Living Well with a Bad Diagnosis - Lung Disease

Saturday, March 31, 2012

Saturday Lunch

I have an appointment with my lung doctor, Dr. K. next Wednesday. With their new computer system, I was able to send her an e-mail yesterday to suggest that I probably need a chest x-ray before my appointment. I am feeling so much better, the antibiotics have been finished for almost a week but I still have a light, sporadic upper respiratory cough.

Within hours, her reply was in the inbox, orders are now at the front desk and I will swing by to grab them on my way to the x-ray department. I am hoping it is just the end of my latest bronchitis and it needs a bit of a shove out of my lungs with some antibiotics.

Also, I have to cancel both sleep studies that are scheduled for next week as I still need oxygen in rehab. I am a bit sad about it but realize that it is the result of the infection in my lungs. I will work hard to get it all back again.

This afternoon, I am thrilled to host Natalie and her kids for lunch along with Jeannette. When I took over the music program, I hired both these women to teach classroom music and choir. We were a great team. It was the most successful time of my professional career. We have not seen each other for five years. It is time.

Afterwards, I am heading to mom's to deliver a storage container she ordered from Amazon. She had her first physical therapy appointment for her back yesterday and I want to hear all about it.

Another busy day. Sunday, I am planning to live on the couch!

Friday, March 30, 2012

Conference Call with ATS

Interesting morning. It began at 8:00AM with conference call with the American Thoracic Society from New York, the doctor from Minnesota who is heading the symposium on Hypersensitivity Pneumonitis and me. The subject? My appearance and speech in May the ATS annual conference which will be at the huge convention center in the city.

The focus of my 5-minute speech will be regarding the antigen which caused it plus the implications and repercussions of having the disease. Things like loss of income, lawsuits, isolation, being misdiagnosed. That sort of thing. I was so inspired by our conversation that I sat down and wrote out the speech in long hand within an hour after the call. I will share it with you after the conference in May.

I am so extremely impressed by the American Thoracic Society. It is a well oiled machine!

As company is coming tomorrow for lunch, I am staying home to work in the yards, cook food for tomorrow and go to the rehearsal with the little violin students for their concert next month. A long day.

Thursday, March 29, 2012

Heavy Air and Oxygen Saturation

The air is heavy. We are between storms yet it is so humid. We even slept with the bedroom door opened last night and had the fan on for the first time in months. Just hard to breathe.

But, that was no excuse for my need for supplemental oxygen for the first time in months when I returned to the pulmonary rehab class on Tuesday. It had been over three weeks since I had worked out in the class. Three long weeks. Clearly, I am not totally recovered from the acute bronchitis as I could not work out on the treadmill at my normal speed as the saturation levels would not get above 85%. On two liters of oxygen, I was back up to my normal 94%. RATS!

I still have the overnight spirometry and the sleep study through my university hospital scheduled for next week. Both must be cancelled. What's the point of determining if I need oxygen at night if I still need it during exertion?

Even more frustrating is that I seem to have a small sporadic cough on occasion which means that there is still an infection in my lungs. I am going to need more antibiotics. I am going to need to still be careful about expending energy. I need to get well.

The next appointment to see Dr. K. is next Wednesday. I suspect she will want an x-ray.

Wednesday, March 28, 2012

Coalition for Pulmonary Fibrosis Fundraising Walks

Below is an e-mail regarding fundraising "Walks" from the Coalition for Pulmonary Fibrosis. Also, at the bottom of the e-mail is an opportunity to create a fundraising page for your friends and family. 

If you are near Pasadena or Hermosa Beach, you may want to participate in these walks. The information is below.

From the e-mail:

Please help the Coalition for Pulmonary Fibrosis continue its mission to support PF research and PF patients by supporting our local fundraisers.  Thank you!


1st Annual PF Walk at the Rose Bowl In memory of Francis G. Chelin – Pasadena, CA

Saturday May 12, 2012 at 9am
Rose Bowl

Registration Fees:
Adult: $20
Children under 12: $0 (Please register as an adult to receive a t-shirt)

**Please register by 5/1 to receive a t-shirt **
If you are unable to attend but would like to support this event with a DONATION, 

3rd Annual Casino Night –Hermosa Beach, CA
Click Here to REGISTER

Join us for our 3rd Annual Casino Night Fundraiser in Hermosa Beach with proceeds 
benefiting the Coalition for Pulmonary Fibrosis.


Thursday, May 17, 2012, 6-10pm
Watermans, Hermosa Beach Pier
22 Pier Avenue, Hermosa Beach

$30 Early Bird Rate (before March 31, 2012) in discount code type in "earlybird"


Su Hwang
Director, Special Events
Associate Director, Development

Coalition for Pulmonary Fibrosis
10866 W. Washington Blvd #343
Culver City, CA 90232

888-222-8541 x704


Tuesday, March 27, 2012

This and That

Even though I will be seeing Natalie and her children Winnie and Oliver on Saturday, they are going to swing by for a quick visit before the rehab class this morning. I have yellow chicken Peep's ready for snacking and mini sausages from Trader Joe's for a snack as they will be coming from swimming lessons.

