Living Well with a Bad Diagnosis - Lung Disease

Friday, January 31, 2014

Back to the City

I made it through yesterday on five hours of sleep and stumbled into bed early last night. My eye appointment to check the high pressure in my eyes due to prolonged prednisone use went well. I arrived early, the doctor saw me early and I was finished before my appointment time. Lovely. Rehab class was fine. I was dripping with sweat afterwards.

But the focus of my world is today's appointment with Mr. B, the nutritionist. Mom is coming along for the ride. From her home, it is a nasty freeway ride into the city. It is always stressful trying to get to the hospital and find street parking. I get nervous. But the good news is that Mr. B. is always on time. Once I meet with him, we will hop back into the car, make our way through the city to my university hospital campus, valet park the car, cross the street, take an elevator up a flight and pick up my liquid/protein diet food for the month. YEAH!

We will drive a special way home past all the beautiful mansions. Mom has not been in that area of the city in many years. I am sure we will talk non-stop throughout the day.

Busy weekend ahead: the new diet begins, orchestra concert, maybe seeing Natalie and Winnie at the concert, Superbowl.

Happy Friday!

Thursday, January 30, 2014

Simple Miracles Happen

I climbing into bed last night and couldn't sleep. My mind wanted to process the day and would just not calm down. Finally around midnight, I settled into my chair in the family room, wrapped covers around myself and drifted off.

The drive in the gentle rain into the city was rather easy and took just under an hour. I think it was a record breaker! Even more miraculously, I found street parking! Free! I arrived at the clinic 25-minutes early, caught the elevator with someone who recognized me from three years ago and we landed on the floor of the clinic together. My old buddy at the front desk immediately remembered me and I was greeted like a returning hero. No ID required!

Then I waited. And waited. The staff went home and I was still waiting. My 3:30 appointment happened at 4:40. I was pacing as I was worried about the long rush hour drive home then the orchestra dress rehearsal. Finally, the woman who road the elevator with me went to check to see how much longer. Five more minutes. Then we began to chat. I explained to her why I was there, she told me that I would be approved for the liquid diet during this appointment but will need to see the nutritionist to actually begin the diet. YIKES! I had been watching all the people coming and going and all making appointments to see him for the past almost two hours. They were having to book their appointments in March. I did not want to have to wait another month to get going on the liquid diet. She said,"Let's book him for you now and just let the doctor know you have an appointment with him." When she asked when I could see him, I told her anytime and I would be there. She smiled, looked up and said, "Oops, there just was a cancellation and he has an opening this Friday at 11:00." What?!? I can still begin the diet on Saturday as planned? Yippee!

I think this falls into the category of always being nice to the front desk people. They can make or break your life. I don't understand what happened but I think she worked some magic.

Finally, I met the nice, young doctor. It began. I gave a brief history of my lung disease, prednisone side effects, my rehab and exercise programs, my previous weight loss at the clinic and my desire to begin a liquid diet ASAP. She listened to my heart and lungs, asked more questions then gave her approval.

While I was in the waiting room, I must say that I felt like the skinniest person in the room. When the young woman took my vitals, she told me that I looked fantastic and was surprised that I wanted to lose some weight. That made me feel good! Then, the doctor told me that even though I gained back just a bit of weight, I was considered a success as I had not put the weight back on over the past three years. That also made me feel good.

After we said our goodbyes, I walked quickly back to the car, up a steep hill, in the light rain, hopped into the car and crossed my fingers for a safe drive home. Magic happened again. There was no traffic on one of the most major streets in the city. I worked my way through Golden Gate Park onto Sunset Ave, went past the Zoo, past the PGA major golf course near the ocean, hit the exit and just flew down the coast. It did not feel like a rush hour. Michael and I arrived home within minutes of each other. We ate leftover roasted chicken for dinner, threw my string bass in the car and I made it to the dress rehearsal on time.

It was a long, intense night but Gerry and I played well and feel ready for the orchestra concert on Saturday night.

This morning, I have to be out of the house very early for the housekeepers, then I am seeing my glaucoma doctor to check on the high pressure in my left eye. All this fun will be followed by pulmonary rehab class. I am going to crawl home this afternoon.

Wednesday, January 29, 2014

Weight Management Clinic Appointment Today

Late this afternoon. My appointment with the Weight Management Clinic. I am nervous. I will be meeting with a new doctor, which is always a challenge. I try to insure a doctor who has just read my medical file that I am stable, fine, not crazy, not depressed and just want to get on the liquid diet. Often they are stunned when they walk into the room as I do not look like what they expected. I am smiling, clean and well dressed. I worry she will feel that I am not physically stable enough to go on the diet because of the recent bouts of pneumonia. I worry she will want to do the regular diet for a while but I don't have the time because of our trip in May. I wish I had been able to get an appointment in early January!

