Living Well with a Bad Diagnosis - Lung Disease

Sunday, August 31, 2014

Lots of Work

Wood installed in closet floors? Done. Everything sorted from the closets, recycled or thrown out or being donated? Done. The top arbor wood removed to be replaced after the arbor is painted? Done. Painter coming? Tomorrow at 9AM for an estimate. Last things on the list? Re-attached some carpet to the walls and having the carpets cleaned, then all my chores will be completed.

I was totally amazed that I was able to lift a small bookcase back into a closet along side a two-drawer filing cabinet, which also had to be lifted into place as to avoid scratching the new floors. Alone, I was able to put all four rooms back into shape, vacuum the carpets and stand on my feet for over five hours. All those years of lifting weights paid off. I did have to take something OTC for pain in the evening but this morning, nothing. Loose and pain-free.

It feels like a millions buck getting everything done, but I also am feeling like an exhausted puppy. We both fell into bed at 7:30 last night and slept until 5:30 this morning. Michael has to run over the pass to get a new windshield in a car then he will be home. We are going to Rick and Natalie and Melanie's house at 5PM for appetizers (dinner for us) after a day of yard work and ironing. The bedsheets are in the washing machine at the moment.

Our Anniversary is tomorrow. Forty-one years. How did that happen so quickly? I found a box of photo albums that had been stored in William's closet and we had a ball looking through them last night. It's rather funny that as we have aged, my hair got darker, his got grayer and we both got thinner. That is a good thing!

Saturday, August 30, 2014

Half Way Done

Four of the closet floors are installed and the trim will be nailed in this morning. The arbor has lost two of its five supports and large brackets have been added for support. The painter has been called and will arrive to give us an estimate Monday at 9AM. Maybe, just maybe all will my jobs will be completed sometime next week.

After they worked at our house all day, Wayne and his son Ian invited us to their house after dinner to celebrate a friend who is buying his first house. We didn't get home until 9:30! Sleep. I need sleep!!!

The yards will have to wait until the arbor and closets are finished this afternoon or I may even have to wait until tomorrow. The stuff from the five closets needs to go back into the closets. That will take some time as I want to toss a lot of stuff - and donate. I found my fantastic 1980s gray suit - long jacket, padded shoulders - which was a bit tight on me when I was twenty pounds lighter than I am today. It soooo didn't fit and looked hilarious. Time to let it go. We also found William's velvet paisley sports coat that he wore to a prom. Ian tried it on, thought it was cool but it was too large for him.

Wayne's younger son Evan dropped by and promptly locked his keys in his car so we hung out for a bit. We made homemade lemonade, Jill arrived with his extra key, chatted for a bit before dealing with four phone calls. Dinner. Then I cooked dinner. Michael crawled home later than usual, was able to watch the Giants for a few inning before we went to the get together.

The boys are arriving at 9AM, I have to make a quick run to the bank then I think I am going to ask Ian to help me get the bigger pieces back into the closets. Things like my filing cabinet, Michael's stack of metal baskets and a small bookcase. Young muscles and a good back!

Friday, August 29, 2014

Contractor Arrives

My fingers are sooo crossed that I don't get sick. I crawled through yesterday but it got even crazier. After the rehab class, I got home and destroyed the house. All five closets are now empty and the contents are scattered throughout each room. Then, I did the laundry and put together the new lamp for the living room.

About 5:00, Michael phoned. We were going to have to drive back over the pass, grab some dinner, pick up the Porsche with its new tires then buy the flooring materials for the contractor to install in the closets today. It all worked out exactly as planned and we got home around 8:30, past my bedtime. But for the first time in days, I slept well last night. I feel rested this morning but it will take a couple more days to feel caught up and fully recovered.

I am sneezing a lot. Not a good sign.

The really good news: Years ago, I had lost a bag of all the photos of William's first year of life. It was in the garage where I was storing it while putting together a new album and it was gone. I thought Michael had done some cleaning and tossed it out by mistake. While peeking into the tubes from William's closet yesterday, there there were. My heart was immediately filled with joy.

This morning, we will have quick showers then I will wait for Wayne to arrive to begin the project. It also includes changes to the arbor along the width of the house near the swing so it can be painted. This will be the final project on my list of things to do this year.

With lots of 1940s antiques throughout the house, we are now trying to add modern bits. For example, new bright colored pillows in the living room to go with the more modern lamp and huge new beast of a television. I have removed all lace and doilies. The next project is Williams bed. I want to have a more contemporary look in there - colored sheets with bright pillows and a patterned bed sheet. No quilt. No pillow shams. Just stacked pillows in different patterns. We'll see if I can pull this off...

Mom and I are meeting for a chat and lunch then I will be back home and probably in the contractor's way. I promise I will not stand behind them and chat. I promise. I hope.

Thursday, August 28, 2014

Recipes for the Week

Linny's Whopper in a Bowl
I think I need a handler! It happened again last night. I woke up and could not get back to sleep. Tossing and turning, I finally got up, used the bathroom and was heading back to bed when I realized I was not wearing my oxygen. It was there. On the floor. I had crawled into bed last night without actually putting it on. Once it was in place, I easily drifted off to sleep. Duh.

This happening when I was already exhausted from not sleeping well the night before and spending a long day of driving. Mom's luncheon and our visit to my dad's grave was so very nice but I didn't get home until 5PM.

I am tired this morning. Really, really tired. Worried-about-getting-sick tired. The housekeepers are due early this morning so I have to leave, pick up a lamp, buy some fresh Peet's coffee grounds for our mornings before the pulmonary rehab class. I have a feeling I will be napping before Michael gets home this evening. We are going out for a quick dinner tonight. Thankfully.

