Living Well with a Bad Diagnosis - Lung Disease

Thursday, June 30, 2011

Sick Again - Virus

Michael came down with a slight fever and a virus about two weeks ago. He had endless coughing and sinus problems. We took to different rooms to sleep. As I am not eating, he never touched any of my food. I thought we were safe.

But Monday, after of week of dealing with the coughing and sinus issues, I felt it growing in intensity. It was in my body. It was not good. I had no fever but I felt awful. It hit my lungs. I was now coughing up yellow gunk and blowing green stuff from my poor nose.

I went back to bed instead of going to the gym on Monday. I never do that. I fell back asleep for a few hours, awoke, took a shower and talked to the lung clinic. Later that day, they phoned in a prescription for Augmentin.

Tuesday, I stayed in the house all day. I missed my rehab class. It was raining and cold so I think that was a good decision. It was a long day. Boring.

Yesterday, I was feeling a bit better and just wanted to get out into the world in real clothes with my make-up on and my hair done. Just as I was heading out the door, I realized that I really didn't feel well enough to leave the house. I stayed home and took a nap. Another long, boring day.

I am sick of feeling sick.

It is now Thursday. I am home for the day. I have to get well.

Wednesday, June 29, 2011

Post Diet Plans

We have been so isolated with my liquid/protein diet that our friends and relatives are banging at our door – figuratively. Plans are being made.

My mom is coming in for her birthday mid-August. She has requested Braised Short Ribs with Sauerkraut and a chocolate cake for her birthday dinner.

A week later, Michael’s sister Anna and her daughter April and 2-year old Stephen are coming for a few days. They are, thankfully, staying at a hotel. I am planning to make the most amazing roasted chicken served over a panzanella salad. The chicken is salted and cooled in the refrigerator for 2-3 days before cooking. They are then baked whole in a very hot oven for an hour until the skin is crispy. It is cut up and placed over a salad of broiled crispy bread, currents, scallions and garlic tossed with olive oil and champagne vinegar dressing. Amazing.

While they are here, I will take them to lunch at the restaurant in the small town south of us after visiting the famous goat farm. They must taste the samples of goat cheese and see the llamas that protect the flock. Stephen will be delighted to see it all.

We always celebrate Rick and Natalie’s birthdays but I have been on this diet and just not willing to have any different food in the house. I really couldn’t do it. So, they are expecting to come down for the evening. I should confirm a date with them soon!

Michael wants his friends Marianne and Mark to come for dinner then another dinner with Ricky, Fran and their daughter Lisa and the famous chef Mark.

At the moment, I am looking forward to it all. Ten minutes before everyone is to arrive, I always say that I will never have people over again. But, in the afterglow of a nice dinner with friends, I always plan another date to get together.

With all of this, I have to be so very careful not to eat too much food. I cannot gain a pound back. I have to keep losing.

It is a challenge that I am ready to accept.

Tuesday, June 28, 2011

Seeing Doctors? Cheap Advice

When my wonderful dad was in his 70’s, he gave me some excellent advice. He said that when he had an office visit with a doctor, he meet him naked in a paper gown sitting on a table in the exam room. The doctor would do his exam then would tell him to get dressed and meet him in his office.

The doctor saw an old naked man.

My dad always wore a suit or a sports coat with a shirt and tie to all doctor’s appointments. When he would enter the doctor’s office in his clothes after the exam, he said the change in the doctor was immediate. This no longer was just an old man; this was someone who was suddenly active, smart, interested in his own health and someone who had substance. The conversation changed. The doctor’s attitude changed. Suddenly, he became interested.

And that, my dear readers, is what a patient really wants: Please be interested and think about my case.

My dad’s advice to me: Always dress up for all doctor’s appointments.

I have found in my own experience that he was absolutely right. Try it. Dress up like you are going to work at a company with a dress code: no jeans, no shorts, no flip flops, no tank tops, no jogging suits. Nothing too fancy just clean, neat clothing. You will notice the difference on how you are treated.

Monday, June 27, 2011

More Books

I have been reading a lot. The books written by Lee Child and Brad Thor keep me occupied on the treadmill as the minutes click by quickly. But, when I am at home, I like to read more interesting books. Years ago, I discovered a book titled “Under the Tuscan Sun.” A professor from San Francisco State University along with her husband bought a house in Tuscany and wrote about their adventures. It was nothing like the movie.

She wrote several more books, which were just as delightful. She even included recipes! I recently bought one of her books that was published in 2010 titled “Every Day in Tuscany.” It is just a lovely book. I have missed hearing about her life and their adventures.

Besides that book, I have fallen in love with a beautifully written book by William Kuhn titled, “Reading Jackie Her Autobiography in Books.” This is not just about the life of Jackie Kennedy but her life is put into the context of her life long relationship with books. Rather fascinating. Now I understand why she wanted to die surrounded by her books. They were her true friends.