The last time they visited, I was saying goodbye to Winnie while she was hooking herself into her car seat when she paused and said, "I had a really nice time today," reflecting on the entire visit. She is five.

I am also a bit nervous about my first day back to the rehab class in over three weeks because of the illness and my mom. I am going to blame my mom and not mention the illness. After the former RN retired, I really don't like or feel comfortable with the new RN. She is nice enough but her skill set does not include how to manage a group of people. It is often uncomfortable when she berates a person in front of the rest of the group. So inappropriate. Some people are thinking of leaving. A shame, really.

Sometimes I feel like I am living in a cave and the excitement over the movie Hunger Games is just one example. A doctor who works out at the other rehab was so excited about it and asked if I had read the books. What? There were books? I swear, a cave.

So, when our friend Jill mentioned on Facebook that the Book Faire at the local middle school was selling all three books in the series for $21.99, I asked her to grab them for me. So, the adventure will begin in a few days after I finish Brad Thor's Full Black, a very manly book recommenced to me by another guy at the other rehab who was a former marine. A good treadmill book.

Monday, March 26, 2012

Weekly Food Recipes for People on Prednisone

Prednisone. It pushes blood sugar higher and makes it difficult to process carbs of any kind. A diet of non-starchy vegetables and protein is the answer to keeping weight under control while on this wonderful/horrible drug. I haven't written about my diet in a while. All is well. Stable. I thought it might be interesting to blog about the food for this week. I will stay within 1,400 calories and workout in rehab for an hour every day as usual.

Breakfast is going to be a breakfast crustless quiche -
http://recipes.sparkpeople.com/recipe-detail.asp?recipe=290991

Lunch is going to be 1/2 of a roasted chicken breast and a bowl of shredded cabbage with 2T. of Trader Joe's Goddess dressing.

Snack is going to be pistachios.

Dinner is going to be:
Cuban Steak with Avocado Salad - http://recipes.prevention.com/Recipe/cuban-steak-with-avocado-salad.aspx

Stir-Fry Walnut Shrimp - http://recipes.sparkpeople.com/recipe-detail.asp?recipe=1853307

Best Chicken Breasts - http://recipes.prevention.com/Recipe/balsamico-grilled-chicken.aspx

Baked Meatballs with fake pasta - Pasta Slim - http://www.genaw.com/lowcarb/baked_meatballs.html

All recipes make four servings so we eat the leftovers on the second night. I hope you enjoy these low fat/ low carb recipes.

Sunday, March 25, 2012

Parties and Ferrari

Sunday morning Formula 1 Malaysia update: Wet then dry then wet. Fernando Alonso of Ferrari won. Rather unexpected but it made for a great race. My guy Romain Grosjean? After spinning out on the third lap (rookie mistake bumping Schumacher) ended up out of the race again. For his birthday two years ago, Michael bought himself a Ferrari hoodie at their store in the city. He put it on over his pjs this morning to watch the race. So cute!

We stopped by mom's yesterday to set up a new portable covered clothes rack for her coats and to hook up her stereo system. Classical piano music was playing softly when we left. She was happy. It was the final job for Michael and the last thing to do from the move. 

From there, we drove the 75 miles to Jay and Nancy's for Jay's 80th birthday party with friends and family we had not seen since their daughter's wedding two years ago. The food was Spanish, all prepared by Janet and her husband Mike. Everything was off the hook. We stayed way too late, helped to do the dishes and clean up and got home well after 8:00. A long day. 

A short interlude: We got lost. After leaving their house, we had to connect up with a road that goes through a long pass over hills between valleys. We tried a short cut trying to find this road but failed, had to backtrack and lost about 10 minutes or so. We made it over the pass, hit the other freeway and shortly up the road in the rain, traffic skidded to a halt. A truck had very recently jackknifed blocking all lanes, lots of cars were involved, the smell of fuel was in the air and the police had yet to arrive. People were out of their cars and no one appeared injured. We snuck around it on pavement near the fast lane and got out of there. The freeway was closed minutes later. No. 1 - we missed being involved in this accident and grateful that we got lost earlier. No. 2 - we were so thrilled to get around it before the freeway was closed. 

This afternoon, we are going to another party of a famous retired race car driver. I am going to need a few days to recover from all of this fun!

Saturday, March 24, 2012

Eighty Years

Last week at this time, we both wondered it we would ever be well again. It has been a long slug of time. Michael feels about 85% while I am running around 95%. Rehab went well again yesterday but I had a horrible night of sleep, or rather a lack of sleep.

Madness with happen this morning: shower, nails then out the door to a stop at moms where we will hook up her stereo and put a new grip bar in her bath area, back into the car for an over hour drive across the bay and through a mountain pass to an afternoon party. An 80th birthday party.


