Living Well with a Bad Diagnosis - Lung Disease

Wednesday, November 30, 2011

Exciting Stem-Cell Research News Regarding Lung Diseases

Lung Stem-Cells and Airway Repair
Thanks to Susan and the ILD Support Group, I received this very exciting information for those of us with an ILD and the resulting fibrosis. There is hope.

The damaged done to our lungs is most often to the alveoli, which makes diffusion difficult and a hallmark of the disease. Stem-cells are repairing the damage in mice during the latest research. The most exciting quote from the article is: "It's too early to say common lung diseases will be treatable, but it's a start, and there's a lot of potential.”
Stem-cell find breathes new life into lung repair
         14:12 28 October 2011 by Andy Coghlan
         For similar stories, visit the Stem Cells Topic Guide

There is new hope for heavy smokers, people with asthma and those with
chronic lung scarring. Stem cells have been discovered that rapidly rebuild alveoli, the tiny air sacs in lungs – a finding that could herald new treatments for people with damaged lungs. Meanwhile, a signaling molecule that drives regeneration of lung tissue has also been found.


The hitherto unknown stem cells were identified after researchers infected mice with a variant of H1N1 almost identical to the one that caused the Spanish flu pandemic of 1918. Another variant of H1N1 caused the 2009 swine flu pandemic.
Other lung stem cells have been studied already, but they were grown from embryonic stem cells. The new cells occur naturally within the lungs.
Samples taken from the mice showed that straight after infection the virus destroyed over half the original tissue in alveoli – the sacs in lungs vital for absorbing oxygen from inhaled air. Just three months later, however, all the tissue had naturally repaired itself, thanks mainly to the newly discovered stem cells.
"We saw essentially pristine lungs at three months after a loss of 50 per cent of lung tissue," says Frank McKeon of the Genome Institute of Singapore, who led the team.
Multiply and repair
The stem cells multiplied rapidly, creating hundreds of times their original number within a week. Then they migrated to sites of damage where they formed pod-like structures as a prelude to becoming new air sacs.
McKeon's colleague, Wa Xian at the Institute of Medical Biology in Singapore, isolated similar cells from human lung tissue and found that they form the same pod-like structures.
McKeon says that they have probably not been discovered before because the damage caused by the flu virus is more amenable to repair than that caused by bleomycin, a drug usually used to deliberately damage mouse lungs in experiments.
McKeon says the best hope for treating damaged may be through identification of the key signaling molecules that order the cells to rapidly multiply and migrate to sites of damage. With his colleagues, McKeon is now screening potential growth factors in fluid from repair sites in the mouse lungs to work out which do the job. "There are probably 20 to 30 of these factors that we're looking at," he says.
Injecting the right growth factor could aid healing in people with both acute and chronic lung damage. "It's too early to say common lung diseases will be treatable, but it's a start, and there's a lot of potential," says McKeon.
Chemical boost
A different group of researchers has managed to identify one such chemical that can drive the regeneration of alveoli – a development also published this week.
"The key is that the blood vessels turn on the pathways for regeneration," says Shahin Rafii of Weill Cornell Medical College in New York City, who led the team. "The cells lining the vessels produce growth factors that trigger it, and the main one is MMP 14, standing for matrix metalloproteinase 14," he says.
Rafii and his colleagues discovered the chemical when they removed one lung from mice, triggering extra alveoli to grow in the other lung. By deliberately blocking the effects of MMP 14, they demonstrated that it was the key factor needed for regeneration – although they did not explore exactly how regeneration occurred.
"The therapeutic potential is tremendous," says Rafii, who is hoping to develop treatments for smoking-related diseases and other illnesses that damage lungs. One option might be to extract cells from the lining of a patient's blood vessels, activate them to produce MMP 14, multiply them and reinject them into the patient.

Tuesday, November 29, 2011

Christmas Movies and Music

Last weekend, Michael and I began our tradition of watching specific Christmas movies. The first one is always the original Home Alone. We both applauded at the end. Yesterday afternoon, I watched White Christmas and sang along with all the songs. It always brings tears to my eyes.

We still have to watch National Lampoon's Christmas Vacation and Love Actually. Oh, and Miracle on 34th Street. The original one.

These movies encourage the holiday spirit to begin to seep into my body. I find myself listening to the radio station in the car that plays Christmas music 24/7 from Thanksgiving to Christmas. I sing along while driving. When I hear Bing or Burl Ives or the Andrew Sisters or Mel Torme or Frank Sinatra it brings back all the feelings of the magic of Christmas from my childhood.

With the horrible economic news and political upheaval, it is so nice to ignore it all and sing about Frosty. Or Rudolph. Or Santa. Or the Little Drummer Boy.

Go and do whatever it takes to get you in the spirit. It is a lovely thing to have in your heart.

Monday, November 28, 2011

She Let Go

I received this from my aunt's step-grandchild who is around my age. She has been struggling with colon and lung cancer, both gone at the moment. This poem really hit a chord with me as I am one to like control when, actually, having a bad diagnosis means absolutely no control of anything. I have been trying to let go and just let it be. Then this arrived in my e-mail box: 


She Let Go
Without a thought or a word, she let go.
She let go of fear.  She let go of judgments.  
She let go of the confluence of opinions swarming around her head.
She let go of the committee of indecision within her. She let go of all the ‘right’ reasons.
Wholly and completely, without hesitation or worry,  she just let go.
She didn’t ask anyone for advice. She didn’t read a book on how to let go.
She just let go.
She let go of all the memories that held her back.  
She let go of all of the anxiety that kept her from moving forward.
She let go of the planning and all of the calculations about how to do it just right.  
She didn’t promise to let go.
She didn’t journal about it.
She didn’t write the projected date in her Day-Timer.  
She made no public announcement.  
She didn’t check the weather report or read her daily horoscope.
She just let go.
She didn’t analyze whether she should let go.  
She didn’t call her friends to discuss the matter.  
She didn’t utter one word.
She just let go.
No one was around when it happened.  
There was no applause or congratulations.
No one thanked her or praised her.  No one noticed a thing.
Like a leaf falling from a tree, she just let go.
There was no effort.  There was no struggle.  It wasn’t good.  It wasn’t bad.
It was what it was, and it is just that.
In the space of letting go, she let it all be.  
A small smile came over her face.  
A light breeze blew through her.
And the sun and the moon shone forevermore.
Here’s to giving ourselves the gift of letting go…
There’s only one guru ~ you.

