Living Well with a Bad Diagnosis - Lung Disease

Saturday, October 31, 2015

One Amazing Day

It was a marvelous day. First, I worked a few hours working in the garden. All the cushions are put away for our trip, the new edger worked its magic and the yards are tidy. After a shower, I went into town for Halloween cookies for Winnie and Oliver today then I headed north along the ocean to see the therapist for the first time.

I wasn't nervous. I was just myself. We talked through getting the bad diagnosis in 2005, how I dealt with it, how it affected William, how I realized that this was my path to walk in this life, how Michael and I adjusted to the disease as a team, how we don't let it run our lives, how exercise and the nutritionist were so important to my postponing lung transplants then we talked about the uncomfortable and embarrassing conversation with Dr. K. that brought me to seeing a therapist.

She explained to me that neither of us was in our "normal" mode that day. I had Michael and William with me after a long appointment with attorneys. Dr. K. was clearly out of sorts. We both clashed. I mentioned that my strategy for the next appointment with Dr. K. was to remain calm, share the information Dr. K. requested, ask any questions but slowly and calmly. I am always so aware of the time crunch of 15-20 per visit and we usually have so much to work through that I tended to talk quickly so as not to take more of her time. I am not going to worry about that anymore. She said that was a very good plan.

Calm. This will be my mantra while I sit in the waiting area before the next appointment in December.

I really loved the therapist, whom I shall call Ms. D. She seemed to under the core of me quickly. I also loved that she recommended two books for me to read. More chances for growth and learning. With Michael newly retired, I so wish I could see her a couple of times a week but, for now, it will be every two weeks.

As it turns out, that is going to work well because next Friday, Michael and I have been asked to sit on a panel with the administrators and staff of the pulmonology and allergy clinic at my university hospital. They want our opinions about the patient experience of behaviors and communications of the staff. Should be interesting and, goodness knows, we have opinions!

Returning to my story from yesterday: I zoomed home, grabbed Michael and we hopped in the car to go to mom's to drop off a printout of her new insurance information. From there, we met about ten former workmates of Michael's for a goodbye party for Thomas. It also gave Michael an opportunity to say his in-person goodbyes to several people. It was good for him. As a non-drinker, I was the designated driver and we were home by 10PM.

But, as I looked back on the day, I was amazed how it unfolded. A really brilliant, learning, sharing, active day. I am so grateful to be alive and able to have a day like yesterday.

Friday, October 30, 2015


SCORPIO. (Oct. 23 - Nov. 21): You need to do the psychic equivalent of emptying your cache, refreshing your browser, and reloading the page that you're on. You'll be delighted and excited by what pops up.

That about sums it up! This afternoon is my first visit with the Marriage and Family therapist per the request of Dr. K. I thought it was a total waste of my time and money but I am trying to go into it with an attitude of, "What can I learn from this?" Kind of how I went into yoga, also per her request, when I was so not interested. Turned out, I learned a lot and really enjoyed the experience. 

This morning, my body will be in the gardens doing some heavy work preparing for the rains then some body maintenance before a shower to prepare for the trip on Sunday. Hair removal! Face and legs. 

But tonight, ah tonight, will be fun. We have been invited to a restaurant over the pass by the former service writers where Michael used to work. Thomas' last day is today and I think they will also be celebrating Michael's retirement. I am happy to be the designated driver for several people. We are meeting at an interesting place. There is a restaurant then there is an entirely separate bar/snacks down a little staircase with a happy hour until 10PM. That is where we are going to be. Oh my. It is going to be a late night. 

Thursday, October 29, 2015

Feeling Better

Rehab boy Dick phoned. The results of his test on the mass growing on the outside of his lungs are still in question. They gave him two choices: do nothing or have a biopsy. The problem is that his lungs are not very strong and that they may collapse. He has chosen to have the biopsy and now I am waiting to hear when it has been scheduled.

Mom has a conference call this morning with my dad's former employer to help her navigate choosing a new company for her Medicare Part D coverage. Her current policy dramatically changed, added a deductible and increased the co-payments from $3.00 to $20.00. Crazy increase. She wants me to listen in on the other phone and help her to choose the new insurance. I may not make it to the rehab class if it is a long conversation.

My pain is about 90% less this morning than yesterday. I am in love with the tennis ball and the stretching. Both seem to work together to reduce the pain of my sciatica problem.

Orchestra rehearsal - best rehearsal ever. New music! We played Selections from West Side Story, were called out by the conductor for our outstanding rhythms, which held the rest of the orchestra together. Gerry and I were so enjoying playing this beautifully written music and the very fun bass parts. We also read through Vaughan-William's Greensleeves featuring the harp. Beautiful. Haunting. So much fun to play. Both pieces will be very well received by the audience.

I got the new pneumonia shot yesterday. My arm is a bit stiff this morning but Dr. K. wanted me to get it. Ask your doctor if you are able to get one, too. Good insurance.

Wednesday, October 28, 2015

Tennis Ball

I hate to whine but my sciatica was the worst ever yesterday morning. Moving my right leg was impossible. It loosened a bit as I made my through my morning chores but Julie, our hairdresser, helped me so much. She had dealt with sciatica, showed me exercises to relieve the pain then told me about the tennis ball treatment. Sitting seems to really make it worse but sitting on a tennis ball right on the pressure point will relieve the pain. So, I quickly bought one, jumped into the car and headed to the rehab class. With a bit of wiggling, I was able to move the tennis ball around the spot and it actually felt really good. By the time I made it to rehab, I had very little pain and it was gone by the time I made it through my workout.

