Living Well with a Bad Diagnosis - Lung Disease

Thursday, October 31, 2013

Pulmonary Fibrosis


I received the below from the head of our ILD Support Group:

Hi, Everyone –

I just received an exciting email from Dr. Jeff Swigris at National Jewish in Denver.  It’s about a new program called the Participation Program for Pulmonary Fibrosis, or P3F.  Here’s its mission statement:
“The Patient Participation Program for Pulmonary Fibrosis (P₃F) is an innovative new program whose over-arching purpose is to identify and motivate patients to participate in the process of advancing knowledge of pulmonary fibrosis (PF). The mission of P₃F is to promote understanding of what it’s like to live with PF, to find ways to make life better for patients who suffer from this disease and ultimately, to help discover its cure.”
The program website is:      http://pulmonaryfibrosisresearch.org/
I’d like to point out three things on this website, all of which you will find in the blue bar across the top of the home page:
1.      The P3F registry – An opportunity for you to sign up for ”a confidential database of individuals diagnosed with PF (and/or their primary supporters/caregivers) who wish to be contacted about participating in research projects as they become available”

2.      Current Studies – There is a new and exciting study called Determining the effects of supplemental oxygen on outcomes meaningful to patients with pulmonary fibrosis (PF).  If you currently wear oxygen at all - any time of day or night – PLEASE sign up for this easy study.  We all very much need to understand more about the experience of using supplemental oxygen.

3.      Dr. Swigris’ blog – Two recent posts are VERY timely, since our November 12 support group meeting will be a walk to get us all thinking about and experiencing the important role of exercise in interstitial lung disease:

I Have Pulmonary Fibrosis…You Mean I Should Exercise?
What’s Going On Inside When I Exercise?
There’s a terrific post on shortness of breath, too.

So click on  http://pulmonaryfibrosisresearch.org/  to  find out all about the new and exciting Participation Program for Pulmonary Fibrosis, or P3F!

Wednesday, October 30, 2013

Busy All Day

My energies have returned! Everything from my to-do list of laundry, washing the car, food shopping, balancing the checkbook, paying bills and picking up the house happened before 10AM. It was marvelous to feel like I was able to do it all with no problem. No shortness of breath. No fatigue. At the rehab class, the retired head dropped by for a quick visit. I deeply miss her. Rehab is just not the same without her.

Then it hit. By the time Michael got home, I was struggling to stay awake. By 7:30, I was drifting off in my chair. We stumbled into bed at 8:15. I don't remember the rest. Off to dreamland!

Today's goal is to prepare for tomorrow. After yoga, I am making two Mississippi Mud Cakes: http://www.merrygourmet.com/2013/09/mississippi-mud-cake/  One is for Natalie and the kids on Halloween, the other is being sent with Michael to share with the guys in the shop. It has been awhile since I have sent a treat for them. After they are made, I am making a dinner of Greek Shrimp Bake http://www.deliciously-thin.com/greek-shrimp-recipe.html so it is ready when Michael gets home before I leave for orchestra rehearsal. The house will also be picked up; table set; cups and plates and glasses set out; because I have to leave very early in the morning for the entire day on Halloween.

I did get a call to confirm the 8:30AM two-hour exercise test for Medicare and was invited to lunch with the woman at lab's front desk. That should be fun.

Lots to do all day today. I hope my energies hold up all day. And evening.

Tuesday, October 29, 2013

Fake Christmas Trees

Flu shot? Got it. Since it takes 10-14 days to build the antibodies, I will be protected by Thanksgiving. Now, a push to get Michael immunized. After a good cup of coffee and breakfast, I am going to pickup a few things at Safeway, balance the checkbook, pay the bills and go to the rehab class. Dinner is already made so it will be a relatively quiet day.

I am beginning to look forward to the holidays. As my niece will be hosting Thanksgiving and my sister and her husband hosting Christmas, I can just enjoy the holidays. No perfect house. No perfect yards. William will be with us and we can just enjoy being with each other. With crab. The season opens on Friday. Yum!

Which brings me to fake Christmas trees. After we bought this house with its cathedral ceilings, I always insisted on having 10'-12' real Christmas trees. The smell was worth all the effort. After I got sick, Dr. K. mentioned that I needed to buy a fake tree. Fake?!? No way. After she explained that I would be bringing mold and fungus in the real trees into my house and that my disease of HP was caused by mold, fungus or organic dust, we bought a fake tree. It was a small, cheap, Charlie Brown tree. I didn't know that the branches had to be adjusted and fluffed into place and it really was pathetic. After that Christmas, I bought a nice, fuller, taller tree that really does look real. Now, we decorate both trees. I still miss the smell of Christmas in the house during the season but better safe than having a crash due to an exposure.

Michael is one of the people who has been buying an individual insurance policy through the years. Kaiser. Huge deductible. Smaller premium. He is REALLY healthy so it has worked out just fine for us. He received a letter a few weeks ago stating that his policy was being grandfathered in and he was not being cancelled. We didn't understand the ramifications at the time. My Medicare policy and supplemental policy through AARP are both still in place as well. Watching all the news reports of premium increases of 50+%, we are grateful to have these policies still available to us.

Monday, October 28, 2013

Living Well

Great weekend. Lots of wonderful social interactions. Lots of time talking with Michael. I got to sit on the floor in a living room surrounded by three young children playing together. Sometimes, they let me play, too. It filled my soul. We ate amazing Vietnamese food made by the grandma, met the grandpa who was in the same prison camp with John McCain, discovered that the remote control pink dune buggy was a perfect gift for the newly turned 2-year old then Don took us to a spot deep in the Mission district for dessert. It is the hippest area of the city with lots of new shops and restaurants.

With all of this, it was the conversation in the car parked in front of Don's loft that was most on my mind last night. British Don has been dealing with heart issues, including the installation of 10 stints, but the latest issues are causing him pause. He said that he knows, truly knows, that he is not going to live much longer. He has been having what he calls TIAAs or small strokes but, the evidence of these have not shown up on CT scans. I have a feeling it is more of not having enough blood going up into his brain as he has huge vascular issues. Michael is the executor of his estate, which is why we were talking about it. He wanted to tell Michael some things, talked again about his estate and passwords to his computer and accounts.

