Living Well with a Bad Diagnosis - Lung Disease

Thursday, May 31, 2012

Sleep Apnea, Lung Disease and BiPAP Machine

I learned something thanks to Cindi at the other rehab. She had a sleep study and was overwhelmed with the results. She made me a quick copy of her results and asked that I phone her later.

It was a bad report. Really bad. She has severe sleep apnea. She also has sarcoidosis, which is a lung disease. Looking at the report, she was never able to get into REM sleep. This would explain why she has been exhausted and feeling awful. After they hooked her up to a CPAP machine, up went her saturation levels and she went into REM sleep.

But there was an additional problem. The CPAP failed to optimally control her sleep apnea. With her lung disease, the high pressure of the CPAP machine made it difficult for her lungs to exhale into the pressure. Sooo, that is when I learned about BiPAP.

"BiPAP" is a term that is sometimes used colloquially to refer to bilevel positive airway pressure(BPAP). A BiPAP machine, which is more accurately called a BPAP machine, is a breathing apparatus that helps its user get more air into his or her lungs. Created in the 1990s, the BPAP machine is derived from the continuous positive airway pressure (CPAP) machine. Unlike a CPAP machine, however, a BPAP machine uses variable levels of air pressure instead of continuous pressure. Both of these devices are used to help treat breathing difficulties, particularly obstructive sleep apnea.

How the Apparatus Works

A CPAP machine works by maintaining a certain amount of air pressure within a mask that the user wears, such as while he or she is sleeping. The air pressure keeps the wearer's airway open, allowing him or her to breathe easily while sleeping. One problem with an apparatus that uses a continuous amount of air pressure is that the person has to exhale against this extra pressure. This makes it imperfect or unsuitable for certain people, such as those who are suffering from neuromuscular diseases.
Brilliant. It constantly changes pressure to allow the person with a lung disease the opportunity to exhale but still forces enough pressure to keep the airways open to control the sleep apnea. If you have some of the symptoms below, please talk with your doctor about arranging a sleep apnea test. 

  • Waking up with a very sore and/or dry throat
  • Loud snoring
  • Occasionally waking up with a choking or gasping sensation
  • Sleepiness or lack of energy during the day
  • Sleepiness while driving
  • Morning headaches
  • Restless sleep
  • Forgetfulness, mood changes, and a decreased interest in sex
  • Recurrent awakenings or insomnia

Wednesday, May 30, 2012

Pushing vs Overextending

Yesterday, I worked out at the other rehab for the first time in well over a week. I swear that when I began on the treadmill, I could feel my thighs jiggling. Twenty minutes later, no jiggle. What a great feeling! I am back. Heading for another workout this morning.

I also had a chat with Dick's wife who we affectionately refer to as "The Saint." He is one of my rehab boys. She has become more and more disabled to a point where she doesn't leave the house, wheelchair bound and in constant pain. She needs a hip replacement. After lots of tests and time for the removal of prednisone from her body, the date for the replacement has been set for Monday morning. She is nervous having never had any surgery before. I wished her the best of luck.

Also yesterday, Mom and I shopped before heading to her university hospital for a checkup on her Mycosis Fungoides and several spots on her body. It was a long appointment. Over ninety minutes. All is well, so far. She will hear the results of the biopsies soon. I didn't get home until 5:00 and was exhausted. Today, we are doing some hardware store shopping and Trader Joe's.

I am feeling good and sleeping well. The challenge is that I am trying to find the balance again of pushing my body but not overextending myself.

Tuesday, May 29, 2012

Back in the Saddle, Again

Back to the routines. Back to rehab! It has been over a week of no rehab. I am going to miss the normal Tuesday rehab class to take mom to her skin doctor. She had cancer 15 years ago - Mycosis Fungoides -  and it has not returned but they still want to monitor it. Also, she suddenly has some funny things appearing on her face. Time for everything to be checked.

Back to rehab. I am heading out early to go to the other rehab. I want to sweat.

In other news: We are surrounded by new neighbors. New renters have moved in across the street but we have just spotted a woman getting into a car. Rumor has it that they also have a high school aged son. We will introduce ourselves to them whenever we catch them coming or going.

The house behind us has been empty for over a year. It has been lovely not having any noise and not having to be careful of our music playing too loudly. The house is beautiful but it has a sad history and I hope that chain of bad luck has been broken. An older couple has moved in or at least we have been told it is an older couple. Probably our age! HA! They are quiet. Very quiet. Thank goodness! Again, we have agreed that if either of us spots them while we are driving by, we are going to stop and introduce ourselves and invite them over for a glass of wine in our garden.

So, today brings back routines and schedules. I have enjoyed the long weekend free of such impediments.

Monday, May 28, 2012

Recovery Time

Recovery time. It has been a very busy week and I have been exhausted. I really don't want to get sick again. So yesterday, I stopped. After Michael left in the morning, I climbed back into bed and slept another two hours. Around noon, I got up and dressed and had a bit of lunch.

I never stepped a foot outside. It was cool here. Cloudy and a high of 58 degrees. 

Having to stop to recover is probably the hardest thing I have had to learn while living with an ILD. Cancelling plans, frustrated that I can't do it all and bowing to the disease are still hard for me to do. I am still learning.

Photo of a Purple Heart. I have
A moment regarding Memorial Day: My mom was a Gold Star family. It was hung on the window of their home for all to see. They had experienced a death in the family in WWII. Her brother Jerome was a navigator in a "Flying Fortress" and during a bombing run from Cambridge to Bremen, they had engine problems. He was not supposed to even be on that bombing run. They were sitting ducks. They crashed. Two men made their way back to England, two others became POWs and the remaining men died. Their bodies were never recovered. 

My grandmother searched for him until her death at the age of 57. My grandfather was not grieving properly, according to her and their marriage suffered. She was also so focus about the loss of her son that she forgot about the 13-year old girl who still needed a mom. 