Tennis ball. Who knew?

Rehab boy Dick did not come to class. Sherman and I were very nervous as he told us he would be at the class after a test to determine if he had a cancerous growth on the outside of his lung. I phoned him after I got home, he was asleep but his wife said they had not heard from the doctor yet. Still holding my breath. I so hope it is a benign growth.

During our trip to LA beginning Saturday, it is going to be cooler than expected. All my clothing options have to be changed. We are beginning to lay out everything on William's bed so we don't forget things. 

Blood tests and dermatologist appointment with mom today. Orchestra rehearsal tonight. New music! Always like a new gift to unwrap. Vaughan-Williams' Greensleeves featuring our fantastic harpist and an interesting Selections from West Side Story. Should be fun!

Tuesday, October 27, 2015

Making Lists

I am feeling overwhelmed. I need to pay the first of the month bills before we take off. I need to wash and iron our travel clothing. I need to pickup presents for Michael's mom and sister. I need to buy special cookies and food for Halloween for Winnie and Oliver before they Trick-or-Treat in our neighborhood.

I am running out of time.

My thoughts are with rehab boy, Dick today. His test to determine if he has a cancerous growth on the outside of his lung is happening this morning. We plan to meet at rehab and maybe he will know the results of the test. Fingers crossed.

Our focus is also on the first rains of the season due tomorrow. We found the connector from the back gutters to the street drainage was very blocked. Michael worked it free yesterday with water and the hose. He will work on a system to make sure the water is moved away from the house. It is going to be a wild winter.

So, I am making a list of things I would like to get accomplished today. It will be long including a haircut, waxing of the old eyebrows, a swing by Costco for Peet's coffee Michael's mom, rehab, Safeway, laundry, making dinner and watching the World Series! I may need extra oxygen!

Monday, October 26, 2015

Get a Proper Diagnosis

I talked a lot yesterday. Two people phoned for advice. It makes me wish I knew more about ILDs but I can only offer my own experiences and what I have observed with others in my support group and pulmonary rehab class.

The last eleven years, I have learned a lot. Mostly, it is so important to get a proper diagnosis.

Sometimes I wonder if the diagnosis of IPF is a "catch all" when there is no biopsy. What does it matter? Ninety-nine percent of ILDs are treated in the same manner, except mine. Hypersensitivity Pneumonitis (HP) often responds to prednisone. My dear friend in Ohio was misdiagnosed with IPF when he actually had HP. After a second opinion at a large facility with an ILD clinic, he was diagnosed properly, treated with prednisone and, after a year and a half, he was back to work on no medication or supplemental oxygen. He has a check up every year. He is alive and functioning.

On the phone yesterday, there was a discussion about an older gentleman who was diagnosed with IPF with no biopsy due to his age but there seems to have been an exposure to mold years ago. I wondered if a month-long run of prednisone might help his breathing. Maybe he actually has HP.

Sunday, October 25, 2015

Into a Crazy Week

I did something stupid last night. After being awake for almost 2 hours, I began to cough and didn't want to wake Michael so I moved to the chair in the family room. Bad. Apparently, I rolled on my side and the sciatica really, really hurts going down my leg on that side. The pain had disappeared for a couple of days so I guess I begin all over again.

My schedule is so crazy next week that this morning is the only time I have to get my toenails done and my eyebrows waxed before our road trip to LA next Sunday. A needed shower within the hour then off I go. Fortunately, I got a lot done yesterday so I have the time today. After four hours in the garden, I took over an hour nap and went to bed early. Each branch of the hydrangeas have now been trimmed back and ready for new growth. All four large bushes. It was a lot of work and the recycle bin was filled to the brim.

Monday begins the madness. Mom's Mini Cooper has an early appointment deep in the Silicon Valley. A long drive. It will be an all day event.

Saturday, October 24, 2015

Passing Along Information

I love Saturdays. Home. Garden. Bookkeeping. Laundry. Puttering around. The garden is the main focus today but I will also begin to fill out the questionnaire for the counselor next Friday. You remember, the counselor that Dr. K. recommended I see because of being "manic" and that I need to learn to manage a chronic illness. I know I have to follow through, for the medical record, but I hope I don't see the counselor for long. I did my work spiritually, physically and emotionally in 2005 and 2006. When I look back, I have learned so much and have become such a different person with the innate feeling that this disease was the reason for my life. It was my path to walk.

At the end of the ILD Support Group meeting this month, a very nice older gentleman approached me afterwards and said, "You are so positive and have good energy. You are meant to do this." Wow. From a stranger. I am honored to be invited to meet a couple who are dealing with IPF. It is a rather recent diagnosis so they are still in the early stages of having little information and I have so much practical advice to share with them. Advice gleamed from experience. I also say that it is not that I know more but I am just further down the road.

Since I am not a doctor, I always offer my experiences then suggest they speak with their doctor about whatever issues we discussed. We are very lucky in the Bay Area to have two internationally renown university hospital and research centers. One is known for their cardiac department. When I hear of someone seeing a local doctor with a cardiac issue, I often wonder why they do not go to this one university hospital? It is the best.