Our former neighbor's children are hosting a party for their dad Jay who is celebrating 80 years. We just shake our heads. He has not changed one bit in the over 30-years we have known him. He looks the same. Really. He and Nancy exercise on a treadmill everyday and have watched what they have eaten all of their lives. Jay had never eaten any fast food and, while traveling, he thought he would give it a try. He said now that he had tried it, he would never had to eat it again! They both take no medications. They are amazing.

We love their children and grandchildren so today will be a treat. They asked if we could come early to help organize the food and have a good chat before everyone else arrives. No presents were requested but I am bringing some of my homemade Sugar Glazed Walnuts that they love along with a funny card.

Eighty years. Even in my fantasies, I will never make 80 years. I am hoping, praying and wishing for 70 years. We really want to celebrate our 50th Anniversary together. 2023. That is the goal.

Friday, March 23, 2012

Tighter Body

Back in the Saddle again. After a week of rehab, I can really feel the difference in my body. Everything is just a bit tighter and I am once again walking straighter and faster. Amazing how quickly it came back. I did almost my entire routine yesterday in more than three weeks after slowly working up to it all week.

Speaking of tighter, my niece hired a trainer to get her ready for the wedding in May and lost not only pounds but inches. Lots of inches. The problem? The wedding dress was way too big but David's Bridal would not take it in more than two dress sizes. She was considering buying a new wedding dress! At the shower, two of the people recommended an excellent private tailor near my niece's home who would give her an honest opinion of whether the dress would maintain its integrity after about a four dress size reduction. My sister phoned last night with the news. Not only could they do it, they say they can take in up to seven sizes. They just don't take in the side seams, but actually adjust several of the seams. And it was not really expensive.

Mom and I are doing a bit more shopping this morning, sharing lunch together at her home then she is off to the beauty shop. I am preparing for tomorrow. A big day ahead.

Thursday, March 22, 2012

Stairs and Lung Disease

Stairs. I hate them. In the beginning of dealing with my lung disease, when confronted with a set of stairs, I would almost panic. Often, I would have to stop on the stairs to catch my breath before making it to the top. In those days, I would also be in a sweat.

In rehab, we learned to not panic. Panic brings a higher heart rate to the party which make it harder to breathe which brings on the sweat. So, at the bottom of the stairs, I learned to stop, settle my breathing, calm down, begin purse-lipped breathing then slowly climb the stairs. I would make it to the top in better shape and before long, the initial panic stage began to wane. 

Stairs vs Ramps? Ramps are worse. I would rather climb a flight of stairs rather than make a long, drawn out hike up a ramp. 

In mom's new apartment, she is on the second floor. Parking is on the first floor. There is the problem. With her osteoporosis and being bent forward, she is now very short of breath. Does she walk a long way away to access the elevator or does she just do the stairs? She has chosen to just do the stairs. 

Me? After years of avoiding stairs, I find myself having to climb the stairs at least twice every time I am with her. Often, I am carrying groceries or boxes which exacerbates the breathing problem. After a month of doing this, I just do it. I don't even think about having to climb the stairs once again.

I thought I was doing great until yesterday. Michael had stopped by to help set up a grab bar in her bath area. He mentioned that he could hear me struggling to breathe after I did a run down to her garbage area and back while they were working on it. I had not noticed. Maybe I need to slow down, remember to do my purse-lipped breathing and be more mindful instead of focusing on the task for my mom.

Wednesday, March 21, 2012

Feeling Spring

Feeling Spring. After lunch yesterday, it was dry enough to cut the grass for the first time in weeks. Just a cut, edge, blow, water pots and done. Two hours. It felt fantastic. Everything tree and plant is awakening. Magical.

Feeling Spring. I am so looking forward to Easter. We normally do nothing. Really nothing. This year, with my mom so close to us now, we are going to invite her to our house for an Easter early supper. Honeybaked Ham? Lamb? There is time to decide. 

Feeling Spring. We awake to the singing of birds. The bird bath is being used once again.

Feeling Spring. Change is in the air. I don't know what. Things are shifting. New beginnings.

Why do I notice new babies and baby animals and fresh flowers more this time of year? Must be Spring!

Tuesday, March 20, 2012

Recovering

I am feeling better but a bit tired from yesterday. I worked out at the other rehab for the first time in weeks and it was grueling. I reduced the level of intensity and the time on all the equipment, yet I was still short of breath and sweating! It is going to take time to built myself back up to the higher levels.

Emotionally, I am worried my lungs will not fully recover from this bronchitis and I will need to return to supplemental oxygen. There are two sleep study tests schedule in two weeks which will determine my oxygen levels at night during REM sleep.

After working out, I met mom at her house then headed to her first eye doctor appointment for muscular degeneration. They ran her through a variety of tests, gave her a shot in her eye and, three hours later, we headed home.

A long day.

Monday, March 19, 2012

Spring, Shower, Rehab

It was a long day yesterday. The drive up to my sister's house then the final drive to my niece's bridal shower was easy. The shower was fun and I was able to meet all the players, i.e. bridesmaids. It is going to be one fun wedding. The drive home? Well, it was my own personal F1 experience. The only things missing were pit stops!