He said that he worried that he would die in his sleep and the housekeeper would find him a week later. This is where I piped in from the back seat. I truly believe that we have some control over how we die. My aunt loved the attention of being bedridden for years. Putting a burden on her loved ones proved, to her, that she was loved. My mom would hate that and would rather die quietly alone. In my heart, I know that my mom will never see the inside of an assisted living place because she will make sure she dies before she reaches that point.

I also believe that it is up to each of us to embrace everyday we have left on this earth. A day in bed depressed because we are ill is precious time wasted. We need to have all the conversations and make the important relationship in our lives stable so if we suddenly die, nothing was left unsaid.

Don and I both agreed that knowing that life is short is a gift. A marvelous way to live life. Neither of us sweat the small stuff. We do not allow negative people invade our time or lives. We have said what was needed to be said. We laugh a lot. We try not to talking about being sick all the time. We appreciate every moment.

Michael commented that he has watched as each of us processed the knowledge of having a fatal disease into the acceptance phase. In truth, we really have no control over the diseases. We have learned to deal with the doctors and the tests. We both have come out at the other side of this process with a healthy respect for the disease yet a firm determination to live. Fight to live well. Insist on living well with a bad diagnosis.

Sunday, October 27, 2013

Out In the Evening Air

My baby's back home! We picked up the computer last evening before enjoying a nice dinner together. It has been months since we have spent fun time out into the world in the evening. It was marvelous. We went to the Avenue, walked to a store for Michael then down to the Apple Store. It was packed.

I found a guy in a blue shirt, told him we were there to pick up my laptop when a woman standing just across from me said, "Me, too!" He took our names, Michael went to look around so she and I began to talk.

We had given our names, I commented that she had a great name. She thanked me, I told her my boring maiden name then said, "Then 40-years ago, I married that man (pointing to Michael) and told him that if we ever divorced, I was keeping his name. I just love it." I discovered that she was there to actually pick up a hard drive for her job at a child photography business. A fancy, high end one. We talked about how being a photographer for a living was not her original intent as she had gone to school for child psychology. Perfect combination! She asked what Michael did for a living.

Now, as you know dear reader, I have been banned from talking (bragging) about my husband and son. Each is successful and highly regarded in their fields. They would rather sink into the background. No spotlight for them!

So, I told her that the ban was in place regarding my husband and son but quietly mentioned a bit about Michael. Just after she asked what our son did, the computer and her hard drive arrived.

They asked for a photo I.D. from both of us. I told them I could vouch for her and she for me as we were both reaching for our licences. Everyone laughed. As I opened my computer to see if it really worked, there was my wallpaper which was a photo of William working at a famous local venue while the big group was on stage. I showed it to my new best friend. She knew the group and her eyes got really big. "How long has he been with them?" My reply, "Ten years."

Business began to happen, like how was I going to pay for this, so she and I looked at each other, hugged and she took off.

Women of any age can connect anywhere. Any time.

We walked back to the car, went to our most favorite Greek place which is closed on Sundays so we haven't been there forever, and enjoyed a nice dinner. Talking. Laughing. Telling stories.

It was cool but not really cold when we got home so we lit the fire pot, sat on the swing in the garden and talked some more until 9:00. It was a lovely afternoon and evening. I am still recovering from the last two months of illnesses but I felt good and normal and relaxed last evening. It was a relief to realize that I have not had any permanent damage from the crash and that my life can return to normal once again. I am so thankful.

Saturday, October 26, 2013

Focus on Tomorrow and Halloween

A rather quiet day ahead. Farmers market and the bank this morning followed by minor yard work. Everything has slowed down in the garden so I just need to trim a couple of things then fertilize my annuals. All my attention is focused on Sunday and Halloween.

Sunday: Meeting British Don at his city loft then we are due to a luncheon a his/our friend's home to celebrate Ada's 3rd birthday. Don has also just had a birthday so we are going to a hip patisserie in the Mission District after the lunch. A bit of a celebration for him.

Halloween: The two hour exercise test to prove to Medicare that I still need supplemental oxygen begins at 8:30. Later in the afternoon, I am meeting with Dr. K. at 4:30. It is going to be a long day. I am planning to take a very long walk, a lovely lunch then a long walk back up the huge hill. That should kill a few hours. The traffic trying to get home afterwards should be horrendous. Winnie, Oliver and their parents are due at our house before they trick or treat. We have a very safe area - car wise - and we always have fun being with them. I make goodie bags for them and the other kids on our street and a special cake to eat before they head out to gather candy. I probably won't be home until after they return from the hunt. Thankfully, Michael should be home. It is going to take a lot of planning to pull this off!

Monday, our son is going to be in a town on the ocean just 45-minutes south of us. We would love to see him, have a cup of coffee or a meal, if he is available. The problem working on a tour where he has to hook into the on site equipment that it usually is in need of repair. He can't anticipate how long these repairs will take so we will wait to hear if he will have time to see us or not.

I have been talking to Michael about being careful from now through the end of the year to not over book our social calendar. I think that is how I got sick. We have to mindful to make it to the first of the year without another hospital stay!

Friday, October 25, 2013

Flu Shot

I so miss my computer.  It is my entertainment during the day, keeps me current and hopefully, it should be out of surgery soon.

My body is feeling all of the exercise this week. I think the yoga class pushed it over the edge as I am sore.  My core, arms and thighs! Back to the other rehab this morning before meeting up with mom. We have no plans so it should be fun.

Flu shots: haven't gotten ours yet. I was waiting until I was fully recovered from the pneumonia and bronchitis but I think I am now ready. Michael and I are planning to get it at CVS on Sunday before we head to the city. We are going out in a social setting for the first time in months. The owners of our favorite group of restaurants in the city have invited us to a luncheon at their home to celebrate their daughter's 3rd birthday. They are expecting a baby next year and have just returned from a 6-week visit with relatives in the south of France.

In the past years, Michael always refused to get the flu vaccine. He had all the excuses but what worried me the most was that he could bring it into our house. Nope. Wouldn't have it. What has changed his mind? He got the flu four years ago. It was bad. He thought it would be easier to die than to recover. Now, he never wants to have to endure it again. Also, I hear that the expected flu is a respiratory virus. So this year, it is even more important that those of us with lung issues are protected.

