Living Well with a Bad Diagnosis - Lung Disease

Monday, January 31, 2011

Endless Paperwork

I am totally anal about paperwork though it saved me several times during the lawsuits and dealings with Medicare, Social Security Administration and the lawsuits.

Though the years, I have developed a system that might be helpful for those who are also ill and dealing with a lot of paper.

During the year, I write in a paper binder everything related to my illness including the mileage to rehab, doctors and hospitals which can be medical deduction. I also note my out of pocket costs for medicine, rehab, doctors and insurance monthly premiums. I have a separate page for each of these. 

I keep each receipt or paid bill, bank statements, investment statements, notices of payments by insurance companies, health insurance premiums statements in separate piles controlled by rubber bands.

At the end of the year, I add up all the columns, finish organizing all the plies and wrap them all up to take to our wonderful tax person.

When it is actually time for our tax appointment, I have everything ready. I don’t have to go searching through huge stacks of papers, I just add up all the columns and report those numbers.  At the end of the year, the paperwork for that year usually fills a large bag from a department store – with handles. I bring it with me to the tax meeting but since I have the cover sheets of everything listed, that is all that she usually needs to list every possible deduction.

It took me a while to set up my system but it works for me. The paperwork can become overwhelming. I have a whole separate file for all the paperwork from the lawsuits, lawyers, SSI, life insurance and the rest of the mess from the miserable hell from 2004-2008. It is organized. Through the years, I have had to go back into those files to retrieve some needed morsel of information. I am grateful that I have kept and filed everything. 

Sunday, January 30, 2011

Diet for Those of Us on Prednisone

Sitting in the nutritionist's waiting room last week, I observed morbidly obese people being seen before me. During my appointment, I conveyed the latest information about my benign fatty liver to Mr. B. He told me that people who are scheduled for gastric bypass have to lose weight before the surgery. The reason is that any weight loss reduces the size of the liver and makes the stomach more accessible. He also told me that just the weight loss I had last month was significant enough to reduce the size of my liver. That is a good thing!

Prednisone. I hate it. It saved my life. I am stable. As all people on the drug long-term will attest, there is likely a major weight gain due to the drug. It gives the sensation of never being sated. Never full. Always hungry.

With the frightening weight gain of 35 pounds for me, comes even more difficulty breathing. In the end, somehow, I must lose the weight because the need to weigh under 30 BMI to begin the process for lung transplants. In the end, I will probably lose a total of 70 pounds and weigh less than I have ever weighed as an adult. It will put me under 30 BMI by approximately 35 pounds. Breathing room!

We who have been on prednisone for many years, no longer process food normally. Prednisone really screws up how sugars are processed. Carbs are not processed normally as prednisone makes us hold lots of fluid and turns those carbs into fat. Lots of fat. Belly fat.

So, my diet changed when I saw the nutritionist last month who shared the secret of weight lost for us. No carbs. No fruit. No milk or yogurt. No grains.

Magically, I have lost over 10 pounds in four weeks. What have I eaten? Mostly homemade vegetable soup, celery and peanut butter or smoked salmon for breakfast; sauerkraut with no-carb mini chicken sausages, raw veggies or cabbage with the proper dressing with lean protein such as turkey or chicken or tuna for lunch; and veggies and lean protein for dinner. Lots of vegetables.

I keep scouring web sites for recipes but most of the low carb ones include lots of cheese and cream. Not good as I still need to keep my calories under 1,200 per day. I have found a few like Ancho Macho Chili, which is dynamite. Thank you Atkins! Here is the recipe:

If you are on prednisone and struggling with your weight, talk to your doctor about trying a low carb, low fat diet. It will help. I promise.

Saturday, January 29, 2011


I am bored. It has been a very slow few weeks with just rehab to keep me  busy. The gardens are still in their winter mode and don’t need me every week. Orchestra is winding up to the concert a week from today, friends are busy after the holidays, Michael is working long hours and I am spending a lot of time alone.

I look back to the end of last year when I was so busy and praying for a few days with nothing to do. Funny how life works. Maybe I should appreciate this time alone. Maybe I should arrange the shoes on the bottom of my closet. Maybe I should trim our Burmese Trumpet Vine that is growing like a weed. Maybe I should scour new recipes for my diet to keep it new and fresh.

Why don’t I feel like doing any of it?


Time to change. I am planning on working in the gardens all day today. That always gives me energy and a sense of accomplishment. That may spur a quick rustle in the closet and new food on the table.

Then I will be bored no more!

Friday, January 28, 2011

Nutritionist Check-In #2

Excited and a bit nervous,  I drove the 30-miles deeply into the big city and met with the nutritionist yesterday. Knowing I have lost more weight during the last month than I was able to lose in a year, I was guessing that it was around 10 pounds. I was hoping for 17 pounds.

Thrilled that I was able to wear slacks that I have not been able to wear in quite awhile, I felt excited for the weigh-in. I also vowed to wear something I could not wear before to all of our monthly appointments. When I run out of those clothes, I will buy something new as a reward for all of my hard work. I will be the best dressed client Mr. B. sees that day!