While buying these books last weekend, I was so surprised to look up from my reading in the bookstore coffee shop to find K.K. coming towards me. She was the transplant coordinator we met at the transplant clinic a few weeks ago. She was also the person who lost 89 pounds on the same liquid diet I am suffering through. We chatted, I asked specific question about the transition into real food and how she has adjusted to the weight loss afterwards.

I mentioned that I have noticed that people look at me and treat me as normal now. So different than when I was 45 pounds heavier. There still is a huge prejudice in this country with fat. No one is allowed to joke about anything else but fat people. It is the last frontier. K.K. told me that she still thinks of herself as fat in her head then reminds herself that, yes, she could sit on a little white folding chair without it collapsing.

Life’s adventures continue for each of us.

Sunday, June 26, 2011


The above is a framed numbered print of a painting we discovered and fell in love with on a trip to Carmel decades ago. It cost a lot of money to us at the time, but the owners got the artist to sign it and we bought it. We had it framed and it currently hangs in our bedroom.

The picture is of two people at the beach. Michael said when we bought it that the picture was exactly how he envisioned us as we got older.

Years ago when we realized that I had a fatal illness, he was so distressed that we would not be able to grow old together. That is what we had wanted. That is what we looked forward to.

To be together to the end.

The other day, the sun was shining for the first time in quite a while, he was not feeling well and we were sitting under the shade of the large umbrella in the back yard while sitting on two Adirondack chairs. At one point, Michael drifted off to sleep while I read an article in a magazine.

He awoke and stood up, glanced at me and smiled. He said I looked so beautiful and sophisticated sitting in the chair reading. It was also a reminder of the picture in the bedroom.

So, we may not be able to be together as long as we had hoped but we have learned to cherish each moment together.

Together. For now.

Saturday, June 25, 2011

Back on the Road

Our son William left the country on Thursday. The really famous group for whom he works as head of their sound will be playing two weeks of sold out concerts beginning in Germany then the UK. It is a rather short trip. After they come back, they will embark on a long bus tour around the US before heading to Japan and Australia later in the year.

He phoned Michael on Father’s Day so we were able to have a nice long chat. He is so enjoying being home with Kimberly, I think this is the first time he is really conflicted between leaving to do the work he loves which provides for them or wanting to stay locally.

I asked if he was going to be able to swing by our home for a visit. I am having overwhelming feelings of wanting to feed them. I think it is related to my diet! He said that they have the month of September off. It would be great if they can spend a few days with us.

So, Thursday morning we sat in front of our computer, turned on Photo Booth and recorded a goodbye “Have a good trip” message to him before coffee, before grooming, before we were really awake. It was hilarious. We hope he got a good laugh out of it.

Friday, June 24, 2011

Liver Clinic Visit #2

I had the follow up visit with the Liver Clinic yesterday. I had been referred there by the horrible doctor who misdiagnosed me with a serious liver disease instead of the pneumonia I had brewing in my lungs. The liver people had discovered that I had a slightly fatty liver, which they believe was caused by the prednisone. They wanted some follow-up tests to see if I had any of the precursors to a more serious liver disease.

I arrived 40 pounds lighter than the last time they had seen me in late January. They were delighted to see the weight loss. The results from the fasting blood tests taken in March were reviewed. All looked good. I did not have the precursors to the more serious liver disease.

The doctor wants to have another sonogram to see if the fatty liver is a lot less fatty. If not, he is going to want a biopsy. He is confident that, with my dramatic weight loss, there should be an equally dramatic change with my liver.

Let’s hope. I just don’t want to go into the hospital for another biopsy.

The doctor also said that I am their poster patient and that I am doing everything right. He and the resident asked how I had lost the weight, I gave them the information and they are going to start referring  their patients who are struggling with weight issues to the Weight Management Clinic. That made me feel really good. There will be hope for others.

From the hospital, I drove to my rehab class and made it in plenty of time. I arrived in my dress and jacket. Sherman was very impressed! All the nurses passing by made comments and Sherman told me to stand up and show off! I think he was proud of my weight loss, too! I changed into appropriate clothing and worked out. 

As I had left the house for the long drive to the city at 8:00AM, saw the liver doctor, bought some more of my horrible food for the next month, drove back to my rehab class, worked out then drove home, I was exhausted. I am afraid I am getting the virus Michael is fighting. I am beginning to cough and have lots of postnasal drip. With this long day behind me, I was asleep by 8:00PM.

Thursday, June 23, 2011

Facebook Connection

Through Facebook, I have reconnected with so many families I knew from the school where I got sick. Yesterday, I added another former student to my friend’s list. His sister was a wonderful and talented student who was part of my first kindergarten class when I was hired in 1991. She is now working in television production in LA.