Thursday, October 24, 2013

Back To Life

I think she was trying to kill us! The yoga hell class was a challenge plus it went overtime. The 90-minute class was close to 2 hours. This was my first class back since my lung issues. Thankfully, I am not sore today but I feel taller and stronger.

And, the second new event back into my life was orchestra rehearsal. It felt fantastic to play again. The Debussy Petit Suite was so beautiful with the harp near me. Beautiful. But, I began to fade around 8:30 and struggled the last hour. The music required a lot of thinking - key signatures with lots of sharps and flats which changed throughout the piece. Brain workout! We fell into bed at 10 and I don't think either of us moved until the alarm went off at 5AM. Yes, that early! Mom has an emergency eye doctor appointment at 8:00 this morning, about an hour from her home.

Also today, Apple phone to notify me that the parts to fix my computer are in so we will be dropping it off this morning after her appointment. The plan is to get it all done so I can go to my rehab class at noon. Busy morning ahead!

Wednesday, October 23, 2013

Returning

My computer is going to be an easy fix and will visit the computer operating room as soon as the needed parts arrive. Thank goodness! Until then, Michael's iPad is doing a good job.

At the rehab class yesterday, I did the full load and I am beginning to see definition in my thighs again. It did wipe me out and I slept long and hard last night. The weather has turned cold here. No sun the past few days and blankets have been piled on each night.

Skin update: having never had things frozen off of my body before, it was rather weird to have a big one on my arm fall off yesterday leaving a tender, red cavity. They have all increased in size and hardened and I expect more to fall of in the next few days. Very tender!

Today, I am returning to yoga hell and an orchestra rehearsal. It will be a long day so I will try to nap this afternoon.

Tuesday, October 22, 2013

Skin Cancer

My computer is going to visit a genius today. Thankfully, Michael's iPad is helping me at the moment. After working out at the other rehab yesterday and lunch with my mom, I drove deep into the heart of the city for an appointment with Dr. F., my dermatologist.

With years of Imuran under my belt, I no longer have protection from skin cancer. Dr. K. told me to be sure that I am checked for it every year. I had first met Dr. F. just before my surgery to remove the basil cell carcinoma. It has been several months.

She checked the scar, I told her about wanting to meet every year and she asked if anything was bothering me. Yes! Several bumps have suddenly shown up on my legs, hands and arms. I scratched them yet they are still there. Little white, tender, scaly, bumps. She said they were precancerous, grabbed the freezing torch and went to work. All in all, she froze over 20 of them. It hurt but I was so happy to get rid of them. Well, it will be a while before they die and disappear.

If you are on Cellcept or Imuran, please protect yourself from the sun and have your skin checked for cancer. Dr. F. wants to see me every six months.

Sunday, October 20, 2013

computer broken

Ah, computers! I am having huge problems with it and have an appointment with a Genius on Tuesday. Will continue after it is okay!

Saturday, October 19, 2013

PFT Results

I didn't do any damage during my recent bout with pneumonia! Here are the numbers:

Previous (August) tests:
Forced Vital Capacity - 1.63 (49%)
Forced Expiratory Vol - 1.35 (53%)
Diffusion, adjusted - 13.13 (51%)

Yesterday's tests:
Forced Vital Capacity - 1.72 (52%)
Forced Expiratory Vol - 1.40 (55%)
Diffusion, adjusted - 12.05 (47%)

I also remember that my Total Lung Capacity in the past as 48%. This test, it was 51%. That is good news! Once that number hits 40%, it is off to the transplant clinic for me!

Afterwards, I made my way to mom's for a run to Best Buy and the Geeks for her computer before going to lunch. Today, the Pumpkin Festival takes over the entire town. Michael is making his way over the pass for the day then coming home early this evening. Traffic will be totally nuts. I am working in the yards, enjoying the sunshine and just taking it easy!

Friday, October 18, 2013

PFTs and Pumpkins

A quick blog this morning. There is a strike in the BART system this morning so the trip into the city for my 9:00AM PFTs this morning is going to take at least double the time. I am leaving within the hour. It will be interesting to see if I did any damage these last two months.

Afterwards, mom and I are going to lunch and errands before I head home for the weekend. The entire weekend. The crazy pumpkin Festival is taking over the town. I bought a ton of food yesterday so we don't have to leave the house.

The rehab class went well yesterday. It was great to see everyone, Dick came by beforehand to give me some recipes and a hug. Sherman is still out because of the surgery to his hand. It was quiet there but I was exhausted afterwards.

Here we go. Into the weekend. Pumpkins galore!

Thursday, October 17, 2013

Overextended

OUCH! I am sore this morning. After buying over a hundred plants yesterday, I began the almost six hours of ripping out and planting. The removal of two large City Garlic plants and everything else in the garden near the rock wall in the front took over two hours. I was wet with sweat, downed three bottles of water and began to need breaks before it was all removed. Then, I hauled four huge bags of soil to be spread before planting a long row of white primroses along the rocks then purple and yellow and white pansies within a row of white small violets.

Then, I turned to the bed underneath the front windows. There were old primroses and other plants that needed to be removed. Done. I replanted purple and yellow primroses. Then to the back! Using the same color combinations, I planted the back bed.

I need to mention that while I worked in the garden, I wore a mask, oxygen and a hat.

In the meantime, I had thrown a pot of sauerkraut with short ribs in the oven for three hours. It was delicious. Spices and V8 juice, carrots, onion and an apple were added to the sauerkraut, which made it very flavorful. Michael, not normally a huge sauerkraut fan, loved it.

By the time I was finished watering the new little flowers, it was clear that I had overextend myself. There was no way I would be able to stay awake for the orchestra rehearsal and my hands were sore. After a shower, I was in my PJ's at 5:00!

Today? The first day back to the rehab class! I need to run into town for some potting soil and a quick food run. The Pumpkin Festival is this weekend. We usually have well over 100,000 visitors per day. It is crazy. We are not leaving the house so I want to be sure to have enough food to hold us.