Today, I think of Jerome and what a loss his death was to the world. He was a brilliant engineer, a published writer, published songwriter and pianist. I also think of all the families who are grieving the loss of a family member and maybe a 13-year old girl whose life will never be the same again.

Sunday, May 27, 2012


It's predawn 4:30 Sunday morning. We are having coffee watching the beginning of the F1 race from Monaco. Yes, we have a DVR and yes, we always record the race but this morning, we were just awake. We are going to be wrecked tonight.

Michael is trying to hit some deadlines so he is booked this weekend. I am trying to recover from the wild week of the ATS conference and the wedding. How? I did six hours of yard work yesterday. It felt great. My body was screaming to be moved. Today, I am going to drive into town and take a long walk. And a nap afterwards!

The race begins in minutes. Michael Schumacher had the pole taken away after a penalty from the last race. Mark Webber leads the pack this morning. Red Bull. Tough track. I am still pulling for my rookie Romain Grosjean.

Saturday, May 26, 2012

One Outfit, One Day

Thursday was Liver Clinic day. I always dress up for doctor appointments so I wore my slim cut Levi's with a white shirt and a short, light green, thin leather jacket. Also wore the cute black shoes. Little did I know how many situations throughout the day that outfit would be appropriate.

After the Liver Clinic, Mom and I ran some errands before having lunch on the Avenue surrounded by lovely looking women. The outfit worked. Afterwards, we went to the play at her church surrounded by grandparents who were all beautifully dressed.

There, I recognized and went over to speak with the parents of the Jim, who started the Folk Mass group in 1967. I joined soon afterwards and it was because of that group that in 1971, I met Michael and we have been together ever since. Jim's parents had 9 (!) children and I was friends with two of his sisters. I loved hanging out at their house as it was filled with very outgoing, dynamic children. Sadly, one of their daughter's was killed during the collapse of a freeway during the 1989 earthquake.

During the rehearsals at their house in the early days, Mrs. Maxwell would be singing along with us while rocking their newest and last baby. She had a great voice. While waiting for the play to begin, a nice young mom walked through the crowd offering small muffins to everyone - Food, Glorious Food (from the musical about to be presented) - and Mrs. Maxwell caught my attention to say the woman was that baby's wife! One of their grandchildren had the lead in the musical. Where did the years go? I am so glad that I was not in my normal workout gear and looked decent! In fact, the woman behind us tapped my shoulder to ask if I worked out at the other rehab. She said she didn't recognize me in real clothes!

Michael and I arrived home within an hour of each other. The house was nice and clean from the housekeepers so he didn't want me to cook. There were plans to meet someone but those plans fell through. We decided to stay local, ran to Safeway for a couple of things then went to a great restaurant. We rarely eat out for dinner so this was a treat. The place was packed, all the tables were reserved so we ate at the bar and ordered two appetizers and a Manhattan for Michael. We enjoyed grilled calamari tossed with aioli, charmoula, chili oil and bits of crostinni. Amazing. We also had the Artisan Italian Cheeses and Salume which was just two very thin slices of four different cheese, salume, nuts, quince which were all delicious. That was our dinner. I was still in the outfit and happy because we ran into a couple we had not seen in many years. Our sons went to pre-school together and had run into each other sporadically as they grew. They were meeting friends for a drink just down the bar from us.

I thought on everywhere I had been during the day and had no idea when I put the outfit on in the morning that it would take me beautifully throughout the day. I guess I need to dress well more often!

Friday, May 25, 2012

Liver Clinic Visit

I met with the Liver Clinic to review my latest blood tests regarding my fatty liver. The worry is that my fatty liver will begin to become fibrotic which is actually called non-alcohol cirrhosis. The doctor said that this will be the leading cause of liver transplants in the next decade. Mine is directly related to the seven years of prednisone. It is important to keep it monitored for the future lung transplant process.

I also learned that my pancreas was slightly enlarged as well. Oh joy!

The clinic had moved to a new office where I was called into a room to get all my vitals when I got to chatting! Are you surprised, dear reader? Noooo, if you have been reading me for a while! I even got out my camera and shared photos of Shelley in her wedding gown and 1940's-style makeup. We were just chatting away when the doctor knocked on the door!

I have to say that we love each other. He is a marvelous doctor and a good human. And he says, "We don't see people like you here!" I can attest to that. Even upon checking out, the woman checking in and I started to chat and it was clear that she was still having issues with alcohol. I had noticed during past visits that many people in the waiting room wear sunglasses. No windows. Interesting.

Back to the doctor - we reviewed my tests and the liver had settled down. It was interesting to note that the worst test was last May when I had the big downturn with my lungs. He also asked if I have low thyroid. He taught me that one of the numbers indicated that it was not under control. HA! About six weeks ago, I met with Dr. M. who increased my thyroid medication. I laughed and said, "Do you mean my organs are talking with each other?" So interesting how everything is really inner connected. Even with all the body part specialists I see, it is still just all one body! What a concept!

With the latest tests, he deemed me stable. Just where I like to be. He changed our meetings for every six months instead of every three months. He did order another sonogram for November, just before our next appointment. Hopefully, I will still be stable!

Thursday, May 24, 2012

The ATS Speech

It went great. Finally done.

I changed my clothes three times before deciding to wear the new dress before heading towards the city. We arrived around noon so the streets were full of people out for their lunch break. It took forever to make a right or left turn as the crosswalks were packed. Then, we missed the parking garage entrance. After three right turns and avoiding one-way streets, we missed it again, had to go past it and make three left turns before finally parking. A little stress! I am so happy that we had built in a lot of extra time.

We had lunch at Chevy's - my first time ever at that restaurant. Their have a wonderful fajita salad! Afterwards, we crossed the street and walked the long block to the North Convention Center, got our badges then head another long block to the West Convention Center, up huge escalators to a massive open space leading to a huge hallway where all the vast rooms were either full of people during a seminars or empty but ready for a seminar. 