Her brother was a whole other story.

He was a HUGE kid. His dad was very tall and just a big guy. Under his frame was a very tenderhearted kid. He was picked on then he would strike back then he would be in trouble. He always seemed to be in trouble. But, he was my kind of kid. I liked him. We always connected. I knew him from kindergarten until he graduated then he even would come to visit me while he was in high school.

When I was the head of the lighting and sound for the new theatre at the school, he was part of that small group. He really loved it. I made time for the kids to just play with the equipment as that is how they learned the ins and outs of this very expensive professional equipment. He was exceptional. Later, he ended up running both systems at his high school.

We reconnected on Facebook this week. He is doing really well out in the real world. He looked very happy. It warmed my heart.

Wednesday, June 22, 2011

Weather, Rehab and Food

The weather was still just as beautiful yesterday but the trend was expected to change. The fog came in last night. It is cooler this morning. The sun and warmth have been delightful.

I headed to the rehab class yesterday and saw Dick for the first time in two weeks. He had lots of stories to tell. He and his wife headed up to an Indian Casino for a few days to just get out of the house. He loves this particular one because they have a good buffet with the best chocolate chip cookies. He even wears a special fanny pack to stuff extra cookies to go. But, this time he got busted for the first time! They made him eat them or leave them. Well, the eating began. Finally, a waitress whispered in his ear to just take them and off he went. He said he has to be more careful next time! Only Dick!

It was hot yesterday. Very hot. There was very slow traffic coming back over the pass after rehab. It was marvelous to feel the temperature dropping the closer I got to our house by the ocean. This weather makes me very lazy. I also have a harder time breathing in the heat.

In rehab, everyone’s oxygen saturation levels were down.

With the end of the liquid diet in site, I am still dreaming about food. With just over four weeks to go, I flipped through all the low-carb recipes choosing what I want to cook and eat the first week I transition to real food. Mexican Chicken Lettuce Salad – cooked chicken on lettuce topped with guacamole, salsa and fat-free sour cream. That will be the first meal of real food. I also am dreaming about cabbage! I loved having shredded cabbage with a low-carb dressing. Low fat, too! I have four weeks to firm up my menu plans.

Tuesday, June 21, 2011

A Day At Home

We had such a beautiful day here on the coast. It was 70 degrees, quite warm for this area. I didn’t want to go over the mountain pass as it was REALLY hot on the other side plus the traffic would be horrible coming home.

I opened up all the windows in the house and stayed home.  I even worked in the garage to rearrange an area and cleaned it all up.

Then, I texted Natalie to see if she, Winnie and Oliver wanted to come for lunch. I have been teaching Winnie how to cook and the next recipe on our list was pizza made with English muffins. They arrived just after noon, Winnie put the pizzas together and we popped them in the oven. They were a success! Even Oliver ate part of one!

Afterwards, I gave Winnie the hose in the backyard and pointed her towards the plants and flowers. It kept her very happy and very wet for an hour.

Oliver, on the other hand, was a little unhappy with grass. He didn’t know what to do with it, besides trying to eat it. He saw me move the hose around for his sister so he also tried. Too heavy!

At 3:00 they were heading home when Michael suddenly arrived. He really has not been feeling well with what I think is a virus. Coughing and mild fever. The fever broke yesterday morning but the cough is still with us.

We sat under the shade of the umbrella in the back yard and just enjoyed the sky, birds singing and chasing each other, trails from airplanes and the silence. I think he even drifted off.

We were both in bed and asleep by 8:30!

Monday, June 20, 2011

Return Trip

When it was discovered that I had a downturn with my lungs, we were so grateful that we had travelled so much in the past few years. We thought our traveling days were over. After meeting with the lung transplant clinic people, we realized that we can probably travel some more before enduring the transplants.

We have been talking a lot about our road trip. We have such great memories and photos to remind us of all of our adventures. During our 7,000-mile road trip, we began to keep of list of the places we wanted to explore more on another road trip. 

A return trip.

While heading to the Bourbon Trail in Kentucky, we passed Fort Knox and the Patton Museum. We are already beginning to talk about returning to this area to spend a day wandering around both these places. Also, we need to go to the other five distilleries to get our passports stamped for a free t-shirt.

In northern Arizona, I was fascinated to discover that there were many different Indian Reservations from various tribes in close proximity to each other. I would love to explore those areas. Also, there is a spot where a meteor crashed into the earth and made a huge hole. How could we pass that up? Chip and Betty said that they might join us there. That would be fun.

We realized that our US history of the Civil War was good but not great when we visited Charleston. We vowed to study up and return to tour Ft. Sumter and especially the Hunley, which is docked there. That is the Civil War era submarine that has been restored after being raised from the floor of the ocean.

