Living Well with a Bad Diagnosis - Lung Disease

Saturday, February 28, 2015

Qualifying for Real Social Security

In November, I will be turning 62-years old. Rather remarkable since I never expected to live this long when I received my bad diagnosis. Interstitial lung diseases hit during the prime earning years, as mine did when I was not even 50-years old. I applied for Social Security Disability in December of 2005 and was declared disabled beginning August of 2005 but it took until May of 2006 to get that information. Along with the approval, I also qualified for Medicare. After two years of being declared disabled, I would be able to received Medicare.

My original blog about this process is HERE

Medicare. My insurance premiums dropped from $1,000 per month to $90.00 but I still needed to buy Gap Coverage. I was paralyzed with too much information to choose a plan. I talked about it constantly during rehab until finally one of the women said, "Please just shut up and phone AARP!" I did, spoke with a fantastic gentleman who led me through it all and suddenly, my premium costs for medical and prescriptions were around $350.00 a month. We could afford to stay in our home. Having Medicare saved us financially.

Other information that I learned: No insurance company could turn me down for gap insurance as I was  under 57-years old. Barely. By months. If I had been declared disabled less than 6-months later, I would not have been able to buy any gap coverage. The gods were with me.

So, why is turning 62-years old this year a milestone? I will be applying for Social Security. Real Social Security. Because I had worked most of our married life, I will be receiving my earned retirement benefits. How did I find this out? Social Security sent me a letter telling me to apply. It was implied that it would be foolish to wait until I was 65-years old as I was not expected to live very long.

In August, I will have a meeting with Social Security to fill out the paperwork and will receive more money per month than what I am now receiving through SSI Disability.

Friday, February 27, 2015

Webinar Information on IPF

Here is information regarding an upcoming Webinar for patients and caregivers diagnosed with IPF:


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The Coalition for Pulmonary Fibrosis (CPF) is pleased to invite you to join a free webcast event on Thursday, March 5th at 2 p.m. Eastern entitled:  "From Hopeless to Hopeful – Recent Advances in Understanding , Diagnosis, and Management of IPF".  
The event is being hosted by the American Thoracic Society and the Coalition for Pulmonary Fibrosis.  Naftali Kaminski, MD, from Yale will be the lead presenter along with other PF experts from Yale and Teresa Barnes, VP of the CPF.
This important webcast is part of "Pulmonary Fibrosis Week at the ATS."
Dr. Kaminski is chief of pulmonary, critical care and sleep medicine in the Department of Medicine at the Yale School of Medicine and is also chair of the ATS Assembly on Respiratory Cell & Molecular Biology as well as a member of the ATS board of directors. Teresa Barnes, VP of the Coalition for Pulmonary Fibrosis, is the immediate past chair of the American Thoracic Society's Public Advisory Roundtable (ATS PAR), a past member of the ATS board of directors and the ATS board of trustees and is a member of the ATS Research Advocacy Committee.
Join us for this exciting webinar on March 5th, 2015 at 2:00 PM EST.
After registering, you will receive a confirmation email containing information about joining the webinar.
 
Coalition for Pulmonary Fibrosis
10866 W. Washington Blvd. #343
Culver City, CA 90232
(888) 222-8541
info@coalitionforpf.org

Thursday, February 26, 2015

New Focus for Blog

During mom's appointment on Tuesday, she mentioned this blog to her doctor. We had a rather interesting discussion about why some of us fight a bad diagnosis while others just fold and die. What is it inside that makes us fight? The doctor asked if she could read the blog and pass it along to patients. I was touched. I also told her to begin at the beginning.

After thinking about the past few years, I realized that I am rather stable and maybe even a bit dull. Stale. I am going to try to blog about the disease and how we continue to live our lives with adjustments for the disease. It does not run us. I am going to go back and bring the better older blog postings current.

Now hold onto your hats, after I re-read everything, I may reveal myself. Photos and everything. Being anonymous has allowed me to be totally honest without worrying what my friends or family thought. But, it may be time to allow them to understand all that Michael and I have gone through, quietly together.

The early days when I was really given no hope, I so wish I could have seen a snapshot of myself ten years later. Still alive. Still active. If I can offer hope to someone newly diagnosed with a fatal disease, that is the goal of the blog.

Wednesday, February 25, 2015

Bunnies and Recipes for the Week

I found some cute fabric to make the Easter tablecloth. It involved bunnies and light pastel colors. Perfect. Today really begins the countdown for Anna and Doug's visit at the end of next month beginning with making the tablecloth. The sheets on their bed - and ours - will be washed and ironed after I go for an hour walk along the beach early this morning. I found a cool breakfast recipe to be cooked before picking up the house for the housekeepers due tomorrow.

Over fifteen years ago, I bought a fantastic necklace at Neiman Marcus (very on sale) and forgot all about it until recently. Mom and I cleaned it but, when taking it out of the box yesterday, it had broken. Tomorrow, I am going to drop it off to be repaired as I want to wear it while company is visiting plus I will buy some small lavender plants for the front yard after rehab class tomorrow. Planting here, cleaning there. The goal is to do something everyday in anticipation of their visit so I will not wear myself out before they even arrive!