We found our room, had a chat with the guy in charge of the room and met a number of physicians who were also speakers after me. Dr. Schmidt arrived with a Ferrari bag from the store just up the street. Michael was immediately jealous and offered to watch the two race cars which were for her little son at home. She laughed and said that if she heard him playing with them, he was going to have to put them back! Then Susan from the ILD Support Group arrived along with the head of the group, Sally. Then she came. What a shock! Dr. K. arrived, HUGGED me and offered good luck on the speech. I was so touched that she came to hear me speak!

Since we were the final seminar of the convention, I was surprised that the room was as full as it was. Probably well over 100 people. I was the second person to present so I didn't have a long time to sit and worry.

So, here is the speech:

My adventure began in August of 2003 when I noticed I was short of breath and sometimes had a dry, hacking cough on exertion. At the time, I was walking five miles, three days a week at a 14-minute per mile pace. By July of 2004, the symptoms grew to be quite dramatic. During the walk, I would cough to the point of having to stop, bend over, my heart would race and I had a hard time catching my breath. Afterwards, I would collapse into bed for a half-hour then drag myself to work.

I was the head of a highly regarded classical music program at a school, which included music education as part of their core curriculum. It also had an instrumental program taught by renowned musicians. The faculty included seventeen instrumental teachers and two classroom/choir teachers. I was responsible for the music education of every child from Pre-K – 8th grade. It was a big job. The roster of families at the school included movie stars and captains of high tech industries.

At work, I realized that I stayed in my office more than usual, as I just was not up to running up and down the 90 stairs, which I used to take at a full run. My stamina was greatly reduced and, while producing programs, which involved physical work like moving pianos, I was sweating a lot. It was embarrassing.

My continuous coughing spasms became so uncomfortable for my walking partner that she refused to walk with me until I saw a doctor.

But it was May, all the end of the school events were scheduled. I saw the local doctor in June who diagnosed it as exercise induced asthma, prescribed Albuterol and sent me on my way. It didn’t help; the once a day dosage was increased to twice a day then to three times a day then Flovent was added but I was back in his office every two weeks as I continued to feel worse and growing weaker throughout the summer. I kept reporting to him that I couldn’t get enough air into my lungs. I couldn’t inhale. I couldn’t yawn deeply. I was exhausted and spending a lot of time on the couch. I was panting in my sleep. We cancelled our summer vacation as I was just too ill to travel.

One parent at the school was my endocrinologist at **** for a thyroid problem. I phoned him to ask for a referral and met with the Faculty Chest Clinic in October. Within minutes, I was diagnosed as having an interstitial lung disease. They also said that I could toss all the inhalers. My first DLCO upon arrival was 7.7. It currently fluctuates between 11 and 15. In January 2005, I had a VAT lung biopsy, which revealed the culprit – Hypersensitivity Pneumonitis.

After gathering all my personal information, the resident spoke with an environmental hygienist and when he mentioned that I worked in an 18-year old portable classroom, she literally said, “Bingo!” When the school was notified that the portable was the probable cause of my disease, they denied it.

I began my love/hate relationship with prednisone in March of 2005 with 40 mgs for seven weeks and I tap danced through to the end of the school year on 20 mgs. I was manic. I was even ironing our sheets at home and driving my husband nuts!

Due to being immune suppressed and because of my job with children, my wonderful new doctor, Dr. K., declared me disabled in late August of 2005.

I was 52-years old. It was a shock to leave my job, my 6-days a week and 14-hour a day job, with no warning. Boom. Because I filed a Workmen’s Comp claim, which the school denied, there were no goodbyes. There was no formal announcement. I was suddenly just gone.

With the Workmen’s Comp claim, which was settled after four years, came lawyers and private detectives and reams of paper work and depositions. There were good medical tests, bad tests, surgeries, helping the person who took my place at the school, adjusting to rehab, and exhaustion. It was a lot of stress for someone trying to deal with a fatal diagnosis and loss of income.

Two months after I left the school, the other people working in the portable were worried about their own health and phoned OSHA. The surprise visit reveled rat feces and mold. Eventually, the exterior walls were replaced, roof repaired and new carpet installed all while denying there was a problem. My first PFTs and CT scan after leaving my job dramatically improved. Dr. K. said that was proof that the antigen was at the school though we may never confirm what it was specifically.

My husband and I will be married 40-years next year. Yes, we were just children! We have a son who was away at college when I became ill. I was at my peak earnings in a job that I loved and suddenly it all stopped. There was State Disability for a year and Long-Term Disability for another year than nothing other than Social Security Disability.

We survived because we always lived below our means, had no debt and had money in the bank. We adjusted our life style to just one income. On the day we settled the Workmen Comp lawsuit, our lawyer told us that most people going through this process are divorced, bankrupt or living with relatives. He didn’t know that we are committed to each other to the very end. Not that it has been easy, yet we are determined to fold this disease into our lives and not allow it to drive it.

Speaking of driving, we had a convertible so when I was feeling overwhelmed or having a difficult time, we put down the top, turned up the heaters and drove down the coast or up into the giant redwoods. Those drives allowed me to gather my strength during the worst of times.

In November of 2005, I began Pulmonary Rehab, which changed my life. Other people with lung diseases now surrounded me! I was not isolated! I had social and emotional support all while developing muscles! I learned so much including:
• all about energy conservation. This is key to keep doing activities of daily living. I can do everything but maybe not on the same day.
• pursed-lipped breathing and diaphragm breathing
• to use paper plates – more energy conservation.
• not to panic and to breathe through bad situations like having to do a small set of stairs.
• and to slow down – probably the hardest thing for me to learn.

For the past seven years, I have worked out five-days a week in hospital rehabs and Saturdays in my garden. I believe this workout routine has delayed lung transplants.

After a downturn in May of last year, I had my first assessment with the **** Lung Transplant Clinic where they released me back to Dr. K., as I was deemed too healthy to begin the process. Oddly enough, in November, I gained 200 ccs of lung capacity, my CT Scan was back to 2008 levels and my DLCO was the highest ever at 14. Sadly, in March I lost 10% of my lung capacity and my DLCO fell to 11 due to a bout of bronchitis. But last Wednesday, after a six-week run of high dosages of prednisone, my unadjusted DLCO was 15.36. Best ever.