Our next trip? We are already thinking about another trip in the fall of 2012. We will plan to return to the Bourbon Trail area then maybe head north to Maine to eat an obscene amount of lobster then drive down to New York. Or not. We have awhile to think about it!

Sunday, June 19, 2011

Quiet Week Ahead

It is nice to have a quiet week. There is only one doctor’s appointment on the calendar for next week and nothing else except rehab everyday. Nice. I asked Michael to bring down a few more plastic tubs from the attic for sorting. I really am in a purging mood.

Also, I had cleaned my closets over a week ago but just now realized that 90% of my clothes are going to be too large after the next five weeks and an additional 15 to 20-pound weight loss. I thought I would be able to wear some of the really nice workout clothes and some more casual jacket but, no. My friend Barbara wants them, which is so great, but I think most of them are going to be too big on her. There are some really nice jackets and slacks. I hope she enjoys them.
Maybe Winnie, Oliver and Natalie will swing by one afternoon for a visit. We will be cooking again from the Klutz Cookbook for Kids. I think we will make individual pizzas with English muffins. Winnie will love it!

Oh, and I am still hoping for some sunshine.

Saturday, June 18, 2011

June Nutritionist Visit

I had not seen the nutritionist, Mr. B. since two weeks into the 3-month long liquid/protein bar diet. It has been a long haul. I am now just over half way through the process.

At the rehab class, the RN has delighted in my weight loss and wants to weigh me every Tuesday. She is stunned at how quickly the weight is coming off. I have tried not to weigh myself every moment as the scale will seem to be stuck on a number for a few days. That can be frustrating. It is also a lesson. When I am on my own and keeping track of my own weight, I will step on a scale the same day of every week. I have learned that it is not the day-to-day weight but the long view is the truer indicator of loss or gain.

So going into the appointment yesterday, I knew that I had lost 20 pounds during the previous six weeks. I now have lost a grand total of 45 pounds.

Mr. B. was happy to see the dramatic loss as well as the subsiding of some of the side effects. I am no longer losing hair. I no longer have some issues with being cold. I also told him about the downturn with my lungs and the visit to the Lung Transplant Clinic which would not have been possible without the weight loss to get me under the required 30 BMI. 

The weight loss goal for the next five weeks is 15-20 pounds.

We agreed on a stopping date of the full diet and the beginning of the transition back to real food and my low-carb diet. I can’t wait. Imagine, real food for the first time in three months! The downside is that I will find it impossible to lose any more weight once I am off the meal supplements. I had wanted to lose just ten pounds more than the expected weight loss during the next five weeks.

That is really scary to me. If I want to lose more weight, I have to go back on the liquid/protein bar diet for a shorter period of time. It is imperative that I do not gain any weight during this transition to food or afterwards. I was also shocked to learn that during the transition back to food, all weigh loss would stop. So, I have to eat that horrible food and still not lose any weight! Seems so wrong.

So, here I go. It is the final countdown to July 21st when I can add one meal a day of real food to the meal supplement program.

Friday, June 17, 2011

Thanksgiving Plans in June!

Along with all the cleaning out of our old files and closets, I am also planning ahead. I am making Thanksgiving plan. In June!

To recap: My sister’s husband and I switch off holidays every year. One year I will cook Thanksgiving dinner and the next year, I will cook Christmas dinner. This agreement has worked well through the years. This year, I am scheduled to cook for Thanksgiving except there is a problem.

I hate cooking Thanksgiving dinner. It is a lot of work for a boring traditional dinner that has to be made all at the last minute. I am just not up to it.

Four years ago, I cooked my last traditional Thanksgiving dinner. It was too much. I was overwhelmed and exhausted and I got sick. It was just not worth it. At that time, I told Michael and my mom that I was done. Never again.

Two years later, I cooked a family favorite of Mock Chicken Legs instead of the traditional Thanksgiving dinner. I was able to make them the day before and survived the holiday without exhaustion. My sister and her husband were not amused with my break from tradition. He mentioned that they were going to cook a big turkey the next day.

It was not a success.

Recently, my sister phoned to tell me that they realized that I might need help with the holidays, they wanted to bring the turkey and stuffing goodies, have her daughter bring all the dessert ingredients and all of them stay with us for two days and cook it here. Imagine what stress that would be? Our kitchen is not large and I would constantly be washing dishes and cleaning up after the cooks. Besides, who is going to make the three meals a day while they are all here? It felt very overwhelming.

When hearing this, I knew that I was going to have to take the next big step. That step happened last week.

I called mom and asked her to make Thanksgiving luncheon reservations for all of us at a beautiful restaurant out in the country near her home. It serves a buffet of very high quality food. Besides turkey, they feature prime rib, lamb, chicken and tons of other food. Everything. We would meet all at her house for simple appetizers at noon and have the meal at 2:00PM. We can be back in the car heading home by 5:00PM. Mom would not have to pack and come in for a few days. She is feeling more anxious when she leaves  her home overnight the older she gets. She could stay home. She was pleased.