Sunday, November 27, 2011

Sunrise Thoughts

Full disclosure - not this morning's exact sunrise but looked very much like this.
Right now: Pink sunrise. Warmer. 60's due later today.

Last year, we were freezing. It was an extraordinarily cold and wet fall and winter. This year, the doors and windows will be opened to let fresh air flow through the house.

William and Kimberly are in New York for a week. A vacation after months of being on the road with the band. I wish we could be with them. Even with the improvement of my health, I still can't fly, still can't be around groups of people, still no immune system due to the drugs.

Which leads me to jury duty. Remember just a few months ago when Michael was excused because he was the sole support of a disabled wife? Well, I guess they just wanted to be sure he was not lying. I got a jury summons in the mail yesterday. The permanent excuse written by Dr. K. three years ago has, by their rules, expired. I will phone her office on Monday to ask for yet another written doctor's excuse and pick it up on Thursday. Imagine me, with no immune system, sitting in a huge jury room with people who have a cold or flu who must show up then, if picked, sitting for seemingly endless hours in a chair during a trial. I have sat on three juries in my life. Enough.

Which leads me to Thursday. Liver Clinic day. I am nervous to get results of the liver and belly scan. I am also a bit nervous to drive the new car into the city for the first time.

Which leads me to today as we are planning to put the top down on the car and head over the hill. The problem? Now that pumpkin season is over, tourists are now flooding the pass to buy and cut down their own Christmas trees. We may have to take the long way home, which is not a bad thing in a convertible.

Saturday, November 26, 2011

Just Another Miracle

So I was in Trader Joe's yesterday and was frantically searching for shredded cabbage. They were out of it last week and I really missed it. I made some kind of noise, grabbed two bags and clutched them to my chest. A women standing next to me looked very surprised. I explained they had been out. She asked how I prepared it. Raw with dressing. Like a slaw.

Thus began a conversation that continued throughout the store. As her story unfolded, I learned that her husband retired from my university hospital where she had been nurse and that she was dealing with horrible allergies or a lung disease. Some doctors said allergies. Others said lung disease. As she described her symptoms and answered some of my questions, it was a good chance she had an ILD. When she asked what caused my disease, she paled. She then explained that they discovered a huge infestation of mold in their house and recently had it removed.

She also said that she had no stamina. I told her about Pulmonary Rehab and that it would help her so much. In fact, her local pulmonologist is the overseeing doctor for the program.

Another connection was that close to 30 years ago, her daughter went to the school where I got sick. What are the odds?

In our last aisle before we said our goodbyes, she said that God had brought us together. She had been at the end of her rope and had prayed for guidance.

Shredded cabbage. Changed a life.

Friday, November 25, 2011

Lucky Man

I hope everyone enjoyed their Thanksgiving Day yesterday. We loved seeing everyone and ours was delicious and oh, so easy. Restaurant reservations at 2:00 and home in bed by 8:30. Thanksgiving often ends with a long drive home around midnight. It feels so good not be exhausted this morning. The plan today? Rehab, butcher and Trader Joe's.

My friend Barbara sent a book for me to read that I just finished. It was “Lucky Man” by Michael J. Fox. It was about his life and his diagnosis and living with Parkinson’s disease. It was shockingly honestly. Brutally honest. He wrote a lot about his struggle with alcohol, living in the bubble world of the famous, his continued love for his wife and children and his relationship with his parents and siblings.

What I found so interesting was that he refused to see another neurologist after his diagnosis. Ignored the disease until it could not be ignored. He spent many, many years hiding the symptoms from everyone, including his wife and son.

In the end, he concluded that the 10 years since the Parkinson’s diagnosis have been the best of his life. He was forced to live an honest life with all feelings and frailties exposed and became stronger because of it. He called it a gift that keeps on taking!

It is good read. Worth it.

Thursday, November 24, 2011

Happy Thanksgiving



Just a note to you, dear reader to wish you and your families a Happy Thanksgiving. Gather them closer around you today. I find that every year that I am still alive and living with a fatal disease becomes more dear.

We are having a Thanksgiving lunch with all the trimming in a restaurant for the first time this year. It is also the first time that it is really not about the food but about being together. That is why this a such a favorite holiday of mine. Nothing is expected but being together. The best.

To my dear readers from all over the globe, please hug your family a bit closer today. Mentally create a list of everything you are grateful for. It is nice to stop and consider what is good in life instead of all the bad.

All the best to everyone!

Wednesday, November 23, 2011

Breakfast Date and a Recipe, Too!

A date. A breakfast date this morning. We are going to head over the pass to the Avenue to a tiny, funky restaurant which holds lots of memories for us. When I was working at the school, we would drive there early in the morning, have a nice breakfast together then kiss goodbye on the sidewalk and head to our workplaces. When I was sick, we would continue to go there on occasion as it felt like some kind of normalcy when nothing was normal anymore.

We have not been in quite awhile. Michael has been dreaming of their oatmeal pancakes. I will have the egg beaters and chicken apple sausages and forgo their marvelous potatoes and toast.

We will kiss goodbye on the sidewalk and head in different directions - he to his shop, me to the other rehab just a few miles away.