Thus is the life of living with an interstitial lung disease.

To end, I believe we all have some control over how we leave this world. Instead of saying that I was miserable the last few years, I want my family to be able to say that I was positive and active as long as possible. I want them to remember that I never whined or asked the Lord above, “Why me?”

I am determined to leave this life with dignity and grace.

Wednesday, May 23, 2012


A bit nervous this morning. We plan to leave around noon for a lunch near the convention center. The seminar on my specific disease, Hypersensitivity Pneumonitis, will begin at 2:00 for the American Thoracic Society's annual convention. My speech is in the middle of four physicians who are speaking. The waiting is going to be the worst!

Michael has taken the entire day off so this morning we are sitting with nice pot of coffee, the door to the garden is open and the sun is streaming through the living room. A beautiful day ahead.

I keep reviewing my speech and trying to memorize it so I just have to refer to my notes. Yesterday, I received encouraging e-mails from Susan from the ILD Support Group who also will be there and Joanne from Ohio who I met through this blog. So sweet!

It is a very personal speech. The doctor heading my seminar asked me to address specific topics including the effect of the illness on our child, my income, our marriage, as well as specifics about the symptoms and how it was diagnosed. I threw in a blurb about pulmonary rehab, as I believe that is vital for anyone with an ILD.

Tomorrow's blog will feature the speech itself.

Here I go!

Tuesday, May 22, 2012

The Day Between

Today is the day between crazy busy days. It is the recovery day after yesterday and rest before the speech at the American Thoracic Society's convention tomorrow.

Kimberly and William flew out yesterday afternoon after lunch at a really cute sandwich place near Michael's shop. He announced that the entire family was with him then introduced us to the owners. The really nice couple were lovely but I tried not to giggle when she said, "We have a celebrity in the house!" when he introduced William to them. Michael mentioned that the couple was from Portland and their daughter lived and worked there. William took that opportunity to change the subject to Portland and their daughter by asking lots of questions. Smart cookie.

Michael and I had leftovers for dinner last night and fell into bed. I feel so much better this morning. Another night of good sleep should get me ready for the big day tomorrow.

Today, I will be reviewing the speech all day and remembering to practice at a slower pace as I know I will speed it up a bit when nervous. The house is a bit of a mess so I will pull the guest bedroom together and wash all the towels in the extra bathroom. Bills need to be paid. But the big news is that the sun is shining today after a day of such heavy fog that it was raining yesterday. While working on my speech, I will also be working on tanning my legs. The outfit tomorrow includes a black pencil skirt. And spiky sandals!

Monday, May 21, 2012

American Thoracic Society Dinner Conversations

We met so many interesting people at the American Thoracic Society's PAR Dinner last evening. The room was filled of presenters to the conference like me, representing a variety of illness. Several lost husbands or children to a lung disease while others were struggling with a bad diagnosis.

The couple sitting next to us had a premature daughter who was born at 25 weeks and is struggling with pulmonary hypertension. She is on oxygen 24/7. Her mom had made her presentation earlier in the day and was thrilled to have it over! We were both deeply touched by their devotion to their child and to each other. She is one lucky girl to have these two as her parents. They are fighting for her future.

I had spoken on the phone several times with Jack from Florida who was assigned to us, sort of as a handler. His daughter died of a rare lung disease which she fought all of her life, and died so very young after living six years with lung transplants. He had made a promise to her to start a non-profit to bring attention to her disease so that with money and research, a possible cure may be found. He shared her well-worn photo from his wallet with us. What a beautiful woman.

There were many people in the room representing other non-profit organizations and physicians who will be receiving awards from the ATS. One of these doctors was from the National Jewish Hospital in Denver and I was thrilled to be able to have a conversation with him. Susan, from our ILD Support Group, actually flies to Denver to meet with him regarding her lung disease. During our conversation, I asked why one of the very best medical centers for lung disease in the country is in the high altitude city of Denver? I learned that it initially was a center for tuberculosis whose patients did better when they were kept at lower oxygen saturation levels. So interesting.

It was also a thrill to meet the president of the Coalition for Pulmonary Fibrosis. Michael and I had met the founding women of CPF at a conference in San Francisco about four or five years ago. They were just getting started. I am so impressed by this organization as they really put money and focus on research. If you are looking for an organization to honor a loved one who has died of pulmonary fibrosis or a person who is currently struggling with the disease, please consider this organization.

I introduced myself to her and told her about our first encounter with CPF. When I mentioned that I also pass along all of their information to you, dear reader, she asked the name of this anonymous blog. I was pleased at her response. She knew of it and reads it!

We both were overcome with exhaustion, stayed awake while driving home (thank goodness!) and fell into bed. William and Kimberly were also in the city for the evening and got home just past midnight. No matter how old the child, I still had a hard time falling asleep until I heard them come home. Always a mom, I guess!

They are flying out this afternoon and back into their lives. Michael and I both have a crazy busy week ahead including my speech at ATS on Wednesday. I feel a nap coming on!

Sunday, May 20, 2012

One Down and One To Go

We are home and minutes away from getting back into our fancy wedding attire to attend the American Thoracic Society's welcome dinner for members and presenters. I am going to be a presenter on Wednesday. I have been in contact all weekend with the doctor heading the course on Hypersensitivity Pneumonitis. She asked me to add more details about living with an ILD. We are still tweaking it. Love her input! On Thursday, I will share my speech with you, dear reader.

The wedding was beautiful and high in the mountains. The snow capped mountains surrounding Lake Tahoe were in the far distance as the ceremony was held outside on a hill top. Stunning. Such a beautiful day.

My mom began the procession and was thrill to be a part of the ceremony. Photos below are of Shelley and Greg's wedding.