My university hospital has a renown ILD Clinic. The couple I am going to meet have been seeing a local doctor and it became clear that they were not receiving the best of care. Things were slipping through the cracks. No mention of pulmonary rehab. No tests to see if he was strong enough to fly. No mention that having IPF is no longer considered 2-3 year prognosis. There is hope for a longer and good quality of life. These are smart people and they now understand the importance of being treated at my university hospital.

Friday, October 23, 2015

Going Into the Weekend

Friday. What a week. We have not had a lot of down time, next week is totally booked then we leave for LA. The goal will be to manage my time well so I am not exhausted and end up getting sick. Easier said than done.

At lunch yesterday, mom's eyes teared up when she told me about a funeral request. Dad had recorded her singing THEIR song over an orchestration. The September Song. It is a beautiful recording. Theirs was a love story for 50 years and the song became more and more dear to them as they grew older. Their story is HERE  She told me yesterday the she wanted to have that recording played at her funeral. She was worried about how it would happen as it was on either tape or cassette. I told her that her sound engineering grandson would make it happen. She smiled when she realized that was true. It would happen.

This is the final weekend of the crazy pumpkin patch tourists. We will have a slight reprieve before the Christmas Tree people make their way over the pass to chop down their own trees. I plan to work in the gardens, trim back the four large hydrangeas and an Angel's Trumpet branch is a bit too close to the gutter.

I had no pain at all yesterday. This morning? Sore. I hope walking through Safeway and hauling groceries into the house before meeting mom for her eye doctor appointment with be enough to take the pain away. Sitting is the worst. It seems to bring on the stiffness and pain. If I could only stand up or walk all the time...

It is going to be a long day today.

Happy Friday.

Thursday, October 22, 2015


Orchestra rehearsal was really fun last night. We ran the entire Dvorak Symphony in G from the beginning straight through the final resolve of the fourth movement. Love the music. It is not often that everyone in the orchestra gets to play the tune once in a while, even the string basses! I almost didn't make the rehearsal. Something got me.

After my long walk in town yesterday, I had lunch and began to make phone calls to prepare for our road trip in two weeks. Suddenly, around 2:30, my bowels began to rumble. Let's just say that by the time I went to rehearsal at 7PM, I was totally empty. I felt like I had lost 20 pounds! What was a bit weird was that a restaurant here in the Bay Area had caused almost 100 people to become ill and they are contagious. I was worried that I may have picked this up at one of the gyms or restaurants. Michael was fine so it was nothing at the house. This morning, I am feeling lighter but fine. Instead of the rehab class, I will be with mom all day for her post-op appointment.

Then, the refrigerator began to give us problems. We watched a video about an issue with the freezer on the bottom units that have water then ice on the floor of the freezer. This was happening to us, we ordered the part to fix it and Michael installed it while I was at the rehearsal last night. We didn't know if we would awaken this morning to water on the kitchen floor or the bottom of the freezer would be dry. Drum roll, please - it was dry. We think he fixed it, savings us hundreds of dollars again.

But wait, we are not finished. He was losing coolant in his Porsche. Puddles in the driveway. After researching the probable cause with the parts guy at the dealership yesterday (they are business friends), he had to buy the entire reservoir and will install it this weekend, saving us at least $1,000 in labor. Another issue resolved. I am so very grateful that he is capable and happy to fix things as soon as we notice that they need our attention.

I do want to mention my pain and the magic of exercise. When I get out of bed, I am pain free but when I walk a bit, the sciatica pain down the back side of my thighs is mild. But within hours, the pain increases. When I walk for around twenty minutes, the pain disappears for the day. Remarkable. It only adds to my resolve to exercise everyday.

Wednesday, October 21, 2015

Rehab Update and List of Medications

My rehab boy, Dick had not had the test yet for the diagnosis of the mass that is growing on the outside of his lung. So we wait. But, in the good news department, the head of the pulmonary rehab program told us that her lung cancer tumor had shrunken with the help of nine weeks of a low dosage of chemotherapy. Her liver tumor remains the same, had not grown and they feel it, too, should respond soon.

I worked my brains out in the class, have no pain down the back of my legs this morning and plan to take a long walk. The answer to keep the pain at bay seems to be walking. Another reason to keep moving! The big breakthrough yesterday was that I finally hit my 5-minute goal on the elliptical. The next goal is 10-minutes, which might just kill me!

I thought I would share my list of medications. It is interesting to compare and contrast but also to see all the over the counter vitamins. We as patients must understand what medications we are taking and why. We as patients must also know the important numbers such as our DLCO and lung capacity. Those numbers tell us how we are doing. So, here is my list of Medications:

Hypersensitivity Pneumonitis – Interstitial Lung Disease
Hashimoto’s – Autoimmune Thyroid Disease
Glaucoma – Eye Disease

Atorvastatin  - 20mg. – 1x per day for high cholesterol due to prednisone

Azathioprine – 50mg. – 75 mgs 2x per day – drug for lungs
Boniva – 150 mg.- 1x per month

Cosopt – 2%/0.5% - 1 drop 2x per day for high pressure in eyes

Estrace – 0.01% - use 1 gram vaginally 1x per week for dryness

Ipratropium Bromide Nasal Solution – as needed for runny nose

Levoxyl - .15mg. –1x per day– for treatment of Hashimoto disease

Oxygen – 2 liters at night and exercise
Prednisone – 15 mgs. – 1x per day – for lung disease