I arrived very early, no surprise, and weighed-in. I lost 10 pounds. Exactly. With shoes and jacket.

He said that I was doing very well with the diet and was pleased with the weight loss. He said that low fat cheese, mozzarella cheese sticks, low fat cottage cheese, low fat sour cream, low fat cream cheese, avocados, nuts and seeds, and some other foods can be added to my diet but I still need to stay under 1,200 calories a day. It should make choices of food a bit more interesting.

I have been eating a lot of cabbage and sauerkraut. A lot. I love it but I don't want to get sick of it so it is  banned from my diet this month. The focus will be chard, kale and mixed raw veggies from Trader Joe's. He also said that more protein needs to be added to my breakfast soups. 

We also talked about the purposed 3-month liquid diet. I think the plan is to meet with that doctor in two weeks to arrange for it to begin in May. It will be a summer of liquids. He said that I should be able to lose approximately 30-pounds during that process. Afterwards, I will return to this low-carb, low-fat diet and try to lose an addition 20-pounds. That will make a total of 70-pounds, almost the lightest I have ever weighed as an adult. 

After the 3-month diet, I will be able to begin the process of qualifying for lung transplants. That is the goal of this focus on weight loss. Dr. K. will be thrilled to get this process started. It takes about 6-months for testing of every organ in my body to be qualified. Once qualified, I can have lung transplants if I suddenly crash or become really incapacitated.  Hopefully, I will not need them but it is good to have in our back pocket, so to speak.

Thursday, January 27, 2011

Reoccurring Dream

It happened again last night. I have been having the weirdest reoccurring dream. For the past several weeks, I have been dreaming about losing my purse. Sometimes I am in doctor’s offices, or shopping, or in restaurants. I realize it is not with me. As I run back to try to find it, I wake up. Then, I am always so relieved that it was only a dream.

So, I went to this dream web site to see what they suggest:

Here, in part, is what is written:

Purse To see or carry a purse in your dream, represents secrets, desires and thoughts which are being closely held and guarded. It symbolizes your identity and sense of self.
To dream that you lost your purse, denotes loss of power and control. You may have lost touch with your real identity.
Interesting. Loss of power and control. Real identity. These are all the things that we deal with when we are diagnosed with a bad diagnosis. A fatal diagnosis. We lose total control of our lives and our future is suddenly so unclear. I wonder why I am dreaming about his now six years after my diagnosis. Hmmm.

I wonder if I will ever find my purse in my dreams.

Wednesday, January 26, 2011

Taking Charge after a Bad Diagnosis

How do we take charge of our own health issues after a fatal diagnosis? Ask questions. Ask for additional treatment ideas. Educate yourself about the disease. Does the diagnosis fit your symptoms? Does it make sense? Ask more questions.

It is our job to do everything we can to help with our treatment. If rehab is available, do it. Nothing is better to help heal a body than healthy food and exercise. Cut out alcohol. Cut out sweets and focus of fueling the body with the best possible fuel. Organic is good. Smaller meals are the best.

It is also our job to follow the medical progress of our treatment. Know the numbers of our tests. Know when we had what treatments. Ask for blood test results to be sent to us. We are the drivers of our treatment. 

When we take charge, the doctors sit up and notice. The various doctors are more interested in my case because of everything I am doing to help myself. I grinned again over a week ago when the doctors in the liver clinic said, “We can’t ask anymore of you than what you are already doing.”

Can your doctors say the same for you?

Be the rare patient who is doing everything you can do give your body the best chance of healing itself. It may add a few years of a good quality of life to your future.

Tuesday, January 25, 2011

Secret of Smaller Meals

We have discovered the secret of smaller meals. The light bulb went on when I realized that I was not as short of breath after eating a smaller meal. Usually, I would be uncomfortable and have a hard time breathing after dinner and suddenly it changed.

After I had the Nissen Fundoplication in Feb of 2008, I could no longer eat a large quantity of food. I felt better. I was breathing better after meals.

In my mind, I picture my body always trying to heal itself with all its efforts going towards that goal. When I would eat a larger meal, it seemed that all the energy was going instead into the digestion of that meals. For hours. Hours that should be focused on healing.

It all clicked that my body was using all of its energy to digest this bulk of food instead of trying to heal itself. We now eat very small meals. I am not short of breath after a meal. Michael usually has to eat something else before bedtime like cereal or cheese because we really have a very light dinner, usually a bit of protein and vegetables.

Try this experiment yourself. If you are dealing with shortness of breath, try eating smaller meals. You might notice a difference, too.

Monday, January 24, 2011

A Wedding this Spring

Going into 2011, we had made a decision to save every dime we could and live very close to the vest this year to save to buy a new car. A new used car. I hate car payments and really want to pay cash for it. Both of our current autos have over 150,000 miles on them and it is time.