I will not be carrying my oxygen to rehab anymore. As of yesterday, I am totally oxygen free. The saturation rate stayed above 89% at all times. In fact, the average on all the machines was between 91% and 94%. All good enough. First time in six years I have been oxygen free except at night. We will contact Dr. K. next week to arrange a sleep study to be sure I don't need it at night.
After rehab, I am making Pumpkin Gingerbread Cake Balls dipped in white chocolate as little take home gifts after Thanksgiving dinner. The recipe is here: http://www.blunderconstruction.com/2011/11/pumpkin-gingerbread-cake-balls.html

Tuesday, November 22, 2011

Liver Sonogram, Autos, Thanksgiving

The liver sonogram yesterday was interesting. It was of the entire belly as well as a Doppler recording of all the liver's veins and arteries. Funny to hear the blood rushing through. Sounded good to me but what do I know? The meeting with the liver doctor to talk about all the past 6-months of fasting blood tests and the sonogram will be December 1st. I so don't want a biopsy.

The new car is now a happy car. All the mechanical work is finished and, as of yesterday, it is now wearing new tires. Michael plans to paint it next Spring. In other car news, Michael heard a weird sound in the 1994 840 BMW last week and discovered that a major bolt holding the tensioner for the AC belt had sheered off. Had he continued to drive, it could have ruined the entire motor. Thankfully, the dealership had the bolt, Michael worked to fix everything and came home with grease on his hands. He hates grease. We felt we dodged a bullet and so happy that we decided to buy another car to replace it.

Lots of family stress around Thanksgiving for the first time ever. We have always had such a close family but now that we have to adjust for my 83-year old mom's broken bones and my health, two people are not happy. They called last night to let me know how unhappy they were with the changes in the traditions. I explained my mantra - adjust and keep moving forward. We have to adjust for mom and for my health now and in the future if we want to be together. Don't know if it was heard.

Since I couldn't work in the gardens this past weekend, I went over the hill to rehab both Saturday and Sunday. I felt a noticeable difference in my breathing and movement. I feel loose and more limber. So, I think I am going to try and workout on the weekends this winter when I can't work in the yards.

Today? Dentist then the rehab class with the rehab boys Sherman and Dick while the housekeepers are here making the house clean and pretty. I also was handed the keys to the new car this morning, which I will be driving everyday beginning today. Exciting.

Monday, November 21, 2011

BREATHE Bulletin and IPF Summit 2011 Webcast


Thanks to Susan who passed this information along to all of us on the Yahoo ILD Support Group, I have found the new and past issues of Breathe Bulletin to be full of information. Also below is information regarding the Webcast on December 3rd. Thanks to the pulmonaryfibrosis. org people for both. 

New Issue of BREATHE Bulletin!
The latest issue of the BREATHE Bulletin is now available to view on our website at:

IPF Summit 2011 Live Webcast
Registration for the IPF Summit 2011: From Bench to Bedside is officially full. If you are unable to join us this December in Chicago for the Summit you can "virtually attend" via a live webcast.
We are pleased to announce that anyone with internet access can view the Summit in the following ways:
On Saturday, December 3rd:
A live webcast will be available through a link on our website, www.pulmonaryfibrosis.org.
A live satellite webcast will be available at 12 sites throughout the US and 3 sites in Canada.
Following the Summit:
During the week of December 4th the entire webcast will be available through a link on our website.  
Early in 2012 an on-demand webinar will be available through the PFF website. Specific sessions or the entire program can be viewed.
For more information about the webcast or satellite viewing sites please visit www.pulmonaryfibrosis.org/summitwebcast or call 888.733.6741.
We will send out notification through email with a link for the webcast and instructions prior to the Summit.  If you have any questions please contact Lyla Conrad at lconrad@pulmonaryfibrosis.org or 888.733.6741.   
More information on the webcast can also be found on page 4 of the latest BREATHE Bulletin.

Sunday, November 20, 2011

Just a Sunday Looking at Monday

It poured last night. It is wet and cold this morning. The heater is working - thank goodness - and the coffee is fresh, hot and strong. The 49ers are playing today. But, we have a bit of errands to do this morning.

Michael got the new car back from the mechanic yesterday where it now sits in our driveway. We have to shuttle the BMW from his work back to the house today. As an added bonus as long as I am over the hill, rehab calls to me. I must go. Only then, I will feel ready to watch the game.

Dinner is already made - leftovers from last night. Chicken Pizza. Not what it sound like. Diagonally sliced raw chicken breast on a cookie sheet topped with spices, a bit of pizza sauce topped with a bit of pepperoni, sliced mushrooms and sliced green pepper. Roasted for 25 minutes then topped with low-fat mozzarella cheese and cooked a few more minutes. Dinner. Michael had a salad with his. I may have some green beans with it tonight.

I am always a bit nervous when I have to drive into the city to the other university hospital campus so far away. The liver sonogram is tomorrow morning at 8:00AM. No food or water beforehand. It often takes 90-minutes to get there so I will have to leave at 6:00AM. Pre-dawn. Hungry. No coffee. After the scan, I have to have my last fasting blood test for the liver clinic in anticipation of the December 1st appointment. Afterwards, I am going to eat a quick cheese stick and head to the other rehab to work out.

But today, I will enjoy my Sunday looking ahead to Monday.

Saturday, November 19, 2011

Saturday Plans and Rehearsal Review

It rained yesterday afternoon. Hard. No yard work for me today. Nuts!

The plan: To work out at the other rehab this morning. Rare for me on a Saturday.