Yesterday, my 83-year old of rehab friend Dick phoned. He sounded horrible. Not only does he have a UTI but it has also infected his prostate. One sick puppy. He has been sick since November and just can't seem to fully recover. Mom's doctor appointment went well and we had a late lunch at P.F. Chang at 1:30! We were starving!

This week, I am cooking all new recipes for those of us on long-term prednisone therapy. We just do not process sugars properly and must stick to a diet of protein and non-starchy vegetables or we gain weight. Lots of weight.

Breakfast/Lunch:
Sausage and Eggs to Go: HERE
Grilled Cheeseburger Wraps: HERE  Make sure to only use the small La Tortilla Low Carb tortillas

Dinner:
Pork with Paprika, Mushrooms and Sour Cream: HERE
Parmesan-Crusted Chicken with Bok Choy with Shiitake Mushrooms: HERE and HERE
General Tso's Meatballs: HERE

On Friday, I am cooking dinner to bring to British Don in the city. It will feature Roasted Chicken pieces (500 degrees for 30 minutes) with Japanese Eggplant and Shiitake Mushrooms: HERE. There will also be an appetizer of an Artichoke Lemon Dip on Wasa Rye Crisp Crackers: HERE

Tuesday, February 24, 2015

Back into the World Today

Back to mom's today. She has an appointment with her endocrinologist regarding her thyroid issues. She has suddenly developed Graves disease after decades of having low thyroid. Beforehand, we are going to Joanne's Fabrics to choose material so I can sew a small Easter tablecloth for the table in the family room. Since Anna and Doug are coming for a visit a week before Easter, the house will still have some Easter things scattered about.

Through the years, I have collected small things to celebrate the holidays but I just had two little wooden rabbit figures for Easter. Period. That was it. So yesterday, we went to Michael's Crafts and found a new wreath and a couple of things for the table in the family room. The only thing missing is a tablecloth, which will be my project for tomorrow.

I also went crazy buying silk flowers for the front window boxes, which face north and get exactly zero sunshine. Bright azalea-like flowers in bright and light pink look great with some white flowers and sprigs of lavender. I am happy.

This coming week, I will begin the deep cleaning then build up to the last minute wipe-down of the kitchen cabinets as their arrival time gets closer and closer. Lists will be made!

I hauled a lot of groceries into the house yesterday, climbing up and down a lot of stairs at mom's, did a lot of shopping but felt that my breathing was the best it has been in weeks. I am still taking 20 mgs of prednisone, sleeping with 3 liters at night and will continue this for another week. We will see if I am able to reduce it back to my standard dose of 15 mgs. I hope. Fingers crossed!

Monday, February 23, 2015

Recap

It was a good weekend. The gardens were finished on Saturday and even that strip of land between Ron and us was weeded, which took a couple of hours. The next morning, my calves felt it! In the meantime, Michael had the Porsche ripped apart in the garage trying to change the water pump. He is a body and paint man. He is not a mechanic. He does not like getting his hands dirty with oil or grease. It took almost the entire weekend, but the Porsche is now finished. But, he spotted a bit of a leak from a small plastic piece with easy access. That piece will be replaced soon!

Chores around the house were done and I feel fresh going into the week. Mom and I are shopping today. One of the guys in the shop had a new baby, so we will be buying a little something and dropping it off this morning plus mom needs a new frame for a picture. I am going to work out at the other rehab, swing by the butcher's then meet her for our day together. She will share how she did at the poker game with the guys on Saturday evening and who she saw at church on Sunday and how cute all the kids looked. She likes to go to the kid's Mass.

I am sleeping so well that I have continued to use 3 liters of oxygen at night. It really has made a difference. We fell asleep watching the Academy Awards last night.

Quiet weekend. We mostly stayed home, ate lightly, went to bed early and continued to recover from the horrible flu.

Sunday, February 22, 2015

To My Friend Dianne

I never met her in person.

Many years ago, I re-joined the little local orchestra and a friend had been hired to play as well. David and I had played string bass in the same section together for many years in the larger, very respected symphony orchestra. After hearing about my lung struggles and my march towards lung transplants, he gave me Dianne's name. She received her transplants years earlier and he thought she may be able to offer the answers to my many questions.

We met on Facebook, as she lived in the Chicago area.

Dianne was two years younger than I, had a very unusual lung disease and, if I remember correctly, was transplanted over fourteen years ago. When I was sent to the transplant clinic a few years ago, she was in daily contact. In 2013, when I was in the hospital and they thought this was the downturn towards transplants, she was there to offer encouragement and support. When I worried that the stopwatch started at transplant time and one only had five years left, she would remind me that it was not so.

She had some non-lung problems last year, spent time in the hospital but was happy to be home gaining strength and being around family. Last week, she was back in the hospital with an infection. Soon, she was on a ventilator and fighting for her life.

Dianne died last night after a valiant fight to live. She was ADORED by her children and grandchildren. She was a positive light in my life and I will deeply miss her.

Saturday, February 21, 2015

Bad with the Good

We got that news that Michael's aunt Jeannette, who we visited during our road trip last May, had just been diagnosed with cancer yesterday. The doctor said that it was curable, she will begin chemo and we hope to have her on this earth for many more years. She is one of the kindness humans I have ever met. We so hope that she gets through this and continues on her journey.