So today, while I wait to leave for the hour plus drive to the appointment, I am going to rest, shower, do a load of laundry, fill the gas tank in Michael car, have lunch and try to relax. It is going to be a long day as the orchestra dress rehearsal is tonight. A dress rehearsal is when we run through the entire concert in program order. It is meant to hear the music in the concert hall instead of the rehearsal space. It also is to hear the difference being surrounded by different instruments. For example, we rehearse near the tuba, who often plays our same notes. In concert, he is far away from us.

The other news is there is rain expected this evening, hopefully after I get home from the rehearsal. There is nothing like hauling a huge instrument and being soaked as I don't have a third hand to hold an umbrella! I knew I should have chosen the flute instead of my massive string bass!

May this storm be followed by many more. We so need it!

Tuesday, January 28, 2014

Ready to Begin

 I am carefully eating my way to the weight management clinic appointment tomorrow. Knowing that I will not be eating any real food for at least a month, it is a challenge not to eat a lot of unhealthy food before the protein diet begins. It is foolish to add additional weight that will take time to get off. I fought the urge last time and am now fighting it again.

For the appointment tomorrow, I am bringing along all the menus of the week and recipes I used so the new doctor will see that I am following the food plan. The weight gain of eight pounds in three years? I blame mom! HA! Before her move two years ago, I never ate lunches out. Together, we enjoyed lunches in real restaurants, so I gained weight. Now, I am VERY careful what I order and have been able to keep my weight fairly stable. 

To support the month of the liquid diet, I want to fit in extra exercise. If I am suffering through a liquid diet for a month, I want to get the most out of it. So, I have a patch in the garden that needs weeding. A lot of weeding. Hours of weeding. I am saving it for the weekend after I start the diet. I really want to plan extra exercise like a short walk along the ocean in the afternoons. Just a bit of extra movement. Not crazy but just extra. All of this will be added to my four days a week, one-hour workout routine in hospital gyms as a part of my pulmonary rehab program, 90+ minutes of Power Yoga on Wednesdays and major gardening for hours on Saturdays. The expectation is to lose ten pounds in the month but I'll bet I will lose more because of my exercise routine.

I want to get going. I want to get the doctor's approval so I can begin on Saturday. Let the fun begin!

Monday, January 27, 2014

It Feels Like a Monday!

There is hope for some rain possibly this week. We are in a drought situation and the poor ground and spring plants need the gentle rains. But today, my life will be in a car. Mom has a dentist appointment so I will drive the pass to grab her to bring her back to the coast for the 10AM appointment, we will have fish tacos for lunch afterwards then a quick run back over the hill to the butcher's and Trader Joes.

We will talk the entire time and sadly, we will probably talk about the death of Betty's sister on Saturday. She had been living near Chip and Betty in New Mexico and had beaten cancer four or five times. She finally was done. She was tired and didn't want to fight anymore. She died surrounded by her children, Chip and Betty. I spoke with Betty for an hour yesterday. She needed to talk. She had not had the time to absorb it and it will take some time.

My appointment with the weight management group is Wednesday. The day is going to be a challenge. The appointment is 3:30, it is over an hour of city driving to get there and, by the time I leave, I will be in the middle of the city during rush hour. It will probably take over 90-minutes to get home and I need to be out the door by 7:00 for the orchestra's dress rehearsal. Early Thursday morning, I have an eye doctor appointment and the housekeepers are due. It is going to be exhausting.

I am so looking forward to get going with the liquid diet and hope I am given the approval to buy the food at the other hospital site on Friday, which means another run into the city. I want to begin on Saturday. When I made my list of food for the week, it was with the fact that it will be my last food for over a month. We are splitting a dry aged rib-eye steak, mushrooms and asparagus tonight then will enjoy lamb stew and roasted chicken for the rest of the week. While I will be on the liquid diet for Super Bowl Sunday, I am cooking Baked Beans with Sauteed Apples and Kielbasa at Michael's request. Even on the diet, I will continue to make dinner for him every night. No licking fingers!

Sunday, January 26, 2014


End of January. Temperatures in the high 60s. Tourists wandering around Main Street a day after Marvericks, the big wave competition. My New Year resolution this year was to connect with my teaching friend Matt from the school where I got sick. We had run into each other in the grocery store but had not shared lunch and time together for a couple of years.