After rehab, I am going to Michael's - the craft store - to buy some candy boxes for my Pumpkin Gingerbread Cake Balls for Thanksgiving gifts. After lunch, I am going to Michael's - the husband - to pick up our new car from the mechanic's shop. Hopefully. If my timing is off a bit, I may just have to burn some time. Can you say"shopping?"
The rehearsal last night was....interesting. The teacher was a very lovely woman but...interesting. She clearly is a good teacher but I am not too sure how much experience she has had handling groups of children. The secret is to keep things moving quickly. That didn't happen. Bows on strings. Ready to play. She would then comment. Children would talk and not pay attention. Most of them were good except for two of the older violinists - young teens. I think there was a lot of hormones happening. They were disruptive, disrespectful to the music and disrespectful of everyone else in the room. It was REALLY hard for me to keep my mouth shut. This is not my group. I am not in charge. The rehearsal was in her teaching space - her garage - with over a dozen of us sharing the room with storage. I was in the book section. She also had a little heater on and it became HOT in the room and no air circulation. Normally, that would cause me to sweat a lot. I was really warm but was not short of breath. Surprised.

Overall experience? It was great to be with the kids, especially the young cellist next to me. The rehearsals are going to drive me nuts but I look forward to performing with them.

Friday, November 18, 2011

Christmas Music Rehearsals Begin

I love playing music with kids. It is never perfect but it is fun. They are so serious and trying so hard. When I was working at the school, I often played with the String and Wind Ensembles. The students also performed in the community and one of my favorite venues on the Avenue playing outside in the evening the first Friday in December with about a dozen kids. Christmas music. The kids loved playing there every year. I would appoint one kid to do the countdowns and the tempos. I always removed myself from the spotlight and tried to teach the kids what they needed to do, make sure they could do it then let them run with it. My teaching philosophy.

So, this year I have been invited to play with a local group of young kids at the local very small mall near the harbor on December 18th. Their violin teacher invited an adult violist, cellist, me and a few adult violinists to help fill in. I am happy to play with them. Their teacher was worried that I was too "good" and wouldn't want to play with the group. I explained that I ran a huge children's music program and love performing with children. The first rehearsal is today.

It will be a lovely ending to a day of a Hepatitis shot, rehab and a face-to-face intense conversation with our insurance agent. I hate insurance companies and we just received another incorrect bill from our current one. Again. Oh, sorry. Just a mistake. Oops!

Goodbye to Regis. I will miss you in my mornings.

Thursday, November 17, 2011

Fatty Liver

Almost a year ago, I had pain in my side under my ribs. It hurt enough that I went to the Urgent Care at my university hospital. That is where I met that horrible doctor who told me to quit eating fried foods and lose weight. Fried foods?!? We haven't eaten that in decades. What a jerk. I already had the appointment scheduled with the Weight Management Clinic where I discovered the problems of losing weight with six years of prednisone in my system.

Everything single thing she diagnosed was wrong.

I actually had a huge case of pneumonia in my lower lung which was causing the pain. She let a person with a serious lung disease leave with no proper diagnosis nor any antibiotics. After the weekend, I followed through with Dr. K. who looked at the x-rays and quickly prescribed one of the super drugs. I could have died had I not followed through because I just didn't trust the Urgent Care doctor.

During the long day of tests, the Urgent Care doctor had me run to another campus for a sonogram to help find the cause of my pain. She was insisting it was a gall bladder problem. It obviously wasn't. But, what was discovered was a surprise. I had a fatty liver. Weird.

She said it was due to my weight. I had to follow up with the Liver Clinic. They were marvelous and I have written about my experiences there in past blogs. They said that Fatty Liver is rather a new discovery. It is going to be the reason for the majority of liver transplants the next decade as it develops into a non-alcohol based cirrhosis if one has the trifecta of high blood pressure, diabetes and high cholesterol. Since I had none of those, they said mine was probably caused by the drugs.

I have been to see them twice this year. The past six months, I have been having blood tests every two months and this Monday I am scheduled for another sonogram. On December 1st, I am scheduled for a visit to the liver clinic to review all the tests. They may want a biopsy, which I REALLY don't want. It requires a hospital stay and a "surgery." Hopefully, that will not be necessary.

Monday before dawn, I will be in the car for the long drive into the city for the sonogram and a fasting blood test. I am 60 pounds lighter than I was during the last sonogram. I hope my liver has reacted to the weight loss buy becoming smaller so I don't have to deal with the biopsy.

Wednesday, November 16, 2011

November 15th

Always a tough day for me. November 15th. We began the morning with a call to my mom at 7:30. Michael spoke with her first then took off for work while I chatted for a bit.

Tough phone call. A few tears all around.

Michael told her about us being out at the restaurant for my birthday last week. Frank Sinatra was playing on the jukebox and Michael was drinking a Manhattan. The memories of my dad came flooding back to him and he began to tear up. My dad. My very dynamic dad died 12 years ago on November 15th after elective same day surgery. He was in ICU for 30 days before dying of a staph infection and pneumonia. He and mom had celebrated their 50th Anniversary just months before his passing. His birthday would have been 10 days later. He was 74 years old. Too young. The holidays following his death were difficult, at best.

Mom couldn't talk long. She was already up and dressed and finishing up breakfast. She was going to an early morning Mass at a church cross town. She has several Masses said for him during the year - the date they met, their first date, the date of their elopement, the date of the real wedding, the date of his death and his birthday. She loves this church because they mention his name twice during the Mass and it makes her feel good.

Grief. I have written about it in these blogs. A physically painful grief. A new normal for my mom. A new normal for all of us. Difficult. Life changing grief.

I have one strong mom who, with the help of wonderful girlfriends, made the decision to carry on. To build a life without him. She learned to play bridge, became a docent at a local museum, continued to volunteer at the local hospital and built a strong community of girlfriends around her. But, she still dreams about him every night since his death. Every night.

