael and I thought we were going to have to pay more on top of what had been taken out during the year. We were thinking it would be in the range of $2K - $3K. After a long road trip, that was going to hurt. Before rehab class yesterday, I retrieved the envelope from our tax accountant's front desk, hurried to the car and opened it up. Warm relief flooded my body. I quickly phoned Michael. We have a total refund of both state and federal of $2,200. It must have been both of our insurance premiums and my medical bills that put us over the top.

We have an unusually fun weekend plans ahead. Our adorable neighbor whom we have known since she was born, graduated from high school yesterday. The big party is tomorrow. Then, we are planning to drive down the coast for a Father's Day breakfast at our favorite dive before doing odd jobs and a BBQ for dinner. And, he is also anticipating a phone call from our son. It has been one wild week so I am looking forward to spending quieter days with Michael and just enjoying being together.

Happy Friday the 13th!

Thursday, June 12, 2014

ILD Support Group - Drug Trials: NAC, Pirfenidone, Nintedanib

At Tuesday's ILD Support Group Meeting, Dr. Paul Wolters discussed the results of three of the Phase 3 trials, which were announced at the recent American Thoracic Society's International convention in San Diego.

All three trials included patients from my university hospital. Patients with IPF participated in one of these trials.

1. N-Acetyl Cysteine (NAC)
Rationale:
Oxidants injure lungs. NAC is an anti-oxidant.

Blind Trial: 264 people in 25 centers were given either a placebo or 600 mgs 3x a day (1:1) of NAC. They had mild to moderate IPF, a FVC of 50% or higher and a DLCO of 30% or higher.

Primary Endpoint: Change in FVC at 60 weeks.

Secondary Endpoint: Survival, rate of acute exacerbations, 6-minute walk distance, quality of life.

Results: NAC group lost 150 ccs of lung function, which was the same rate as those on placebo. NAC did not prevent loss of lung function in IPF. It was well tolerated. It is recommended to stop taking NAC if the patient has IPF.

2.  Pirfenidone
Rationale:
Drug blocks development of fibrosis of the lungs
Prior to Phase 3 trial suggested it slowed the loss of lung function
Approval already in Japan, Canada, Indian and some countries in Europe

Blind Trial: 555 people in 127 centers in 9 countries with mild to moderate IPF were given either a placebo or 2403 mgs/day (1:1)

Primary Endpoint: Change in FVC at 52 weeks

Secondary Endpoints: Survival rate, change in 6-mile walk distance, quality of life, progression slowed

Results: The group on placebo lost 400 ccs of lung capacity in 52 weeks with the group on Pirfenidone only lost 200 ccs in 52 weeks. It cut the lost of lung function by half.

There were actually three trials and the data was pooled. Fewer people on Pirfenidone died compared to the other group. It prevented death and preserved lung function.

Side Effects: There were side effects including nausea, rash and anorexia. Since 90% of the patients stayed on the drug for the duration of the trial, this is considered tolerable. The FDA had been concerned about Risk vs Benefit.

The final conclusion: Pirfenidone slowed progress in IPF, improved survival with moderate side effects that are manageable. It works but they have yet to discover exactly how it works.

3.  Nintedanib
Rationale: Tyrosine Kinase inhibitor which blocks collagen secretions, fibroblast growths and blood vessel growth. Prior to this study, the Phase 2 trial suggested that it slowed the loss of lung function in patients with IPF.

Trial: 1066 people in 205 centers in 24 countries participated in two blind trials were run simultaneously where 150 mgs 2x a day of Nintedanib was given to a randomization with a placebo group of 3:2. Each had mild to moderate IPF.

Primary Endpoint: Change in FVC at 52 weeks

Secondary Endpoint: Time to first exacerbation (flare), quality of life, death

Results: The placebo group lost 200 ccs of FVC while the group on the drug lost 100cs FVC. Acute exacerbation were not common and only experienced by 6-7%. Survival of those on the drug had better survival rates.

Side Effects: Diarrhea was experienced by 50% of the group taking the drug (and 20% by the placebo groups as it was known to have this problem. People were hoping to have the side effect so they knew they were getting the drug) and 25% experienced nausea. The dose was adjusted, which helped with these side effects and 90% of the patients stayed on the drug for the duration of the study.

Conclusion: Slows IPF by 50% compared to the placebo group. The trend is towards improving survival and has moderate side effects, which is mostly manageable.