We met for lunch yesterday, at a restaurant on Main Street for lunch. We chatted for 90 minutes, walked around the corner to see his new Volt, which looked very cool. He walked me back to my car in front of the restaurant, we were standing leaning up against the passenger side when suddenly one of the founding teacher's from the school appeared on the sidewalk. "Patty!" She looked good, had retired well over 10 years ago and was just having a bit of lunch with her husband. We all were chatting when I noticed the current librarian, who has been at the school since 1986. I had not seen her in many years. We all must have talked an hour together, sharing updates of former students, former teaching staff and the drama of the place. They all had just come to the coast for the day. Love that. Finally, they all left, leaving Matt and me together again. We talked a bit more, I drove home and realized I had a 3.5 hour lunch. It felt like I had played hooky from my Saturday gardening routine. Michael walked in a few minutes later while I was watering the garden. We sat in the garden and I had a lot to share with him.

My day talking about the school brought it all back. All the work, all the drama, all the politics, all the passion and to me, the fun of working in such a dynamic place. A nationally recognized school. School for the children of movie stars, internationally renown CEOs, founders of top Silicon Valley corporations, and people who brought the whole new industry of Bio Tech to the world.  It was the peak of my working career. It was when I truly felt that I was doing the work that brought together all the experience of my life; my working with and understanding children, my business background to deal with budgets, my ability to engage the department's staff to encourage improvement and constantly moving forward. I learned how to hire and sadly, had to learn how to fire. I grew and developed.

I vowed to Matt that we would meet for lunch again after school is out for the summer.

After I got home, I received an invitation to the beautiful Susan's memorial service on February 23rd. That will be a very emotional day for me. I have so much respect for her as a person, mom and wife that the loss at such a young age seems so very wrong. So very sad.

Saturday, January 25, 2014


I must have caught Dr. K. with her mind on other things. In the rehab class Thursday, I was feeling fine but just could not get my saturation rate above 92% while on the treadmill until the oxygen was increased from 2 to 4 liters. I have not needed that much supplemental oxygen in a long time. I told the RN about the whole question of the failing Nissen and whether I might have an infection brewing in my lungs due to microaspirations from GERD.

I promised the RN that I would email Dr. K. to give her the information.

Before heading to my appointment in the city with my endocrinologist yesterday morning, I wrote this to Dr. K.:

During my last appointment, you asked if I had any signs of reflux. Two weeks ago, I had burping and indigestion after eating a salad. A week later, it happened again after eating another salad. It seems to be connected to vegetables and I have been struggling with it on and off this week. In rehab yesterday, I needed 4 liters of oxygen instead of 2 liters to keep my sats above 92%. I feel fine. I am not coughing. It made me wonder if this was the possible cause of my recent bouts of pneumonia. Protonix never worked for me. I have been eating Tums when I begin to feel it coming on and that seems to knock it down.

I will be seeing Dr. M. on the 5th floor this morning if you want me have an xray, I will be in the building. You can always reach me at (cell phone)

I thought that maybe she could advise me that I might have an infection causing the desaturation, she might want to do an antibiotic run, she might order a prescription for acid reflux, she might want me to see the group that did the Nissen to test if it had loosened causing the indigestion, she might want me to swing by the clinic to listen to my lungs. Nothing.

She phoned after I got home mid-afternoon, said that she wondered if the Nissen was wrapped too TIGHTLY, I replied that it had been diagnosed as too tight but we had known that all along. She said to avoid salad and vegetables, which is exactly half of my very limited diet. Nothing. No other anything. She seemed very distracted. I rather expect her to contact me next week after I come drifting back to her mind.

In the meantime, I am taking Tums, sleeping on my wedge, watching what I eat, cooking my vegetables, eating no salads, drinking no carbonated waters or drinks but frustrated. Is it going to take another bout of pneumonia to address the bigger issue? There is a problem: I am needing a larger amount of supplemental oxygen, I have sudden onset of indigestion and....nothing?

Friday, January 24, 2014

Mavericks Surf Competition Today

When I was in high school in 1970, a girl friend and I would drive over the pass to the harbor on the coast, walk to the west side of the point and sit on the empty beach, play guitars, sit in the sun and just hang out. It was a long walk from the dirt parking lot to the beach, so we were often the only ones there. It was odd but once in a while a guy with a surf board would run past us to the end of the beach and disappear around the far point.

What I didn't know at that time is that there was a wave around that point at the end of that beach. A big wave. A world famous big wave.

It was just announced two days ago that Mavericks, the big wave competition, is on for today. It is by invitation only. Famous surfers from all over the world are in town right now, as the harbor is less than two miles north of us. It you have ever seen the movie, "Chasing Mavericks," you have seen the big waves. I remember when it was being filmed and the waves were big but not as big as expected during the competition today.