Years ago, we had Dave overhaul our back and side yards. He worked for months, created all the hard landscaping and taught me a thing or two about plants. We also just received the news that he was just diagnosed with fourth stage COPD. He is still rather young and is struggling to deal with the diagnosis. I am encouraging him to sign up for pulmonary rehab classes to not only gain stamina but for the education and social support.

I am also waiting to read the latest updates about Diane in Illinois. She had lung transplants over a decade ago but is struggling with a major infection. ICU. On a ventilator. According to her children, she is in the fight for her life.

One of the workers who has to deal with Michael at work, had his second son last week. Seven pounds. Michael asked if I would buy a little something for the baby and their 4-year old. Then I had a thought. Mom and I will buy everything on Monday but we will swing by a wonderful candy store to include a box - mom to mom.  She must have her hands full and maybe a bit of chocolate in the afternoon will help.

I am feeling better. Rehab has been easier each day. I am slowing improving. Today, I am going to do a bit of gardening before weeding the spit of land between Ron and us. It is in desperate need of attention. That is the only real plan for today. Michael, on the other hand, is going to replace the water pump in the Porsche. My job will be to stay out of his way!

Friday, February 20, 2015

Seminar on Pulmonary Fibrosis

These events are really wonderful, especially if you know someone who has been recently diagnosed with an interstitial lung disease. Well worth attending.


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The Coalition for Pulmonary Fibrosis has been asked by the Pulmonary Fibrosis (PF) experts at Stanford University Medical Center, UC San Francisco Medical Center and UC Davis Medical Center to share important information with you regarding a seminar on March 7th, 2015 on PF that is for patients, caregivers and families.  Please see details below (or click here to view the brochure including location information, parking and the agenda and speakers).  Please RSVP directly to the contact provided at Stanford below - deadline for registration is March 3rd, so hurry!
What?  
An educational event featuring leading experts in lung disease who will address topics including diagnosis of PF, management issues, current research, lung transplantation, pulmonary rehabilitation, oxygen therapy, and available resources for patients and families.
When?
Saturday, March 7, 2015,
Registration begins at 8:30 AM; program from 9:30 AM - 3:15 PM
Where?
Frances C. Arrillaga Alumni Center
326 Galvez Street, at Stanford University
Click here for parking information and full meeting details including the agenda.
RSVP:
RSVP by March 3rd (click here to view the brochure) -- $25 per person including parking.  Participants will be provided a light breakfast, lunch and educational materials. Limited space available.  RSVP to (650) 725-8083 or via email:ssjpulm@stanford.edu; payment by check only - check made out to: Stanford University-ILD Seminar
Mail your check to:
Benita Kaeding, Stanford ILD Program, 300 Pasteur Drive, Grant Building, Room S025, Stanford, CA 94305-5103
** Please also indicate 1) special needs  2) need for oxygen refills - indicate type of system
(oxygen will be provided free of charge during the seminar)
***Special arrangements may be available if you are not able to afford the registation fee (mention when you call or email Stanford to RSVP)
 
 
 
Coalition for Pulmonary Fibrosis
10866 W. Washington Blvd. #343
Culver City, CA 90232
(888) 222-8541
info@coalitionforpf.org
 

Thursday, February 19, 2015

Good Downs and Ups

Back to rehab today! We will see if I can add a bit of time to each apparatus. Yesterday, I had an easy ride into the city for a weigh-in and a meeting with the nutritionist. The good part of being sick is that I lost three pounds! He was rather shocked that I lost any weight as most people immediately add a few pounds once a large dosage of prednisone enters the body. Water weight.

Even the traffic down to Michael's work after the appointment was not horrible! We went together to meet with Kaiser to talk about the new announcement of a pending bill that just didn't make sense. The woman there was fantastic, took copies and told us that we would not be paying for it. Nice. We celebrated with a rare weekday lunch together at In-N-Out burger (protein style for me!) and a nice chat.

There was a string rehearsal last night, Gerry and I had fun together being naughty at the back of the cellos. It was a bit boring so we sort of whispered a lot...and giggled.

Today, I need to drop the tax data off before the rehab class. Early this morning, I will be in the kitchen. My next couple of lunches of portobello mushroom pizzas will be made, deviled eggs to bring to British Don tomorrow evening need to sit overnight and dinner is going to be steak tacos. I'll make the tacos when I get back home from rehab.

Wednesday, February 18, 2015

First Rehab Class

Sometimes, opening the mail is a challenge. There is a problem. Yesterday, it was a rather big one. Kaiser has informed us that Stanford issued a large bill to them regarding Michael surgery. Surgery? Michael didn't have surgery. We have thirty days to fight it or we will be paying the bill. I hate this stuff as we are stuck in the middle. Clearly, there is a problem at the Stanford level. So, after waiting on the phone to talk with someone for twenty minutes last evening, it became clear that we are going to have to deal with this in person. After I drive deep into the city for a nutritionist appointment this morning, I will scream down the Peninsula to Michael's work and we will go to Kaiser together with all of our documents to try to get it straightened out. Apparently, they won't talk to just me.