Tomorrow will be grocery shopping for next week. Recipes are below. Remember, these are recipes for those of us on long-term prednisone therapy. They feature non-starchy vegetables and protein since we do not process sugar very well. Sugar is in milk and yogurt and fruit and eggplant and corn....you get the point. Here are the recipes:

Breakfast and/or Lunch:
Smoked Salmon on a Wasa Rye cracker with low fat cream cheese and red onion

Small cocktail hot dogs served with cabbage

Linny's Whopper in a Bowl - here

Dinner:
Roasted chicken with artichokes

Parmesan Baked Fish - It will be served with a vegetable. here

Popeye's Special - here

Wednesday, August 27, 2014

No Time for Naps

The first day back to my pulmonary rehab class in over a week went well. Better than I had anticipated. After a week of no formal exercise, I thought I would have problems with my saturation rates and stamina. Both were great. No problem. It was wonderful to be welcomed back into the fold!

But, I didn't sleep well last night. I don't know why. It is going to be a problem. Within the hour, I have to meet mom at her home and begin our 100 mile drive to the central valley. Her girlfriend is hosting a small luncheon in celebration of her recent birthday. Before the lunch, we will drive additional 30-minutes north to visit my dad and replace some flowers on his grave.

I should be home around 5PM. Exhausted. Thankfully, dinner is already plated and waiting for us. Thursday will be equally crazy. Wayne is coming early Friday morning to install wood on all the closet floors so all five closets have to be empty and ready. All five closets will be emptied on Thursday night. Yikes!

We will need the downtime on the Labor Day Weekend to recover from the week before our celebrations begin. Our 41st Anniversary is Monday and Michael's birthday is Wednesday. Lots of fun ahead!

Tuesday, August 26, 2014

Roche


Years ago, I met the two founders of the biotech industry. They began Genentech. One was a scientist. The other was a businessman. All of their children attended the school where I got sick. Sadly, the businessman died of cancer and another father at the school became the new CEO. He led them through many successful years until the Swiss pharmaceutical company, Roche, bought Genentech.
When I got some extra money, I bought some Genentech stock just because I knew the founders. It grew, and then I had to turn in the Genentech stock when Roche bought it. I took that money and put it all into Roche stock.
It is with that background that I was thrilled to learn yesterday that the little local company of InterMune had just signed an agreement to be purchased by Roche for a mere $8.3 billion. InterMune is the company who developed Pirfenidone or Esbriet as it is going to be labeled (who thinks up the names of new drugs??). They are banking on the estimated 70,000 to 200,000 Americans who have idiopathic pulmonary fibrosis. No other treatment is currently available for patients with IPF or other any other fibrotic lung diseases other than lung transplants. Pirfenidone is expected to be approved for use in the US in November 2014. 
The Germany company of Boehringer Ingelheim also hopes to have their drug approved called nintedanib. Don’t even try to pronounce it. You will trip on your tongue. That is the special drug I have been watching go through all the trials. Both pirfenidone and nintedanib have shown to slow the decline of lung function in IPF patients. Nintdanib is not a new drug but will be now available to people with IPF after the trials proved it helped slow the decline of lung fibrosis.
Both are expected to hit the market around the same time. All good news for people struggling with IPF. Two choices.

Monday, August 25, 2014

Daily Gift

Time is flying by. So much happens during the day that I am stunned when it is time to start making dinner. Where did the day go? Suddenly, it is bedtime. With these busy days, I am almost in a coma at night as I am sleeping 9-10 hours without moving.

All the furniture moving, installation of the new 52" beast in the living room, yards cut and watered and my lovely walk along the ocean, yesterday just flew by. I was even able to sit on the garden swing and read for an hour. The sun was out but there was a mild cooling breeze. Just about perfect.

So then I was watching ER: Stories Never Told or something like that on TLC when they featured some guy who was very ill. Turned out, he had been exposed to some plant called an Angel's Trumpet, they showed a photo and yes, it is the same plant as ours!

Apparently, every single bit of this plant is very poisonous. The only reason I have not become ill is that I always wear gloves in the garden. The entire plant will be gone by next week. YIKES!

Shuttle service will happen this morning because mom has a dentist appointment in town. I have to run over the pass, grab her then drive back. After her appointment, I want to show her the new TV and the gardens before doing a ton of errands on the other side of the pass. It will be another busy day.

But, I must pause to remember that a week ago I was nervous to have the liver biopsy. So very glad that is behind me. I am so grateful that my days can be full and that I am able to still actively participate in life. Everyday is a gift.  I never forget that and say a small prayer of thanks at the end of each day.

Sunday, August 24, 2014

6.0 Earthquake

Well, that was fun! Michael got up to use the bathroom around 3:10AM, climbed back into bed then the entire house began to roll. EARTHQUAKE! The biggest one we have felt since 1989. We flew out of bed, ran to the hallway and waited it out. The light in the front entrance swayed for a couple of minutes afterwards.

I texted my sister in the Sacramento area, their pool lost a lot of water but no damage. We are about equal distance from the epicenter. All of our local friends were awake and on Facebook. Rather fun to hear from everyone at 3:20AM!

When the news station displayed the "intensity of shaking" map, we stood alone as the only area listed as "weak" surrounded by "moderate" shaking. The pass that I am always having to drive is over a nice little mountain, which protected us from heavier shaking. The bad news? The San Andreas Fault is just on the other side of that mountain. I drive over it almost everyday. If that one lets loose, we are going to be in a world of hurt.