And me? We were worried about the altitude but there was no need to worry! I ran up a flight of stairs and the only time I was out of breath was when I was dancing too long. HA! We didn't sleep well so both of us are full of caffeine to make it through the ATS dinner tonight. One event down, one more to go today.

Some photos from the wedding below:

My mom

The Bride with her glorious blue shoes!

The Bride and Groom with William and Kimberly (her back to the camera)

Saturday, May 19, 2012

Wedding Day

Wedding today. Shelley and Greg. It is happening in a lodge in the mountains three hours away. The weather should be glorious. We are packed and ready to go.

I am feeling good but tired. Since we will be in altitude, I plan to sit a lot. Alas, no dancing! But, I am thrilled to be well enough to travel and enjoy this life marker.

William and Kimberly arrived on time yesterday, we spent several hours with my mom then out in the sunshine in the garden. Dinner of braised ribs over horseradish mashed potatoes and steamed spinach was a hit as was the appetizer of horseradish cheese and crackers. The lamb sausage was also served out in the garden. We talked non-stop!

After dinner, we went to Jill and Wayne's house for a visit with their family, came home and packed.

Off we go!

Friday, May 18, 2012

Ready, Set, Go

The real madness begins today. This morning. Kimberly and William arrive around 10:00.

Yesterday, I made the most delicious smelling short ribs with a base of red wine vinegar, honey, a bottle of wine, a bit of port, chicken broth and veggies for dinner tonight. Three hours later, they began to cool in the refrigerator. They will be served with horseradish mashed potatoes and fresh steamed spinach. Here is the recipe for the ribs:

The fresh blueberry coffee cake came out fantastic, too. How do I know? Michael ate a test piece after dinner last night and just cut himself a piece for breakfast.

After dinner, we are going to Jill and Wayne's for a visit. Their family has always a touchstone for William. He adores their boys.

When we get back home this evening, it will be time to pack for the wedding on Saturday. I am praying I don't forget anything important!

Here we go.

Thursday, May 17, 2012

Welcome Back to Stabilityland!

Great News: I had my pulmonary function tests, CT Scan and a meeting with Dr. K. yesterday.

I am back to being stable. STABILITYLAND! A lovely place to be.

The six weeks of larges dosages of prednisone allowed my lungs to recover from the bronchitis. Dr. K. also reduced the prednisone back to my previous level – 17.5 mgs. My DLCO is now at the highest level EVER.

Here are the latest numbers:
·      Total Lung Capacity – 2.58 or 51% of predicted
·      Diffusing Capacity adjusted for hemoglobin – 14.36 or 55% of predicted
·      Diffusing Capacity unadjusted – 15.36 or 59% of predicted
·      Forced Vital Capacity – 2.88 or 57% of predicted
·      FEVI/FVC – 79.78 or 102% of predicted
·      Spirometry vital capacity – 1.62 or 48% of predicted
These are good numbers for me. Good enough to begin weaning myself from supplemental oxygen again. Then the sleep studies will be ordered again to see if I still need it at night.

I mentioned that I was going to a wedding on Saturday and Dr. K.’s final words to me were, “Don’t shake anyone’s hand! Stay away from sick people!”

A great day. Exhausting but exhilarating.

Wednesday, May 16, 2012

Steps Closer to the Wedding

Great day yesterday. Slept well last night. Ready for a long day today.

Yesterday, I watched Winnie's swimming lesson, played in a little park with her family then went to the rehab class. My saturation numbers were spectacular. Afterwards, I hit the butcher's and Trader Joe's then home. At 5:00, we drove into town for Michael's haircut - another check on the to-do list.

Today is the long drive into the city for pulmonary function tests, high resolution CT scan and a meeting with Dr. K. to hear the results. My fingers are crossed. I hope I was able to get some lung capacity back.

On the way home, I will swing by Safeway for everything I couldn't get at Traders then cook a dinner of stuffed chicken breasts.

Tomorrow's list? Cooking everything for Friday's arrival of Kimberly and William and my haircut - and color - cutting the grass and doing the floors in the house.

Baby steps! Okay, giant steps! Today is going to be long but tomorrow is going to be the real challenge.

Tuesday, May 15, 2012

No Supplemental Oxygen

I forgot to bring my oxygen with me to the other rehab yesterday. Starting slowly on the treadmill, I kept checking my saturation levels while clocking time at 2.8 mph then 3.0 then 3.2 then finally my normal 3.4 and was able to keep my levels over 90% without supplemental oxygen.

For the first time, this may be an indication that the continuing large dosage of prednisone has help to get back some of my lung capacity. I was thrilled. Moving to the bike, I was able to keep my levels above 93%. Such a surprise.

In the rehab class today, I will see if I can maintain these levels while the RN checks my saturation levels on their meters. Wouldn’t it be lovely? Wednesday, I have appointments for full PFTs, HRCT Scan and a meeting with my favorite Dr. K. to review all the results.

But for now, I am marching towards an exhausting time period, I really want to share the number of things I do in a day to illustrate how I try to adjust my schedule to protect my health.

Every morning, all the dishes are in the dishwasher, counters are cleaned, pillows on the family room couch are fluffed, the bed is made, the bathroom counters are cleaned and the house is left in good shape for the day. I hate coming home from rehab to a mess. So, in a morning, I am doing so many more activities of daily living than what I was able to do in a whole day years ago. All thanks to rehab and medications.

Yesterday, I met mom and we headed out on a field trip. I had spotted an Anthropologies store and we decided to check it out. Loved some dresses. A huge sale is happening today so maybe….gosh, I just don’t have time.

We walked down the street to a high quality candy store where I bought my mom a Chocolate Haystack and Michael a chocolate dipped apricot and some peppermint bark. After I paid for everything, we heard something. Suddenly, we all looked down the counter then up at the ceiling where water was pouring through the light fixture. The woman behind the counter ran up to the spa above but no one was there yet. We moved everything off the counter and place a big bucket to catch the stream of water. She was contacting the building owner’s on site office so they could get into the spa when we left. We washed our hands afterwards! What a mess!