My question to the good doctor was if there would by any studies with these drug including patients with a variety of ILDS. The insurance companies will not approve these drugs off label for a while. Maybe years. Those of us with other ILDs will have to pay out of pocket for these drugs, which will be thousands of dollars a month. Hopefully, this dance with the insurance companies will be quicker than the normal process. Our lives depend on it.

Wednesday, June 11, 2014

One Jammed Packed Day

I made it through the day yesterday and even got home with enough energy to cook breakfast for this morning. The drive up? Easy traffic, free valet parking but terrible fog and wind. Cold. I arrived at the pulmonary function lab almost an hour early. They took me right in. I only had to do the DLCO and Spirometry tests. Simple. Less than thirty minutes later, I was done. The news: My FVC was lower than in October but my DLCO was higher. I was also rather shocked that I had a temperature of 99 degrees. That was high for me. My usual is 96.8 due to my thyroid issues. When I got home, it was back to my normal and I just checked it again. Normal.

After making my way down to the cafeteria for a cup of coffee to kill some time and people watch, I then headed across the street and down an elevator to wait an hour for my CT Scan. They took me in within minutes! Early! Done! Back upstairs, I found a bench away from everyone and phoned Michael's sister Anna. We had been trying to connect for a chat but I am booked in the mornings and she is booked in the afternoons. We mostly talked about plans for our surprise visit on their mom's birthday in July. I had bought a REV for lunch at Safeway and was munching on that while we talked.

Anna and Doug are taking a river cruise in September beginning in Budapest and weaving through Germany. She has never travelled, has been buying appropriate clothing and was so excited, she could just bust. My wish is that this trip opens their lives to the world of traveling together. Doug retires just before the trip so they will now have the time.

Looking at my watch, I realized that I needed to get to the ILD Support Group meeting. Walking against the howling cold wind, the meeting was several buildings away. There were a couple of people already there but I didn't recognize them. An older, tall, slender man asked me a few questions and that began the beginning of a friendship. What a nice man. He is dealing with IPF, had done his homework and was not afraid to ask questions regarding the latest drug trial. I am still working on my meeting notes and hope to post them tomorrow.

I had left home at 9:30 and walked back in the door at 4:00. A long day but I really wanted to cook the "Bacon and Eggs in a Different Way" for our breakfast this morning. Done. Dinner was leftovers.

Before Michael left this morning, we began to plan Father's Day. I think he wants to BBQ one of the fabulous 23-day dry rub rib-eye steak from my butcher and I offered to make any dessert of his choosing. He is going to think about what he wants while at work today as I have to buy everything before the weekend.

Today? The long drive back deep into the city at another campus to see the nutritionist followed by a trip to the nursery here in town and some yard work before I make some dinner tonight. Another jammed day!

Tuesday, June 10, 2014

Dr. Jeff Swigris' Blog Information

For a while, I have been reading a blog by Dr. Jeff Swigris at the National Jewish Health in Denver, which most agree is the leading hospital for pulmonary diseases in the country. He is amazing. The latest blog is what he learned about the drug trials we have been talking about and, once again, can explain them in a way that is rich in details yet understandable to us common folk.

Bookmark this site. Here is his blog or you can access him from my blog under Blogs I Follow:
http://pulmonaryfibrosisresearch.org/ats-2014-debrief-explanation-of-results-from-four-ipf-drug-trials

Today will be filled with a full set of pulmonary function tests! High resolution CT Scan! ILD Support Group meeting! Fun, fun, fun. A very full day. I am a bit nervous about the PFTs as I am not breathing as well as before our road trip. I so wanted to show improvement. Later at the meeting, we will be discussing the latest drug trials for pulmonary fibrosis.

Monday, June 9, 2014

Recipes for a Wild Week!

Hang on to your cowboy boots, it is going to be a wild ride of a week! Everyday will be a challenge! Every night will be exhaustion!

Today: It is going to be an absolutely beautifully warm day here on the coastside and I will be gone! Over the pass! All day! Bah! I am going to the other rehab first thing this morning to get in a good workout. Afterwards, I will swing by the adorable butchers to buy for the week then head to mom's. We will spend the day together, which will include finding a new pot for the side yard as one broke while we were gone and looking for new plants to replace the tule. I also need to buy the food for the week at Trader Joe's. Then come home to put it all away and make some dinner.

Which gets me thinking about when I first got sick and began rehab, I could only do two activities of living in a day. Two. After a year of rehab, I could pretty much do what I wanted, within reason. As I think of all that we are going to do today, it is hard to remember when I really could not do anything. I don't ever want to go there again.