Wednesday, October 16, 2013

Synergy

Throughout our marriage, our timing has been extraordinary. There is a spot, one spot, at the beginning of the pass to drive over the mountain to the coast where the south bound cars meet the northbound cars at a stoplight. When we were both working and leaving work at various times, it was just weird how often we would be a few cars in front or behind each other. Last week, when I was parking the car for lunch with mom, Michael pulled up next to us. He had been delivering a car and spotted us as we drove through an intersection. I was not surprised. We do this sort of thing all the time. If we plan to meet somewhere, we are both always early by about the same minutes. Our rhythms are the same.

Yesterday, mom and I had a ball at Home Depot. She almost lives there. All the employees say hello as they pass by. We met a lovely woman who helped us check out at the returns counter, we talked and we ended up hugging each other. She told us that they needed a lot more fun customers like us! Driving back to mom's place, we were on the main road near Michael's work when suddenly, I spotted him running across the 4-lane road. What are the odds? We followed him, had a quick chat and a kiss and off he went!

Also, he worked the phone and got a reservation at the #1 restaurant in SF for my birthday dinner. What a guy.

This is going to be a huge day for me. I am not sure if I can do everything on my list! This morning, the nursery is going to find me searching for annuals. I need to clean and remove many small plants from the front area and make it pretty again. Dinner tonight is going to be short ribs and sauerkraut baked in a slow oven for almost four hours. Then, for the first time in months, I am going to the orchestra rehearsal. Rather excited to see everyone again.

Tuesday, October 15, 2013

Staying Active

I am a bit worried about my mom. After a successful workout at the other rehab, I walked into her place, she got up and came over to me. I noticed that after we hugged, she didn't say anything. I looked up and her eyes were blank. I grabbed her and lowered her into a chair. She came around quickly but she said she has been very short of breath and almost called 911 on the weekend. I think it because of the recent pneumonia and lack of food. She is tiny anyway but she has not been eating. We went to Applebee's for lunch then to her annual dermatologist appointment. She was able to eat almost a whole bowl of soup and a roll. I worry that she will pass out and fall when she is alone.

When we ran into friends at the mall last week, we talked about a book about retirement. The point of it was that we all worked hard to provide for the family and we worked really hard for a lot of years. Suddenly, it stops. All that pressure. All that time at work during the day. Gone. What this book's point was that we all need to spend as much time and energy in our retirement on our health. If we want to live a long, active older life, it is imperative to work out everyday, reduce the amount of food we eat, watch what goes into our mouths and stay active in the world.

At the dermatologist yesterday, they were amazed how my mom looks 20-years younger than her 85-years. I was thinking back to how active she has always been. When I was young, we lived on two acres in the country north of Chicago. Most people allowed their land to go wild expect maybe a patch around the house. Not my parents. Every inch of land was cut, flowers were planted, the side property was lined with a hundred lilacs, there were always flowers in the garden and she did it all. She did a lot of really hard physical activity all of her life. She had muscles to show off. She was so limber, could put her foot behind her head. She and dad played golf almost everyday throughout their retirement and never, ever used a golf cart.

When I talk with couples who use the other rehab as a community gym, they are all fit and mentally present. Most are in their 70s and 80s. There is a connection here: Get up, get moving, do daily consistent exercise to be active and not housebound during the aging process.

For those of use who are struggling with a disability, it is even more important to stay active in the world. Fight for our independence everyday. Work our muscle and eat the best food possible. It pays off in the end. We can have a better quality of life for a longer period of time. Life. Live it.

Monday, October 14, 2013

Back to Routines

The house is clean, the laundry done, Michael's work/dress shirts irons, the garden is perfect, there are groceries for the week in the house so I am ready. Okay. Here we go. Back in the saddle again! This week, the focus is to get back to my routines. Back to pulmonary rehab, my "power yoga" class, orchestra rehearsal and mom's doctor's appointment today. Also, throw in a major set of pulmonary function tests on Friday. We'll see if I am still standing next weekend!

We also made a decision where to go for my big birthday dinner next month. Michael is trying to pull some major strings to get a reservation to the #1 restaurant in SF. It usually takes two months, in fact, exactly two months. One must phone, two months to the day to make the reservation. The line is always busy. After repeatingly hitting redial, a human finally answers who confirms the time and date and assigns a confirmation number. No names. Apparently, people were able to go into the restaurant, peek at the reservation book and steal reservations. No longer. Don't have the number, don't get the table. Michael has been there several times, I have been there just once. It was magnificent. Elegant yet relaxed. Michael is going to contact William today - who is currently on tour in Pittsburgh - to see if he wants to join us. As a major foodie, I have a feeling he will fly in for the event.

We finally spent some time with the neighbors in the other corner of the cul de sac yesterday. After a couple of years waving to each other, we went by while he was painting the front of the house. After a nice chat, he gathered up his wife, who was working in back, and we took them on a tour of our garden and house. They also told us that they are expecting a little girl in March. Their first. What nice people. We made plans to talk about their garden. Their yard is odd-shaped and has lots of privacy issues. It could be magnificent.

Yesterday, I wore jeans and a collared shirt under a nice sweater. A fall sweater. The weather was sunny but cool enough. It felt fantastic go deep into the closet to move all of the sweater forward. Michael dug out a rosemary bush that was getting too big for the space in the front garden and drilled holes into the stump that is driving me crazy until it burned out the drill. He also broke the shovel getting the rosemary out so I need to buy another one today! I told him not to disappear as there will be a photo of me buying a new shovel at Home Depot! I watch too many of the shows on ID Discovery!

Monday. A new beginning. Time to work on more muscles and strength and stamina. The focus of the week.

Sunday, October 13, 2013

Sunday Morning Coffee, Formula 1 and Medical Test Memories

The Formula 1 Grand Prix from Japan is on right now - on DVR - and it should be a good race. Lots of room for passing. Vettel is having brake problems so he might not finish, which would be a big deal in the driver's standings. My buddy Grosjean is leading the race, at the moment.

I love these mornings, just the two of us and a pot of coffee. We are staying home today. I have two things on my to-do list for Michael: removing a rosemary plant in the front yard which is getting too big and drilling some holes for chemicals in the stump of the tree causing me such a mess in the yards. Not too bad. It should not take much time.

Having a properly working cannula last night made a huge difference as I slept the night through without moving. I feel rested this morning.