Our love to the Napa Valley and specifically to historic downtown Napa. Such a sweet little area. I hope they recover soon.

In other news: We are waiting for the arrival of DirecTV tech to install the new 52" TV in the living room. Sounds easy? It has been crazy. Friday night, we spent spending a couple of hours putting together the TV table from IKEA (swearing under our breath the entire time), hauled it into the living room, moved another table, grunted while moving the 52" Plasma TV onto the table then having a chat with three of the neighbors. It just happened. It was fun.

Saturday, I did the yards, took a long nap then removed a large love seat from William's room, moved a table into his room, moved the 1920s bar into its new position, changed out another table in the front entrance and just tried to redecorate.

Did I mention that I was not supposed to lift anything over 10 pounds until Monday?

After Mr. DirecTV leaves, I am going to take a gentle walk along the ocean. I can feel the muscle in my thighs getting soft!! Workouts will begin again on Tuesday.

Saturday, August 23, 2014

ILD Free Seminar Information

Here is the information regarding a free seminar on the Johns Hopkins Campus in September. If you have an ILD, you are invited! Information is below:



email header
 
The Coalition for Pulmonary Fibrosis (CPF) is proud to invite you to a free pulmonary fibrosis seminar at Johns Hopkins Bayview Campus in Baltimore, MD on Saturday, September 27th.  This IPF Event is being co-hosted by the CPF, the American Thoracic Society and the Johns Hopkins University School of Medicine.    
We encourage participation by all people impacted by PF or PF related Interstitial Lung Disease (ILD) regardless of where your healthcare is provided. Please invite others who might be interested to join us at this event. If you are planning to attend, please email Dioliver Perez at dperez@thoracic.org and include the number of people who will be with you. Please RSVP by email to Mr. Perez no later than Wednesday, September 24, 2014. Space is limited so please respond early. 
If you are going to the FDA IPF Workshop in Silver Spring, MD, this may be a perfect opportunity (even if you are not from the area) since it's in the region and is the day after the FDA Workshop (the FDA IPF Workshop is Friday, Sept. 26, 2014.  For more information on this important event that encourages patients and family members and caregivers to attend, visit the FDA site at:http://www.fda.gov/ForIndustry/UserFees/PrescriptionDrugUserFee/ucm395774.htm).
Please see the agenda and list of speakers further down in this email.
patients at PF event at Harvard spring 2008
WHERE:  Johns Hopkins Asthma and Allergy Center Auditorium 5501 Hopkins Bayview Circle, Baltimore, MD 21224
WHEN: Sat, September 27th from 9:00 am to 2:00 pm.
WHO: Open and free to all IPF and ILD patients, family members and the general public. Complimentary lunch will be provided. An oxygen refill station will be onsite for those attendees with portable oxygen concentrators. Parking is available in the Mid-Campus Lot directly across the street from the auditorium. 
RSVP:
Please RSVP by EMAIL: Dioliver Perez:  dperez@thoracic.org
Sincerely,
The Coalition for Pulmonary Fibrosis
Agenda
9:00-10:00 am Registration and light breakfast 
10:00-10:15 am Welcome from the ATS - Mr. Courtney L. White Welcome from the CPF - Ms. Teresa Barnes Welcome from Johns Hopkins ILD Program - Sonye Danoff, MD, PhD 
10:15-10:40 am  IPF, ILD, PF: Why All the Letters and What Difference Do They Make? - Cheilonda Johnson, MD, MHS 10:40-11:05 am Clinical Trials in IPF: Big News and More to Come Maureen Horton, MD 
11:05-11:30 am  Lung Transplantation in PF: Who? What? When? And Why? - Pali Shah, MD 
11:30 am-12:00pm Questions for morning speakers 
12:00-1:00 pm Lunch with speakers 
1:00-1:25 pm How Can Patients, Family Members and Caregivers Help Move PF Efforts Forward? - Teresa Barnes 
1:25 -1:50 pm Understanding What Matters to You: Patient Centered Outcomes Research - Sonye Danoff, MD, PhD and John Bridges, PhD
1:50-2:00 pm Wrap up and final questions
Speakers and affiliations:
Sonye Danoff, MD, PhD 
Co-Director, Johns Hopkins ILD/IPF Program 
Associate Professor of Medicine 
Johns Hopkins University School of Medicine 
Maureen Horton, MD 
Co-Director, Johns Hopkins ILD/IPF Program 
Associate Professor of Medicine 
Johns Hopkins University School of Medicine 
Cheilonda Johnson, MD, MHS 
Johns Hopkins ILD/IPF Program Instructor, 
Johns Hopkins University School of Medicine 
Pali Shah, MD 
Associate Medical Director, Lung Transplant 
Program 
Assistant Professor of Medicine 
Johns Hopkins University School of Medicine 
John Bridges, PhD 
Associate Professor 
Health Policy and Management 
Johns Hopkins Bloomberg School of Public 
Health 
Teresa Barnes 
VP, Patient Outreach and Program Support 
Coalition for Pulmonary Fibrosis
 
 
 
Coalition for Pulmonary Fibrosis
10866 W. Washington Blvd. #343
Culver City, CA 90232
(888) 222-8541
info@coalitionforpf.org
 

Friday, August 22, 2014

Biopsy Report

The final report for my liver biopsy is in. To quote the doctor: Liver biopsy showed mild steatosis and mild fibrosis. No cirrhosis and nothing that can impact lung transplant. I would not worry that much.

Huge sigh of relief. A bit of a Fatty Liver and some scaring from the prednisone. No cancer. No cirrhosis. 