I arrived home exhausted, slept for ten hours last night and am ready for the coming of Spring today.

We are both feeling so much better this week compared to last week. This is one nasty virus. So, to celebrate, I am going to rehab for the first time in a few weeks. It is too soon to jump into the entire hour routine, so it will do "rehab light." Afterwards, I am driving mom to an eye doctor appointment. She has been treated for muscular generation with shots into her eyes, which have worked very well for her. It is time. It is a new doctor. Today is the day.

It is going to take a couple of day to recover my energy from yesterday's drive and party. Early to bed tonight and another light schedule tomorrow should help.

Sunday, March 18, 2012

My Own F1

Formula 1 season began in Australia, we DVRed it last night and are watching it right now at 6:30AM. As I type this, I don't know who the winner is yet but am pulling for a new kid, Romain Grosjean. Okay, he just landed in the gravel and damaged the car....gone for the race. Another race next week. Keep your eye on that kid this season.

I am going to run my own little F1 race today. In the rain! Mine is 100 miles over two bridges and nasty freeways and traffic to my sister's house where we will drive yet another hour together to my niece's second bridal shower. For this one, I am giving her a gift certificate to Macy's, two small votive candle-sized glasses also made of vintage ruby glass that match the champagne glasses I gave her the last shower and an absolutely gorgeous fine cut crystal red vase. I hope she falls in love with them both.

It is going to be a long drive home as all the skiers will be coming home from the first weekend of good snow up in Tahoe. The bridges will be backed up just about the time I will be driving through this evening. It is going to be a long day but I am feeling a bit better and did nothing yesterday to gather my strength for today.

Turn up the volume! Here I go!

Saturday, March 17, 2012

Fibrosis Across Organs Symposium

An interesting concept. As fibrosis develops in many organs including lungs, this symposium gathered all the fibrosis researchers and experts together in one room to share information and possibly bring forth ideas toward new research. Brilliant!
Below is the e-mail I received from Mishka Michon from The Coalition for Pulmonary Fibrosis  and the press release from the American Thoracic Society:
"The Coalition for Pulmonary Fibrosis was proud to co-sponsor the first Fibrosis Across Organs meeting that was held last week in Denver, Colorado.  This breakthrough meeting was convened by our partner, the American Thoracic Society (ATS), and was the first meeting to bring together experts in heart, lung, kidney, liver and skin fibrosis.  The goal of the meeting was to uncover similarities of the diseases and spur ideas to move the science forward in all organs.  While lung fibrosis (pulmonary fibrosis) doesn't yet have a treatment or cure, this meeting may help to spur future research to move us faster to answers.  Please read the ATS' press release below.
Sincerely,
Mishka Michon, CPF CEO
American Thoracic Society News Release
First Fibrosis across Organs  Symposium Provides Direction for Future Research and Treatment Efforts in  Fibrotic Diseases
 
Global experts in lung, liver, kidney, heart  and skin fibrosis meet to discuss similarities and differences of fibrotic  diseases that affect millions worldwide- collaboration  could drive future treatments and cures
Denver, Colo., March 13, 2012  – Experts from around the globe gathered in Denver over the weekend for a workshop in fibrotic diseases that exist in different organ system, including  the lung, liver, kidney, heart and skin and claim millions of lives.  These discussions will advance the understanding of diagnosis and treatment in these organ systems.  Most fibrotic diseases are progressive, irreversible and ultimately deadly.
The American Thoracic Society  (ATS) convened the meeting March 8-11 to bring together top scientists, researchers and physicians from academia, clinical practice and industry to identify the shared molecular and physiologic responses operative during tissue  injury and repair. More than 60 participants from around the world attended the meeting.
“The ATS was excited to be the first to offer a meeting of this kind to explore and identify new pathways  to  discovery in fibrotic diseases,” said ATS Executive Director Steve Crane,  PhD, MPH. “It was an impressive collaboration of  experts in different specialties that we  believe will advance the speed of discovery and move us faster towards  treatment and cures.”
The meeting’s objectives were to set the scientific priorities for future investigations in single organ and  cross-organ fibrotic disease, assess the currently available experimental  models and their relevance to human health and disease and  to identify  potential promising therapies for pathologic tissue fibrosis, including  idiopathic pulmonary fibrosis (IPF), also referred to as simply pulmonary  fibrosis (PF) or lung fibrosis and fibrosis that occurs in the heart, liver,  kidney and skin.  “The physician and research participants at this meeting covered a lot of ground in a short period of time  and worked to identify the directions we should take in the area of fibrosis,”  said Gregory Cosgrove, MD, chair of the Fibrosis Across Organ Systems  Organizing Committee  and a pulmonologist  at National Jewish Health in Denver.
“The real success of this meeting will be measured by its impact on research into diseases and the lives of the patients who suffer from them and the stimulation of similar meetings around the world.”
“We all work in silos and we’ve broken down the barriers of our silos here,” said William Travis, M.D., a pathologist at Memorial Sloan Kettering Cancer Center. “We go back to our areas to work outside of the box and work with other specialty areas.”
The meeting was organized by a group of physicians, academic experts and patient advocates, including the  meeting’s founders, John Tosi, DDS and his wife, Teresa Barnes who chairs the  ATS Public Advisory Roundtable (PAR) and is vice president of the Coalition for  Pulmonary Fibrosis.  Other committee organizers were Kevin Brown, M.D., a pulmonologist at National Jewish Health;  Dennis E. Doherty, M.D., pulmonologist at University of Kentucky and the  Lexington, Kentucky Veteran’s Administration (VA) Medical Centers; and Dolly  Kervitsky, RCP, CCRC, an experienced respiratory therapist who is vice  president of the Pulmonary Fibrosis Foundation.
The outcomes of the meeting will include a “Fibrosis Roadmap” for multidisciplinary and inter-institutional investigations that will published in a scientific journal.  “It is our intent that with a multidisciplinary approach, advances in our understanding in one disease may foster understanding in different fibrosing diseases so that exponential rather than incremental advances will be achieved,” said Dr. Cosgrove."