Proair – AER 90MCG – 2 puffs a day

SMZ/TMP – 800/160 – 1x three days a week – for Azathioprine side effects

Spironolactone – 50 mgs. – 1x per day – as diuretic because of prednisone

Zioptan - .0015% - 1 drop 1x per day for high pressure in eyes

Calcium – 1500 mgs 1x per day
Cranberry – 12,600 mgs 1x per day
Omega-3 Fatty Acids Fish Oil – 500 mg – 3 in AM, 2 in PM
Hair, Skin and Nails Formula (vitamin supplement) – 1x per day
Lutein – 20 mgs 1x per day - for eyes
Melatonin – 3 mgs – as needed at nighttime
Osteo Bi-Flex – with 5-Loxin - 1 tablet per day
Vitamin D – 2,000 IU 1x per day
Vitamin C – 600 mgs 2x per day
Vitamin E – 400 IU 1x per day
Vitamin K-2 – 50 mcg 1x per day - for bones

Tuesday, October 20, 2015

Keep Moving

With a little research, I realized that I probably have sciatica pain down the back of my thighs. Even fitting all the clues, I still want to go through the diagnosis process to make sure it is not something else like a tumor in my pelvic area...

After a workout on the treadmill early yesterday morning, I had no pain the rest of the day. Last night, I tried to stay off my back as that, too, was advice on some medical web sites. This morning? The pain was minor as I hopped out of bed. I plan to move around this morning to keep it loose before the rehab class. Exercise seems to be the secret.

Mom's eyelids looked fantastic and she was very happy with the outcome so far. She played poker last weekend and had no problem being out in the world yesterday without eye makeup and stitches still red and tender-looking. It felt good to get out. We had a fantastic lunch at P.F. Chang's and just enjoyed the day together.

Sherman and I are awaiting the news from my rehab boy, Dick. He should be at the class today so we will find out when he is having the test to determine if the growth on the outside of his lungs is cancer. Holding my breath. He has been struggling for a year and that would explain so much of his ongoing breathing problems.

Monday, October 19, 2015

Tendon Damage?

We are leaving the house for the first time today. Michael will be working on a project while I am off to the other rehab then a visit with mom for the rest of the day. She is also itchy to get up and out of the house since her eyelid surgery on Friday.

I am a bit concerned about some pain I am having with the tendon going down the back of both thighs. It is very sore in the mornings and, after an Aleve, it loosens up and is better. I also noticed that there is no pain if I bend forward a little bit. Interesting. I wonder if it was caused by the last run of Cipro, which can cause tendon damage months afterwards.

This morning, I am going to try the treadmill then see if it is better tomorrow morning. It seems the more I move, the better it becomes. But, I have to say, the pain level is around an eight and I can take a lot of pain.

We spoke with William yesterday and discovered he was just recovering from pneumonia. I get super nervous when lungs are involved and I hope this is not a trend. Apparently, they had to cancel some concerts as most of the tour group was ill. Tough tour! They head to Europe in a couple of weeks so they all need to be well!

Sunday, October 18, 2015

Wash Your Hands

It RAINED yesterday! I think a lot of the tourist fled so the festival is not going to be successful this year. Michael and I were only able to trim the tree branches off the garage roof and he dug out five wild grass plants before the rains began. Using a pick axe and a shovel, the grasses put up a battle. It was man vs grass. He won in the end but I was worried he was going to have a heart attack in the process!

The rain. The winter season is approaching. Holidays. Families. People. The dreaded flu. It is that time of year. Please, please get a flu shot. I know, it didn't work last year. The formula is supposed to be good this year. Better safe than sorry. It took me three months to recover from the flu last year but I was thrilled to have actually recovered! I don't want to push my luck!

We have a hand gel in the car that we use after being in a store or gas station then we wash our hands the moment we get home. Menus are filthy. We also use the gel after handing the menus back to the waiters. All our friends and relatives know not be even think of seeing us if there they have a cold coming on. My goal is to not die stupid. I don't want to die because I was lazy and not vigilant against flu or cold germs.

Coughing. The RNs at the rehab class are very good at spotting people who are sick but decided to come to class. They talk with them about not sharing their germs then tell them to leave immediately. We have become good at distinguishing between a cold cough and an allergy cough. When walking and we hear a cough approaching, we head in the opposite direction. Yoga class? Coughing? I leave. Orchestra? Coughing? I leave. Beware of coughs. Get away from them.

I had to give up church long ago due to the prednisone. People go to church with colds and flues. People shakes hands with each other in some churches. People are seated very close together in churches. Those of us on immunosuppressant therapy have no way to combat exposure to these germy people. Now, I sometimes find solace in an empty church.

Don't even think about going to a movie.

We begin the season to be aware and to really safeguard our health.

And wash our hands!

Saturday, October 17, 2015

Enjoying Retirement and the Weekend

This retirement thing is rather nice. We slept until 7AM this morning. That has just never happened. We are having breakfast, watching "Gone Girl" DVRed off the free HBO this weekend with no plans to move quickly. The Pumpkin Festival has begun and the thousands and thousands of people will come to the coastside this weekend to see the award winning giant pumpkins, eat pumpkin rolls and garlic fries, listen to live music and shop from the artisans who vie for the limited amount of booths down the center of Main Street. The parade begins at noon. It features the local high school marching band, kids on decorated bikes, horses and the fire department. Small town stuff, which is why it draws such crowds. It is real.