Perfect. We will pay the bill! Done.

I know my sister and her husband are going to hate this. It is a break from tradition. So, when shall I tell them? I will make the phone call in October to let them know that I am not feeling well and just not up to having everyone at our house. What can they say? They will say they will have Thanksgiving at their house. I will say that the reservations have already been made.

Maybe, just maybe, they will begin to understand that I need to adjust to keep carrying on with life. This is an adjustment.

Thursday, June 16, 2011

Reminder of Life

Being around children always reminds me that life goes on. It lifts my spirits. It gives me such joy.

Natalie had an appointment for a physical so I push 1-year old Oliver up and down the streets of our little town on Tuesday morning. It was cold and a bit wet but we had a ball. He is such a cutie and is now comfortable with me. He babbled and smiled at everyone who passed us by. He fell asleep about half way through our 45-minute walk.

Afterwards, we met Natalie coming from the doctor’s and were able to share a cup of tea together before he woke up. Winnie was and still is not a kid who likes to be hugged and held. Not a cuddlier. Oliver is a whole different story. He took one look at his mom when he woke up, squealed and gave her a huge hug. He just wanted to look at her and hug. It was so cute. Delightful.

Afterwards, I headed to the rehab class. Dick and Sherman were not there on Tuesday. Sherman had his monthly luncheon of retired UPS personnel and Dick was up at a casino for a few days. It was awfully quiet without them! I increased my time on the treadmill and still had 96% oxygen saturation. Remarkable.

Our friend, Randy is retired from the sheriff department but teaches a driving class to police officers, teenagers and other people here on the coast about two days every month. We have known him since he was a 16-years old kid. He dropped by after Tuesday’s class and had some dinner with Michael. His wife is the one who has lupus. It was great to chat with him and we got caught up on each other’s lives.

All in all, a very busy day. I slept like Toddler Oliver Tuesday night. Maybe even snored!

Wednesday, June 15, 2011

Trout Fishing and Announcement

My brother Chip and his wife Betty are on their summer fishing trip in Montana. Trout. They always catch their limit. In a text yesterday with Betty, she wrote that the weather was cold and they had only caught two trout and two walleye! By now, they usually are beginning to smoke their catch but it is just not worth the effort until about forty fish are caught. May not happen this year!

Michael’s twin gave him his son's high school graduation announcement. What to do? Several of my blogs have dealt with the twin, how he used me, how his wife didn’t like me and got rid of me within weeks after their wedding 20 odd years ago. I hear that the son and his mom don’t get along well. They fight a lot. I don’t know his son. I met him once at one of William’s concerts. Seemed like a nice kid.

Do graduation announcement carry an expectation for money?

It made me think back to the twin’s relationship with our son. William was pretty much ignored. No interest. No checks. No contact. All that was just fine with me.

It was sadly ironic that when William’s big group became very famous, suddenly the twin wanted a relationship with him. When he suggested to Michael that he and his son join them for dinner, Michael said no. He remembered. He didn’t like the twin’s sudden interest. It felt phony. He didn’t want William to be used the same way I had been for all those years.

So, the announcement is on the bookshelf above the TV. What to do? I will probably let it sit there for a few days. If Michael asks if we should send a check, I might ask if the twin ever sent William a check for anything during his entire life. Would that be mean or rude? Yeah. Probably.

Instead, I’ll probably send a card and a check.

Tuesday, June 14, 2011

Improving Rehab Numbers

Something has changed. During the Pulmonary Rehab Class, my heart rate, blood pressure and oxygen saturation rates are monitored. The normal saturation rate for me during exercising on 2 liter of oxygen on the treadmill is 91% and 93% on the recumbent bike.

I don’t know if it is the weight loss or the fibrosis has decided to slow down but my numbers have changed. Consistently, I now have 95% on the treadmill and 96% on the bike.

These numbers have never been so good.

I also feel like I could exercise forever. I am not sweating as much. I am not short of breath.

It feels good. The RN noticed and added the wall weight pulleys for my upper body as well as wall push-ups. Kind of exciting. I also think I will ask to add time on all the equipment. Time to begin to sweat again.

Monday, June 13, 2011

Food Dreaming

Photo of Beef Cheeks Taco

In the middle of my 3-month liquid/protein diet, I really have become obsessed with food. I watch Michael while he eats, I search my favorite food site – Tastespotting – and watch Food Network shows I have never watched before. I thought the opposite would be true, that I would be avoiding even food commercials. Funny.

So with all this input, I have decided to gather recipes to create a dinner menu for the next time Kimberly and William come for a visit. Last time they were here, we went to restaurant in the city where they shared 10 small plates with Michael. They loved the amazing array of flavors and textures in one dinner.