Friday, March 16, 2012

Medicare Set-Aside

I just received a notice from Social Security regarding my Workmen Comp settlement. They were shocked, just shocked that I had settled (2009) and wanted me to fill out a ream of forms. So today, that will be the focus.

It will begin with a copy of the settlement including the information regarding what was covered in the Medicare Set-Aside. My set-aside amount was just short of $100,000, an amount that both Medicare and the WC insurance company agreed upon in the settlement. The money was paid from the WC insurance company to me to be put into a separate bank account. It is money to be set aside for specific medical costs regarding my lungs for the rest of my life. The idea was that I would be billed by Medicare to re-pay those costs to them. These specific costs include things like rental of oxygen equipment, CT Scans, pulmonary doctor visits, that sort of thing. No medications were included in the set-aside.

In all these years, I have received two bills from Medicare. I paid them both but received a credit check from Medicare which was to pay back one of my checks. I didn't understand why but I deposited that credit back into the Medicare Set-Aside account. Haven't heard from them since.

So also today, I will include all those correspondences, copies of my check register, latest bank statement where the funds live, write a cover letter (forget the forms) and send them off via registered mail.

All in all, it should take about three hours to organize, write, copy and get everything sent off.

During the entire process of dealing with Medicare and all the lawsuits beginning in 2005, I often wondered how people who were not very literate or organized or healthy enough to deal with the endless paperwork got through it all. It is totally exhausting. Today, is just another example of that.

Thursday, March 15, 2012

Back in the US

Better. I am definitely feeling better. Today will be a quiet day with a little clothes shopping with mom and an extra hot bowl of sweet and sour soup for lunch. We will be dodging rain drops throughout the day.

Our son was on a month long multi-country tour with the big group and we got a phone call from him last night. He is home but still a bit messed up with jet lag. He and Kimberly have three weeks together before they take off again on their respective tours through the US for the next month. He had hilarious stories to tell about all the countries and concerts and food. As a mom, I was thrilled to hear that he didn't get sick even after a dozen flights between all the concerts.

What made my heart sing, is that he and the big group will be across the bay from us for three days of concerts and press. He is planning to take BART between commitments to visit us so he can see my mom and her new place. How sweet is that?

Wednesday, March 14, 2012

ILD Support Group - February and March

Palliative Care described by the World Health Organization
I missed another ILD Support Group this week due to illness. A pity since I learn so much each month and have developed nice relationships with many people in the group. 

The meeting was about oxygen, the different delivery systems, portable oxygen systems and the latest products on the market. I am always interested though I am going through the process to remove all the supplemental oxygen from my life for a time, though I am sure I will need it once again in the future. 

In February, a local hospice organization presented to the group. The worry that we with lung diseases have is what happens at the end, the struggle for the last breaths. I really worried about it. I don't want to struggle and gasp for air. 

Thanks to Susan, I learned that most hospice organizations have a multi-discipline and treatment team for each patient, which includes care-giving and resources for family members. The presenting hospice group is opening a palliative care center specifically for lung patients at my university hospital. Under hospice, one of the medications discussed for lung patients to receive is a small dose of a narcotic (e.g., vicodin, morphine) to help alleviate shortness of breath. A very small dose can overcome the body's desire to breathe hard (leading to panic mode), and actually helps slow down the breath so the body is not straining to bring in air, which it is unable to do. Makes sense to me. There is no thrashing or gasping or fighting for those last breaths. No feeling of being suffocated. 
 Somehow, that information is very comforting to me as I hope it is to you, dear reader.

I guess my wish is that I die of untreated pneumonia before the lung disease progresses to its expected conclusion. Hopefully, not for a few more years!