Pulmonary rehab, dear readers. That is the answer to a better quality of life.

According to the number of hits whenever I post recipes for those of us on prednisone, this is a very popular topic. So, here are the recipes for this week:

Breakfast:
Bacon and Eggs in a Different Way - http://www.lowcarbsosimple.com/bacon-and-eggs-in-a-different-way/

Skinny Greek Omelet - http://www.skinnymom.com/2013/09/14/skinny-greek-omelet/

Lunch:
Pizza - http://www.genaw.com/lowcarb/thinandcrispy_pizza.html

Warm Cabbage Salad with Bacon and Goat Cheese - http://www.kalynskitchen.com/2007/04/warm-red-cabbage-salad-with-bacon-and.html

Dinner:
Scallops with Pancetta and Brussel Sprouts - http://www.seriouseats.com/recipes/2013/10/seared-scallops-pancetta-brussels-sprouts-recipe.html?ref=thumb

Sassy Hugged Chicken Breasts and Onion Straws - http://chicken.betterrecipes.com/sassy-bacon-hugged-chicken-breast.html  and  http://www.slenderkitchen.com/crispy-parmesan-onion-straws/

Cincinnati-Style Chili -http://www.genaw.com/lowcarb/cincinnati_turkey_chili.html

Five Spice Pork with Asian Slaw- http://www.seriouseats.com/recipes/2012/09/chinese-five-spice-pork-with-asian-slaw-recipe.html?ref=box_quick

Sunday, June 8, 2014

...And Another Road Trip

The sun finally came to the coastside yesterday during the late afternoon. I sat and just soaked it up. It had been almost two weeks since we saw it last. I had worked in the gardens for five hours, did a lot of hand trimming, removed a rhododendron that was not doing well, dug up a dead plant and plotted my visit to the nursery this week. It felt fantastic to sit and read a magazine.

Because of the sun, it is going to be crazy with tourists down here today. I need to run into town this morning then I am going to walk along the cliffs all the way to the harbor. It will be a long trek. It will be good for my thighs!!

This week, I will have a full set of pulmonary function tests and a high resolution CT Scan on Tuesday followed by the Interstitial Lung Disease Support Group meeting. It will be a long day. The following day, I will be back in the city to the farthest campus for another meeting with the nutritionist. On the fun side of life, mom and I are having our toe nails done on Friday.

Michael's sister Anna invited us to stay with her for a family reunion in July. We have never attended any of these as they are mostly attended by the aunt's family. But, this year Anna wants to go and asked if we would join her. Another road trip. A short road trip to Los Angeles. We can't wait.

Saturday, June 7, 2014

Nintedanib's Phase 3 Study in Plain English

As you know, I am most excited about the cancer drug Nintedanib's Phase 3 study in slowing fibrosis. But, sometimes the data is hard to plow through. On Thursday, I had tea with my friend Lois who was a drug designer. She has taught me a lot. I asked her to read the study and let me know what it means in plain English. Here is her reply:

 It turns out that nintedanib is NOT a monoclonal antibody, but a small molecule made by Boehringer Ingelheim as a cancer drug.  It doesn't kill cancer cells, so is not a traditional toxin.  Instead it binds to a family of growth receptors and inhibits angiogenesis or the formation of new blood vessels. Cancer cells need at lot of nutrients and oxygen to support their uncontrolled growth, so pump out factors that increase blood vessel formation as they grow.  If this process is inhibited, which nintedanib does, the cancer is starved of food and essentially dies of starvation.
  

I don't know to what extent your lung disease fibrosis extent is also caused by new blood vessel
formation or if the fibrosis itself can be inhibited by tyrosine kinase driven receptors.  Tyrosine
kinases are involved in all kinds of growth stimulation and work by phosphorylating other proteins
in a whole network of proteins within the cells.  It does make sense in the biology world that inhibiting an unwanted growth process would slow a disease.
  

The article itself sounds very positive in that the FVC declined by about 50% less in the treated group as compared with the placebo.  Some patients actually had declines of less than 5% over a year, which is somewhat miraculous.  The major adverse effects were diarrhea in about 60% of subjects and nausea in 20%.  It looks really, really good.  I would definitely talk with your lung goddess about trying to get yourself included in another clinical trial, if that is scheduled, or sign up for it once it gets approved.  After all there really is nothing else out there for this particular disease.