Rehab class went well yesterday until I hopped on the recumbent bike. I really felt like I was not getting enough oxygen, asked them to check and my saturation rate on 2 liters of oxygen was 97%. Fine. They said that the bike required muscles that I probably had not been using at all while I was sick. I really was short of breath and sweating. They also had me reduce my entire workout by half to begin to build myself back up.

Sherman looked great but was complaining about not breathing well. Then, Dick arrived to drop off some goodies but not to workout. He looked absolutely horrible. He was gray, now requires oxygen 24/7, was on a walker and had no light in his eyes. I really worry about him.

After the class, I ran to the butcher and Trader Joe's and made a fantastic dinner of roasted chicken and spinach with a bit of pepper jack cheese to hold it together. By 8:00, I was really ready for bed.

Tuesday, February 17, 2015

Back to Rehab

I was ready for my walk along the ocean early yesterday morning, turned the corner and...fog. Lots of fog. Back home, I changed into a heavier jacket then hit the trail. It was amazing by how dense it was along the cliffs and I could not even see the water at one point. But, the walk itself went better than I had anticipated. After really pushing myself, I was expecting to feel "spent" by the time I arrived back home but I actually felt energized. I coughed just twice, which is also a good sign that I am recovered from the flu.

Valentine's Day decorations and linens were washed, ironed and put away in a newly straightened closet, Michel's Shrimp Deviled Eggs for breakfast were made along with some bacon that I baked in the oven. I had a long telephone conversation with Anna, we reconfirmed their upcoming visit in March and got caught up on all the family news.

William is on tour in Japan and they had a large earthquake yesterday. I messaged him, asked if he felt it and he replied that they were in a new building so they didn't even feel it. My heart did take a few extra beats when the news flashed on the TV.

Today is going to be wild. I am going to drop in on mom for a quick visit before pulmonary rehab class, then a drive up to the butcher and Trader Joe's afterwards. Dinner tonight will be roasted chicken and spinach. I am also planning the dinner with British Don on Friday evening. Thinking about making deviled eggs for him, too!

A friend in Boston sent photos of her house with the snow piled up shoulder-high, another friend is dealing with cold weather in England and Michael's sister Debbie is suffering in Knoxville, TN. She can't leave their apartment as the ice storm is so bad and the driveway is so steep, that they would never be able to get back home. They still have power but so much of the city does not. It is going to be in the mid 60s here today. Light jacket weather. No snow. No ice. I am feeling just a bit guilty about enjoying it. My very best to everyone dealing with winter, or as they say about Boston, an "historic" winter.

Monday, February 16, 2015

Enjoying the Holiday Weekend

The side door into the garage is gorgeous! It has a large frosted double-paned window, it is solid fiberglass, fantastic hardware and would be difficult for anyone to kick it in. It was so kind of Wayne to tear out the old one and installed it yesterday morning. As executor of his mom's estate, he is dealing with some messy financial issues, which makes it difficult to focus on grieving. He really misses his mom.

After lunch and picking up the garage, we sat out on the back patio then watch the final holes of the golf classic from Carmel. It was just summer beautiful. Late in the afternoon, I watered the pots and the back garden and then washed the windows. After a very simple shrimp salad dinner, we were in bed by 8PM.

The cooler air is going to return this afternoon so I am going to take a long walk up to the harbor this morning. Since it is a holiday for most people, traffic is probably going to be a mess so I will not be going over the pass to visit with mom. Michael has to go into work. I need to cook a few things for Michael's breakfasts for the week, do a bit of laundry, iron and I am eyeing the front patch of earth that needs a lot of weeding.

I had a sore throat last evening so I popped an Aprodine, which did not allow me to sleep well. It was a rough night so I think I may end up sleeping a bit today. Tomorrow is my return to pulmonary rehab class. It will be fun to see everyone again.

Enjoy the holiday!

Sunday, February 15, 2015

Valentine Day Surprise

The 1958 Morgan was towed away with little fanfare yesterday. The garage is mine again! Michael followed it over the pass, delivered it then drove home, or tried to drive home. The traffic at noon was back onto a freeway, miles from the turnoff. He drove the long way home through the redwoods and down to the ocean and arrived home by 1:30. Friends later taking the 45-minute drive up the coast from Santa Cruz took 2.5 hours. It was crazy. I never left the house.

The gardens are pristine. In six hours, I was able to do the entire yard except to weed a patch between Ron and us. Today, I will do some watering then wash the windows. But, after working in the gardens, I was a big ball of sweat and tired. The phone rang. It was Thomas and Julie from Michael's work who asked if they could drop in. Quickly, into the shower I went. Food? Not much in the house. A quick check in the freezer - Trader Joe's potstickers. Check. We were going to have homemade fish tacos for dinner. Enough for four people? Hopefully.

They arrived, toured the house and the newly cut gardens and settled in. The potstickers were a hit! I had made a Mexican creama with cilantro for the tacos earlier, added some guacamole to the table, seasoned and cooked the Mahi Mahi, stirred some cole slaw and....it was a hit. Thankfully. They had brought some amazing small cookies from Carmel, we made Nespresso and voila! Dessert! Funny how it all came together well.

We both fell into bed at 8:00, moments after they left. It was so interesting how our day had unfolded.

Today, Wayne is due at 8:30 to install the side door to the garage. I'm going to figure out the food for the week and prepare the shopping list for tomorrow. Then, other than watering and washing windows later, I plan to do a bit of nothing. Happy Sunday.