Tuesday, March 13, 2012

Results of Lipitor and Fish Oil

Miraculous. Just over a month of taking 4,000mgs of fish oil and 10mgs of Lipitor, the numbers are in and they are fantastic. Numbers are compared to a year ago:

Total Cholesterol was 272 now 192 <200
Triglycerides were 195 now 128 <150
HDL was 48 now 58 >39
LDL was 185 now 100 <130
Chol HDL Ratio was 5.7 now 3.3 <6
Non HDL Cholesterol was 224 now 134 <160

Such a difference. I feel no side effects from either the fish oil or the Lipitor.

Yesterday, mom and I went to visit her back doctor. He was concerned at her weight loss - she is now down to 105 pounds - and has set up a referral for a primary doctor in their system. They also seriously discussed the possibility of the intense 18 hour back surgery to straighten her spine. Gruelling. But, it would improve her quality of life as she is greatly out of breath and has a hard time walking for any distance or a normal pace. Her back is so pitched forward, it is putting a strain on her lungs. For the first time, she is considering the operation and its two year complete recovery time.

In the meantime, he said that she would have to put on weight for them to even consider beginning the process to see if she is a good candidate for the surgery. I took her out for a grilled huge hot dog after the appointment! I am doing my part!

Monday, March 12, 2012

Scary PFTs

So here's the drill. While in Dr. K.'s office last Wednesday, I did two quick PFTs which reported my spirometry down 10% and my DLCO was down from 14 to 11. Clearly, bad things were happening in my lung.

That totally scared me.

She prescribed 20 days of 250 mgs of Ceftin twice a day with food. That is a lot of days. I think I totally scared her, too.

What scared me more was her next statement that if I was not better soon, I was to call her. I envisioned a hospitalization filled with IVs of antibiotics. The goal is to clear my lungs so they don't continue onto pneumonia or further plummet to a possible need for transplants. Yikes.

It was enough for me to fold my tent and stay housebound through the last four days. Today, I am headed back into the world but am going to tread carefully. Mom is meeting with her back doctor and I want to make sure she gets the proper referrals for other doctors in the area. Afterwards, we have to do a quick stop at Best Buy and lunch. That's it. Then it's back to the couch.

I have cancelled tomorrows ILD Support Group and lunch beforehand with Susan because I still am dripping and coughing. It would be awful to pass this around. Also, I wasn't too sure it would be good for me to extend myself so much too soon.

I feel like a kid with one toe dipped into the water to test the temperature.

Sunday, March 11, 2012

Still Hibernating

My butt will still be on the couch again all day today and I even slept on it last night. Michael was feeling worse so he got the bed. We both are feeling better this morning and planning to go back out into the world on Monday after four days being housebound.

It is a mental struggle for me when I feel this ill. All the memories of the early fears with my lung disease come flooding back. I also worry that the antibiotics won't work and a hospital stay is in my future. Or worse. Those are enough worries to keep me from overdoing it.

I have been watching my calorie intake as I have not been exercising but last night I just wanted some hot and sour soup to clear my sinuses. Michael went out into the world to pick some up. This morning, my hands are swollen and huge! We both didn't feel very well after it, too. After eating such clean and healthful food for a couple of years, this really had an effect on us. Never again. I am going to drink lots of water today to get it out of my system!

Saturday, March 10, 2012

The Benefits of Physical Activity


Another article published in a bi-monthly publication by the Department of Pulmonary Rehabilitation at Seton Medical Center (again, this is not the facility where I do my rehab nor it is the university hospital where I am treated for my ILD) is about the benefits of physical activity.

“The volume and strength of evidence supporting the importance of physical activity continues to grow. The minimum amount of physical activity for reduced mortality ad extended life expectancy: a prospective cohort study by C. Wen and colleagues was published in the Lancet October 20, 2011 issue. The study analyzed 416,175 individuals in Taiwan between 1996 and 2008 with an average follow-up of eight years. The study compared an inactive group to those who had low-level activity. Those exercising for 92 minutes per week or 15 minutes a day had a 14 percent reduction in all causes of death and lived an average of three years longer. Every 15 minutes of daily exercise beyond the minimum of 15 minutes per day improved all-cause mortality by 4 percent regardless of age or sex.”

In a word – exercise. Consistent exercise. Minimum of 15 minutes a day. I do an hour for five days a week. On Saturday, I work for two to four hours in the yard. I can attest to the better quality of life with a lung disease due to exercise. Again, if you have a lung disease, discuss the possibility of pulmonary rehab with your doctor. It will change your life.

Friday, March 9, 2012

Pulmonary Rehab Study for COPD Patients


While I was in Dr. K.’s waiting room, I read a lot of the data on new research. This was interesting: Pulmonary Rehabilitation following Exacerbations. It was published in a bi-monthly publication by the Department of Pulmonary Rehabilitation at Seton Medical Center (this is not the facility where I do my rehab nor it is the university hospital where I am treated for my ILD).