So, there it is in plain English. It is coming for those of us with fibrotic lung diseases. Hang on. Soon.

Friday, June 6, 2014

Ambulatory Patient Advisory Board

I met with the amazing women who are putting together the Ambulatory Patient Advisory Board (primarily to focus on the Clinic experience) and walked away realizing a couple of things. My total focus has been doing my job as a patient: understanding my medications, taking them in a timely manner, arranging and have PFTs and CT Scans, being on time to appointments, smiling, eating properly and exercising. With this board, I now have to look for the problems in the system. It is funny. I realized that I noticed the issues but just adjusted and worked around them. It was difficult for me to come up with some issues with the clinic system. I have been seeing most of these doctors for years, developed friendships with the desk people and schedulers, and generally have a ball every time I have an appointment! But, I understand that this not everyone's experiences.

I need to remember that I am not normal! Or, shall I say, my experiences are not the norm. For example, doctors run late, people travel from great distances to be seen at these appointments and it is a hardship when the clinic is running behind. That has never bothered me. My day has been set aside for this appointment even if it takes all day. But, it would be nice to have a display in the waiting room if a specific doctor is running late. A patient could run out for some coffee or just to get some air instead of just...waiting. Once other negatives are revealed in the meetings, I hope to offer lots of different suggestions to fix the problems. That, I am good at! But, I am not so great at pointing out the problems initially.

What I have realized after today is that I am not one to let the small stuff bother me. It really doesn't bother me if Dr. K. is running late. I am just thrilled that she is my doctor and she is constantly assessing my HP.  I try to make going to the doctor a fun experience. I try to make the people's life I touch a bit better for having me pass through their day. I try to be a good patient by taking care of myself.

From here on, I cannot blog about what is discussed at the meetings or any specifics but I believe that the problems are probably the same ones that clinics throughout the country deal with every day and not just specific to my lovely university clinics. This is going to be an interesting experience.

Thursday, June 5, 2014

Vinyasa Flow/Yin Yoga

Yesterday, it was with a bit of trepidation that I showed up to the new yoga class on Wednesday mornings. Coincidentally, it is being taught by a woman I first met when I thought I needed a private teacher to get me going. Remember, Dr. K. had insisted that I practice yoga. As she said, "You have done the work on the outside, now is the time to work on the inside." She wanted me to have the tools learned in yoga to handle the stress and pain of lung transplants.

Karrie was an amazing teacher. Natalie had recommended her to me as someone she wished she had met a long time ago. A master teacher. We met, talked but I decided to just try a class with another teacher, which worked out well for me. During the past three years, Karrie and I have remained friends on Facebook.

I arrived a bit early to class and Karrie greeted me by name and said, "You are home from your trip!" Facebook. Sometimes you gotta love it! The class was a 90-minute combination of Vinyasa Flow and Yin Yoga. One works the muscles while the other works the connective tissues. It is a good combination for me. I got through the class with sweat and supplemental oxygen for the first half and loved holding poses for 3-minutes each during the second half. I feel a bit of tenderness in my body this morning, which I also like. Proof of a good workout.

After the class, Karrie came to me in tears. She hugged me and told me that I had come a long way since we met over three years ago. Not only physically but emotionally as well. Sadly, I have doctor appointments the next two Wednesdays so I told her I would return soon.

Today is going to be a full day. I am meeting Lois, my biologist friend, for tea and conversation this morning then the big interview in the city for the Patient Advisory Board is this afternoon. Lots of talking!

Wednesday, June 4, 2014

Yoga and Sunshine

I peeked ahead at my calendar and I began to shake! I am really back into life after the road trip. It is crazy.

But, today is one of very few simple, nice days. I am going to enjoy it. The fog is beginning to break up and there is some hope of sunshine soon. Within the hour, our neighbors Ron and Susan leave for Hawaii in search of sunshine. I am super jealous! My former yoga teacher is focusing on her new career as a massage therapist so there has been no Wednesday morning classes until recently. Karrie is now teaching a class that begins with warm ups and sun salutations then turns to poses that are held and held and held. That is going to be a challenge for me. I am going to be exhausted and hurting after the 90-minute class this morning. Three hours later, I will be sitting in the dentist chair having my teeth cleaned. Between those two activities, my money is on a nap after crawling home from yoga. Later, I need to cook dinner and pick up the house for the housekeepers tomorrow. And that, dear Reader, is a quiet day!!