If you want to watch it, it is best to view it from home as it is a half mile off the coast, the bluffs above it are off limits so the expected crowds will pay to watch it on a big screen in the parking lot of a hotel at the harbor. To watch a live stream beginning at 8AM PST, go to

The crowds. A lot of people are due here in town today. The pass and the route along the coast will be like LA during rush hour. The problem? I have an appointment to check my thyroid with Dr. M. at 10:30AM in the city. To get there, I would usually drive right by the harbor as I head north. The plan? I will go around, over the pass then head north, which will add an additional 30-minutes to the hour driving time. The real problem will be trying to get home.

If you want to read about today's competition, here is this morning's article in the SF Chronicle:

Thursday, January 23, 2014

Lung Transplant Article

This was in the local paper yesterday. Thought I would share it.

2 sisters get lung transplants from same donor

Updated 3:27 pm, Wednesday, January 22, 2014
  • In this Jan. 14, 2014 photo, Irma Myers-Santana, left, and her sister Anna Williamson visit in Williamson's hospital room in Houston. Earlier this month the sisters ended up in the same operating room, each getting one lung from the same donor. Photo: Pat Sullivan, AP / AP
    In this Jan. 14, 2014 photo, Irma Myers-Santana, left, and her sister Anna Williamson visit in Williamson's hospital room in Houston. Earlier this month the sisters ended up in the same operating room, each getting one lung from the same donor. Photo: Pat Sullivan, AP

HOUSTON (AP) — They quibble, joke and share knowing looks, finishing each other's thoughts and making snide comments — like many sisters. But a recent heated argument was unlike any other they've had, and it ended in a most surprising way.
For months, 71-year-old Irma Myers-Santanaand her younger sister, Anna Williamson, 69, had been debating who more urgently needed a lung transplant, each wanting the other to go first. Earlier this month, though, the sisters ended up in the same operating room, each getting one lung from the same donor in what doctors at Houston Methodist Hospital say is a first for their facility.
"It's never happened. ... We've transplanted siblings before, but years apart," said Dr.Scott Scheinin, who did Myers-Santana's transplant. "It's a little bit of serendipity."
The sisters both became ill about 10 years ago with idiopathic pulmonary fibrosis, a little-understood scarring of the lungs that often requires a transplant and kills more people than breast cancer every year, said Scheinin.
Doctors, assisted by a computer program, look at blood type, height and severity of illness to match a donor and a transplant patient. The likelihood that Myers-Santana and Williamson would meet all three criteria at the same time was small, Scheinin said.
The sisters' situation was further complicated because they insisted on a "bloodless transplant." They are Jehovah's Witnesses and do not believe in receiving blood transfusions. They live in California, but Houston Methodist Hospital is the only facility in the country that does such transplants.
"The irony of this whole thing is that we're sisters, we're both Jehovah's Witnesses, we have the same blood type and we got (the lungs) from the same donor," Williamson said, her eyes tearing up as she sat next to her sister, able for the first time in years to complete a sentence without coughing.
"It's a miracle to have all those things lined up like that," Williamson said.
Until the transplant, Williamson coughed all day and had to be attached to an oxygen tank constantly. About a year ago, her doctor told her she needed a transplant.
"I couldn't talk; I couldn't laugh," Williamson recalled.
So, Williamson and her husband headed down to Houston 10 months ago. Within six months, Myers-Santana, who had a sudden, violent decline in her health and could barely breathe, joined Williamson, hoping she, too, would be a viable candidate for that type of transplant.
Then the waiting began, with the sisters housed just 10 doors apart in a Houston RV park. On a few occasions, each woman was offered a lung, but they bickered over who should take it.
"If we hadn't had the transplant when we did, she would be dead right now, dead," Williamson said adamantly, her sister sitting beside her in the hospital room.
Myers-Santana agrees with that, yet believed Williamson needed to have the first transplant.
"Her coughing just hurt to my core. You can't help someone that coughs like that," Myers-Santana said. "It's so hard to watch, and so I felt she needed it more than I did.
"I can live with a cough, but she can't live without oxygen, so I win," Williamson shot back, smiling at her sister.
In the end, though, the individual lungs weren't a match.
Now, less than two weeks after the surgery, Williamson has the right lung and Myers-Santana has the left. They have on makeup, their hair is done, and they joke with their doctors — extending an invitation to Santa Barbara for free manicures and pedicures at Williamson's salon. Their husbands and children linger in the background. Colorful balloons wishing them well float above.
They can talk, joke and laugh without an oxygen tank.
And they can breathe easy.