To quote the article:

Medscape’s top story form the Pulmonary medicine Best Evidence Newsletter from 12/14/11 was a review article of pulmonary rehabilitation following COPD exacerbations published by Milo Puhan and colleagues in the Cochrane Database. The review, update on October 5, 2011 evaluated the impact of pulmonary rehabilitation on hospital admissions and other important outcomes such as quality of life and survival. Nine studies were included. Pulmonary rehabilitation reduced hospital admissions and mortality compared with usual community care (no rehabilitation). Quality of Life also improved and the effect was substantially larger than the minimal important difference. Pulmonary rehabilitation appears to be a highly effective and safe intervention in COPD patients after suffering an exacerbation.”

Interesting. Once again, proof that pulmonary rehab improves quality of life in patients dealing with COPD. I believe it is also true for any lung disease, including ILDs. If you are dealing with a lung disease, please find a good local pulmonary rehab program and go. Every day. Your life will be enhanced and you will life longer with a better quality of life. That is true from my personal experience.

Thursday, March 8, 2012

Stopping

Stop! Now! Those are the orders.

I had an appointment with my lung doctor yesterday. I looked horrible. I was coughing, my eyes were running along with my nose and I sounded awful. She said she didn't want to spend much time alone in a small office with me. I noticed her washing her hands the moment I left.

The diagnosis:  Acute Bronchitis

I am on major antibiotics for 20 days with orders that if I am not feeling better soon, I must go in for a chest x-ray.

So, we cancelled our dinner out with friends last night. Cancelled all rehab. Cancelled orchestra rehearsal. Cancelled Friday's rehearsal with the young violin students. Cancelled everything until Monday. Then, if I am better, I will take my mom to her back doctor and get referrals for all the other specialists she needs to see.

Michael is also sounding horrible but his immune system has kept his to just a cold. He sounds awful but feels fine. He slept on the couch last night because he really doesn't want to get bronchitis. Did I mention that we have two other beds in the house? No, he insisted on the couch.

So, I am hoping for warm sunshine later in the weekend but for today, I am staying in bed all morning! I hate being sick. I really want to get better soon. I need to remember to just stop.

Wednesday, March 7, 2012

American Dream

Thirty-seven years ago, a young college graduate along with two other friends hit the shores of our country from Great Britain. They bought a horrible Ford Pinto and drove west to begin their new lives. They already had jobs lined up: One in Oklahoma City as an architect, one in LA as an engineer, one in SF also an architect.

We knew all three:
While traveling, we have stayed with Anthony in Oklahoma City. It was fun to listen to him speak with a British accented punctuated by a southern twang. He owns a huge, very successful design firm there.

Space Mirror Memorial
We are invited to an annual Christmas Party in a beautiful mansion along Golden Gate Park with the family of the SF architect. Paul died of colon cancer 10 years ago and Michael makes sure the magnificent cars he left behind are in good shape for his wife and children. He owned an extremely successful firm in the city and was awarded the job of designing the Space Mirror Memorial to the Challenger's crew.

Then there is Don. We met Don and the other two when he and his family moved into our area. His daughter and William are the same age. After his divorce, he moved into a very hip loft in the city but our relationship with him grew even deeper. He is now one of our best friends and he even became a citizen a few years ago. He still has his lovely British accent and when people ask him where he is from, he always replies, "Arkansas."

Today is the anniversary of the first day they landed in the United States. Tonight, we have 9:30 reservations at Roy's Restaurant to celebrate this event along with the owners of our favorite restaurant, Chez Papa.

In effect, he and the others are the quintessential American dream. They came. They worked hard. They became successful.

Tuesday, March 6, 2012

Pretend it is Morning

I missed blogging this morning. Clearly ran out of time. Sweet Michael awoke with me when the alarm went off at 5:00AM and put on a pot of coffee. I was out the door by 5:30AM and at mom's by 6:00AM. Ouch!

We drove the 100 miles to her old house, washed all the tile floors and the kitchen and bathrooms before vacuuming everything including the garage. Mom was helping even after falling and breaking a rib a day ago. We packed everything up, said goodbye and locked it all up. A quick stop at the title company, a few signatures and it was no longer her home. Afterwards, we met some of her Bridge playing buddies for a sweet, simple yet touching goodbye lunch.

Then, 100 miles homeward, a call to Comcast to hook up her new modem (which I failed to do. Guy coming tomorrow), packed up the trunk with more donations to St. Vincent de Paul and headed home. Thankfully, Michael picked up some dinner and we arrived at the same time.

What a day. To say I am exhausted would be an understatement. 

Tomorrow is going to be even wilder. More about that in the morning!

Good night!

Monday, March 5, 2012

Quaking

Summer was here for a couple of days. It is gone now. This morning is full of fog and a 4.0 earthquake! It was many miles from us on the Hayward fault but shook us out of bed at 5:36.

The day will be filled with a dentist, a rehab, a charity and a mom. My mom. I left her alone yesterday for the first time since her move closer to me. I felt like a young mother sending her child out the door to play with the other kids. Hopefully, she found her way to our old church where Michael and I met then had her frozen yogurt for lunch, which is right across the street from her new home. I am sure she will be surrounded by empty boxes that she has unpacked when I see her this afternoon.