I wonder if I had been a person who enjoyed cocktails for years if the results would be the same? I am so grateful that I never drank regularly. Ever. 


Since coming home on Tuesday, I expected to bounce right back. It was rather a surprise that I found myself napping for long periods of time and sleeping for nine to ten hours a night without moving. I clearly needed the downtime but I am feeling it in my waistline. No exercise is killing me! I will begin again at the rehab class on Tuesday (but I may cut the grass on Sunday). The ocean is calling to me so I might try to take a short, slow walk on Saturday.

But for today, I am going to spend the day with mom. 

Thursday, August 21, 2014

One Surprise After Another

A tiny, little hole is all that's left from the biopsy. I can't believe they got all the instruments down that bitty thing. I am feeling fine but I realized that I am not up to snuff yet. Yesterday flew by and today is going to be a full day.

I had the most delicious facial yesterday morning. It took away all the stress and worry. Lovely. I went the entire day without any makeup as I was going nowhere afterwards. Just home. But, around 5:00, the doorbell rang. I looked out. Hmmmm. An older guy. I opened the door.

"I had a meeting at the harbor and I just had to drop by."

It was Ted. We met in 8th grade. He is the best String Bass player I have met. Classical, jazz, doesn't matter. The best. Years ago, he lived across the street from the church where Michael and I met and were playing the Sunday night Mass, long before William was born. He asked if he could play with us as a break from his studies in law school. We played lots of weddings together.

After law school, he went to work for my playgroup friend Lindsey's husband for a few years. Then he quit. He began his love affair and life-long work with NOA - National Oceanic and Atmospheric Administration. It was a perfect fit. He traveled the world. He met his beautiful wife in the embassy in Morocco. We met them in LA just after their son was born. He just turned 18-years old. Oh my. Where has the time gone?

I got Michael on the speaker phone and the three of us had a great conversation. We exchanged emails and cell phone numbers and a promise of a proper visit. He only had about 15-minutes.

All this and me, with no makeup!

My brain was so full of joy and racing while making dinner. Michael came home and we talked about Ted until 6:30 when the phone rang. It was Jill and Wayne. They were just driving by and asked if it was okay to drop in.

I asked if they had eaten dinner yet then served them the second portion of our dinner. It was with pure joy that I watched them gobble it up. Chicken with lots of herbs topped with an onion slice and a fresh tomato slice then fresh bacon cooked over the top. With a side of the organic store bought mac n cheese and fresh cole slaw, they finished every bit. We sat and chatted until 8:30! What a fun evening! What a fantastic day!

But wait (as the commercials say), there's more! Today is going to be almost as good! The electrician is coming at 8:30 to finally replace the lighting unit in the Master Bath. I have been waiting for weeks! Then, I will run into town to pick out the wood to be installed in the closets. Wayne will be doing the work next week! Also next week, he will be removing some posts from the arbor along the side yard then we will call his house painter to paint the entire arbor and parts of the house. So, the last thing on my list is to have the plumber come back with the repair kit to fix the unit he installed months ago.

So the only thing missing is the results of the biopsy. I hope to hear from the liver doctor today. Fingers are crossed that it is only good news.

Tuesday, August 19, 2014

Post Op

I AM HOME!! It was interesting. We arrived early, of course, had the insurance check-in before heading to the radiology unit. We waited. And waited. A nurse finally arrived to take me to a changing area. She was...different. She used my wrong last name, told me I could keep my jewelry on (though had been advised to leave it at home so I was not wearing any), told me that I was not allowed to bring any medications (I was asked to bring my eye drops), told me to leave my shoes on (another nurse came in to give me slippers), when I told her I had a serious lung disease she asked if my doctor was informed that I would be having this procedure and a few other things that did not give me much confidence.

Michael and I were amazed at the room where the procedure was going to happen. Lots of people rushing about. Huge pieces of machinery. An xray was used throughout the procedure to follow the internal equipment down the proper paths. I was AWAKE THE ENTIRE TIME. It took about 20-minute to position me on the table, my neck was exposed and I faced to the left under a protective cover. Thankfully, I asked for oxygen so I did not feel claustrophobic.

A sonogram was used to find the jugular vein, they cleaned the area, shot it full of a numbing agent and then they cut in. Down went lots of equipment - camera, sensor to test pressure of the large veins in the liver, a capsule that opened to cut the liver three times to collect tissue samples. I know because I counted. Three times.

I had no pain except in my right shoulder during the cutting of the liver biopsy. It hurt! I mentioned it just as they finished. The pain was suddenly gone. The whole thing, including setting me up, lasted just an hour. I stayed in a post-op area for a couple of hours before moving into a short stay unit. Other people there had recent heart and brain tests.

The room was a filled with about a dozen people who came and went throughout the day and night. As promised, I was at a far end in the corner. It was perfect. I was not exposed to many people. Marisa, who arranged my corner, came by this morning so I was able to thank her.

The gentleman next to me was turning 90-years old next month and was a retired surgeon. Everyone paid him lots of attention. Apparently, he had a heart issue, was in a bit of pain yesterday but with an adjustment of some of his medications, he was pain-free and delighted. I loved when he phoned his wife this morning: Good morning, Baby. Love that. 90!! He also was headed home later today.

The surgeon came by last night to tell me that the pressure numbers in the liver were NORMAL. A good sign. He told me that the liver looked good and that I should continue doing whatever I am doing. We talked about my exercise and diet program. He was not surprised after talking with me. When I told him I worked out 8 times a week, he said he was surprised it was not more! Said with a nice smile and a twinkle in his eyes!