We are choosing to cut branches from a tree that is touching the roof of the garage, remove two large plants, install gutter extenders along a fence, cut the grass, BBQ dinner, iron the laundry. We are not leaving the homestead all weekend.

We met at mom's yesterday and she was still very happy about her eyelid surgery. She looked fantastic and had no pain.

I am not coughing very much at all. It will be interesting if it begins today while we are working.

Enjoy the Fall day.

Friday, October 16, 2015


For years, I never used an inhaler. Ever. Last time I was in the hospital with pneumonia, a respiratory therapist was giving me treatments of albuterol every four hours, even throughout the night. I noticed an improvement in my breathing. Around day two, I asked about the treatments and was told that I had a choice between the RT treatments and using a simple inhaler. Hmmmm. Inhalers never seemed to help with my breathing issues but, I thought I would give it a shot.

Proair. Albuterol sulfate. It helped. After my hospital stay, I asked Dr. K. for a prescription because I really noticed the improvement to my breathing when I used it each morning. It has been a couple of years now.

Yesterday, mom had her eye surgery so I had to be up and out by 7AM. I forgot to take two puffs from my inhaler and one other medication for my ear issues. I struggled all day. My chest felt tight, my sats were lower than usual, I coughed a lot and began to worry that I was getting sick. I did take the Proair when I got home but it took time for me to feel any relief. Before bed last night, I even asked Michael to set up my oxygen and used it to calm the cough.

I worried that the infection I thought I had dodged might have settled into my chest.

This morning, I am breathing really well. No coughing. I am planning to workout at the other rehab after Michael and I visit with mom this morning. I will be hyper-aware of my breathing and note any extensive coughing.

Mom. Her eyelid surgery went as planned yesterday. This morning, I need to pick up some medications for her and a Chai tea from Starbucks. She will be homebound for a few days and, with then entire Bay Area coming to our little town for the Pumpkin Festival this weekend, we won't be able to get to her until Monday.

Wednesday, October 14, 2015

Oxygen Systems Part 2

Yesterday, I presented all the different oxygen systems available for those of us who need oxygen therapy. The next step is to determine which is the best system not only for now but for the future as you will probably demand more as the disease continues on its path.

A note: portable oxygen systems are selling on late night info-commercials and they mention that Medicare will pay for them. Please know that if your numbers on the 6-minute walk test determine you need supplemental oxygen, Medicare pays for a system. If you only want a portable oxygen system (POS) as your oxygen delivery system, you will not get anything else. The problem is that these are very tender systems, which break down and then what? You are stuck without oxygen. Most people who have a POS pay out of pocket for them as a travel or daytime oxygen system then have a concentrator at home.

The questions that are asked to determine which system would be right for you:

  • When are you using your oxygen?
  • At night, daytime and/o exertion only?
  • How do you determine your needs? Your MD can test your oxygen saturation with an oximeter or ABG. MD can also order an over night oximetry to determine needs at night. All pulmonary rehab programs have the patient begin and end the 8-week course with a 6-minute walk. 
  • Medicare used an O2 sat of 88% or less to qualify you for supplemental oxygen.

Now the next questions is do you need continuous or pulse dose. Continuous is a continuous flow of oxygen at a certain liter lever. Pulse dose, also call on demand, kicks in a short burst of oxygen when the patient inhales. The problem is that some of us (me) do not have the strength (shallow breather at night) to kick in the oxygen and alarm bells go off at night if I am using a pulse dose. Continuous uses the oxygen at a faster rate while the pulse dose uses it at a much lower level.

  • Each patients needs differ, so to insure the equipment meets your needs, a RT should assess you with the appropriate equipment to insure you are able to maintain the oxygen saturation your doctor wants to achieve for you.
  • The assessment should test you at an "at rest" state and with exertion.
  • If you do not keep your O2 saturation at or above the level your MD has ordered, the you are at risk of damage to your heart and other problems. 

How to Administer:
Cannulas - wide variety, different lengths and sizes of the prongs that sit in the nose and can be 37 feet long.
Oxygen Masks - usually need a flow of 6 lpm or higher to flush out the CO2, cannot use with pulse dose.
Tubing - longest you can use is 50 feet. Anything longer will reduce the liter flow to you.

There are other things available for problems such as patients needing high flow tubing and oxymizers and conserving devices.

Just another note: Most people at the support group had a large concentrator to produce oxygen while they were at home and small gas cylinders to be used when they were out into the world. I have a liquid oxygen system, which includes a reservoir that I have filled every two weeks. The problem is that it does dissipate where gas cylinders do not. But, my liquid oxygen is 100% pure oxygen, the Helios Marathon container I use can hold the oxygen up to 17 hours. Not bad. I will try to stay with my system until death but I do want to buy a POS so we can travel on the spur of the moment.

I hope this information was helpful!

Oxygen Systems Part 1

I got such good information about oxygen systems at the ILD Support Group Meeting yesterday. It was a shame to leave the gorgeous coastside but the drive up to the city was easy, I hit green lights the entire way and even found free street parking, a very rare event. One of the members I hadn't seen in almost a year, has been dealing with IPF for nine years. He looked very thin and his wife told me he was not doing well. He has been such a positive, athletic, strong man that it was rather sad to see him looking so frail.