With that in mind, we have been invited to a wedding in Tennessee this spring. We met Lauren in 2008 when we visited my uncle’s grave in Chattanooga, Tennessee. She is his step-grandchild. Her wedding will take place on her mother's farm in the Smokey Mountains north of their home. We have decided to attend. We have to fit this unexpected trip into our budget.

As the wedding site is just over an hour from Michael’s sister, Debbie in Knoxville, we are going to visit her as well. And as it is only hours from Knoxville, we are also going to visit our friend Christien who recently moved to the Durham, North Carolina area. That drive would take us through the Appalachians, where I have always wanted to visit.

We also want to drive to the coast from Durham and down to Charleston, SC then up to Atlanta. We were going to try to avoid Atlanta because of the horrific traffic but William told us we have to eat fried chicken and waffles at Gladys Knight’s restaurant. He swears they are the best in the country. Kimberly also has her favorite restaurant in the entire world in Atlanta. May have to spend a few days….

We will drive mostly on Highway 40 heading east and Highway 70 on the return trip, if the weather allows. We want to hit Memphis and Kansas City on this trip as well as Denver and the fantastic highway between Salt Lake City and Las Vegas. 

So, our current plan is to head east to the Bourbon Trail before the wedding. We will probably stop for a day with Chip and Betty in New Mexico on our way east and two nights with Michael’s mom in Las Vegas on our way home.

The entire trip should last just about a three weeks.

It is something to look forward to. Something to plan. It will take a lot of planning. Bills will need to be paid ahead of time and all my medications will need to be refilled and ready. We will need to rent a portable oxygen system and also arrange for someone stay in the house and water the garden.

I am so excited. A road trip. Our favorite time together.

Sunday, January 23, 2011

Suddenly Sociable

We were so sociable last week. Michael had the amazing experience of having dinner at Gary Danko’s in San Francisco. It is considered the best restaurant in a city full of very excellent restaurants. It takes two months to get reservation date. We have eaten there and it was an experience. He brought his two new bosses, his friend Ricky and the twin with him. Unfortunately, they all are very unsophisticated eaters.

Four days before the dinner, I copied the menu from the web site for Michael to show to his dinner companions. I thought it would be better for them to be able to study it beforehand so they are not shocked that they don’t offer steak and fries. They don’t.

Here is the menu:

They had a great experience and the other guys “got it.” This was no normal dining experience. It was like a choreographed dance. Everyone tasted each other’s dishes including Michael foie gras. It was everyone’s first taste ever. I think the dinner opened up the eyes of the other four people. It was a first for Michael as well as he tried the pork belly, which he said, just melted in his mouth. They have been talking about their experiences every day since. A truly memorable evening.

Saturday night found us at a bourbon tasting. I think I was brought along as the designated driver, which was greatly needed, by the way. I was not looking forward to the event. I had never met the people there nor did they know that I am sick. Tough for me to walk into that situation. I was also concerned that there would be nothing there for me to eat. I planned to be hungry and drink water all night.

Funny how silly things help me in those situations. I bought a new pair of shoes. While buying new running shoes last week, I bumped into a cute pair of black shoes with very high heels and a cute bow made from a simple floppy ribbon. Last pair. 30% off. My size. Fate. 

Along with the recent weight loss, these shoes made me more confident and excited to wear them for the first time.

It was a really nice evening. They lived in an area of very unique small house that have all been beautifully maintained. As we were get out of our car, one of their neighbors and I looked at each other and, oh my, it was a former teacher from the school where I got sick. I had not seen her in five years. Fun!

Besides the hosts Larry and Shana, his cousin and her husband were there and Michael’s friend Mikie came alone but with a huge bouquet of flowers. They had six shot glasses of six different bourbons already lined up ready for tasting. It took awhile to sample and rank each bourbon and food was served to help keep everyone’s from getting too carried away. They offered steak and chicken without a sauce and lots of vegetable. Perfect!

All the bourbons were rated then the rankings were compared which was both interesting and fun. Michael really enjoyed the experience. 

We chatted for hours, got home at 11:30. It was a really fun evening and I did not talk about being ill once. Lovely.

Saturday, January 22, 2011

Clean Environment

My interstitial lung disease, Hypersensitivity Pneumonitis, is caused by a long-term exposure to an antigen in mold, fungus or organic dust. It is the organic dust that “done me in.” I am very aware that it is important for me to live in a very clean environment. When I began to have a problem inhaling, Michael changed the clean air filters in the car that I drove every day. It was not expensive. Although that ended up not causing my disease, the breathing of clean air is good for me now.

After the lawsuits, we learned that we could install a hepa filter onto the furnace so all the vents expel clean air. Done. Not expensive. Again, not the cause of my disease but insures that I am in the cleanest environment possible.

Michael now is questioning the wearing of shoes in our house. I think he might be right in the suggestion that we are bringing unnecessary dirt into our environment. We won’t ask others to remove their shoes but we now have an agreement to remove our shoes when we arrive home from our adventures out in the world.