Mom and I both worked out at rehab then had lunch – I had a protein children’s burger – at 5 Guys and Fries. We chatted; I dropped her off at home then headed towards home with stops for gas, a salad for dinner and even retrieved clothes from the cleaners.

At home, I watered the front garden and ironed Michael’s new shirt and slacks, worked on my speech for the ATS next week, fought off a nap then made dinner of bacon-wrapped scallops and a salad.

By 7:30, I was fighting to stay awake.

Today, the focus is the rehab class followed by having my eyebrows waxed. Not too long of a to-do list. Tomorrow is going to be a dozy!

Foodie update: I wanted to find something special for appetizers when Kimberly and William fly in on Friday. The wonderful organic market in town makes their own lamb and feta sausage. I bought two, which I will cook up and served with a tzatziki sauce. Perfect!

Monday, May 14, 2012

Walk With Me

From today through Thursday, May 24th, it is going to be crazy busy including doctor's appointments, a wedding and the American Thoracic Society's conference. I thought it might be interesting to really share with you, dear reader, how specifically I schedule everything to try to maintain my stamina and protect my health. This period is going to be a huge challenge.

So, come walk it with me. Every blog through this period beginning tomorrow will include a short recap of the specifics of the previous day.

Preparations completed: William's bed has freshly ironed sheets, the gardens are done but will need a quick cut and water before they arrive, the house is clean but will need dusting and vacuuming and the do-list has been made. Here we go.

Mother's Day was lovely. We met at mom's - we were first to arrive as she was driving home from Mass - then went to Nordstroms where Michael bought a shirt and tie for the wedding. Lunch was at their cafe. It was perfect. We hung out at mom's then drove home.

On the drive home, I did get photos and a text from my brother in New Mexico. He said he was surrounded by tornadoes. Very scary. Later in the evening, I checked back to make sure they had no damage and they said the storm had moved east. Thank goodness. Several years ago, they had huge hail which killed someone and did massive damage to every roof in his town and all of his cars.

Sunday, May 13, 2012

Mother's Day

Mother's Day. I am so grateful my mom moved closer to us. I am so grateful that Michael's mom is independent and healthy. Both care so much about us. We are so lucky that both are positive role models.

Our moms never competed with us. Our moms are the cheerleaders of our lives. We are still learning life lessons from them both.

We are going to hang out with my mom this afternoon. She has church this morning and we have to drive a family to the airport. Afterwards, together we are going to choose a new shirt and tie for Michael to wear at the wedding next weekend.

We do not like to eat out on Mother's Day. Different menus and crowded. So, we may just enjoy a lunch at Nordstroms. Good and not fancy. Perfect for the day.

After breakfast, we will phone Michael's mom in Las Vegas.

For me? We are enjoying the Formula 1 race from Spain and Michael is making breakfast for us right this minute. A phone call from our son will probably happen later today. So looking forward to having him home next week.

Happy Mother's Day.

Saturday, May 12, 2012

Looking Back - Activities of Daily Living

I climbed into bed last night after enjoying such a nice day. My mind wandered back to just a few years ago when a nice day included a nap and maybe being able to cook dinner that night.

It wasn't so long ago when I couldn't go grocery shopping alone. Then, with the help of two days a week of rehab, I was able to walk the aisles without oxygen and choose what we needed. Yes, I had to have help to put everything into the trunk and yes, most of it had to stay there until Michael got home. But, it was just a bit more of freedom and feeling normal. The day finally came when I was able to actually put the groceries in the trunk AND carry them into the house.

I remember being able to do two activities of daily living per day. Shower and rehab. Make dinner and food shop. Rehab and dinner. Choices were made. Naps happened everyday. As I added additional days of rehab, my stamina improved, I could add a third thing every few days a week. Then, three activities per day with a fourth added became the new normal. Finally, I quit counting the number of things I could do a day.

Now, I focus on rehab or gardening six days a week as a base for an upcoming week. Into that schedule, I fold in time with friends, my mom and doctors. Some weeks are more of a challenge than others. After a busy schedule, I really try to have a few days to just relax. Recover.

But, sometimes life happens and everything comes crashing together. That is the case with the next eleven days. The goal will be to do a little everyday in preparation and just take one day at a time. I really don't want to get sick and lose more lung capacity!

An aside: Being married to a car guy, it was with sadness that we learned yesterday that Carroll Shelby died at the age of 89. He had been the longest living heart recipient and also had a kidney transplant. He saw a void in the auto industry. He married a foreign car with an American V-8 motor. It would be sports/race car. The AC Cobra was born around 1961/62. He had been a driver for Ferrari. He learned a lot. Drivers weren't treated well in those days and he ended up hating Enzo Ferrari. He hooked up with Ford and was thrilled to finally beat Ferrari in F1 racing (it was called Grand Prix racing in those days). He later worked for Ford and Chrysler for many years. What a guy. Just a big Texan having fun.

Friday, May 11, 2012

Mother's Day Weekend Ahead

Happy Friday! Mother's Day weekend ahead. 

The kick-off begins today with a lunch near Stanford with my friend Dolores. The new dress will come out of the closet for this event! We try to get together several times a year and I always look forward to spending time her.

Saturday will be spent working in the yards. It should be very warm. 

Formula 1 from Spain will be featured with breakfast on Sunday. The plan is to drive a friend to the airport at noon then spend a few hours with my mom. Also, we need to buy Michael a new shirt and tie for Shelley's wedding next week. I am sure I will hear from William sometime during the day.

I must take a minute to share some photos I took yesterday. When we bought our house in 1982, this rhododendron was in a barrel near the back fence and probably around five years old. It was happy but eventually needed to be transplanted. In 1993, we replanted it into the new garden and it thanked us by growing beautifully and displaying huge blossoms every year. 