When I met Dr. K. in May of 2005, she ran me through a lot of tests: exercise test to see if I needed oxygen, sleep test to see if I had sleep apnea or needed oxygen at night, a series of tests for GERD. She also was the first person to mention pulmonary rehab. I had been diagnosed for five months before she arrived at my university hospital and not one doctor ever mentioned rehab to me.

Years later, as I got to know others in my ILD Support Group, I was shocked when hearing their stories of the doctors not wanted to do these tests as there was "no indication." I had no indication of GERD yet it was so bad that I ended up with a Nissen Fundoplication, a surgery that she also told me I was going to have. I am so grateful that Dr. K. took over my case when she noticed I was not being managed well by the young doctor. He was gone shortly after she arrived, by the way. He was not good.

Saturday, October 12, 2013

Cannula Issues

On Thursday, Apria came to fill my liquid oxygen tanks. I love the driver. We have known each other for years. Usually, I am at my rehab class when he comes to fill the containers, which we roll out to the side of the garage, but I was home this week. He rolled the two tanks back into the garage for me. As he pointed to a bag of hoses, he said, "You need some new hoses."

He helped me connect a new long hose with a shorter one with the cannula. The connector can sometimes be difficult. Great! New hoses!

Thursday night, I didn't sleep well and I kept waking up every couple of hours. Poor Michael, he was blamed for snoring too loudly! I was exhausted last night. I fell into bed and passed out. All was well until I awakened at 10:40. 10:40?!? Back to sleep, I awakened again at almost 1:00, then 2:30 then 4:00. It was a long night.

At 4:00, I pulled the cannula out of my nose and tried to feel the forced air coming out for each nostril. One was working, the other was not. In other words, I was not getting enough oxygen and as I went into a deeper sleep, I would wake up.

I moved the working side into the other nostril and fell back to sleep until 7:00. First thing this morning, I threw the cannula away, attached a new one, tested it and then planned a nice nap this afternoon! I will need it!

Friday, October 11, 2013

Test Runs

It felt fantastic to have real clothing on and not having to see any doctors yesterday! Mom and I spent the day together beginning with getting her toe nails done while I had a manicure and my eyebrows waxed! Lunch afterwards was the most delicious grilled cod taco for me and a Mahi taco with mango salsa for her. With nothing important to do, I wanted to swing by the Apple store but quickly needed a rest room. Up three floors in Macy's, we found one. I suddenly had a thought. Mom had been thinking of finding a sports bra because of the hump in her back has made wearing a regular bra very painful. We were in Macy's, we had time, we found a perfect saleswoman and TADA!, she found two that fit really well. One is bright turquoise! Afterwards, we were sitting on a bench in the mall catching our breath when friends spotted us. They own fishing boats in Alaska and were just local kids who went to high school together. Their children are now grown and all doing very well. The husband just had some surgery, we had a great chat then said our goodbyes.

Onto Apple where I learned how to access the new iCloud instead of my Mobile Me. Well, it sounded easy. After I got home, I tried to pull down the system preferences and it still is Mobile Me and not iCloud. I made sure I am currently updated but...back to Apple today. And back to rehab today. I will try to see if I am ready to return to rehab next week with a test run this morning. It is the first step to getting back into my life.

A gentle weekend is planned. After a quick cleanup of the gardens, we are planning a quiet Sunday together then doctor's appointments, a full PFT, yoga class, orchestra rehearsal and pulmonary rehab will hopefully return to my life next week. I can't wait!

Thursday, October 10, 2013

"Daughters of Pulmonary Fibrosis"

I tracked down the name of the beautiful place in Tennessee where my aunt lives and phoned yesterday. Yes, she is there. I requested a note to be placed in her mailbox asking her to phone me. Nothing yet. Still concerned!

It was a writing day yesterday. I began working on my eulogy and the hours flew by. I am putting everything down but will go back to edit. So many memories.

Mom and I are having a day together today. She feels so much better, her toe nails need attention, we will have a fish taco lunch afterwards then I will drive her back home. That will be a big day for the two of us!

Below is an email for the good people at the Coalition for Pulmonary Fibrosis regarding their "Daughters of Pulmonary Fibrosis" campaign:


Coalition for Pulmonary Fibrosis Announces First Ever Daughters of Pulmonary Fibrosis Leadership Conference

Conference brings together Daughters from across the United States to build awareness of devastating disease


CULVER CITY, Calif.Oct. 9, 2013 /PRNewswire/ -- The Coalition for Pulmonary Fibrosis (CPF) is pleased to announce the first ever Daughters of Pulmonary Fibrosis Leadership Conference to be held at the Marriott Marquis in downtown AtlantaFriday, October 11 to Saturday, October 12. This unique program will bring together relatives of past and present patients with idiopathic pulmonary fibrosis (IPF) who have a shared goal of increasing awareness and understanding of the disease. IPF is a progressive and fatal disease that causes permanent scarring of the lungs. There are currently no FDA-approved drug treatment options and unfortunately, most patients live only 3-5 years following diagnosis.

"Our goal for the first official gathering of the Daughters is to provide, for many, a first chance to speak with others who are connected to them by a common thread and can fully empathize with the experience of dealing with IPF," said Mishka Michon, CEO of the CPF. "With a collective group of like-minded and passionate individuals, we hope to ignite each person's efforts in raising awareness among their community and create a network of Daughters across the country."

The Daughters of PF program was established by the CPF in 2011 with the goal of vastly expanding awareness of the disease by holding events and fundraisers across the nation. At the initial meeting, the CPF will encourage individuals to identify areas of focus to help reach these goals within their communities.

"As a Daughter of PF myself, I understand the importance of having support from your family and community. This disease has a significant impact on both the patients and their families," said Teresa Barnes, Vice President of Patient Outreach and Program Support at the CPF. "Our hope at the CPF is that the Daughters will share their stories, to not only help each other but to bring national and local attention to this disease."

The Daughters of PF Leadership Conference is sponsored through the generous support of Boehringer Ingelheim Pharmaceuticals, Inc.