Saturday, February 14, 2015

Valentine's

Happy Valentine's Day. It's funny. We have never celebrated this holiday other than declarations of love, decorations in the house and usually a conversation about when we met. Michael is an extremely generous man, too generous, and any gift given was never during a holiday when it was expected. It was always at unexpected moments. I rather like that. Tonight's romantic dinner? I am making fish tacos for the first time and, oddly, we are both excited about it!

Last night, we wound our way through Friday night city traffic to deliver a hot dinner to British Don right on time. He loved it all. He ate it all! He had lost 30 pounds during his quadruple bypass/rehab, looked 10 years younger and was so very happy to be home. His cat, Fella never left his side. The dinner conversation included such horrible topics of death, funerals, ways of dying, cardiac rehab, being old and medications. Ah, we are of a certain age! We also laughed a lot. We left Don is good spirits and well fed with fresh, heart-friendly food.

It is going to be 70 here on the coast today. All week we have heard on the news, "Take your sweetheart to the beach. It will be a beautiful day." Yikes! Lots of traffic and tourists and drama expected today. Speaking of tourists, mom and I were in the parking lot after buying a pound of Peet's coffee beans when the Ospry helicopters flew over our heads on their way to Stanford from San Francisco. Guess who?

The weather was so mild yesterday that mom and I wanted to walk one of the avenues, mom chose the ones nearest to her and we set out in search of a lunch place. There is a famous place known for its pastrami, was featured on a Food Network show, is always packed by noon and we stumbled upon it just before its opening at 11:30. HERE My mom does not ever eat fat. She has been a bit of an anorexic most of her life and is very careful with food. We split the Reuben Sandwich featuring their lean small chunks of not very salty pastrami on rye bread. It was the perfect Reuben. She ate every single bite. Plus a side of cole slaw. We drove back to her place and she beat me at cards. No, it was a slaughter.

Happy Valentine's Day to everyone. Lots of love.

Friday, February 13, 2015

Weekend

It's Friday. Lots happening this weekend. Tonight, we are bringing British Don a dinner of a fat-free smoked salmon spread with Wasa Rye Crisp crackers for an appetizer, pan-fried Mahi Mahi with Shiitake Mushrooms, tiny asparagus spears with a hint of olive oil and fresh strawberries for dessert. I will also throw in a bag of mini whole wheat bagels so he can also have the salmon spread for breakfast.

Tomorrow is moving day for a project in the garage. It is a 1958 Morgan that has been a two-year project for Michael. The cutest stinkin' car ever. A tow truck is due in the morning to carry it away along with a huge sigh of relief from Michael. While this unfolds, I will be working in the gardens all day, cleaning up from the rains and moving my body for the first time since recovering from the flu.

During the weekend of Michael's seizure in November, our friend Wayne was supposed to install a new side door in the garage. So much has happened since then, including illnesses and death, that it just did not get done. It is going to happen on Sunday. We hope to paint it before Anna and Doug arrive at the end of March. They, too, were supposed to visit on the weekend after Michael's seizure. It will be nice to have them here. I think it has been well over 15 years since Doug has been here.

Today, it is just mom and me. Together. All day. No doctor appointments. No plans. Let's see what trouble we can get into!

Thursday, February 12, 2015

A Big Oops

We rehearsed Schubert's Unfinished Symphony and Bizet's L'arlesienne Suite # 2 last night. As they began to unfold, my hands remembered playing each piece before. I think I have played the Bizet atleast a dozen times. It was a fun, fast rehearsal.

This morning, the housekeepers are due early so I am out of here. Lois, my biologist friend from the other rehab, is a fine musician in her own right. She performs with a huge university chorus and we have, in fact, performed together without even knowing each other! It was back in the day when I was a member of a large, respected orchestra. Small world. Lois flies to Saltzburg each February for the Mozart Festival. It is two weeks of several concerts a day. She takes notes and photos and I love hearing about the high level of performances. In short, we talk music. We are meeting for a few hours this morning then I am going to Trader Joe's to buy the food for British Don's dinner tomorrow night. His journey home yesterday was uneventful, his cat Fella was so happy to have him home and a dear friend delivered homemade soups then filled his refrigerator with healthful foods. In a couple of weeks, Don is going to host a dinner for all of us who took care of him during his bypass drama. I would love to meet this friend and all the others I have grown to know just through emails.

I made a horrible discovery yesterday morning. Before I popped the handful of pills in my mouth, they just didn't look right. There was no prednisone. I remembered that when I filled the pillbox, I had not picked up the 10 mgs tablets of prednisone from the pharmacy yet so I decided to wait. Well, I forgot to fill them. For two days. So, I realized that I did not take any prednisone on Tuesday. None. That could be really bad. If pulled off of prednisone too quickly, it can really hurt the adrenal glands. Not good.

Wednesday, February 11, 2015

Bits

I worked on the taxes until after noon yesterday, had a bit of lunch then did a bunch of other chores. It was another nice day to try to recover and recharge my batteries.

British Don leaves his rehab center today. Home. Five flights of stairs and in a loft. Home. His own bed. He is so looking forward to it but...he says he will miss all the people, conversations and interactions. It will be a bit lonely again. But, I reminded him, he begins cardiac rehab classes and workouts, which will be fun and interesting and will allow him to meet other people dealing with the same issues.