To the systems! This is probably going to take a couple of blogs to get it all in. Thanks to the speaker from a local oxygen supplier for a magnificent handout.

There are three types of oxygen therapies: Gas/tanks, Liquid, Manufactured
     High Pressure Oxygen/Tanks
     Liquid Oxygen Systems
     Concentrators & Home Fill Systems
     Portable Oxygen Concentrators

High Pressure Oxygen Tanks - filled by your vendor, pressurized to 2000 psi to 2200 psi.
Liquid Oxygen System - Filled by your vendor operates at 22 psi.
Manufactured/Concentrators - Makes its own oxygen, draws room air through a molecular material and separates the oxygen from the nitrogen, etc.

High Pressure Oxygen Tanks: 
     Sizes - Portable: M2-M9, D & E cylinders
     Regulators - Both continuous and pulse dose settings

Liquid Oxygen Systems:
     Reservoirs - come in three sizes, 20, 30 & 40 liters, they can be used as a stationary
          and/or just fill your portable units
     Portables -
          Continuous Units - Companion 1000, Caire, Stroller and Companion T (High Flow),
               Helios Marathon
          On Demand Units - Helios Plus & Helios Marathon
          Pulse Dose - Caire Spirit, Helios Marathon

     Manufactured Oxygen -
          Concentrators - Most units fall into two models, liter flow to 5/6 or 10 lpm. They are on wheels and can be moved around the house.
          Home Fill System - Uses a concentrator with a compressor to provide home oxygen and refill your portable cylinders, so you do not have a wait for a delivery. (Takes hours to fill a tank.)
          Portable Oxygen Concentrators - There are a number of units available. Two have the ability to provide continuous oxygen to 3 lpm and the other are all pulse dose settings of 1-6. They are battery operated and the liter flow/pulse dosage directly correlates with battery life. (The bigger the case, the bigger the batteries.) Only a few are approved for air travel.

So, now that we know what systems are available, tomorrow we will ask the questions to determine which system would work for you!

Tuesday, October 13, 2015

ILD Support Group Today

It is gorgeous here. And still very dry. The evenings are cool but the days are HOT! Yesterday, the entire Bay Area was in our little town for the big Pumpkin Weigh-Off (a pumpkin from Oregon won as they have WATER there!!) then more people came looking for relief from the weather and to enjoy the holiday. By the time Michael tried to get home around noon and I left mom's around 2:15, the roads were jammed to a complete standstill. It was ugly. It took over an hour for me to get home, usually a 20 minute drive.

Another beautiful day today. Michael is staying on the coast all day while I am heading to the ILD Support Group in the city to learn about the new oxygen systems on the market. It has been so long since I attended a meeting that I am looking forward to seeing everyone! I hear people were asking about me with questions about local pulmonary rehab classes. I guess I have a reputation for rehab!

Mom and I did a Target run and included Halloween candy in the process. The bag of goodies is hidden in the closet so we won't pick at it! I even bought boxes of candy Boogers for Winnie and Oliver. Disgusting! They will love them!

Monday, October 12, 2015

Retirement Week 1

Week one of retirement: About the same as usual for me! Michael has to arrange a project to be towed this morning, then he will be home working on a tiny project for a friend. I, on the other hand, will be out of the house within the hour to work out at the other rehab then I will meet mom for the day. We are going on a Target run and we have a coupon for Mimi's Cafe for lunch.

My thighs. Time to talk about the thighs. They were doing so well for years due to the hours on the treadmill. Since I had to cut back on the speed and time spent on the treadmill due to the injury of my hip, the thighs have lost definition. That is not good. So, today at the other rehab, I am going to kick up the speed to see if it hurts afterwards or tomorrow. If not, I will try do that speed even at the rehab class. Hopefully, I have healed. I think the hip injury was exacerbated by kicking up my exercise routine to eight times a week, which was too much for this old body! Hopefully, my thighs will return soon.

Natalie messaged yesterday that they got an offer for their townhouse but the owner of the house they want would not negotiate with them at all. It was just 200K over what they could afford but that was over the asking price. I guess he thought he could create a bidding war, which didn't happen. Stubborn. Apparently, he doesn't NEED to sell his house. She is going to keep an eye on it and if it has not sold in a month, they will put another bid in. Maybe he will be desperate. Maybe. I hope.

Reminder that I will be going to the ILD Support Group meeting tomorrow to see the latest in oxygen systems. Will report back to you.

Sunday, October 11, 2015

Quiet Sunday

F1 in Russia. So far, it is kind of a messy race with lots of things going wrong. This is not what Mr. Putin would like for a race the world watches. They built a race track that winds through all the former Olympic venues. Pretty. Functional. Very smooth track, which allows them to go a long way on the tires but a hard time keeping the temperature of the tires hot enough for safe racing (no spin outs). We're about half way through the DVR of the race. It is not at all a "normal" race so it should be an interesting second half!

All my chores were done yesterday so today, I am going to just do a bit of ironing then I am going out for a walk along the ocean. Just maybe I will see a whale or two!

I did go to see Natalie's open house yesterday. Amazing. I messaged her to ask where she put all their stuff? She said they gave much of it to a local church. It looked fantastic and there were four other groups of people looking at it. I so hope they get an offer so they can buy the house in my neighborhood.