They did blood counts every four hours to check to see if there was any bleeding from the biopsy sites. None. The hole in my neck never bled and the bandage will be removed tomorrow. I can't wait to see how the size of the wound! Now we are waiting to hear the tissue numbers.

The food. Ah, the food. The first lunch was a chicken breast with three carrots and apples and soup and a roll and rice. So, I had the chicken and carrots and the broth from the soup. Dinner was spaghetti, roasted veggies, a roll, pasta soup. I ate the meat sauce without the pasta and the veggies. Breakfast this morning was oatmeal, yogurt with fruit, strawberries, egg beaters, toast, jam, coffee. I had the egg beaters and saved the oatmeal and strawberries for Michael. He brought a delicious cup of fresh Peet's coffee and I was in heaven.

The nursing staff was wonderful but my favorite was this morning's male nurse from Perth, Australia. Charming. When Michael arrive, he handed Andrew two dozen of the best Italian cookies to share at the nursing station as a thank you for taking such good care of me. His eyes lit up!

After signing all the paperwork, we were in the car heading home by 10:00. Not bad.

I did wonder how I am ever going to stand being confined to a hospital after a lung transplant, especially when I hear that sometimes it is for three months. That would drive me insane. Just after 24 hours, the first sniff of cool fresh air was delightful and we drove home with the windows down. Freezing. Just couldn't get enough. It feels great to be home.

I must cool my jets for a week. They worry about bleeding. So, I am having a nice facial tomorrow. That's it. Nothing else. But, I'm home. All is wonderful.

Monday, August 18, 2014

TransJugular Liver Biopsy This Morning

It is 5:30AM. I did not sleep well last night and finally fell into a fitful slumber. I heard William in the other room, got up to search for him, found him in a dark room without toys. I picked him up, looked around and thought that this was really not good place for a toddler. There were no books or toys or light. I awoke suddenly and almost got out of bed to check on him before I realized he was grown and gone.

It was that kind of thing all night.

The procedure should begin at 8AM. I will write after I get home on Tuesday.

Fingers crossed.

Sunday, August 17, 2014

Gathering Strength

Mom turned 86-years old today. Amazing. I will post photos tomorrow from our celebration dinner at a fancy fish place.

With enough sleep under my belt, I am feeling good and strong going into the week. Later this morning, I am leaving Michael for an hour walk along the ocean. It will be my final exercise before the biopsy tomorrow morning.

My focus today will be to pack, gather things from my list and prepare to leave at 5:45AM tomorrow morning for the liver biopsy. I also will spend time on my walk today to settle my mind. I need to go into this with a positive spirit.

The reason for the biopsy is that, after 10 years of prednisone, my liver is showing signs of fibrosis (cirrhosis). The question is how much? Is it too damaged for me to be eligible for future lung transplants? That is the underlying drama. That is why I am nervous about having this biopsy. It will determine my future.

Saturday, August 16, 2014

More Details - Liver Biopsy

After missing two cell phone calls from Marisa from Radiology yesterday (because mom and I were talking and I just didn't hear it), I phoned her back while my toe nails were drying. I learned a bit more about the transjugular liver biopsy happening on Monday.

I can take all my morning medications before leaving home, which is the majority for the day. That makes me very happy.

They asked if I could bring my own eye drops with me. Yes, thank you.

I asked if I needed to bring ID and insurance cards. Yes. That is not sooo good because I have to trust them to Michael. He loses a lot of stuff.

Then I told her that I was just going to throw something out there but I didn't know what she could do about it. Briefly, I told her of my reduced lung capacity, being immunosuppressed for almost ten years so I am not allowed to be around groups of people like movie theatres or even airplanes. If I have a roommate who has a cold or getting a cold or any other contagious issues or if her visitors have any of the same issues, I will get sick and that could possibly kick me into lung transplants.

Yes, I was being a bit dramatic.

It was then that I learned something interesting. I will not be in a normal room after the biopsy. It will be a large room, separated by drapes in a post-op situation for the entire overnight. That, my friends, is even worse. As the staff goes patient to patient, are hands washed each and every time? How many people and visitors are in the room? Apparently, a lot.

This made me more nervous about it all. I did ask if I could maybe reduce the amount of people around me by being put in a corner. That, she said, could be arranged. She hoped!

So, I have all the bills paid, all the deposits made, food in the house and a lot taken care of in case I am in longer than expected. On Sunday, I will be making phone calls to William, Michael's mom, Michael's sister Anna, my brother and sister just to check in. Hopefully, I will text them all afterwards...

Today, the yards will be done and tomorrow I am so looking forward to Michael and I taking mom to dinner to celebrate her 86th birthday.

Still nervous.

Friday, August 15, 2014

Out and About on a Weeknight!

What a day. What a night. The rehab class was good yesterday. Everyone wished me best wishes for my liver biopsy on Monday morning. I probably won't be able to do any exercise all next week. Waiting for Michael to come home from work, Randy the Cop knocked on the door. His dad passed away earlier this year and he brought me up to date with all the happenings in his life. Almost two hours later, Michael arrived home to chat a bit with Randy before we RAN out the door for a drive into the city for dinner with British Don. Made it just a few minutes late.

It was a fantastic dinner, great conversation and we said our goodbyes to Don. He is leaving at noon today to visit his sister in England and his mom's grave, will be home a week then off to Taiwan again for business. Michael drove his car back to our house while I followed in my car. He is arranging to have some mechanical work on it while Don is away.