The ILD Support Group announced that next Tuesday's speaker will discuss the new anti-fibrotic drugs that were announced during the recent American Thoracic Society international conference. Dr. Paul Wolters will tell us what the experts are saying about pirfenidone and nintedanib. I will take lots of notes and report back. As an example of my crazy schedule ahead, before this meeting I will have a full run of Pulmonary Function Tests and a High Resolution CT Scan. And lunch.

Sherman told me yesterday that it was better to be busy rather than being bored. Yup, I agree but sometimes I need a few days of down time!

Tuesday, June 3, 2014

Interview for the Board

The phone call came about 6:00 last night. A woman phoned to discuss Dr. K's recommendation that I join the patient advisory board at my university hospital. She asked a few odd questions, for example, how far do I live from the hospital? Do I have another family member who would also like to sit on the board? She also told me that the board meets for a two hours session every other month beginning in September.

Then she told me that the woman who works with the board will need to "interview" me and we set up that appointment for Thursday from 2-2:30. As with most boards, there is an expectation of donations. I wonder if that is the reason for the appointment. An interview? Half hour interview? I am oddly intrigued.

So, Thursday: I am meeting my biologist friend Lois to talk about the road trip over tea at 10:30 then I will hop in the car and head to the city. There is a heat wave coming later in the week so I expect very hot weather.

My mom bought a cell phone at Walmart yesterday along with a card of minutes that roll over for three months. For a grand total of $38.00, she has now join the masses. While I was on the road trip, she had a bit of car troubles and it scared her. She needed a phone (there are no phone booths anymore) so the sweet cashier at CVS called AAA for her. It turned out fine, it started right up moments later but it still made her feel very vulnerable. This new phone also allows for text messages. And a camera. Really rather amazing for the money.

Monday, June 2, 2014

Sunday in the Park with Randy

What a party on Sunday afternoon! It was very sweet to watch a group of friends, who have known each other since most were teenagers, spend the afternoon together. All nine of them had their heads together talking at one point and I noticed that some still had hair! The rest of the party included people Randy knew from his car clubs and some former officers. But, it was that group from his youth that made me smile and think: How many people have you maintain a strong relationship since you were a teenager? Me? Zero. That in itself says a lot about Randy.

To surprise him, his wife Sue arranged a lunch with his dad for her birthday, which was actually yesterday. That was brilliant! Throw her husband a surprise party on her own birthday! His actual date is this week. We arrived early to warm the appetizers and chat with his three children. Suddenly, they received a message from Randy asking if they had company?!? Apparently, Randy had cameras installed a couple of weeks ago as there was a front door kicked in next door. Now, if his front door is opened, a photo will be snapped. But, the kids forgot to unplug the camera in the family room corner and Randy spotted Michael and me. Oops! His daughter replied that we were there to surprise Sue for her birthday. He was smelling a rat and really was not too surprised by the time they arrived home to find a house filled with people.

Their house backed up to a park so the party of the 80 people was actually there. In the sun. Hot sun. Really hot sun. We were so happy to drive home to the foggy coast.

It was fun to catch up on all the news of people we have not seen in years. Lots of laughing. So much fun.

Sunday, June 1, 2014

Just a Walk

The sun never showed itself yesterday but I swear that made for the the best walking weather. The trail right along the ocean was not at all crowded with other bikers and walkers and dogs. Lovely. I stood at one point and did a full 360 degrees: tree covered hills, a school, coastal trees, the lower end of the bay with the silhouette of the Ritz, surfers, lovers snuggling on the sand, the harbor, the famous Maverick's wave at the north end of the bay and back to the long expanse of open land along the ocean. After such a long road trip through twenty states, this is where I breathe well and relax and am aware of nature's rhythms to connect to the earth. I am home.

I spent the day cooking and watering the yards and banking and balancing our checkbook but it felt fantastic to walk freely outside the gym. Years ago, I was new to the disease and took a walk on the coastal trail. Too long of a walk. I got stuck. I struggled and fought to get home and it scared me. Dr. K. said not to walk alone. It took years to gain the confidence to head out to enjoy the solitude of the ocean again.

What surprised me about the walk yesterday was that it was just an hour, I walked very quickly so I was able to put in some miles and I was breathing well. Really well. My body felt centered. I vowed to do these solo walks in the afternoons after I get home from rehab or being with mom. Not every day, but maybe just a couple of times a week. It was such a different experience than in the rehab gym. It was the air. It was the feeling of freedom.