The light bulb went on. I have decided to try and cook around 10 small plates as a dinner for them during their next visit. It is going to take a lot of prepping and organization. It will be a whole lot more work than just serving a great dinner.

I am up for it.

So, what am I thinking about serving? I haven’t firmed up the menu but here are some of the contenders:
  •  Breakfast radishes in a sauce of garlic and anchovies.
  •  Potato-and-Brussels-Sprouts Gratin.
  •  Prosciutto and Fig Bruschetta drizzled with Honey and Black Pepper
  •  Sherried Mushrooms
  •  Baked Genoa Salami Chips
  •  Heirloom Tomato and Caramelized Onion Tart
  •  Sauteed Asparagus with Melted Gorgonzola and Pine Nuts
  •  Lamb Sausage with Feta
  •  Arugula Salad with roasted beets, blue cheese and pecans
  •  Olives
  •  Spinach Balls
  •  Bacon-Wrapped scallops with Habanero Mayo Dipping Sauce
  •  The final plate before dessert will be Beef Cheeks Tacos. I will make one each for them, which is all they will really be able to eat by the end of this event. The Beef Cheeks take hours to cook, which will be braised and roasted the day before.

So, that is what I am thinking but it will probably change as I keep searching sites during the final 6-weeks of this horrible diet.

Sunday, June 12, 2011

William's in Town

Our son was in town touring with the big group but was exhausted. We were to go to the concert last week but he was just stressed and not up to our visit. The night before, they were the guest stars on a late night TV show, flew to our city late and had to be ready for set up and sound checks the next morning.

After talking with him, they had been working straight for weeks and getting very little sleep. He said after they got back to the hotels after concerts, calmed down, fell asleep by 3:00AM, it was awfully difficult to have a 6:00AM call in the hotel lobby. Do that for several weeks and people begin to get sick.

From here, he will be home for two weeks. He plans to sleep for a week. After that break, they head to Europe for over a month. Hopefully, the tour manager has figured out that three hours of sleep each night for the crew is not the best thing for anyone. Hopefully.

This is going to be a tough year for us. He will be on four continents. He will be very busy. We probably won’t see him in person until Christmas. But, maybe he will be able to fly down for a short visit. Tomorrow's blog is the beginning of plans for that trip. I am planning an amazing dinner of small plates. What a dinner that will be! Cooking for him, taking care of him for just a day or two is one of the very best things in life for me. 

Saturday, June 11, 2011

Into the Garden

I have an appointment with the nutritionist late next week. What I have discovered is that if I do extra time at the gym or extra work in the garden, I have a better result. My weight lose improves.

The plan, beginning yesterday, was to work in the garden all weekend:  cutting, trimming, raking, hauling, and watering. I planned to sweat, even though it is foggy and cold. I did the entire front yard yesterday. Four hours straight. I slept really well last night.

Saturday will find me in the back yard, which needs less work but some major trimming. More hauling.

Hopefully, all this work will pay off when I step on the scale at Mr. B.’s office and I will have a pretty garden, too! 

Friday, June 10, 2011

Liquid Diet Update - Halfway

I hate all the liquid/protein bar diet food. It is getting really old and there is a constant struggle not to gag at each meal. I find myself dreaming about food and scanning food blogs and watching food programs on TV.

I am obsessed.

As of yesterday, I am at the halfway mark. Only six more weeks to go. Forty-two days, but who’s counting?!

Now the good news – I have lost almost 20 pounds the past six weeks. When added to the 25 pounds I had lost from December to April, that brings the grand total to an impressive 43 pounds. I hope to lose another 15-20 pounds during the final six weeks.

When transitioning to real food, I will be adding just one meal a day of food to my diet for the first two weeks. I am going back to my low-carb food diet. It sounds glorious.

My guess is that it will begin with soft very lowfat food to allow my body to begin to process food again. Fish and cooked vegetables. Eggs. That sort of thing. 

During the following two weeks, another real food meal will be added to my low-carb diet. After that, the third and final meal will be added. That means an additional month of having to eat the horrible liquid/protein bar diet. What joy! (written with a dose of sarcasm!)

Then, for the next several months, we will be adding limited and specific carbs back into my diet to see if I can now process them properly. Hopefully, I can eat some fruit or bread or grains or yogurt once in awhile without gaining weight. Wouldn't that be lovely?

I hope to stabilize about 5 pounds above the minimum BMI of 25 for lung transplants. That is the whole reason for this entire diet. For now, the end is in sight!

Thursday, June 9, 2011

Filing Files

The recent worsening of my lungs has forced me to face some unpleasant tasks. I realize that if I suddenly died, Michael would have a very difficult time finding where all the financial accounts were, the key to the safe deposit box, would be clueless of what to do when, all of which would make the grieving process even more difficult.