Restaurants in SF are packed on Thursday nights as it is considered family night. Not date night. It still surprises me to walk into an absolutely book place on a weeknight. Don had made reservations at  the place he goes to almost everyday in the Dogpatch area of the city. Very nice. Rather expensive. Small portions. The chef even sent over a dessert - donut holes with a cream anglaise sauce. Oh my! For a peek at the restaurant and the menu, click HERE.

The only problem? We got home at 11PM. It is going to be a long day.

Mom and I are having our toe nails done this morning, will go to have fabulous fish tacos for lunch then I am gifting a facial for her as part of her birthday presents. Lots of driving over the pass today. After Michael has dinner tonight, we are going back over the pass to drop Don's car off at the mechanic's.

It will be a rather quiet weekend ahead: yard work all day Saturday, Mom's birthday celebration on Sunday, the dreaded liver biopsy on Monday. Yikes!

Thursday, August 14, 2014

Just Another Miracle

Today is officially blog number 1711.  That is a lot of blogs. As I read some of the older ones, I discover how my own education about lung function and diseases has grown through the years as does my confidence. Once I felt the results of rehab exercise and was feeling so good, I began to dream that maybe, just maybe, I was going to live with this disease so much longer than expected.

And I have.

My advice? Go back and read the first months of the blog. It is my story of my illness and my own panic stage of living with a fatal diagnosis. It may sound so familiar to your story.

Miracles do happen. Besides my own, Mom had one yesterday. We met with her fancy cardiologist yesterday morning after an echo cardiogram. He walked in wide-eyed. He was stunned. Apparently, her heart function with the pacemaker went from very horrible to normal. In his words, he had NEVER seen that happen. Ever. There is usually an increase in function but not to now presenting a normal heart. It was a good day.

From there, we played some cards before I headed to see the nutritionist in the city. Traffic was horrendous. What would normally take thirty minutes took over double that time to arrive at the Weight Management Clinic. Yes, I lost two pounds, thank you very much. I want to lose three more before the wedding in September...

Twelve years into contracting my lung disease, I left the house at 7AM yesterday after showering, making the bed, cleaning the kitchen to drive miles with mom, walked forever for her university hospital appointments, enjoyed lunch together, drove miles north to my university hospital, walked to the appointment, drove home through horrible rush hour traffic, got home after 5PM, made a fabulous dinner and fell into bed at 8PM. That's a lot of activities of daily living! After ten years of daily exercise and healthy eating, I am out in the world functioning at a very high level. Never, never would I have ever thought I would be feeling this good this far into the disease. That alone is a miracle.

Wednesday, August 13, 2014

Barbara's Day Care Summer Field Trip

The sun broke through the fog while mom and I spent the day with the kids from Barbara's day care. Those are some lucky kids. Every summer, Barbara creates a summer field trip calendar so the kids are doing something special every day. In the past, we have been to museums, California missions, a visit with a bee keeper, swimming, bowling, making pizza and so many unique experiences. Yesterday, they were all here on the coast to visit the Elkus Ranch, which is owned by UC Davis.

We had a new docent this year and learned a bit more. They are now raising Angus cattle along with lots of sheep, goats, chickens and a couple of hogs and rabbits. At the end of the day, the kids were so excited to rake out the donkey stalls and add the wheelbarrows of "stuff" to the growing pile, which is dried and sold as miracle soil!

This summer, Barbara had two new children in the group and we loved watching them open up to the experiences of feeding the sheep and touching the lanolin in the fur, grooming the goats, holding the chickens, carding wool, making bracelets, planting edible plants into cups to take home and just enjoying being together. They arrived a bit hesitant but by the time they were grooming the goats, there were lots of smiles and they were both totally engaged.

That is why I love Barbara and the work she has done for the past 35 years. She offers children experiences that they would not normally have. She also makes sure the children are kind to each other, always with a light touch of words and a smile. Remarkable. Because of her, this is always an amazing group of children. There are no arguments and they really like each other and work together.

Afterwards, they all headed to the beach, which is always a special treat as they live across the Bay. It was a bit wild yesterday, everyone was soaked and fun was had by all. Just another summer day at Barbara's day care!

Tuesday, August 12, 2014

A Gap

We were at the dentist at 9AM yesterday, thought Michael would need a new crown but alas, the tooth was cracked and too infected. It was pulled. He said, with his tongue planted firmly in his cheek, "I am no longer perfect!" We both giggled, which made his jaw hurt!

After we got home and settled, I took a walk along the ocean and picked up some clam chowder at the harbor for his lunch. A rare treat. We both slept a bit in the afternoon and I feel pretty good going into the next couple of days.

Today, a visit to a working ranch with Barbara's day care kids. Mom's most favorite kid is back so I know she will enjoy the day. Tomorrow we will meet for an early run to her university hospital to have her pacemaker study and a visit with the doctor. Afterwards, I will head to my university hospital in the city to visit my nutritionist at 4PM! A very long day followed by rush hour traffic trying to get home.

These are the days that I worry about doing too much and wearing myself out. That will set off possible illness. We were supposed to go to the city tonight for dinner with British Don but Michael will cancel that today. He is not ready to eat anything other than soup and soft foods. Plus, he just doesn't feel like going out.

Just a mention about the passing of Robin Williams. Two of his children attended the school where I got sick. He was a nice man. He adored his children. Apparently, there was depression and money woes, which was not a good combination. I so hope he is at peace.

Monday, August 11, 2014

Long, Painful Weekend

William was in town for the weekend but we didn't see him. He was crazy busy with the Outlands Festival then he did two other shows in clubs. We will just have to wait to see him in person in September.