And again, the moment we are home, we wash our hands. I think that has been the most important thing we can do to keep our environment clean.

These are all little things that might add up to living a bit longer with a good quality of life.

Friday, January 21, 2011


Not just as a side dish with turkey! It is a wonderful supplement for those of us who suffer from bladder infections and urinary tract infections following antibiotic drug use. With all the antibiotics I have taken the past two months, I would usually be taking more drugs to deal with those infections.

Ever since the first run of antibiotics, I have been taking 500mgs of an herbal cranberry fruit powder instead of drinking gallons of sugared or artificially sweetened juice.

It has worked for me. No infection. I am going to take it every day to stave off any residual problems.

If you tend to suffer from these issues, give it try. It may help you, too.

Thursday, January 20, 2011

Thirty Years

It is just not possible. How can thirty years fly by so quickly? Our son William was born on this day those many years ago.

We waited eight years to have him so we often shake our heads thinking that we could have children a lot older! Oh my. I am feeling old.

We will phone him this evening and I am sure that he and Kimberly are celebrating the day together. We gave him a large Mustang car part for his birthday. It’s just what he wanted!

He was a sweet baby, a good student and nice kid, a great musician, a smart businessman, a fantastic sound engineer and a successful adult. We always said he was born under a lucky star. I can’t wait to see what else he does with his life. This is just the beginning.

It is a pleasure to be his mom. 

Wednesday, January 19, 2011

Doctors Don't Have All the Answers

The practice of medicine is an art rather than a science. It is gathering information of symptoms and test results in order to pinpoint a disease and offer treatment. It is just a guess. Doctor’s don’t always have the right answers.

The Acute Care doctor who treated me recently for pain under my right rib got it all wrong. What we as patients must do is to determine if their diagnosis makes sense. Hers did not. I felt she had made a diagnosis based on my age and weight rather than what all the tests reported. She was wrong about everything she diagnosed plus she missed that I had serious case of pneumonia. If not treated so quickly, I could have died.

I took control and asked for antibiotics from my lung doctor after the Acute Care doctor refused my request for them. I am now well and feeling fantastic for the first time in months. How long did I have pneumonia that it was able to get to the point of extreme pain?

So question their ideas. Ask questions and argue a point that just does not seem right but do it politely. Example: She said that I had gall stones. I knew that was just not right as I had not had any gall stone pain, which is an extreme pain. I asked, "Wouldn't I have had pain?" When she replied that I was having pain now, I thought to myself that the pain was clearly in the wrong place for gall stones. I knew she was wrong. In her mind, I was over 40 and overweight so I must have gall stones. From there on, I did not trust anything she said.

It is our job to run and understand everything about our treatment. It is our job to know our numbers from the test results. It is our job to understand the medications we take and the reason for them. All the specialists focus on is their own area of expertise. We must be the person to gather all the data and share it with each doctor. 

We are the keepers of our own information.

Tuesday, January 18, 2011

How to Live Day to Day

Living well with a bad diagnosis may be easier said than done. Bad diagnosis. Suddenly, your world changed. Everything was different. Rehab was the most important time consuming activity that kept some of my days busy.

It still is my major focus. It is now my job.

Every Sunday, I look at the week ahead and begin to make my lists. Always have a list. It gets me out of bed with the anticipation of what the day will bring. Of course the plans can be immediately changed if someone contacts me for a last minute cup of tea or lunch. It is always a fluid list.

It is important to get up, pick up the house, make the bed, get my makeup on and do my hair, and get out of the house. Isolation is the beginning of depression. Get up. Get out into the world.

I try to build the week around the orchestra rehearsal, doctor’s appointments and rehab. Everything else is fill-in. Grocery shopping, Target, paperwork, yard work and errands all must be spread throughout the week so not too much is happening in one day.

This usually works. I am tired at the end of each day but not exhausted. Energy conservation. That is always the goal. It is the constant challenge of living well with a bad diagnosis.

Monday, January 17, 2011

Eating Out - Low Carb

I was nervous about eating in a restaurant with my dietary limitations. We were supposed to celebrate New Year’s Eve at Chez Papa but they booked up so we cancelled those plans. Dodged that bullet. We do not eat out too often as I am concerned that the person touching my food can’t afford to stay home if they are ill. With no immune system, I can become ill that easily.

I was worried that I would not be able to find food that I can eat. I was worried that something banned from my diet won’t be listed on the menu and arrive on the food.

My life is vegetables and lean protein. Salads? Mayo dressing is fine….I should be able to find something.

But, I know that I need to get over this and try. Worst thing that could happen is that I eat a horrible meal of a piece of protein. The world won’t end.

So, we have been eating out more. It was so scary at first but I have learned to ask for exactly what I want. Example: We just had lunch at the pro shop restaurant at the Ritz. I asked for their appetizer of small lamb chops but asked for them to be served on a bed of greens instead of a chutney of apples and onions. Can't have fruit.