Two weeks ago, I inhaled some iced tea into my lungs. I have had a minor cough but that seems to be almost gone. No coughing in rehab. No coughing while I worked in the yards yesterday. I think I dodged a bullet.

A super busy week ahead. But, I will be enjoying a very quiet Sunday.

Saturday, October 10, 2015


It's a little weird around here. Michael's last day of work was yesterday and he will apply for Social Security to begin November 1st. I am so not ready for this! Mentally, it is weird. Financially, it is scary. There is a family issue happening (Project #1), which should be resolved soon and that may offer some financial support. Fingers crossed that it all falls into place.

Today, I am going to the bank then into the yards. After a good shower, I am going to Natalie's current townhouse for her Open House. The moment it was listed, they placed a bid on the house in our neighborhood. Exciting.

Change is in the air.

With all this change, we are waiting for the drought to end and El Nino to bring massive rains beginning soon. Or so they say. Next weekend, while the entire world is in town for the Pumpkin Festival, we will be working to get the house ready: gutters cleaned, branches trimmed away from the house, the side of the house cleaned of clutter, gutter extenders installed, some plants removed. I have a long list.

There is a F1 race from Russia happening this weekend and we are watching the qualifying right now. So far, it looks like a standard race lineup: Hamilton, Rosberg, Vettel. No changes there!

Friday, October 9, 2015

Portable Oxygen Systems

I have been thinking about buying a portable oxygen system. We have rented several different ones for our road trips but I think I want one on hand so we can take off overnight on a whim. Apria wants two weeks notice to have a concentrator delivered to a destination. I should mention that I currently use a liquid oxygen system at home. There are two large tanks in the garage, which get refilled every two weeks and I fill my backpack whenever I need to exercise or work in the yards. From my understanding, Apria is no longer offering liquid oxygen to their new patients. It requires a certification of the driver to refill the tanks and it is down right dangerous.

When I ordered a small tank of liquid oxygen (so I could fill my backpack, if needed) for our stay in Las Vegas several years ago, they sent a concentrator instead. Why? Apparently, it was a security issued. I was told, "It can be made into a bomb!" It is very flammable. I totally understood.

My problem with portable oxygen systems is that most of them are not continuous flow but on demand. I just don't have enough strength in my lungs to kick in the demand when I am in a deep sleep. An alarm goes off after awhile, which wakes us up...

With that in mind, I am planning to go to the Interstitial Lung Disease Support Group meeting on Tuesday. It will feature someone from one of the large companies with demonstrations of the newest portable systems. I will be taking notes to pass along.

Also next week, I am having a new test called a Fibroscan for my liver. My 10-years of prednisone liver. With the liver biopsy, those numbers are used in a baseline and the liver can be monitored in this very non-evasive manner. More on that as we get closer to the test.

Happy Friday!

Thursday, October 8, 2015


I was walking along the cliffs of the ocean when I noticed a pod of dolphins very close to the shore. We were heading in the same direction. The path swings away from the ocean for a bit then back. I was not sure if I would still see them but there they were. We continued our walk together to the harbor. They played a bit then began to head back, which got me moving as well. I followed them and watched as they continued on their adventure. It was such fun to be stalked by dolphins! Or maybe I was stalking them!

Do you have 100 different passwords? While dealing with Michael's new iPhone, I realized that if I were to die suddenly, he and William would be in a jam. Yesterday, I wrote down all the passwords to everything from our wifi to my Peet's coffee account. Those passwords are now in our locked files in a folder with the safe deposit box key and our wills.

Orchestra rehearsal was last night. We played really well again, I hit all the high notes and felt pretty good afterwards. Michael is taking today off but we won't be together. He has errands and I have the rehab class and food shopping.

Dick, one of my rehab boys, phoned after his doctor appointment to discuss the growth of something in his lungs. He had been on antibiotics for two weeks to see if it was an infection. Well, turned out the growth was on the outside of his lungs and the doctor felt his lungs are not strong enough to withstand a biopsy so, they are going to "take a picture of it." Dick said that if it is cancer, it will appear red in the photo. They are arranging the date for this test. Will keep you informed.

And the Cubs. Hell has frozen over! As a former Chicago girl, I am pulling for them since the Giants are done for the season. Oh, I'm also pulling for the St. Louis Cardinals. And the Mets. The Mets? One of my former students is a pitcher for the Mets. It's still going to be a fun postseason without our Giants.

Wednesday, October 7, 2015

Article about Difficulty Tracking IPF

This is an interesting article from the European Respiratory Journal, which discusses why it has been so difficult to answer questions about the incidence and prevalence of Idiopathic Pulmonary Fibrosis. (Here is the URL: )