It has been a long night. On Friday, Michael noticed that his mouth hurt him. It began to bother him when he had cold liquids but grew more painful as the day wore on. Now, he cannot drink any liquids without a lot of pain. Saturday was rough. He came home, took pain pills and iced his lower jaw, which did offer a bit of relief. Finally Sunday evening, he allowed me to call the dentist. His jaw had swollen and he was in a lot of pain. He started antibiotics before dinner, did not sleep much last night and we will head into town to see the dentist first thing this morning. I think there is a problem with a tooth that has an old filling. The bet is that it has decayed and is now infected. I feel a new crown coming.

It was a wet, foggy day yesterday so I didn't do much. I got the new Comcast cable modem hooked up and only had to call them twice! Then it caused my wi-fi to not work again. Hello, Apple! I had fun with the tech, gave him coastside restaurant tips and made him laugh. He said I was the funnest person he had ever met over the phone! That all took a few hours...

Clarisonic Mia 1
After my first facial two weeks ago, I bought a Clarisonic. What a difference it has made to my dry, old skin! It gently pats the skin, the brush does not twirl. My face feels and looks so fresh and much younger! I am now addicted. I also booked another facial next week.

Tomorrow, mom and I are so looking forward to spending the day with Barbara's day care kids and our visit to a university-run working ranch here on the coast. Chickens, goats, horses, sheep! It is such fun!

Busy week ahead and in just a week, I will have the dreaded liver biopsy. Still nervous!

Sunday, August 10, 2014

Reconnecting with an Old Friend

Old friends. No explanations. No need to repeat histories. Barely a moment to become friends again. This summer has been a renewal of a few friendships.

At the graduation party of a friend's daughter last evening, a mutual friend was going to be there. We both were looking forward to spending some time with her. Nancy was married to Jeff, who went to apprentice school with Michael in 1971. They had been married over twenty years and had two children. They opened their own body shop where Michael worked for many years. It was there that Jeff changed. He was taking his young son skiing in the Italian alps, they bought a house in Tahoe and a new house in a nice area. He was always gone. He became arrogant and a bit too full of himself. Nancy was running the shop while he played, though he never gave her credit.

Things began to fall apart and she left him, with the support of one of Jeff's friends. After all these years, they are still together. He is kind and sweet and generous with his emotions. They are happy.

Michael ran into Jeff last week at Hot August Nights. He had never moved forward, still dressed as in the 80s and, as Michael said, just looked and acted old. He is living with a woman, trying to run a business and again reviewed the litany of the woes beginning with "Nancy had an affair and left me," to anyone who would listen.

It was so much more than that. She fled. She escaped.

At the party yesterday, Michael asked what finally made her leave. She told him that she realized that she was totally numb. If she had been thrown down stairs, she said she would not have felt anything. Totally devoid of feelings. She finally was truthful to herself about hiding her emotions. Actually, I think that was a protective shield. She was not a weak person but in that family, she was the weakest link so she was constantly used and put down. Dismissed. Mocked. Through the years, she also questioned what it was about her that drew these men to her. With the help of her wonderful parents and siblings, she began to rebuild her life and her relationships with her children, now in their 30s. The daughter is getting married soon, the son is living with her and both children are now seeing the bigger issues. It was so much more than, "mom had an affair." They are now seeing their parent's relationship was just a toxic relationship. Poison.

She is happy, looking forward to the wedding, has no problem being in the same room as Jeff as she has moved on. She has done the internal work. She is living an authentic life and has an honest, healthy relationship.

We so enjoyed reconnecting with her, exchanged email addresses and have made plans for the six of us to have dinner together soon. We don't want to lose her again. We don't want another ten years to fly by.

Saturday, August 9, 2014

Transjugular Liver Biopsy Scheduled

While mom was having her eye rinsed after a shot to prevent macular degeneration, my cell phone rang. It was my university hospital so I took the call out in the hallway. A lovely woman from radiology wanted to schedule my transjugular liver biopsy. The dreaded biopsy. We agreed to Monday, August 18th. We must arrive at 7AM then prepare me for an 8:00 start time. The whole thing should take 1.5 hours but it requires an overnight stay, where I will be monitored for bleeding at the biopsy site.

The good news that that I will just be sedated. No anesthesia, thank goodness!

A nurse, who will have read my entire file, will be phoning with more information and I will be able to once again make them aware of my diminished lung capacity and my concerns.

The doctor had requested this type of biopsy so the pressure in my liver can be measured. This will give a good indication of the amount of fibrosis present, if any. My poor liver is protesting after ten years of prednisone therapy for my lungs.

If it ain't one thing it's another!

Friday, August 8, 2014

Write a Book?

During the past two weeks, I have been told by four different people that I should write a book. My first reaction? It is nearly an impossible task. Everyone wants to publish a book. I don't even know how to begin the process.

What would be the message in the book? After a bad diagnosis, be proactive, get educated, be kind to the medical staff and doctors but ask questions, adjust life to the disease but not let it become your life, exercise and eat well. Live this final stage of life with humor and grace. There. Now you don't have to read it!! HA!

After telling Michael about the conversation with the lady who had been turned down for lung transplants last week, he asked what I am going to do to take my message to the next step. For the first time, I actually said the words out loud - a book. It was also the first time I had a thought that it would be interesting to involve him in a book project so he can speak for the caregivers, who really have more stress loving and living with someone with a fatal diagnosis because there is nothing they can do. A very helpless feeling as their life is also turned upside down.