I am learning not to be afraid. There has to be something I can eat on every menu. I am still a bit nervous about Mexican and Chinese food. Those will be a challenge I will face down the road.

I am feeling good and have lost some weight. Clothes are looser. I have a meeting with the nutritionist at the end of the month. The weigh-in will happen. Fantasy would be losing 17 pounds. Reality is probably the loss of 12 pounds. We'll see.

Sunday, January 16, 2011

Isolation and Illness

It happened so fast. One day, Dr. K. told me that she would not allow me to return to my job. I felt lost. Work was my life. All of my support and friends worked. I would awaken at my regular 5:30 and was dress and ready to go by 7:00. Go where? It took many months adjusting to sleeping in a bit. It took many years adjusting to my new life.

What I mostly felt was isolation. Everyone else had a life. I had nothing but an illness. Yes, I was busy with all the lawsuits, lawyers, rehab, etc., but it was not enough. I missed people. I missed the children. I began to chat with moms and their children in the grocery store or Macy’s or anywhere. People. Contact. Conversation. Normal.

I remember driving around for hours before my rehab class because I had just wanted to get out of the house. I felt so isolated. So alone. Trying to deal with a fatal illness.

I believe what eventually saved me was pulmonary rehab. After the initial eight weeks of education, the maintenance program was two days a week. Two days a week that I would show up early and sit in the lobby. Two days a week where I began to chat with Sherman and Dick and all the other people also feeling isolated because of their illnesses. It became somewhere to go to feel normal.

Now I go to another rehab three additional days of the week where I have developed many friendships. Even wearing a backpack of oxygen, I feel at home. Normal. 

I believe rehab saved my life in more way than the pure exercise. It allowed for the much needed social and emotional support. 

I no longer feel so isolated.

If you are suffering with an illness, please sign up for a rehab program. It will change your life.

Saturday, January 15, 2011

Lunch with Friends

What has gotten me through the worst of my illness, besides Michael, is my relationships with friends and former students. Yesterday, I had a wonderful two hours with a former student Michael and his mom Dolores. Both dear friends. Michael was a student in the music program and is a greatly talented and remarkable human being. He must have learned much of it from his mom, as she is just as wonderful.

We met for lunch yesterday at a new spot for all of us. It was in a very contemporary hotel hidden in a huge area of housing and office buildings.  I never had a thought that something this private and beautiful was there. The formal restaurant was sleek with an open kitchen overlooking the gorgeous hills right near the Stanford Linear Accelerator! Beautiful open space. The food was amazing. On a nice day, there is also an outside patio. On our way to the restaurant, we passed a cool dark wooden bar and a lounge both of which have separate menus.

Dolores and I had the beet salad that was perfect in taste and size or my diet. Michael had the duck confit salad. The duck looked fantastic and he said it was very good.

I have to bring my Michael back to check it all out. This is his kind of place.

These are people who I always walk away from our time together feeling as if I have learned a lot and the conversations are so unique. Good for both my brain and my soul.

Michael has been home from college for a long semester break and is heading back next week. We made a date to have lunch together again in May. On the Coast. Lobster Rolls!!!

Friday, January 14, 2011

Sherman at 86

We celebrated Sherman’s 86th birthday at the rehab class on Tuesday. Who would ever guess that my dearest friend is 86-years old? I told him that we are beginning to plan for his 90th! He keeps commenting that he could go at any moment. Ha! I don’t think so. He is very healthy except for his lungs.

Dick and I planned a gift. As you may remember, Sherman loves his Martinis. Gin Martinis. Michael contacted a knowledgeable person who recommended a special gin. It is Hendrick’s Gin made in Scotland in small batches. It is supposed to be delicious.

I arrived an hour early and both Dick and Sherman were already in the lobby of the hospital. We had a small celebration – just the three of us – and Sherman took his new bottle of gin to the car “for safe keeping.” His eyes were bright when he told me that he had heard of Hendrick’s but had never tried it. Perfect!

At rehab yesterday, he said he was saving it for today, which is his actual birthday. He was so touched that we gave him a present.

Happy Birthday, my dear friend.

Thursday, January 13, 2011

Too Much in One Day

What a day! I am recovering. Yesterday was my brother’s birthday so we began the morning with a phone call to him. They were heading to several Indian casinos in New Mexico for a fun filled day. I arrived early to rehab because I had to be back in our little town by noon for a hair appointment after a quick lunch.

Busy. Pushed. Out of breath.

I arrived to the hair appointment on time and tried to relax. Two hours later, I was back home with darker roots and shorter hair then dealt with bills and paperwork and dinner. Michael got home from work, we had dinner and a chat then off I went to the orchestra rehearsal. That was a workout. Finally dropped into bed at 10:30 – about two hours later than usual.

Too much in one day.

I am feeling it today but no rest for the wicked! Off to the rehab class I go! But, maybe a nap should be scheduled for later this afternoon!

Wednesday, January 12, 2011

Not Exhausted!