Idiopathic pulmonary fibrosis: tracking the true occurrence is challenging


IPF is not “just” a rare disease: better diagnosis and reporting by clinicians of this fatal disease is needed
Tracking patterns of disease incidence and mortality is fundamental to disease control. The story of lung cancer is exemplary; the 20th century epidemic of lung cancer was first detected in western countries as mortality rates rose; initially it affected males more than females; and rates were not uniform across regions and between countries [1]. The epidemiological studies, motivated by the changing patterns of lung cancer occurrence, identified smoking, and occupational and environmental agents as causes of this highly fatal malignancy. Lung cancer mortality rates, which are very close to incidence rates because of the high case-fatality rate of lung cancer, and incidence rates, tracked through cancer registries, have now fallen in the USA and much of Europe in response to successful tobacco control and reduction of exposures to occupational and environmental carcinogens. In the example of lung cancer, tracking of occurrence is facilitated by the close correspondence of mortality with incidence, such that mortality is a reasonable index of occurrence, by the long standing surveillance of cancer through population-based cancer registries in many countries of Europe and much of the USA [2], and by improved diagnosis of lung cancer by increasingly accurate diagnostic methods.
By contrast, for idiopathic pulmonary fibrosis (IPF), there has long been uncertainty about incidence and mortality rates and the associated disease burden [34]. The sources of uncertainty include the complexities of establishing a diagnosis, lack of validity of the reported and/or noted diagnosis in medical records and physicians variation in diagnostic approaches over time and among clinicians, differences in utilisation of ICD codes and lack of specific ICD codes for true diagnosis of IPF, and variations across geographic regions and countries [5]. Unlike lung cancer, mortality rates are not a highly valid indicator of incidence [5] and sustained registries for IPF (and other lung diseases) are not in place.
In this issue of the European Respiratory Journal, HUTCHINSON et al. [6] report the findings of a systematic review on the published evidence available on IPF incidence and mortality. They used an appropriate approach to cull through the literature, finding 34 publications from 21 countries meeting selection criteria. The reports have inherent limitations associated with epidemiological studies and are mixed in their sources that include: 1) administrative databases, e.g. unvalidated insurance claim data; 2) local medical records; 3) questionnaires to survey medical providers; and 4) routine mortality data. Administrative datasets and mortality statistics have the advantage of availability, while inevitably limited by diagnostic misclassification and lack of standardisation. Questionnaire surveys are an imperfect tool for capturing new and prevalent cases. Studies based on uniform case identification and review of medical records have the potential to provide accurate information for the covered population, but such studies have not been maintained for substantial periods of time or in multiple populations. For example, COULTAS et al. [7] carefully ascertained all IPF cases in one county in the USA and subjected medical information to a standardised review; however, the project spanned only 3 years.
While the data captured by HUTCHINSON et al. [6] have these inherent and inevitable limitations and comparability among datasets cannot be assured, some informative patterns were identified. One useful finding was the description of the range of incidence rates, estimated at 3–9 cases per 100 000 per year in Europe and North America, and some evidence that incidence is rising. For comparison, the incidence of lung cancer among males in the USA is presently 70.1 per 100 000 (age-standardised to the US population) [8]. For some cancers, such as laryngeal cancer and cervical cancer, incidence rates are comparable to those of IPF at 3.2 and 7.7 per 100 000, respectively, reinforcing the proposition that IPF is an overlooked disease [8]. For Europe and North America, mortality rates for IPF overlapped with the range of incidence rates emphasised by HUTCHINSON et al. [6], providing further support for their “best guess”.
The evidence indicating a possible rise in occurrence across the four decades covered (approximately 1970–2010) is intriguing and could reflect increasing rates of detection and also a shift in the distribution of aetiological factors. Undoubtedly, there has been an increasing likelihood of diagnosis over this period, given increasing awareness on the part of physicians, the growth of pulmonary medicine, and the implementation of increasingly sensitive imaging techniques. In addition, an improved standard of care of patients with IPF may have contributed to lower mortality rates observed in recent clinical trials and thus, the observed increase in prevalence may in part be due to the apparent increased survival [910]. By definition, the causes of IPF are unknown, but epidemiological studies have identified a number of potential environmental risk factors with the strongest evidence for cigarette smoking besides genetic risks and risks associated with microaspiration from gastero-oesophageal reflux [145].
Above all, the systematic review by HUTCHINSON et al. [6] highlights the need for systematic tracking of the occurrence of IPF. Among the approaches for doing so, administrative databases and electronic health records that are maintained for large populations, e.g. a national healthcare system or other delivery systems, combined with mortality data may represent the most feasible alternatives, particularly as electronic health records gain richness and specificity and tools for using them become more sophisticated in search capabilities. Already, such databases have been used, including those for Medicare beneficiaries and other health insurers in the USA [1012], residents of Olmsted County in the USA which is covered by the Mayo Clinic [13], and from a sample of general practitioners in the UK [14], for example. If such databases are used for tracking the occurrence of IPF, nested studies could be implemented for validation of diagnoses and for making adjustments for errors in classification.
Basic epidemiological information has long been lacking for IPF, as documented by HUTCHINSON et al. [6]. Aetiological, genetic, mechanistic and clinical trial research has provided some insights into the course of the disease, but insufficient attention has been given to assuring that we understand population patterns of IPF occurrence and the associated burden of disease [15]. It will only be through ongoing large-scale epidemiological investigations that determination of the effectiveness of recently approved efficacious interventions for IPF or development of other potential strategies for disease control through primary or secondary prevention will be possible [1617]. The findings of HUTCHINSON et al. [6] document that IPF should not be dismissed as merely a rare disease and that better ways of reporting/documenting the ascertained diagnosis of IPF utilising 2011 diagnostic criteria and new approaches for monitoring are needed, and this should be established based around large databases and emerging tools for clinical informatics [5].


  • Conflict of interest: Disclosures can be found alongside the online version of this article at
  • Received June 18, 2015.
  • Accepted June 20, 2015.