She says that some nights, he is just there in her dreams. But, every once is a while, they are sitting together talking. They talk about my brother, sister and me. She hugs him. She wakes up feeling fantastic. They have been together once again.

It seems odd but when she dies, I will miss her so much but I won't grieve for her. She will be with him. They will be together again.

Tuesday, November 15, 2011

Crazy Dreams and Drive

I have been sleeping really well. The dreams, though, have been just a bit crazy. Last night, I dreamt that I was washing the screen of my laptop under running water and was shocked, just shocked, that it got into the keyboard and ruin the computer.

Also, I feel like I have spent most of the night shopping for shoes. Boxes and boxes of shoes. Searching and searching for brown ones. All were wrong. Nothing fit. Nothing was right.

What does this all mean? I need a life! I mean, I have had fabulous dreams of flying and being shown cities. Or being with my dad. Or of William as a little kid. Shoes?!?

Yesterday at the spur of the moment, I had to drive the new car over the hill to the mechanic where Michael met me to arrange to have the timing belt changed. I guess while they have to pull the whole front end of the engine, they are also replacing the water pump, hoses, tensioners for the belt and other stuff. We should get it back before the weekend. This all happened after I had already been over the hill to rehab and a huge Target run. Made it home for a bit of lunch then had to take off to meet Michael. It was only 12:30.

Michael's mom and brother Matt are driving from Las Vegas to spend Thanksgiving at his sister Anna's house in Riverside County (LA area) along with the twin and his lovely wife. We thought we would send a package full of goodies.

So, instead of going home after the mechanic's place, we drove south on Highway 1 to our favorite delicious dive. There, we bought a jar of ollallieberry syrup, ollallieberry jam and strawberry jam. Anna loves some French milled soap that I have only been able to find at this little store (and Post Office!) in the middle of nowhere. So, we stopped there on the way back up along the coast followed by a stop at our favorite coffee shop in town - Peet's. We bought a pound of Holiday Blend for Mary and a half pound of decaf for the after Thanksgiving dinner coffee for everyone else. Tomorrow, I am going to buy two pounds of See's Candy to also be included into the box then ship it all Thursday.

I must say that it was so nice to pick up all these goodies together. It felt like we were playing hooky. No one was on the road. No tourists. It was a relaxing ride though we missed the new convertible. It, too was playing hooky. We hope it comes home soon.

Monday, November 14, 2011

Managing Drugs

I take a lot of drugs. First, there are the drugs. Then, there are the drugs to counteract the side effects of the first drugs. Then, there are the drugs or supplements to counteract the effects of the second drugs.

Here is the latest list:

Azathioprine – 50mg. – 75 mgs 2x per day – bone marrow drug for lungs
 Boniva – 150 mg. 1x per month
 Ipratropium Bromide Nasal Solution – as needed for runny nose
 Levoxyl - .15mg – 1 per day/6 days a week – ½ one day a week – for treatment of Hashimotos 
     disease - Thyroid 
 Lumigan – 2.5 mil – 1 drop each eye 1x per day for Glaucoma
 Oxygen – 2 liters at night – .5 liters during exercise
 Prednisone – 17.5 mgs – 1x per day – for lung disease
 Prochlorperazine – 10 mgs – as needed for nausea due to Azathioprine
 SMZ/TMP – 800/160 – 1x three days a week – for Azathioprine side effects
 Spiriva – inhale 1 capsule 1x per day – for lung restriction
 Spironolactone – 50 mgs – 1x per day – as diuretic
  
OVER THE COUNTER
Calcium – 1500 mgs - 1x per day
Cranberry – 450 mgs - 1x per day
Fish Oil – 1,200 mg  - 1x per day
Multi-Vitamin Centrum Silver - 1x per day
N-Acetylcysteine – 600 mgs 1x per day
Stool Softener – 2x per week
Vision Formula vitamins – 1 tablet 2x per day
Vitamin B-12 – 1,000 mcg 1x per day
Vitamin D – 2,000 IU 1x per day
Vitamin C – 600 mg 2x per day

That is a lot to manage. I am thrilled to be on Medicare and have the Part D Supplement to help to pay for these drugs. For those who don't know, if you are declared disabled and have already paid into the Medicare fund while working, you qualify to receive it after 24 months of being disabled. We would have had to sell our house to afford the medications if I did not have Medicare. The Azathioprine alone costs $400 a month. My out of pocket cost is $16.00 for three months. I order through a mail program that provides 3-months of a drug in one order.

This is the time of year where I usually drop through the donut hole - otherwise known as Phase 3 - and there is little to no reduction of drug costs until one hits Phase 4. That is several thousand dollars. OUCH! Why does this phase always arrive along with the property taxes around the holidays? 

This time of year, I manage the last of my Phase 2 dollars before dropping into the hole. Can I stay within Phase 2 and have enough drugs until the new year? Last year, I had it managed down to the penny, then I got sick around Christmas and had a massively expensive antibiotic. That dropped me into the hole. This year, I still have about $1,000 worth of drugs to play with so I am going to order whatever drugs are available for reorder by the end of the year. We'll see how close I can come to the end of Phase 2. Hopefully, I won't need additional expensive drugs this year!

Michael? He is one healthy guy, thank goodness! He takes Osteo Bi-Flex with 5-Loxin which really works for him. He arm is never sore from repetitive injury anymore. I have also added fish oil and vitamins D and B-12 into his daily pill box. Got to keep him healthy and happy!

Sunday, November 13, 2011

Lazy Sunday

Time out. Stop. Laze.

That is the plan for this Sunday. The Formula One race from Abu Dhabi has been taped and we will watch it over breakfast this morning. Our 49ers are playing later and I bet we will spend some time in the garden even if we have to wear coats! It is supposed to be in the high 50's today.