 I don’t know exactly how but I am not exhausted. Usually, I am recovering this time of year from all the preparations and excitement of the Christmas holiday.

Our French Christmas. I had lists of things to do everyday for a month. Lists for buying or searching for the holiday presents and food. A few things a day. I kept up with rehab, gardening, housework and all my doctors appointments. I was extremely organized. 

I also wore my oxygen the entire time I was in the kitchen working of that day's food for Christmas. That may have saved me.

When I look at the photos and see all the food I prepared, not only for Christmas, but all the other meals that I served to our house guests before and after the holiday, I am amazed that it all happened so easily.

I could not have done it without the help of William. He cooked several of the Christmas dishes.

So, I feel I am heading into 2011 very strong and very focused.

Tuesday, January 11, 2011

Rehab Changes

When the other rehab moved out of the hospital and into a separate building, the actually size of the gym was reduced by at least half. Small. Too small. It doesn't directly effect me. All of my equipment made it through the transition. I have adjusted.

When I saw my biologist friend Lois there on the 31st, she told me that she would not be returning in January. Several pieces of her favorite equipment did not make the move and there really is no where for her to stretch afterwards. We have become such good friends and I was sad then worried that I might lose her. She is the only person in my life who can talk music with me. Classical music. She goes to the Mozart Festival in Salzburg, Austria every year. I am so jealous!

We have each other’s e-mail and have made a vow to meet each other for tea. I will make sure this happens. She is a brilliant woman and I always feel a bit challenged and smarter for having been in a conversation with her.

Changes. Life. 

Monday, January 10, 2011

Conversation at 5:00AM Over Coffee

Okay, it was early. Too early. We had gone to bed ridiculously early and woke up even more ridiculously early. The house was cold but the coffee was hot. I just asked a simple question to Michael:

“Any goals for 2011?”

Maybe not such a simple question. Maybe not be the smartest thing to ask that early in the morning. Well, he turned to me, very seriously and said, “My goal is to put you in a bitchin’ car.” Bitchin’?! Didn’t that word go out style in the 1970’s?

I started to smile. “Anything else?”

His reply, “I want to lose ten more pounds.” The same pounds he put on eating his way through the South. Most only recently disappeared while fighting the horrible flu last month.

My reply, “Planning another bout of the flu, are you?”

We both laughed out loud. Too early. Too much coffee.

What a fun way to start the day. A good laugh. A cherished moment.

Sunday, January 9, 2011

January Magic

It is our month. The magic month. The month of life changes and new beginnings.

We started dating in a January of 1972. I got my first real job on the first working day of the year in 1974. Years later, we bought our first house in January. We lived happily there until William was born on January 20, 1981. A year later, our new house closed on his birthday.

Major life markers. All in January.

Each new year, I am excited to see what the month with bring. It is always good. It is like an extra Christmas present.

Saturday, January 8, 2011

News about Pirfenidone in Europe

Thanks to an e-mail from the wonderful people at the Coalition for Pulmonary Fibrosis (, there is news about the first drug treatment for Pulmonary Fibrosis – Pirfenidone.

It did not pass the expected final test by the FDA in the US last year. It was a huge disappointment. I have met two people in my ILD Group who are in the study and are having great success with it. The FDA felt it needed more study.

The big news for my European readers is that it has passed a hurdle in the European regulatory process and is ready for the EU to approve this drug. Hopefully, this will give the FDA here in the US a bit of a kick in their butts. Maybe. It has already been approved for use in Japan and India.

There is currently no treatment other than lung transplants in the US for Pulmonary Fibrosis and the life expectancy is only 2-3 years after diagnosis. It is a deadly diagnosis. Pirfenidone could prove to be a miracle drug to extend not only the longevity but also the quality of life for those suffering with the disease.

If the scientists can discover a way to treat PF, it may open the door for all the other ILDs to have possible treatments as well.

Good news all around!

Friday, January 7, 2011

First Liver Clinic Appointment

Nervous. Just plain nervous. It is so hard to convey all the proper information to a new doctor, help him/her to believe that I know what I am talking about and understand that I always tell the truth. I was being seen at the liver clinic because of a referral from Acute Care due to pain under my right ribs.

The Acute Care doctor thought I had a gall bladder problem (though I never had gall bladder pain),  swollen fatty liver because I am overweight, felt that I have eaten too much fried food (Ha! Haven't eaten fried food in many years!) and the pain was from my liver. Boy, was she wrong on all counts!

I was very skeptical of her diagnosis. I thought something else was wrong. After my visit to Acute Care, I had contacted Dr. K. because they discovered during an x-ray that a lung infection that she had been treating was not yet completely gone. I was going to need another run of antibiotics. She prescribed 500mgs of Levaquin for 14 days. Within two day of taking it, my pain was gone and has never returned. I thought that maybe the liver might have been infected and the antibiotic dealt with it.

I arrived an hour early with a list of my medications, hospitalizations and diseases and family medical history. I also brought a timeline of the recent lung infection and its correlation to the liver pain.