I did some yard work yesterday and I cannot stress enough how well I am breathing. I am wondering if it due to the rather new addition of fish oil and it anti-inflammatory properties. On Wednesday, I am meeting with my lung doctor, Dr. K. It will be interesting to see if my numbers have increased. On Thursday, my oxygen supplier will be delivering the equipment for an over-night spirometry test to determine if I still need supplemental oxygen at night.

So, an interesting week began this morning with a good shake-up. We'll see if I can shake up the whole week!

Sunday, March 4, 2012

A Day Off

 So far, I am still well but am being very careful to cool my jets today. I want to cut the grass and water the garden. That's it!

We had a wonderful time yesterday but it was a lot of stress driving though the city, over a very busy bridge, though congested cities, over another bridge, onto another freeway to a rural area then to our destination: a bridal shower. One hundred miles away, one way. 

Mom and I talked non-stop the entire trip. 

We attended the "old lady" shower as the one with the younger bridesmaids and her friends will come later. Thankfully, Shelley also invited me to that one.

It was in a great restaurant in a former hardware store in a very old city. I loved the exposed brick and the space was just beautiful. I had a Kobe burger with fresh green beans. It was wonderful. 

All the presents had been opened, including the vintage ruby red glasses from my sister to her daughter, when I handed her my gift bag. It was a total surprise to her. It was the set of 100-year old vintage ruby champagne glasses that match the glasses her mom had just given to her. She started to cry. The entire collection was reunited.

We took a different way home because of an accident on a bridge onto freeways I had never driven before back to mom's home. When I drove the final leg of the trip over the pass to our home, I had the top down on the convertible, a Chris Isaak's CD playing and the lovely warm breeze mussing my hair. Heaven.

Michael met me in the driveway. He had set up the large garden umbrella, had the fountain on, appetizers waiting and we sat to enjoy the setting sun sharing all that had happened during our day apart from each other. We were both in bed and asleep by 8:00! 

Saturday, March 3, 2012

Shower

Last evening, we left mom’s early enough to avoid the Friday rush hour and sat in the garden to watch a setting sun. It was a lovely way to end an exhausting but very satisfying week. There is still much to do but mom is getting settled in.

I have once again learned so many life lessons watching her during this transition from her home to the independent living community. She is focused and positive and puts one foot in front of the other to keep moving forward. One strong woman. No procrastination. No tears. No regrets.

Shower will be in this
remodeled hardware
store with lots of
exposed brick
We are taking today off to be with my niece for her bridal shower this morning. No unpacking. No washing. Nothing but a lovely lunch and having a nice time with a group of girls. Yes, I am going to have to drive 200 miles there and back but it will be worth it. Sunday, I am taking the day off for my gardening and laundry and not a whole lot else.

Again, the goal is to not get sick. So far, so good. Fingers crossed!


Friday, March 2, 2012

Endless Boxes

It was almost surreal to get home from mom's last night. The housekeepers had been here, it was spanking clean and felt huge. We had been working in her new one bedroom apartment and were completely overwhelmed as the movers kept bringing in boxes after boxes. I swear, they almost touch the ceiling! She has too much stuff.

After Chip and Betty headed back to New Mexico, we took my clearly exhausted mom out to get some meat into her. There is a decent - for California - BBQ place with great pulled pork near her apartment. She loved it. She also promised that she would go to bed and not do any more unpacking until the morning.

Today, I have to run to the city for a fasting blood test then meet her back at her apartment. I have to show her where the CSAA office is for her renters insurance and the cheapest gas station and her new bank to transfer her account. Then, we will begin to unpack more boxes.

My health? I am worried that I am feeling worn down already. Just recovered from the last cold, I don't want to get sick again. Michael is keeping and extra eye on me. The boxes will continue to be there and we can take our time to get them all sorted out. I guess I just want her to feel settled as soon as possible. But, I really need to not over do it. It is so hard!

Thursday, March 1, 2012

Life Markers

Mom's new home. Not too bad!!!
Anniversaries, birthdays, birth of a child, buying a house, starting a job. All personal life markers. Every other event somehow relates to those dates and numbers.

Today is another personal life marker in our family. It is the day my mom moves into an independent living facility and it is going to be one long day. The house is packed up and the movers will arrive early this morning along with Chip and Betty. Michael and I are meeting them all at the new place just over the pass from us. Betty and I have committed to getting mom's bedroom set up, her bed made, the basics unpacked and in place in the kitchen, her medications sorted and food in the refrigerator. They head back to New Mexico tomorrow so I will help mom get the final boxes unpacked and everything in place after driving to the city for a fasting blood test.

After an exhausting two days, we will drive the 100 miles on Saturday to be with my niece for her wedding shower, an events we would not miss for anything. I hope to not get sick from it all. The past several days, I have been really careful to exercise, eat well and trying not to do too much.

Here we go. It is lightly raining but we hope it stops when the actual move happens.

A remarkable day. A personal marker.