I have a rather quiet week ahead. Rehab everyday, a good haircut and color for my roots and a visit on Thursday morning by Natalie, Winnie and Oliver. I am so grateful that I don't have to have the house and gardens and food ready for Thanksgiving dinner. For the first time ever, we are taking the entire family out to a restaurant for the holiday meal. It is time. I just don't want to exhaust myself for a meal. A traditional meal that I have made dozens of times. I'm done.

But, I love cooking for Christmas. It is my brother-in-law's year to design a menu from somewhere in the world. Last year, we served French food. I have no clue what Jeff has in mind for this year and I really need to begin to consider where we want to go in the culinary world next Christmas. I will design a menu that will allow me to do a few things everyday and very little on Christmas Day so I won't be exhausted and get sick.

The difference between cooking for the two holidays is that one makes you colors within the lines and the other allows you to scribble as much as you want. The traditional versus the outrageous. I love to scribble!

Saturday, November 12, 2011

Another Social Day, Oh My!

It has been such a social couple of weeks which continued yesterday. I met my friend Barbara at Sears Optical where she planned to buy some new glasses. On our way to that department, we just had to look through all the clothes. Sears! For this Nordstrom's girl! But, Levi's are Levi's. I realized last week that I no longer needed to buy the $100.00+ pair of jeans. I bought a pair of 512 Levi's for $39.99. What a deal. Barbara bought a great embellished t-shirt. Great price! Note to myself: Sears. Check them out more often.

So, down we went to the optical department. The people there were so nice and put up with me pulling copious amount of glasses off their wall of samples. Barbara actually bought a pair of purple glasses which looked fantastic on her. Who knew? I swear she looked 10 years younger.

We walked the mall, I showed her the new H&M then we headed to Nordstrom's for lunch in the Cafe. Because of the holiday, it was packed. We realized that everyone was at the mall because of the rain on the holiday. Too loud! Barbara has a very serious case of tinnitus so we needed a quiet lunch spot. All the restaurants in the mall were packed and loud. So, we took off in my car for the next town north and their really cool main street.

It, too, was packed with traffic backed up in all the parking lots. I tried all my secret parking spots and RATS, all were taken. Then, in the distance, a disability sign glowed. Several blocks away, it was there just waiting for us. Got it! We poked our heads in a few of the restaurants but they were all packed and too loud. There was a really expensive one that Michael and I tried several years ago. I didn't even know they served lunch. There were three table out front under their large covered patio so that is where we decided to eat. It was quiet. I had a wonderful crab and shrimp combo on a bed of lettuce and Barbara had their special of a rib eye steak. We ate, talked and watched the rain just feet from us. It was an exceptional lunch. Thank you, Barbara!

Before we headed back to the mall, we bought some goodies at the Danish bakery for her John and my Michael. We said our goodbyes and headed home at 3:30. What a lovely day.

Michael got home in time to leave for Wayne's 50th birthday party with about a dozen of his "men friends." I made a praline covered over ganache frosted chocolate birthday cake. Others brought wine and beer and they ordered several thin crust wood burning oven pizzas from town. He got home around 11:00. The party was a success.

Friday, November 11, 2011

What a Year!

It really has been an interesting year. Most of the year’s focus was working with the doctor and nutritionist at the Weight Management Group with the results of a 60-pound weight loss in six months. Remarkable. Miraculous. Life changing.

My health hit a low in May when I had my first visit with the Lung Transplant Clinic. The high was just five months later when my PFTs and HRST Scan reported a huge improvement in every way. The best ever. The doctors don’t understand how. I love that. I feel good and I look the best I have looked in over 20 years.

It was really a surprise that recently I have been led to two new friends. It is funny how a person suddenly appears who has the answers to questions that I have or just beginning to ask. I always think of these friends as teachers to me and to others.

Susan is a woman in the ILD Support Groups who has amazing insights. I have so much to learn from her. She is beautiful and smart and kind. Very kind.

Joanne and Jeff are a couple who live in Ohio who contacted me through this blog. We have begun an e-mail relationship. Jeff has just been diagnosed with an ILD in the past few months and they are at the beginning of the process. I remember being as frantic for information as they are now and Joanne is such a Type A that we totally bonded. I so admire and respect her for finding an ILD Clinic nearly 100 miles from their home then calling and insisting on an appointment immediately – and got it! She is a woman on a mission to help the love of her life. It has been so satisfying for me to help them in anyway I can.

It has been a remarkable year, overall. I continue to be grateful for my wonderful doctors, especially Dr. K. I am grateful that my son is well and that he brought Kimberly into our lives. I am grateful that my mom is pain free. I am so grateful to have a relationship with my brother and his wife. They bring me great joy and lots of laughs.

I am grateful every moment of every day to be married to Michael. I am so happy that we found each other when we were so young and have been able to spend much of our lives together. His mom, Mary, texted a Happy Birthday Wednesday along with a note that she loved me. I replied, “I have to love you as you gave me the love of my life.” She replied that she had tears of joy.