A smart and beautiful resident in her final year did the interview and exam. She listened as I shared the timeline. She believed that I did not have the pain from my liver but the pain was actually from pneumonia in my lower right lobe. That made sense to me because of the cessation of pain after two days on the Levaquin.

After the resident’s initial interview, she returned with the doctor. He was fantastic. He said that they don’t see a lot of people like me (HA! Wonder what that meant?!) and that he believed that the fatty liver was caused by the long-term prednisone use. This is important as I plan ahead to be qualified for the lung transplantation process. 

He also explained to me that they have recently discovered Fatty Liver and the complications that can follow. It is a benign disease but it may trigger inflammation which can cause fibrosis of the liver. Hello! I have fibrosis of the lungs! I understand fibrosis.

Inflammation of the liver can be brought on by the Big 4: diabetes, high blood pressure, high cholesterol and obesity. All four. I have one. They are just beginning to understand this whole process and he said that Fatty Liver will be the primary reason for liver transplants within the decade.

He does not believe I have inflammation because of the blood tests I had during my visit to Acute Care but he wants to keep an eye on it. He wants to look at my fasting cholesterol levels and a pre-diabetes test then we will meet again in six months. 

All good news. I walked away from the appointment with relief and the feeling like I am in really good hands. I  phoned Michael right away to share the good news. We celebrated last night with my first dinner out being on the new diet. Michael had a killer Lobster Roll and I had a small half crab salad. He also had a cocktail!  I had the olive!

I must pause here to comment about the waiting room. It wasn’t pretty. There were many people there who were clearly dealing with current or past alcohol abuse. I actually talked with the doctor about it and he said that he is often the first person to talk bluntly about the damage alcohol abuse has done to their bodies. He tries to get them into programs to help them stop but he also realizes that alcoholism is a disease that is not easy to “fix.”

All in all, it was quite an education.

Thursday, January 6, 2011

Problems with Nissen Fundoplication

I have blogged about my 2008 Nissen Fundoplication on December 4 and 5, 2009, if you want to read it. It stopped acid reflux from going into my lungs. The problem, we later discovered, is that the surgeon tied my upper stomach a bit too tightly around my esophagus. I have to be very careful about eating only small pieces of food, eating very slowly and chewing everything well.

It has worked, for the most part.

With my new diet, I was eating a wonderful raw kale salad I found at our cool and very expensive local organic market. There must have been something about the texture that just didn’t allow it to go down properly. It felt very uncomfortable and like something was stuck in my throat. Terrifying, actually.

I felt nauseous Do you know how you get that kick in of phlegm in your throat just before you get sick? Well, it was there. As part of the Nissen, I was told that I would never be able to vomit again. Surprise! It happened. It came up. I felt so much better. I will never eat raw kale again!

After recovering a bit, I tried to continue having some lunch. I tried a small piece of chicken. It also did not want to go down. It also came back up. I gave up. No lunch for me! 

Oh no! Am I going to have a problem keeping food down?

For dinner, I made small logs of ground lamb mixed into a bit of ground chuck with garlic, parsley, eggs and spices for gyros. Michael had his with scallions, black olives and tzatkeki sauce on flatbread. I had mine with some black olives. Period. I ate it tentatively. It stayed down. It tasted so good. I was so hungry.

So, I am learning. With all the vegetables in my new diet, I still have to be careful about working them through the Nissen.

Just something else to deal with. Adjust to. Move on.

Wednesday, January 5, 2011

Interstitial Lung Disease - January Meeting

The monthly Interstitial Lung Disease (ILD) meeting was this week. The agenda was to check in with each other, some discussions and review. Sally, the coordinator of the group, also wanted feedback and ideas.

Because my rehab class is on Tuesdays and Thursdays and I have my first Liver Clinic appointment on Thursday, I didn’t go to the ILD meeting. If there was going to be a speaker, I would have attended. I didn’t want to miss two rehab classes in a week. A possible slippery slope.

The February meeting will feature Dr. Eunice Kim – whom we have met before – who will talk about Pulmonary Function Tests (PFTs) as to how they pertain to ILDs. We are to bring our PFTs so we can talk about what our specific numbers mean. That should be an interesting meeting!

Weight Update: I was weighed at the rehab class yesterday and have lost 6 pounds in eight days. Mostly water, I'm sure. It is as the nutritionist predicted. It is still shocking to me. It has been so impossible to lose and suddenly BAMM! Six pounds. Gone. Done. Lovely. Now I want to push to see how much I can lose before my next appointment with him at the end of the month.

Tuesday, January 4, 2011

Vitamin D, Prednisone and Bone Loss

The latest Science News magazine dated January 1, 2011 features an article on vitamin D. It is the hot vitamin of the decade. My marvelous endocrinologist, Dr. M. had my levels tested when I first started using prednisone in 2005. He was nervous about the long-term use of the drug and possible bone loss. Vitamin D helps calcium supplements be more easily absorbed into the bones.