I am sorry for those who are dealing with a lot of snow, but it is going to be in the 70s here today and through the weekend. Shorts. T-shirts. I'll try not to mention it again.

It is maintenance day today! Facial and a hair cut! The first orchestra rehearsal for the next concert in May is tonight. I love getting new music. It is like a new book, even if I have played it before.

My prednisone dosage is down to 25 mgs for a week before dropping to 20 mgs for another week. I still don't have much energy but I hope working in the yards this weekend will kick it into gear.

Tuesday, February 10, 2015

Taxes and a Grammy

I am feeling better but still not 100%. Mom and I spent the day together yesterday, did a Target run and I had a new selection on Mimi's lunch menu: an appetizer of meatballs. Perfect. Protein. I served the leftovers as an appetizer for Michael last evening. Dinner was a fantastic roasted chicken and chopped spinach baked with a bit of pepper jack cheese.

Life around here is quiet and a bit boring but just what I need, at the moment. The exciting stuff is that the group William is currently on tour with won a Grammy. He has another 10 days of concerts before flying back to the US.

Today, I am forcing myself to finish the endless paperwork for the tax preparer. We paid so much in medical costs, dental work and insurance premiums last year that we will not be paying many taxes. With Michael's convulsions in November and some serious dental work earlier in the year, I call him "my little tax deduction." I am staying home, spreading everything out on the dining room table and not doing anything else until it is done. Finish. Completed. It could be a long day!

Monday, February 9, 2015

No Energy

British Don is going home on Wednesday. We had a good giggle and a nice visit with him in the rehab facility yesterday. I offered to bring dinner to him on Friday evening and we were trying to figure out the menu yesterday. Maybe an appetizer of smoked salmon spread on Wasa Rye crackers, lean pork tenderloin medallions with herbs served with a side of small green beans and unsweetened applesauce. He could have the leftover salmon spread on a whole wheat bagel the next morning for breakfast, too.

It was fun to spend the entire day with Michael, we had a nice lunch together and a simple dinner. A huge storm blew through earlier in the day and dropped a couple of inches of glorious rain. Thank you very much.

Mom and I will be spending the day together before my dentist appointment this afternoon. I need to gather data from the other rehab for my taxes, buy a new power cord for the computer as mine is breaking apart before my eyes and anything else mom needs to do today.

I am so surprised that I am not manic on the 30 mgs of prednisone. In fact, I am having to force myself to do things and am sleeping extremely well. Too well. My breathing has improved immensely and the coughing has almost disappeared but, my energy just has not returned yet.

Sunday, February 8, 2015

Disappointing News

Due to our vast rather recent experiences at funerals, Michael said the one for Wayne's mom yesterday was really nice. Well done. Heart-felt. Tender. Sweet. Touching. A true tribute to a woman who raised and adored her five children. They also adored her. He was able to see and talk with people he had not seen for a while.

I stayed home and really rested and did very little. It was a good day off and I slept well last night.

This morning, I got the report on my CT Scan via hospital email. It was rather a surprise that it mentioned a hiatal hernia that was fine. No infection or problem. That explained the tenderness I would sometimes get after the Nissen Fundoplication procedure to fight GERD. The report also commented that I might have pulmonary hypertension. That, my friends, is not so good. I will write to Dr. K. on Monday and ask for the test to confirm it and medication will probably follow. It is like having high blood pressure in the lungs. It is due to having a lung disease over a long period of time. I did not have it last time we checked. I am rather disappointed that I probably have it.

Saturday, February 7, 2015

Funeral

I phoned Wayne yesterday afternoon to tell him that I would not be able to attend his mom's funeral today. It felt like I was letting him down. He was so kind to say that I needed to take care of my health and not to worry. But, I feel awful about not being there.

The funeral will be a three hour car ride up to the Gold Country at 2:00 this afternoon and Michael is driving with our friend Shawn and possibly Randy the cop. He is going for Wayne.

Funerals. An odd subject, I know. When Michael was younger, he would not go to funerals. He didn't see the point. The person was gone. It wasn't until he was older that he realized that funerals are for the support of the surviving family as well as honoring the deceased. It is a milestone. It is the beginning of the first big emotional step forward. It is part of the grieving process.

We are of an age where we are attending a lot of funerals, mainly parents of friends. The hard ones for us are our contemporaries. I understand from friends that the most difficult and emotional are one's own siblings and spouse's funerals. I so hope I never have to attend either of those.

While Michael is gone all day today, I will worry about him on the road but thankfully, the rain has let up for the day. My plans are to prepare the documents for the tax preparer and to set up my files for 2015. That should take many hours while I wait to hear his keys in the door.

Friday, February 6, 2015

Glorious Rain

A quick blog this morning as I am leaving within the hour to drive mom to an early doctor appointment. We will have a great lunch at Nordstrom afterwards then I will have a quick run to the butcher's and Trader Joe's before heading home later this afternoon. A long day out of the house for me!