For the past several days, I have been sorting tons of just plain stuff in plastic bins from the attic and an old filing cabinet. The bins contained every check I had ever written in the past 37 years. There were also great finds like the original contract for a Porsche we bought in 1976, letters from my dad, letters from my grandfather, a beautiful tourist-style Old Mexico silk scarf from the 1950’s, newspaper articles about some things I did – all good!, letters Michael’s mom wrote to us while her husband was dying of thyroid cancer, letters my brother wrote to us while he was in college, an old boyfriend’s love letters, and every tax return beginning in 1971!

I sorted into piles: one for shredding, one for recycling and one for trash. The largest of the three was the shredding pile. All those checks! All those tax returns! Yesterday, I found a shredding company near my other rehab, they came to the car and collected three large trash bags and charged me $30.00. Easy.

Only two bins done. Many more to be emptied.

After getting home yesterday, I began to set up the files, which found a home in a newly installed filing cabinet in the guest room closet. In the very first file, I have included a list of all my medications, surgeries and illnesses and my family history. I also included a front page that says to take me to my university hospital and notify the lung transplant clinic upon my arrival. Michael had been concern that he would not know what to do in an emergency. All he has to do is grab this file and hand it to the EMTs.

The next file is the list of all of our accounts including life insurance policies. Banking, retirement, Medicare Set aside. All of them. Included in this file is a list of things to do like contacting all the accounts and changing them to his name only while adding William as the beneficiary. I even included phone numbers. I wrote where the pink slips to the cars were located and even told him to order 10 death certificates. He is going to need them!

Also in that file, I made a separate list of things for William. Two of the accounts – the Workmen’s Comp settlement and the Medicare Set Aside – list him as the beneficiary. I wrote where the accounts are and how he needs to access them. I told him what I wanted done with my instruments and the very last thing I listed is that he needs to take care of his dad. He is going to need him for a while.

The rest of the files are set up for each individual account. It's all there. Michael will have everything he needs in one place.

So it is a beginning. A good start. I have so much more to do. Many more bins to sort.

I will sleep a bit better knowing everything is in place.

Wednesday, June 8, 2011


Where is summer? It is under those clouds, that’s where!

I have always hated summer because I was always dealing with weight issues. Hot weather equaled shorts and t-shirts and sandals. Exposed. Wouldn’t you know that the one summer that I am thinner would be the coldest summer in decades!?!


I am itching to wear my shorts. And my smaller shirts. And my sandals.

I am freezing, at the moment.

Winnie just said to her mom, "Do you remember when we had sunshine?" It was a bleak spring and now summer looks the same.

I hope you are enjoying the sunshine wherever you are!

Tuesday, June 7, 2011

Snake Oil

For many years, I listened to Dr. Dean Edell on the radio on the way home from the rehab class. One of his pet peeves was homeopathic medicine. He explained that one took whatever was a problem and put a drop of it into a gallon of water. Then a drop of that water was put into another gallon of water then a drop of that was put into different gallon of water, etc. Eventually, it was like having a drop of the problem in a swimming pool then sold to the public as homeopathic.

He kept asking for double-blind studies to prove the claims of cures. None have ever been proven to be the cure for any problem.

When going through the Workmen’s Comp lawsuit, the other side’s doctor who evaluated me asked if I was doing any of the homeopathic processes to get the mold and fungus out of my lungs.

In fact, I was being pressured by someone to go to a chiropractor of hers to get the mold out of my lungs! It was going to be very expensive.

I told the doctor that I had not and that I did not want to do anything that may possibly get in the way of my medications, diet and exercise program. He told me not to do it as it was a huge waste of time and money. He also told me that I was one of the few to arrive in his office without doing it.


So, last week, a friend crossed over a line. It makes me not want to make myself very available to her anymore.

I met her in the rehab class many years ago then they bought a house and moved about 50 miles away. She often would have an appointment in this area and we would meet for tea. We stayed in touch. We were friends.

She just phoned to tell me that she is now a distributor of ionized water that will change my life. She feels so much better. It oxygenates blood.


“How can drinking water put oxygen into your blood system?” I asked.

“Oh, it has oxygen in it and it is absorbed into your system. Only 15% goes into the stomach!” she replied.


She continued, “Oh, we are going to get FDA approval.”

Right. I know the process because of all the drugs in the pipeline that I have been following. Her statement was made to make someone feel that it is a soon-to-be-proven health benefit.

She asked if I believed in homeopathic alternative medicine. I was honest. “No. I guess I have listened to Dr. Dean Edell for too many years. I also have to tell you that another person in the rehab class has been a distributor for this “oxygenized water” and was talking with the RN about it. The RN laughed and said it was a scam as oxygen can not be absorbed into the blood but only through the lungs.”