Well, I fail miserably. My number was 19. What is normal? Well, that is confusing. I don't know the specific test he requested but some tests have a normal of 25. Some are 50. Another is 60. Clearly, I was low.

Why should you have your levels checked? You probably have Vitamin D Deficiency. It can be very low even though you are healthy. Vitamin D is absorbed into the body through the skin and especially the eyes. Some doctors recommend two hours of afternoon sunshine without sunscreen or sunglasses as helpful for absorption of Vitamin D. Every day. Rather impractical. 

I have been taking 50,000 IU once a week. At our last appointment, he said that I could take the over-the-counter supplements of 2,000mgs. a day. I had my blood tested once again on the 23rd of last month to insure it is at the proper levels.

It is also very important not to take too much. Do not self medicate. Check with your doctor and ask for your level to be tested.

The article says that:  “a scientific panel has called for tripling the recommended dietary allowance for vitamin D for most children and adults and raising the amount slight for older people. The panel also doubled the upper level of vitamin D that older children and adults can safely take in any given day from 2,000 International Units to 4,000. The panel’s report, commissioned by the National Academies’ Institute of Medicine at the request of the US and Canadian governments, was released November 20.”

Food for thought.

Monday, January 3, 2011

New Foods - Low Carb

I have begun to eat the way I have been directed to by the nutritionist. Boy, it is tough. To plan three meals a day with no dairy, no fruit, no grains, no starchy veggies and all low carb is a challenge. I will find a great recipe but the total of carbs are too high. I did find some wonderful roasted seaweed snacks. Love them. They only have 1-gram of carbs and 30 calories for ½ of the package. Great for after working out.

Breakfast is the hardest. I used to eat gluten free waffles with peanut butter or whole week toast with an egg. Can't now. Nothing but protein and non-starchy veggies. I was reminded that I could eat some smoked salmon with capers and goat cheese or celery with peanut butter for breakfast and dinner leftovers for lunch.

The menu for this week is:

Heirloom Tomato, red onion, capers, olive oil salad with chicken
Zucchini and Carrot salad with a 4-oz. pork chop
Baby Bok Choy with 3-oz. flank steak
Stir Fry Walnut Shrimp

All are low carb.

The nutritionist told me that once I let the fruit, grains, yogurt and pasta go, my body will release a lot of fluid. Wow, he was not kidding. I was up three times last night – once is a rare event – releasing a tremendous amount of liquid. And a bit of weight. Nice.

Yesterday, I ordered a new Low Carb cookbook from Amazon, which should give me a few new ideas for our meals.

Sunday, January 2, 2011

Shelley is Engaged

My mother is thrilled. The older of her two grandchildren is getting married. My niece Shelley and Greg were engaged on New Year’s Eve. He asked her dad Jeff for permission to marry her, which is so old-fashioned. So sweet.

I have yet to see her ring. Greg had it designed with a diamond from his mother’s wedding ring (she is deceased), a diamond from my sister’s wedding ring to Shelley’s bio dad and a diamond from Jeff’s family. Jeff, Lee’s second husband, raised her and really is her dad. Greg had all three diamonds made into a beautiful ring. I love the sentiment. It seems and feels so right.

She is in her early 30’s and it is time. They have been together for many years; she begins her terrific new job on January 3rd, and now she is planning a wedding. What a great way begin a new year!

I was reading her announcement to everyone on Facebook and just had to laugh out loud at one of the comments about her engagement. When he was young, Greg was a nationally placed roller skater with a room full of trophies to prove it. This was the 80’s after all. One of his photos features him in an outfit that appears to be pink. He has had to explain through the years that it was actually salmon, not pink. It has become kind of his “tag line.” One of the Facebook people asked if the bridesmaid dresses would be salmon, not pink! Funny.

I so hope that they chose a date when William is in the country. The big tour of the big group begins in March through the end of the year.

A wedding. Something to look forward to this year. 

Our best wishes to them.

Saturday, January 1, 2011

Looking Backward and Forward

2010. What a year! So many loose ends were tied up. My health was fantastic until May but then it fell apart. I am grateful for the many months of wonderfulness but I have never fully recover since May. I feel like I am limping into the New Year.

To review 2010:

  • The acid reflux is under control.
  • I began playing with an orchestra one again.
  • We had four sets of company – other than my mom and our son.
  • Michael began working at a great job.
  • I have reconnected with some of my former students
  • We have reconnected with some of our friends.
  • We joined a book club.
  • We are beginning to plan for the future for the first time.

It really was a remarkable year. Lots of personal growth. What didn’t happen was any change in my weight but I am addressing that as my main goal in 2011.

Also looking forward to 2011, I hope to begin the process to be approved for lung transplants. It is quite a process in which you will be invited along. Before that can begin, I need to get my weight under 30 BMI thus the focus on weight loss.

So, here we go into the unknown future of 2011. 

Happy New Year! Cheers!