Michael stayed home with me yesterday. He was on jury duty watch and was instructed to phone in at 11:15 for further instructions. He is the luckiest jury duty person on earth. Each year he gets the letter to appear, each year he is told he is not needed. Been going on for years. So, after he was notified that he was not needed, we went into town, picked up more prednisone along with a bit of lunch before going up to visit British Don. He is doing so well in rehab that they are sending him home on Wednesday. We will visit him for the final time on Sunday.

With the 40 mgs of prednisone on board, I really am not able to sleep. Around midnight, I was suddenly awake, stayed that way for two hours before giving up. After a bit in my chair, I was able to drift off for two more hours. Today will be the first day of stepping down to 30 mgs for a week. Hopefully, sleep will come easier.

And I must mention the rain today. We are in such a serious drought situation that the entire area is so happy to welcome the wet stuff for the next several days. They are giving hour by hour start times on the news. A really big deal for us.

Happy Friday!

Thursday, February 5, 2015

And the Doctor Said

The good news is that this was the flu, not an exacerbation of the lung disease. I knew that as it was so different from my normal downturns. With 40 mgs of prednisone on board for two days, I felt more energy yesterday than I have in weeks.

After the drive into the city, I had the 11AM pulmonary function tests and found that they were down just a bit. Not a massive drop. Not to need-transplant levels. I began to relax, had lunch, read, met with the head of the patient advisory board in the hallway while reading some more, walked across the street and read some more before heading upstairs to the 4PM appointment with Dr. K.

It was a long day.

Dr. K. said my lungs sounded so much better than I had reported to her last Saturday. The prednisone was doing its job. She said that she didn't want to be cavalier and miss something was why she ordered the CT scan and PFTs. She wanted to insure this was not the big downhill towards transplants. I told her that was my worry and she responded, "I know." With that, I mentioned this was our 10-year anniversary in May. She paused, smiled and said, "Wow." I looked her in the eyes and said, "Thank you." What I wanted her to hear was, "Thank you. I would not be alive right now if you had not taken over my case. Thank you for caring about my case. Thank you for being the best doctor I have known."

Wednesday, February 4, 2015

Pirfenidone Information Webcast


Dr. Talmadge King: A very highly regarded doctor with an expertise in pulmonary fibrosis. I have met him, spoken with him and was entranced by a lecture of his years ago. If you have IPF, this would be worth your while.

email header


Patients, caregivers and family members often contact the Coalition for Pulmonary Fibrosis (CPF) with questions about recently FDA approved drugs for Idiopathic Pulmonary Fibrosis (IPF).  We want to inform you about an upcoming webcast about Esbriet (pirfenidone) that will be held on February 24th and will be hosted by renowned PF expert, Dr. Talmadge King.  This webcast will help answer your questions so we encourage you to make your reservation now to attend this online event. Please see full details below.
Sincerely, 
Mishka Michon, CEO
Coalition for Pulmonary Fibrosis

Learn more about Esbriet® (pirfenidone),
the recently FDA-approved therapy for idiopathic pulmonary fibrosis (IPF)

Sign up for an educational webcast
About the program conducted by Genentech:
During the webcast, you will learn the potential benefits and risks of Esbriet, results from Esbriet studies in IPF, and the support available to guide you through treatment. 
The Esbriet program will be hosted by Dr. Talmadge King, Chair of the Department of Medicine at the University of California, San Francisco. Dr. King is an expert in the care of IPF patients.
The webcasts will take place on February 24, 2015. Choose the time that fits your schedule. You will need Internet and phone access to attend the program.
Register for the Esbriet Educational Webcasts on February 24, 2015
11:00 am–12:00 pm EST or 7:00–8:00 pm EST
To register for one of these programs, please click on the link below or enter the following address on your Internet browser: esbrietpatientwebcast.com.

You may also call 855-888-4866 between the hours of 9:00 am and 5:00 pm EST to register.
About Esbriet
Esbriet is a prescription medicine used to treat people with a lung disease called idiopathic pulmonary fibrosis (IPF).
Indication and Select Important Safety Information
What should I tell my doctor before taking Esbriet?
Before you take Esbriet, tell your doctor if you:
  • have liver problems
  • have kidney problems
  • are a smoker
  • have any other medical conditions
  • are pregnant or plan to become pregnant. It is not known if Esbriet will harm your unborn baby
  • are breastfeeding or plan to breastfeed. It is not known if Esbriet passes into your breast milk. You and your doctor should decide if you will take Esbriet or breastfeed.
Tell your doctor about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements.
What should I avoid while taking Esbriet?
  • Avoid sunlight. Esbriet can make your skin sensitive to the sun and the light from sunlamps and tanning beds. You could get a severe sunburn. Use sunscreen (SPF 50) and wear a hat and clothes that cover your skin if you have to be in sunlight. Talk to your doctor if you get sunburn.
  • Avoid smoking. Smoking may affect how well Esbriet works.
What are the possible side effects of Esbriet?
Esbriet may cause serious side effects, including:
  • liver problems. Call your doctor right away if you have unexplained symptoms such as yellowing of your skin or the white part of your eyes (jaundice), dark or brown (tea-colored) urine, pain on the upper right side of your stomach area (abdomen), bleeding or bruising more easily than normal, feeling tired. Your doctor will do blood tests to check how your liver is working during your treatment with Esbriet.
  • sensitivity to sunlight (photosensitivity) and rash. See “What should I avoid while taking Esbriet?”
  • stomach problems. Esbriet may cause stomach problems such as nausea, vomiting, diarrhea, indigestion, heartburn, and stomach pain. Tell your doctor right away if your stomach problems get worse or do not go away. Your doctor may need to change your dose of Esbriet.
The most common side effects of Esbriet include feeling tired, headache, dizziness, and decreased or loss of appetite.