Thursday, November 10, 2011

November ILD Meeting and Birthday

     On Tuesday, Susan and I met for lunch at the food court at the university hospital before the November ILD meeting. The speaker was to be James Mitchell, PhD who was to teach us about Mindfulness-Based Stress Reduction.  MBSR is a practical tool for dealing with stress, pain and anxiety that can be implemented throughout the day, anytime, anywhere, using the resources of the mind and the body.     
     Well, he never showed up. But, I think it was the best meeting I have attended. The time allowed for a group discussion on a number of topics. What was most clear was that the every person in the room was there in search of information or conversations with other people who have their exact ILD but further down the road. It was also interesting that every person in the room had GERD. 
     I had to laugh out loud when Sally asked if there was anyone who did NOT feel they were a Type A personality. Silence! This does not mean that only Type A personalities get an ILD, but it may reflect the typical Type A's search for information, education for facts and an urge to drive their own medical needs. 
     Stress. Susan and I realized that we were both under extreme stress before we contracted our ILD. During the meeting, she was mentioning that stress is important to manage as it has been shown to cause other diseases like cancer. Well, that hit a tender spot of one woman who accused her of "blaming the patient." What Susan and I had been talking about between us is a need to study whether a long run of extreme stress allows something to diminish and an ILD to take hold.
     Many, many more subjects were discussed but I was so involved, I didn't take notes! I probably shared more personal information at this meeting than any previous ones and left feeling like I talked too much. I need to watch that next time.
     I guess that type of reflection occurs more often as we get older. Well, I got older yesterday. I am now 58-years old. 58. Sliding into 60 quickly.
     The day was normal - rehab, butcher, Trader Joe's - and I even was able to take a nap in the sun on the sofa in the family room. Michael and I got dressed in warm clothing and hit the road with the top down in our new car for a drive along the ocean and into the redwood trees. It took an hour to arrive at a restaurant on the ridge with glorious views and the full moon just as the sun was setting. 
We sat in the lounge in front of the huge fireplace to get warm, chatted with the bartender we met three months ago on our anniversary, ordered two appetizers then sat back and relaxed. It was perfect. Just what I wanted and needed. We began a conversation with a lovely woman, Michael bought her a drink, she moved to a table near us and had an appetizer for her dinner, too. She was a singer. A lounge singer who had a really lovely voice. We talked music. As he was paying our bill, Michael quietly paid hers. I am sure it was a pleasant surprise. 
     I drove home - with the top up! - where we arrived at 7:30 which is proof that we are now officially old! Ha!

Wednesday, November 9, 2011

New Convertible




I think it all started last week with the heating unit valve for the climate control systems failing in our 1994 840 BMW. No matter how carefully we have taken care of it, things happen. It is just old. It also has close to 200,000 miles on it. We talked about buying a new/used car this year but I didn’t want to add the additional stress of more expenses to Michael while he is at the beginning of setting up his own shop.

So, no one is no more surprised than I that we bought a car on Monday. There is a really well run consignment car dealer in town and Michael noticed a 2003 Audi A4 Convertible as he passed it on Sunday. We took it out for a test drive and paid for it on Monday. We got a REALLY good deal.

The only problem: Michael HATES the color. He is already talking about what color it is going to be.

Me? I like the color, which he refers to as a “chick color.” I think this sweet girlie car is going to become a manly car in short order. It has light brown leather interior so he is replacing the convertible top with a dark brown one and is going to paint the car a rich brown an old British color – Saddle Brown, I think.

This car should take us on lots of adventures for the next 5+ years. We so missed having a convertible as it made us get up and out of the house in the evenings and weekends. This car will be good for us. Good for our souls.

PS It's my birthday today. Small plans. Will report tomorrow. 

Tuesday, November 8, 2011

Injections of Olive Oil to Treat Pneumonia?!?!?

In this month's final page in Science News Magazine, there is a very interesting article about the past success in the treatment of pneumonia with olive oil at St. Mary’s Hospital Medical School in London.

It is an article from their archives. It is re-printed from the March 30, 1935 Science News Magazine. 

“The oil is emulsified and then injected into the veins. The high temperature of pneumonia patients dropped to normal within 23-hours after the olive oil injections and three weeks later the patients were well.”

At the time, they believed the effect of the “oil is due to absorption of the pneumonia or other toxins circulating in the blood. These poisons lose their potency after adhering to the globules of the oil.”

Turns out the roots of this experiment goes back to the times before antibiotics. “Serotheraphy, a popular treatment in the 1930’s, involved injecting animal-derived antibodies to a specific strain of bacteria into people.”

Sounds weird but seemed to work. Thank goodness for antibiotics! Imagine, getting olive oil injections to treat pneumonia!

If you want more information, it is in the November 5, 2011 Science News Magazine. Page 32.

Monday, November 7, 2011

Focus of Upcoming ILD Meeting

As we have already learned, there are now studies in place to see if yoga helps people with ILDs breathe better. Interesting. Relax and breathe. Makes some sense.

Susan and I were talking about how stress might have played a huge role in allowing our ILDs to find a home in our lungs. Now I think it is important to manage the stress of having a chronic illness to maintain overall better health.

At our November ILD meeting at my university hospital this week, James Mitchell, PhD and Mindfulness-Based Stress Reduction (MBSR) instructor will talk to us about how the MBSR program has helped people manage stress, pain, illness and anxiety.  

The MBSR program started in the Stress Reduction Clinic at the University of Massachusetts Medical Center in 1979, and is now offered in many medical centers around the world, including my university hospital.

I am looking forward to this meeting and will report back to you, dear reader. 

Sunday, November 6, 2011

Is that Me?!?

Each of these silhouettes represents a variance of a size 10 woman. I think I am most like #4.
Dear Reader, I don’t want you to think that I am bragging. It is not that. It’s just that I haven't been trying  on new clothing and seeing myself in a long mirror in horrible lighting. Memories of the difficult years of just buying clothes that I could get into came flooding back while in the dressing rooms. Who cared how it looked or the color or the price or the style. It fit!

I went shopping for clothes yesterday– brown cords, black skirt, black sheer hose, brown shoes, navy slacks. All were on sale. What is still so remarkable to me was when I tried something on at the stores and everything fit. I begin to giggle and then just marvel. That was me in the mirror. Really.

A saleswoman at Nordstrom’s asked what size I wore while helping me find the black skirt on the sale rack and I almost laughed out loud when I said, “A 10” and she didn’t blink. Me, a 10. Even funnier is that the perfect skirt on sale with a fitted waist was only available in a size 8. I tried, it worked, I bought it. Me, an 8. The cords I bought were a loose size 10 and the navy slacks were an 8. I am still stunned.