To learn more about IPF, the Daughters of PF program and the CPF, please visit http://www.coalitionforpf.org/

About idiopathic pulmonary fibrosis
Idiopathic pulmonary fibrosis (IPF) is a chronic, progressive, severely debilitating and ultimately fatal lung disease, of unknown origin, for which there are only limited treatment options available to date. The incidence of IPF can vary considerably and there is some evidence that the patient population is increasing. IPF is characterized by progressive scarring of lung tissue and loss of lung function over time. Development of scarred tissue is called fibrosis. Over time, as the tissue thickens and stiffens with scarring, the lungs lose their ability to take in and transfer oxygen into the bloodstream, and vital organs do not get enough oxygen. As a result, individuals with IPF experience shortness of breath, cough and often have difficulty participating in everyday physical activities.

About the CPFThe CPF is a 501C(3) nonprofit organization, founded in 2001 to accelerate research efforts leading to a cure for pulmonary fibrosis (PF), while educating, supporting, and advocating for the community of patients, families, and medical professionals fighting this disease. The CPF funds promising research into new approaches to treat PF; provides patients and families with comprehensive education materials, resources, and hope; serves as a voice for national advocacy of PF issues; and works to improve awareness of PF in the medical community as well as the general public. The CPF's nonprofit partners include many of the most respected medical centers and healthcare organizations in the U.S. With more than 26,000 members nationwide, the CPF is the largest nonprofit organization in the U.S. dedicated to advocating for those with PF. For more information please visitwww.coalitionforpf.org or call (888) 222-8541.

About Boehringer Ingelheim Pharmaceuticals, Inc.Boehringer Ingelheim Pharmaceuticals, Inc., based in Ridgefield, CT, is the largest U.S. subsidiary of Boehringer Ingelheim Corporation (Ridgefield, CT) and a member of the Boehringer Ingelheim group of companies.

The Boehringer Ingelheim group is one of the world's 20 leading pharmaceutical companies. Headquartered in Ingelheim,Germany, it operates globally with 140 affiliates and more than 46,000 employees. Since it was founded in 1885, the family-owned company has been committed to researching, developing, manufacturing and marketing novel medications of high therapeutic value for human and veterinary medicine.

As a central element of its culture, Boehringer Ingelheim has a demonstrated commitment to corporate social responsibility. Involvement in social projects, caring for employees and their families, and providing equal opportunities for all employees form the foundation of the global operations. Mutual cooperation and respect, as well as environmental protection and sustainability are intrinsic factors in all of Boehringer Ingelheim's endeavors.

In 2012, Boehringer Ingelheim achieved net sales of about $19.1 billion (14.7 billion euro). R&D expenditure in the business area Prescription Medicines corresponds to 22.5% of its net sales.
For more information please visit www.us.boehringer-ingelheim.com
Contact:
Teresa Barnes
888-222-8541, ext. 702
tbarnes@coalitionforpf.org

Wednesday, October 9, 2013

Concerns

I am growing concerned that I can't reach my aunt in Tennessee. Alma is 82-years old, living in a lush independent living center but I have noticed that her recall for words or names has depleted in recent years. We had not spoken since the death of my dad's sister, I am concerned that maybe she is ill or in the hospital. I have phoned at different hours the last three days and nothing. No answer.

Alma married my dad's brother when I was a child and I loved that she brought her daughter along in the bargain. We were about the same age. Pam is now retired and thankfully, I had asked Alma for her cell phone number about a year ago. If I don't reach Alma today, I will call Pam. Hopefully, Alma gave me the right number!

No yoga or orchestra rehearsal for me again today. I am going to trim the back little garden outside our bedroom just to move my body. I do have a full set of Pulmonary Function Tests scheduled for a week from Friday and it will be interesting to see what my numbers are after my recent illnesses.

Do you remember Marty? He was the first person I met who had Hypersensitivity Pneumonitis. We clung to each other. We compared notes and medications and I encouraged him to go to a rehab program. We had the disease for about the same amount of time. I just learned he is out of the hospital and doing really well after his transplants. The beautiful Susan from the ILD Support Group and I were talking on the phone this week and we were reviewing all of the members who have had transplants. She realized that only about 40% of them are doing well. The others are struggling with issues. We tried to figure out why. Was it how healthy they were before the final decent into transplants? Was it age related? Was it one lung vs two lungs? We had no answers.

Susan is really struggling. Suddenly, she is on oxygen 24/7. From no need for supplemental oxygen to full time almost overnight. What is even more frustrating for her is the struggle for a proper diagnosis and she is now on immunosuppressant drugs for the first time in her journey. All of this is suddenly a lot to deal with along with retiring from her amazing job, selling her beloved house and moving to a better area for her disease.

It has been a challenging year for the three of us.

Onto another issue I have been thinking about: My Eulogy. Having produced productions all of my adult life, I don't want to leave my final production in someone else's hands. I am beginning to write what I want read at my funeral: The review of my life. It will be full of information and funny and hopefully encouraging to Michael and William. It will take time to tweak it to make it perfect then I will give it to Natalie to read at my services. (Hopefully, she won't lose it! Another copy will be put into a file I have set up for both Michael and William.) After I am gone, I am going to leave a request that it is posted as my final blog along with a photo and my real name. My gift to your, dear reader!

Tuesday, October 8, 2013

Settling

I wish I felt better. There is still a cough every once in a while and I keep having to talk myself into doing anything. That is not normal for me! I feel so lazy.

This downtime has been interesting. I have been reading more than usual, maybe as an escape, and doing a lot of thinking. I have been struggling with a couple of issues and really have settled several things in my body. One issue had to do with the death of a friend who has been invading my dreams recently. After laying out the entire story to Michael, I no longer feel the guilt I have been carrying since her death.

I realized why I was chosen as her best friend for a few years. In the playgroup where we met, there were some very beautiful and very wealthy women whom she rejected as good friends. I was chosen, along with one other mom who was also at the funeral, because Lindsey was more beautiful and far wealthier. It has only been recently that I realized that description fit all of her friends. She liked being the queen. The Mary Tyler Moore to my Rhoda. Michael commented that she was an outrageous flirt. She liked the attention of men. Any man. She began hanging out at upscale bars with her new best friend. She liked telling stories about how men complimented her and wanted to be with her. She was still married at the time.