These are not all the possible side effects of Esbriet. For more information, ask your doctor or pharmacist.

Call your doctor for medical advice about side effects. You may report side effects to the FDA at
1-800-FDA-1088 or www.fda.gov/medwatch. You may also report side effects to Genentech at
1-888-486-6411.

Please see the full Prescribing Information, including the Patient Information for Esbriet 
here.
For more information about Esbriet, please visit www.esbriet.com or call 1-888-486-6411.
This information is intended for US residents only. The information provided is not meant to replace your doctor’s advice.
If you have questions about IPF or your healthcare, discuss your concerns with your doctor.
This e-mail is powered by CPF.

© 2015 Genentech USA, Inc. All rights reserved. PRC-3317 01/15
 
 
 
Coalition for Pulmonary Fibrosis
10866 W. Washington Blvd. #343
Culver City, CA 90232
(888) 222-8541
info@coalitionforpf.org
 

Tuesday, February 3, 2015

Ramp Up the Prednisone

After a couple of emails and a few phone calls from different departments, Dr. K. arranged a CT Scan for this morning followed by a full run of pulmonary function tests tomorrow before my appointment to see her. She also told me to wear supplemental oxygen at 2 liters and to kick up my nighttime oxygen to 4 liters. It helped! I rarely coughed and slept well last night.

She also told me to begin a run of 40 mgs of prednisone. Yikes! I tend to go manic and cannot sit still or sleep. Every bit of the house will be spotless, all my projects will be completed, all the sheets will be ironed and I even asked our neighbor Leslie if she needed anything ironed! We had a good laugh. The increase will begin within the hour.

I thought I would also mention a rather strange thing that happened while taking tamiflu. I was warned that there could be some mental issues and it was not until I finished the 10-day run that I realized I had an issue!! About the final three days of the drug, I was worried about everything: Michael driving home from work, William being out of the country just to name a few. I now understand anxiety. I was fully anxious but did not recognize it. I guess you don't know your anxious until it is gone. And thank goodness it is gone!

So, now I have to deal with the manic-ness of prednisone. Tough on Michael. He teases me that his jeans will be ironed, I will suddenly have over-developed muscles and a deeper voice. He calls me Bruce when I am on this much prednisone. Nothing else to do but try to see the humor in it all.

Monday, February 2, 2015

Lots of Driving

We were to go to visit Don at his rehab center around 1PM yesterday. Good plan. There was very little traffic since everyone was elsewhere preparing for their Super Bowl parties. It was a gorgeous day. We decided we would take the Porsche for a spin. We almost made it but Michael noticed steam, yes steam, coming out the back. The water pump was letting loose.

Now, I am convinced that God gets all the men together in heaven and they have a big conference about mechanics, tools and a general how-to-fix-things meeting. Michael has saved us broken down on the side of a road with just spit and duct tape. I swear.

So, there we sat at the side of the road. He noticed a 7-11 a block away and came back with a large bottle of water. He put in as much as the car would take, left the cap a bit loose and the revs on the car as low as possible as we limped home. We were able to really enjoy the world-class vistas along the ocean cliffs and surfer's beach. Somehow, we made it home.

Within minutes, we were heading back to British Don's in mom's old 1997 Mercury Tracer. It was a different kind of ride from the Porsche but it got us there!!! Don looked great, we sat at a table in a nice room and had a great chat. He was really suffering with the three roommates and was fighting to be moved into another room. But, the place was fantastic. There was no smell of food or that horrible smell of disinfectant that usually hits the nostrils in a nursing/rehab center. It was spotless and there was a lot of staff willing to help at all times. What a place.

We were home in time to watch the game. That was fun.

I am expecting to hear from Dr. K. this morning and that will determine whether I am hospitalized or able to stay home and recover. I washed my favorite pajamas, just in case.

Sunday, February 1, 2015

Downhill

Well, I THOUGHT I had turned a corner but it was a bad one! Natalie listened to my lungs yesterday and said they were the worst she had ever heard them. My entire lower right lobe had no air sounds. In other words, it was full of fluid, i.e. pneumonia. And the left lung had other issues.

Great.

So, I rested all day, took a shower and played the concert last night. In fact, Gerry and I were laughing at the end that it was best we had ever played the Beethoven! I did play with 2 liters of oxygen for support. All night, I just could not sleep.

Today, Dr. K. will get an email, which she will read on Monday morning. My hope? I think there are three options:
1. Prescribe a strong antibiotic
2. Have me drive up to the city for an xray
3. Yell at me and tell me to get to the ER ASAP

My guess? I am hoping #1.

We will see. Oh, and tomorrow I need to drive my mom over the pass and back for a dentist appointment at 3:00. We were going to have dinner together but I just don't have the energy so I will sit in traffic after I drop her off at her house.

But, plans may change depending on Dr. K.

Life is interesting.