Everything was on display on our bed for Michael to also marvel at, not only the clothes and sizes but the prices! I really got good deals.

It was a very fulfilling day. I was reminded of all the hard work I did to lose the weight. All the hours working out every day. All the hours planning menus and cooking healthful food. Looking in the mirrors in the dressing rooms, I realized just today that it has all paid off. I look normal. I feel great.

Saturday, November 5, 2011

Routine Changes


Change in routine is healthy once in a while, I think.
  • Not doing yard work today
  • Going to rehab today instead of yesterday
  • Going to Norstrom's Rack, Macy's, H&M and DSW on a Saturday
  • Having a lunch of non-fat, sugar free frozen yogurt for lunch - with nuts
  • Waiting for the furnace guy this morning
  • Taking yesterday off to spend the day with a dear friend
  • Watching Thanksgiving and Christmas movies on the Hallmark Channel
Both of us are huddling around the light bulb this morning since the fan on the furnace is not working. Chilly in the house!

Michael has a busy weekend ahead so I am using that time to shop. He needs socks and underwear and I am looking for a skirt to match one of the St. John knit suit jacket to wear at Thanksgiving. I also need a pair of shoes.

This is a time to prepare for the coming season. The house and the gardens are in pretty good shape though some small projects need to be addressed.

Next week is going to be a busy one - dentist, ILD Meeting, lunch with Susan before the meeting, rehab all week, my birthday on Wednesday, celebrating Wayne's birthday on Monday night even though we share the same birth date, Michael has arranged a boys night out to celebrate Wayne's 50th with a small group of friend on Friday and I will be making a cake for my birthday buddy. The normal food shopping and gardening with all be on the agenda. A busy but fun week ahead.

Friday, November 4, 2011

Thermostat Issues

I have always run hot. Sweaty. Even as a child, my sister and I would fly into the house after running around all day and my sister would look dirty but normal but I would be drenched in sweat. Through the years, I have learned to never adjust a heater or fan because the majority of the people in the room were always cooler then what I was feeling. My thermostat was off kilter.

But since the diet, I am now really feeling the cold weather. For the first time, I am wearing sweaters under jackets and even considering buying a heavy wool coat for the winter. I haven't had one in decades. Never needed it.

I think my body's furnace is burning energy more efficiently. I have also noticed that I have been able to keep the weight off rather easily. That has been so unexpected. I thought that keeping it off would be the real challenge.

Though my internal furnace is working so much better, the house furnace fan decided to take a vacation. We tried to turn the furnace on this morning for the first time this season and nothing. No fan. Funny how things break down in a series of three - Wednesday was my car and today is the furnace. What will tomorrow bring?

Thursday, November 3, 2011

Rescue Me

...and he did. It happened at the beginning of one of the most productive day I have had in weeks. I had the morning scheduled with the goal of meeting with Fran at 10:30. We had been to Fran and Ricky's house for dinner last Saturday and she phoned me on Monday to offer me two beautiful St. John knit suits. I was thrilled. I also wanted to drop off a thank you card and present. Goal - 10:30.

So, with that in mind, we both left the house together in separate cars and followed each other over the pass at 7:15AM. He to work, I went to the other rehab. Early. Very early. After a good workout, I was heading to the butcher's when suddenly I noticed steam coming up through the vents near the windshield. I was less then a block away, pulled into their parking lot then noticed a lot of steam as well as a water trail from the stop sign to my car. It had to be a broken hose.

I opened the hood to see where it was coming from then phoned Michael. He was there in a flash. My hero. We hopped in his car and drove just blocks to Orchard Supply, not an auto supply store or the dealership, a hardware store. That is where I realized that my husband is really Macgyver. You know, the guy on the old TV show who could fix anything using simple things and tape. I was amazed.

We drove back to my car and, within minutes, it was fixed. It was a heater hose. He rerouted it until the part would be available at the dealership on Friday. We switched cars and off we went.

It was 9:35. Would I make the 10:30 appointment with Fran?

Trader Joe's was right down the street so I ran through it with my list of food for the week then jumped in the car to head to Fran's. It was then that I looked down to see how much gas Michael had in his car. Oops. Fumes.

Faster than any NASCAR pit stop, I pumped the gas then calmly arrived at Fran's at 10:20. A miracle. We had fun talking for twenty minutes before I headed for home. But, I had one quick stop at Safeway for other supplies and finally arrive home at 11:45.

Then the fun began. I worked in the gardens because it is supposed to rain today and it had been very windy. It was a mess. Two hours later, done. Also, while working in the gardens, I kept the laundry going.

When the gardens were cleaned and watered, I next began my work in the kitchen. In short order, there were the following things in the oven at one time:

  • Two chicken breasts roasting on the bone for my lunch for the next four days
  • Breakfast crustless quiche with asparagus, small tomatoes, scallions, pancetta
  • Dinner of a Beef Roll that was fantastic seasoned ground beef wrapped in bacon

While they were in the oven, I dragged out the huge ladder and cleaned the back gutters. I felt like Wonder Woman. Boy, my thighs are sore this morning. I must have climbed it over a dozen times!

Michael came home early to throw me in the car and we drove back into town for his haircut. He likes me to come along as he thinks she spends more time with him and he gets a better cut. Afterwards, we had a delicious dinner of the Beef Roll, asparagus and sliced heirloom tomatoes.

It was a struggle to stay awake until 8:00. I was asleep by 8:05.

Today's plan? I am meeting my friend Lois for tea at 10:00 then I am meeting Sherman before the rehab class at 11:30. After rehab, I am cleaning the house then we are going to the car show at the harbor at 4:30 followed by a fish dinner with Larry and Betsy where I have to be awake and coherent. That is going to be a challenge!