When she told me a story of male "friend" who died in a car accident after suffering huge health issues, I lost a lot of respect for her. It was the beginning of my leaving our friendship. During his funeral, she and her new best friend used her key to go into his apartment to remove all of her clothes (!) and personal items. I had never heard of him. I was really shocked. Again, she was still married to the lawyer she went to for her first divorce. They later divorced, she remarried her first husband who then left her after her diagnosis of Multiple Sclerosis.

A couple of years ago, she had wanted to reconnect but I knew the relationship was not healthy for me and didn't want to be sucked back into her vortex. It was only after I was away from her that I realized that it had developed into a friendship that was very one sided and I was no longer "needed." I had been replaced. Actually, I had escaped. At her funeral, all the other friends who surrounded her twenty-five years ago were all still in her life, each jockeying into position in competition with each other to be deemed her best friend. No one had grown or changed. It was so odd. I was happy that I was ignored.

Having settled all this in my body, I now am so grateful for our relationship when our children were just babies, she taught me so much and she shared her lovely life with me. I no longer feel the guilt of not allowing her back into my life these past couple of years.

Monday, October 7, 2013

Talking Health

It must be our age. We are not often invited to weddings or baby showers or graduations anymore. We are still not going to a lot of funerals but our conversations with friends and relatives are usually focused on health issues. What is your blood pressure? What is your cholesterol? We compare colonoscopy experiences. We recommend doctors.

We are also hearing bad news. Mark's wife Marianne was diagnosed with ovarian cancer a week ago Friday, had surgery a week ago and was released last Friday. It was major surgery, it will take time to heal and her treatments begin in about six weeks. Mark was in the horrible accident -  http://livingwellwithabaddiagnosis.blogspot.com/2012/08/an-adventure.html - which really changed him. His focus has been to heal and to rebuild his body. He has spent hours a day in a gym, had surgery to get a flat belly and was finally feeling better in control. He still has a lot of health issues as a result of the accident. He phoned Michael to talk about how it is now his time to take care of Marianne as she took care of him. He is home. He is cooking and cleaning and driving her to all the appointments. It is going to be a long road ahead for both of them but they will be facing it together.

The other shocking news came yesterday. Michael's friend Ricky - who "rescued" Mark and Marianne with Michael - had a colonoscopy last Wednesday. Everything was fine. He ate afterwards and vomited. After he recovered, he ate again and vomited again. There was also some pain. Lots of pain. He finally went to Emergency, had an ultrasounds which uncovered gall stones. On Friday, his gall bladder was removed and he was home on Sunday.

Then there is Don. He went off for a three-week vacation with a nice case of Shingles. They had subsided but while on vacation, the pain increased. There is nothing like Shingle pain. He was in Switzerland and Greece and had to seek medical treatment because he was in such pain with just the sun in his eyes and the wind against his head. Pain killers barely touched it. He is now home and still in pain.

So, we talk a lot about health issues, we talk about medications and treatments, we talk about vitamins and exercise but it our souls, we pray that everyone recovers and everyone has a long life in front of them. Fingers crossed!

Sunday, October 6, 2013

Too Much Sun



I worked in the gardens for three hours yesterday. Besides picking up the debris from the massive winds, I cut the grass and trimmed the huge Burmese Trumpet Vine. I took the garden back from the destructive forces of nature. 

We are fortunate to live in the only area of the country with a Mediterranean-type climate. It doesn't get too hot. It doesn't get too cold. It is perfect for my lungs as heat really reduces the function. When it is warmer than normal, it usually lasts three days before the fog arrives to cool us all down.

It is hot here on the coast right now. It is 85 degrees hot. I am miserable. Houses in our entire region do not have air conditioning. No need. Once or twice a year we have a few days of hot weather but when in the middle of it, I dream of cool air. It was difficult to sleep last night. We both tossed and turned. 

And since we live so close to the ocean, we experience a massive influx of tourists. It is impossible to get into town over the pass in under 90-minutes for a 10-minute drive. Traffic on Highway 1 heading into town is stopped. Thousands arrive, and then later in the day, thousands leave. 

Michael needs to drive over the pass this morning. Easy. It is the coming home that will be a challenge. I am planning to run into town for groceries as soon as he leaves then hunker down the rest of the day. My plan is to read a bit on the swing, water and rest. It is supposed to be hotter today.

Fog is forecasted for Tuesday.

Saturday, October 5, 2013

Lousy

I am back on antibiotics. Yesterday, I began coughing due to the aspiration on Wednesday. An infection was brewing again. I love the email system with my medical university system. If I need to contact any of my doctors, I put the mouse on a pull down, and they are all listed. If I need to reorder a prescription, a list of all my medications appears and I just click on which one I need, then that request is sent to the appropriate doctor. If I need to see my upcoming appointments, they are listed.

So yesterday, I sent an email to Dr. K to let her know how I screwed up buy drinking water too fast. Water into the lungs. Coughing. She replied within minutes that she ordered a round of Doxycycline for me.

I did very little yesterday. It was windy and my plans to work outside didn't happen. The gardens now are a mess and the wind is still blowing! I HAVE to cut the grass today. I will try to pick the mess up but I have a feeling it will continue to blow and leave more of a mess! Ah, the life of a gardener.

Halloween has happened in our house. The large pumpkins are in the flower boxes in the front and the table in the family room is now decorated with a fall/pumpkin tablecloth with candlesticks that look like Indian corn, a large fake pumpkin and a few scary candles. I love this time of year. The change of seasons.

William leaves tomorrow for the next month of tours. Sadly, he also has been stricken with this virus and is not recovered yet. He saw a doctor on Wednesday and there was just not a lot they could do. It is going to be hard to work while feeling lousy.

Friday, October 4, 2013

Aspiration and Jubilation

Mom is recovering but is not out of the woods yet. Another shot in the butt and another round of antibiotics will hold her until Saturday when she is scheduled for another shot. On Monday, we are going to the clinic at her university hospital for additional treatments. I picked up groceries and medications for her and we shared a lunch together before I headed home.

Earlier this week, I worked in the garden and needed to rehydrate. Sitting in my chair, looking at my laptop, I took a good, long, swig from my water bottle and suddenly, I could feel it going into my lungs. The coughing began. I leaned over to allow the water to hit the floor and coughed hard trying to get the rest out of my lungs. The coughing continued to where I was short of breath. Suddenly, the phone rang. It was Michael. I couldn't talk. After a few minutes trying to recover, I got up and grabbed my oxygen. It took time to get my breath back. And I was still coughing.