The last storm of the season brought with it very strong winds. It lost a lot of its leaves and I was worried that it would not blossom this year. March then April passed and still no blossoms. Finally, in early May it began. Very late but glorious. Even the photos don't do it justice.

I hope you have Mother’s Day plans and a glorious weekend ahead!

Thursday, May 10, 2012

Concert Night Review

It had been over two years since we had seen one of his concerts. We missed the last tour when things went wrong and William asked us not to come at the last moment. Didn't need the additional stress. I thought the same might happen when we received a text yesterday afternoon about how he had a bad night.

I thought he was texting about the concert. It wasn't until I ran into him on the stairs before the concert that I learned that it had to do with sleep. He had no sleep Tuesday night. The air conditioning was broken at the hotel and his room was 85 degrees. He was miserable all night.

He looked exhausted.

He and I moved into a hallway as I had gone in search for earplugs and was on my way back to our seventh row, center of the aisle seats when I bumped into him on the stairs. The opening band stunk and used one button on the sound board - Maximum. Everything was shaking. My ears hurt.

We chatted about the wedding next week. He is exhausted from the long tour, they have two weeks off then over a month of concerts in Europe. He said that there had been very few days off and everyone was worn out. The wedding is right in the middle of this break so he is worried he is not going to be up to speed for the next part of the tour.

I promised that I would have great food for him and that we would do nothing else but relax while he and Kimberly are with us.

While chatting, we talked about the hot water heater and the latest downturn with my lungs. He laughed when I told him that the sheets on his bed have been washed. And iron! Ah, the joys of prednisone!

The concert was great. Melanie said it was better than she expected. She took lots of photos and videos and sang along with most of the songs. We got her home right at midnight.

Wednesday, May 9, 2012

Concert Tonight

We got the call yesterday afternoon. Our son William is across the bay for three nights of sold out concerts and he arranged for us to attend tonight's concert. He asked if we wanted to come earlier so we can go to dinner together. Since last night was their first night, all the hours of set up happened. This allows him to have a lot less work and stress for the next two concerts.

We are also bringing our 15-year old neighbor Melanie with us. It is her first concert ever. Her mother is extremely protective but trusts us. Somewhat! I had to promise to not let her go to the restroom alone. William held her when she was just 2 weeks old and has watched her grow up. She is so excited to be out into the world with us, her first concert, meeting the band and seeing William work. Oh, to be 15 again!

We have to be on the road to fight rush hour traffic by 4:00PM. It is going to be a long day. This morning, mom and I have rehab then we are going to investigate a mall and have a bit of lunch together.

Tuesday, May 8, 2012

Another Gift

Salzburg, Austria
It started slowly at the other rehab. A smile then a hello. Then a short conversation. I noticed that she changed the radio station to classical music. Then the realization that she, as a singer in a chorus at Stanford and I, as a bassist with a major orchestra, performed in several concerts together. We began to talk music, something that I had so missed since leaving the school.

She was a biologist involved in drug research and production when there were very few women in that field. When I was prescribed a new drug, I would ask her about it. I learned a lot about pathways and enzymes and proteins. She was clearly brilliant and it was only years later that I learned she was a Harvard grad.

She was also a fourth-stage breast cancer survivor.

Upon her diagnosis, she totally changed her diet and lost forty pounds. She hunted farmer's markets for fresh vegetables and fruit. She started to exercise. Her routine would begin with stretches, running on the treadmill at the highest grade level available, arm bikes so high in resistance that I couldn't even move it and every weight machine in the gym. Then another set of full stretches. Often she would spend 2-1/2 or 3 hours, five-days a week in the gym.

The cancer has not returned. She has said that she will never have chemo again.

It has been a difficult year for both her and her husband. His brother died and his mother is extremely ill. They have spent a lot of time on the trains between the West Coast and Chicago. But when they are home, they spend their time at concerts throughout the area and long hikes to see wildflowers and birds.

We were best friends even after she left rehab and went to another gym. We e-mailed a lot and meet for tea before my rehab class every few months.

In late January every year, there is a very famous Mozart festival in Salzburg, Austria. She has been going alone for decades, staying at the same hotel each year, renting a rehearsal studio to practice her choral pieces while there and enjoying three to four concerts a day for ten days. Usually, we meet afterwards and go through the program, which is a book as thick as an encyclopedia. We didn't get together this year and we haven't seen each other since last year.

We are meeting for tea this morning.

I try to pay attention to notice all the wonderful things in life that I would never have known had I not contracted my ILD. She is one of those gifts.

Monday, May 7, 2012

Derby Sunday

We were invited to the neighbor's just behind us and over one house after having a great conversation with Laura and Ian at Natalie's 50th birthday party.

Laura is from Kentucky and they celebrate Derby Day every year with perfect recipes for Mint Juleps and Derby pie. No hats, though.

It was a beautiful day with temperatures in the very high 60's with a nice warm breeze. Natalie and Rick joined us as we arrived to their home for great cheese and other goodies and my first sip ever of a Mint Julep. It was good. Really good. I had one while everyone else had at least two plus wine with dinner plus some Buffalo Trace over ice after dinner. Everyone was very happy!

On Saturday, we had been banned from reading or watching anything about the Derby, so we all watched the DVR recording of it and placed our bets on which horse would win. No money involved. Everyone picked their horse. Some chose from how they pranced before the race, others by the jockey and yet one chose because of the color of the silks. Michael said, "I'll chose the purple one." He won. HA!

Laura also made a pecan pie which included chocolate and bourbon. A Kentucky girl! Michael had his with ice cream, of course. It was amazing. Their children went crazy as they only get it once a year.

What a nice evening. We even got some good gossip. The house behind us was taken over by a bank then bought by a company who totally updated it including the gardens. When it went on the market about nine months ago, we took a tour. It was not a house for kids. The back yard is bricked. The entire yard. No grass. No play area. Its front is also on a busy street in this area. What we learned last night is that the company lost its shirt on the deal and it was returned to a bank, which just sold it to an older couple.  We have been so spoiled with it being empty that we worried that a family with lots of kids and dogs would move in.