There was a long silence on the phone then, “I have to tell you that I feel so much better and need less oxygen just by drinking this water. It really helps. The doctor in Japan who sells this water insists that his patients drink it after surgery.” Snake oil salesman.

A long silence from me.

Then I got the hard sell: Can we meet tomorrow? When can you buy one? It is installed on the faucet and is not expensive when you think of the health benefits. I can send you a bottle to try.

I told her I would have to read the information. I also thought to myself that I wouldn’t be answering the phone anytime soon.

I also know that it is time to distance myself and slowly remove myself from the friendship.

Very disappointed.

Monday, June 6, 2011

New Friend? Er, No.

During the orchestra rehearsals with the chorus for the last concert, I began to chat with a woman in the chorus. She asked for my phone number, called and we met last week for tea.

We had to meet near her home as she is also disabled and would have to walk to wherever we met as her car had been stolen. She can’t afford to buy a new one.

As the conversation continued, I learned that she lives with her mom and step-dad in a very negative environment, she has three children, all of whom live with their fathers, she was diagnosed with bipolar when she was 18-years old and is living on just $800.00 per month.

I am okay with all of the above. Stuff happens.

During the conversation, she mentioned that she depends on others to drive her around. Someone drives her to the chorus rehearsals and concerts. She wanted to join another chorus but she needs someone to drive her. 

Then, it happened. She wanted to know if I wanted to go to concerts – and by the way she would need a ride. She wanted to know if I could go to a museum with her – and by the way she would need a ride. She wanted to know what we could do together. At that point, I realized that what she really wanted from me was another person to take her places. I also realized that it would grow to other things like needing a ride to doctor appointments, etc.

I told her that my stamina was limited and having no immune system, I was not able to be around people or crowds. So, we could meet for a chat and a cup of tea once in awhile.

We’ll see if I ever hear from her again.

Sunday, June 5, 2011

Oliver's 1st Birthday

Winnie’s brother turns one this weekend. We were invited to lunch on Saturday to celebrate this first milestone. Michael was not able to be there. Winnie noticed!

The last several weeks, I have been sewing. He is far past being a baby so I wanted to make him a little boy quilt. The pattern is a “Rail Fence” made with a dinosaur motif and denim. I am happy with it. I added two books about dinosaurs for this quickly growing cutie.

Many years ago, I made a “Spider Web” quilt for Winnie when she was just a few months old. It was time for Oliver to have his own quilt.

The party was fun. On Friday, Winnie made the ice cream cone filled cakes at my house. It was a fun way for her to contribute to her brother's big day. We even added dinosaur sprinkles! It was his first taste of sugar and he loved it! Ate every last bite!

A lovely way to spend a Saturday afternoon.

Saturday, June 4, 2011

Exercising After Lung Transplant

This article was on the KCBS Web Site earlier in the week:

It states the importance of exercise after lung transplants. As you may know, I feel that my hard and sweaty exercise routine 5-days a week is one of the reasons my fibrosis had been held at bay for so many years. I never would have thought of myself as a gym rat!! Now, I am proud of that title!

It is nice to know that my instincts were right. Here is the article about the importance of exercise after transplants:

PALO ALTO (KCBS) –Stanford doctors now know that exercise for lung-transplant patients is key to their survival. That’s why they created the “Transplant Boot Camp,” which now inspires the former patients to become athletes.

Amazingly, 18-year-old Brett Barker, who had a double lung transplant only eight weeks ago is able to climb the Stanford track bleacher stairs. "Right now I’m focusing on getting a lot of walking in," said Barker. “I walk around the track as much as possible, and I like to hit the stairs for some extra cardio just for variation.”

Barker’s mother Sheri Johnnie said that it’s incredible how much her son can do thanks to this boot camp program. ”It is such a miracle,” said Johnnie. “Having watched him decline in health over the last several years, I would have had no idea that now he would be able to do so much. He’s becoming more independent every week.”

Anabel Stenzel, 39, who had a double lung transplant in 2000, helped to found the boot camp three years ago. ”When this was started, we really hoped that it would allow people with transplants to come and reach their maximum fitness potential,” said Stenzel. “Many times people look at transplant recipients as weak or sickly, but we really learned at the Transplant Games that we can achieve athletic prowess.”

Two decades ago, doctors were leery of recommending much physical activity, fearing that it might cause the lung to be rejected.

”I don’t think we understood as well the benefits of exercise because we didn’t understand the muscles after transplant really do need that extra training,” said Dr. David Weill, director of Stanford Hospital’s Lung Transplant Program. “Some of the medications that patients are on after transplant, particularly the steroid medication, actually saps the muscles of their ability to function properly.”

The hospital is now publicizing the boot camp in hopes of getting more people to consider becoming organ donors.