I began another round of antibiotics that day. Having aspirated before, I always get bronchitis after such  an event and I REALLY don't need another hit to my lungs, just as I am recovering.

As I was spewing water, it hit my laptop, which I realized after my breathing was back under control. Quickly, I wiped it down but...it didn't look good. I waited then tried to get online - it kept searching either eeeeeeeeee or yyyyyyyyy and the space bar wouldn't work. With computer wipes, I cleaned the keys and the screen and let it sit opened for a bit. Still a problem. I restarted it. A bit better. I made an appointment on Saturday for help with a Genius. I closed the computer and let it sit.

When Michael got home, I was showing him the problems when suddenly, the space bar worked, I could search the web, I could reply to emails, it appeared fine! I awoke the next morning with hope and yes, I cancelled the Genius appointment yesterday. It is fine. It has recovered. I am so very grateful and dancing with joy!

Thursday, October 3, 2013

From the Garden Back Into Life

I am sore and stiff this morning. Yesterday, I decided to challenge myself by weeding and trimming the side yard between Ron and us. It was an overwhelming task as it needed a lot of tending because of a tree. It was too big and we cut it down about 6 months ago. Since then, little pieces of the tree are sprouting along the roots far into the garden. I am finding them everywhere. Hundreds of sprouts. We need to get rid of the stump for it all to stop.

Much to my delight, Ron had trimming two bushes for me on the weekend. Had he not done that, there was no way I would have been able to get as much done yesterday. It was the nicest thing anyone has done for me in a long time.

So, I turned on some music and went to work. Three hours later, the garden waste container was filled, I was soaked with sweat and sporting two bandages. While crawling under a bush and reaching far into it, my arm hit something sharp and removed some skin in two places. It is ugly.

This morning, I feel every muscle from my hands and shoulders down to my butt and thighs. But,  I have accomplished something: a nice garden but also the knowledge that I am now strong enough to get back to working out.

Mom is better, she says, but I am skeptical. We are seeing the Immediate Care doctor again this morning and, if not better, she may have to go into the hospital.

Wednesday, October 2, 2013

More Pneumonia

All my plans went up in smoke yesterday. Around 8AM, I phoned mom to ask how she was doing. She felt and sounded horrible, so horrible, in fact, that she was not strong enough to drive to her university hospital. She would not allow me to drive her as she was sure she was contagious. We planned to meet at an Immediate Care place near her but she wanted to wait until it was probably not as crowded - 11:00. That gave me time to run down to buy Michael's two bottles of Alchemist bourbon before arriving at our meeting place. It was empty when I arrived a bit early!

While waiting for her, two more people arrived. Finally, she was there. She looked fantastic (hair, makeup and beautifully dressed) but very thin and weak. I was grateful that I had brought my oxygen and a mask as I was sure she had pneumonia. The cough was familiar to my ear. I do not want to get it again.

We waited a bit, got caught up on a lot of news and finally went in to see the doctor. She was marvelous, personally knows mom's primary doctor, asked questions, put on a wearing a mask when she saw mine, listened to her lungs and pronounced that yes, mom did have pneumonia.

They gave her a shot in the butt (I think it was a steroid as her breathing became so much better) and prescriptions for antibiotics and an inhaler. They want to see her again on Thursday.

She followed me back towards her home then I went to Walgreens to pick up her prescriptions and Five Guys and Fries to entice her with a hot dog and a diet coke. She said it tasted marvelous! We ate together on her front patio, lots of people walked by and chatted and we enjoying sitting outside in the beautiful weather. Finally around 3:30, I headed home.

I did text Lee and Chip about mom and Chip wondered if we needed to hire a nurse. I love my brother! As mom is still functioning, I don't think she needs it yet. She was talking about going to the grocery store today until I reminded her that she was still contagious until Friday, according to the doctor. I told her to make a list of what she needed and I would buy it all on Thursday.

It was a big day for me. I was exhausted!

Today, I was going to yoga but have decided against it. I need to run into town then I am going to weed and trim the side yard near Ron and Susan. Oh, and cook dinner. Nothing else.

Tuesday, October 1, 2013

Testing the Waters

I decided to test the waters by trying a modified workout at the other rehab to see if I am ready to return to my pulmonary rehab classes. Yesterday, I was touched that so many people were happy to see me and said they had been worried that something was wrong since I had not been there. When I told them the drama of the past 6 weeks, they were so happy that I was back.

Well, almost.

The workout on the treadmill felt fantastic but I only went 3.2 MPH instead of my normal 3.4 MPH. I pulled way back on the bike and the weights as well but I was sweating. A lot.

I don't think I am ready to return to the rehab class. I need another week.

We have been dealing with some car issues. The 840 BMW was having battery problems, my Audi has been having oil issues and Michael's commute car's oil plug was fixed and new brake pads were repaired yesterday so we had to go back over the pass last night to shuttle it home. I realized that we are rarely out at nighttime anymore. It was fun to watch the sunset and trees silhouetted against the darkening sky and the lights twinkling from across the Bay.

Michael works near the distributor of the new bourbon he discovered on the weekend. It reminded him of his favorite Pappy Van Winkle and he wanted to know more about it, so he paid them a visit yesterday. It is called Alchemist and he was told that it was made from "found barrels" and is in very limited supply. When it is gone, it is gone. Guess what I am doing today? Going back to the fancy liquor store over the pass to buy two more bottles. He said he is going to hoard it and take little sips on special occasions.

William is feeling better but is in the middle of huge rain storms in Seattle. Massive rains, even by the Emerald City's standards.

Michael coughed once this morning. He is truly on the mend.

My mom is better but still coughing. We plan to see each other on Thursday.

I am so much better but this last bout really took a lot out of me. In order to do anything, from getting dressed to picking up the house to...anything, I have to force myself. Push myself. The stamina is not back and it will take some time. The only answer is to rebuild in rehab everyday. Back to my schedule. Back to my life. My next toe in the water will be tomorrow as I am going to the yoga hell class. It should be interesting.