An older couple. We will invite them over for cocktails in our garden. No Mint Juleps but maybe they will appreciate a good Kentucky bourbon!

Sunday, May 6, 2012

Need Inspiration? Got it!

Yesterday, my friend Joanne in Ohio sent this article via e-mail from the Dayton Daily News. I love this man's attitude. He is an inspiration to me!
JIM WITMERThis spring marks six years since Bryan Denniston, 49, of Tipp City was given six months to live. He suffers from pulmonary hypertension and has been on the list for a double lung transplant for about five months now.This spring marks six years since Bryan Denniston, 49, of Tipp City was given six months to live. He suffers from pulmonary hypertension and has been on the list for a double lung transplant for about five months now.

Patient awaiting lung transplant finds new hobby
Bryan Denniston exults in ‘sense of freedom’ in motorcycle adventures.
By Mary McCarty, Staff Writer
9:32 PM Saturday, May 5, 2012

Dr. Marie Budev has seen hundreds of patients in her work as medical director of the Cleveland Clinic’s lung transplant program, but she has never seen anyone quite like Bryan Denniston of Tipp City.

Nobody else on the lung transplant list is in the habit of strapping 22 bottles of oxygen on three motorcycles and taking off for parts unknown on his 1992 Honda Goldwing 1500.
Denniston is the “Where’s Waldo?” of the more than 100 patients on the lung transplant list, checking in with his doctors and nurses from far-flung regions.

“Where are you?” the pharmacist asked when Denniston, 49, called in recently for a prescription.

“Key West,” he replied, having made the 1,063-mile trek in two days.

“On the bike there’s such a sense of freedom,” Denniston said. “I might live longer if I stayed here all day, waiting for the phone call that a donor had been found, but this has opened a whole new world for me.”

Budev said she has known other patients for whom “every day and every moment is special, who live with relish, but no one has done what he does.”

Not that Budev doesn’t have trepidations. Denniston’s life-saving medication, a sodium saline solution known as Flolan, must be kept on ice; it is nestled in 25 ice packs which he carefully places on top of his oxygen tanks. If the line is cut on his Flolan tube, he could be dead in 10 minutes. He never goes anywhere without a spare.

“Imagine being that sick and having all these tanks of oxygen, and being out where there is no one, only sage brush and tumbleweed and maybe coyotes,” Budev said.

It didn’t occur to Budev to forbid him to go: “He would ignore me because he so strongly believes in doing this. Try to put yourself in his shoes, and always being told ‘you can’t do that.’ It’s a constant sort of jail.”

Denniston’s wife, Cindy, also has more than her share of reservations. She finds it highly ironic that someone desperately in need of a donor is so often behind the wheel of what is commonly referred to as a “donorcycle,” even though he is safety-conscious.

“I don’t like it,” admitted Cindy, an art teacher at Grafton-Kennedy Elementary School in the Northridge Local School District. “But when you’re walking as close to death as Bryan does every day, no one else can make those decisions. When he’s on that bike he feels that sense of freedom that he can’t feel anywhere else.”

Cindy and Bryan were high school sweethearts in the Northridge High School class of 1981, where they were crowned Homecoming king and queen. Both were top athletes who remained physically fit into their adult lives. Bryan worked out regularly and didn’t smoke or drink.

It was a bolt out of the blue when he was diagnosed with end-stage primary pulmonary hypertension in 2006. “They gave me six months to live, and here I am six years later,” Denniston said.

He prayed that he would live long enough to raise daughter Cassie, now 21, and son Jake, 18.

Now, as Denniston awaits the call for his transplant, he and Cindy hope for so much more.

“I don’t see any reason to feel any other way,” Cindy said. “I remember our coach at Northridge who told us, ‘Go in thinking you’re a winner, and if you don’t, don’t play.’ He was supposed to be dead a long time ago.”

Budev said the couple’s hopes are well-founded; the Cleveland Clinic has a nearly 80 percent five-year survival rate for transplant patients with pulmonary hypertension.

Despite the risks, Cindy sees many benefits in these cross-country treks on which her husband is often accompanied by friends and family members, particularly his father-in-law, Jim Kelly of Union.

Denniston had never been on a bike before; now one of his proudest accomplishments is earning the coveted “Iron butt” award for motorcyclists who ride 1,000 miles in 24 hours.
“I had always worked in the construction industry, but I couldn’t work any more. But after my diagnosis, I told myself that I had to find a hobby.”

After watching the 2007 John Travolta movie “Wild Hogs,” he persuaded Kelly, a veteran motorcyclist, to travel cross-country with him. “I love the smiles when I pass by,” he said.

Yet his life isn’t all joie de vivre; his medical problems bring plenty of uncertainty and financial stress. Denniston said that his Flolan alone costs his insurance company $9,000 a month, and that doesn’t include the cost of the 22 medications he takes daily. His condition has taken a financial toll on the family, costing them $50,000 out of pocket, and turned Denniston into an ardent supporter of health-care reform.

“I didn’t vote for President Obama the last time, but you can bet I will this time,” he said. “Without health care reform, I’d be bankrupt. I’d be capped out on my insurance. Health care reform is keeping me alive.”

Budev said that health-care reform has benefited patients with chronic conditions and pre-existing conditions in some ways but has been harmful in others.

“We have seen changes on both ends,” she said. “Now very few insurance companies will pay for lodging for families, and these can be very big expenses. It’s very hard to know what politicians will do. The key thing is for lobbying groups and politicians to stay very active.”

Although Cindy worries about her husband’s safety, she sees the psychological benefits of his newfound passion.

“He loves the people he meets along the way,” she said. “On every ride he meets someone who is moved and inspired by him.”

Observed Budev, “There are so many Bryans out there, and all they’re asking for is this gift that you’ll have no use for after you die.

When people meet Bryan, his love for life is so inspirational, he makes them think, “Maybe I should be an organ donor.”

Contact this reporter at (937) 225-2209 or

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