If I do this book, I will have to reveal myself. Come out from behind the anonymous blog, so to speak. Photos will be involved. What I have loved about writing this blog is that I can be totally honest about my feelings and not worry about other's reactions. Others being family, friends and doctors! I will have to go back to delete certain blogs that would not be received well. That makes me sad.

So, your reaction, Dear Reader?

Thursday, August 7, 2014

FDA IDIOPATHIC PULMONARY FIBROSIS WORKSHOP


email header
 

Are you wondering how can you, as a patient, family member or caregiver, contribute to the FDA Idiopathic Pulmonary Fibrosis (IPF) Workshop coming up in September?  Even if you're not going in person, there are many ways to contribute to this game changing meeting.
Join our FDA preparation webinar, "Sharing Your Perspective with the FDA" next Wednesday, August 13th at 2 p.m. Eastern to learn simple ways you can share your experience and also learn what to expect at the FDA IPF Workshop whether you're attending in person or attending the workshop online.  
Experts from FasterCures (www.fastercures.org), including Kim McCleary and Shawn Sullivan, will be panelists on the webinar and will share from their experience with these kinds of FDA workshops to help you know what to expect and how to make the most of your effort to share your story.
And, if you can't join the FDA IPF Workshop in person or online, we can tell you how to share your opinions and experience with IPF a few other ways, too, including via the CPF survey, the public docket online, or via letters and phone calls.
There are many ways to tell the FDA about your experience with IPF - the most important thing is to find a method that works for you and use it to tell your story. However you decide to contribute, your experience is important and your voice needs to be heard by the FDA.
Please join the CPF's preparation webinar on Wednesday, August 13th at 2:00 p.m. Eastern, to understand how you can tell your story to the FDA and how you can positively impact the drug development process for IPF patients now and in the future.
Here are the webinar details:
Topic: Sharing Your Perspective with the FDA
Host: CPF
Date and Time: (see your time zone and the time below)
Wednesday, August 13, 2014 2:00 pm, Eastern Daylight Time (New York, GMT-04:00)
Wednesday, August 13, 2014 1:00 pm, Central Daylight Time (Chicago, GMT-05:00)
Wednesday, August 13, 2014 12:00 pm, Mountain Daylight Time (Denver, GMT-06:00)
Wednesday, August 13, 2014 11:00 am, Pacific Daylight Time (San Francisco, GMT-07:00)
To register for "Sharing Your Perspective with the FDA" 
2. Click "Register".
3. On the registration form, enter your information and then click "Submit".
Once the host approves your registration, you will receive a confirmation email message with instructions on how to join the event.



IMPORTANT NOTICE: This WebEx service includes a feature that allows audio and any documents and other materials exchanged or viewed during the session to be recorded. By joining this session, you automatically consent to such recordings. If you do not consent to the recording, discuss your concerns with the meeting host prior to the start of the recording or do not join the session. Please note that any such recordings may be subject to discovery in the event of litigation. 
 
 
 
Coalition for Pulmonary Fibrosis
10866 W. Washington Blvd. #343
Culver City, CA 90232
(888) 222-8541
info@coalitionforpf.org
 

Wednesday, August 6, 2014

A Pulmonary Rehab Story

Stop the presses! I think it is going to rain within minutes!! It NEVER rains here during the summer and we are in a serious drought! What a treat it will be to hear the tiny drops on the roof. But, it throws all my plans out the window, so to speak.

Saturday mid-afternoon, we are going to a graduation party for a friend's daughter who is heading to college soon. Other friends we have not seen in many years will also be there and we are looking forward to spending some time with everyone. As you may know, my Saturdays are always devoted to yard work. Hours worth of yard work. So, today I thought I would cut the grass then trim the entire little garden outside our bedroom window and turn all the dirt. It is near the same area where I "fluffed" all the dirt around the drainage system last weekend. My goal is to break up the tough top soil so the plants can drink in the little bits of water I am using to keep them alive as we are on water rationing.

But, the rain. I may have to wait for it to stop and not cut the grass, but I think I can still trim all the plants by hand and turn the dirt. This is going to probably take two to three hours. A good workout thus I will not be going to yoga this morning.

My stats at the rehab class yesterday were excellent - 96% on the treadmill at 3.4 MPH on 2 liters of oxygen. I often struggle to keep it above 92%. I am feeling great.

There is an 8-week class for the new people to pulmonary rehab just before our class. We often see people going through that process who end up in our class. There has been a gentleman attending this class who we have chatted with as he leaves these past few weeks. A nice man. A true gentleman. He and I were in the back of the gym yesterday, he was cooling down while I was warming up. He tried to put on his oxygen backpack but the strap was tangled so he asked for my help. We started to talk. Thursday is going to be his final class and he will be not joining our class. This may have been the last time I would see him.

I swear, sometimes I think a divine hand puts me in these situations so I can deliver a message someone needs to hear. It is a weird feeling. I almost feel like I have no control over what comes out of my mouth. The words just flow.

He asked about my situation and he told me that I was totally inspirational. That was when I looked him in the eye and said, "I promise you that if you keep exercising like you have been taught here, increase your speed and intensity slowly over time and build up to every day, you will have a much better quality of life and you may even have a longer life."

Tears welled up in his eyes. He told me he needed to hear that and asked if he could hug me. So there we were, in the middle of people warming up or cooling down in the back of the gym, human to human, both of us with tears in our eyes, hugging.

Tuesday, August 5, 2014

A Long Frantic Day...and Night

It is no wonder that I had dreams of frantically searching for something all night. Yesterday was very frantic. It started well and I was able to get out of the house and on my way to the other rehab by 7:30. Oops, had to turn around. I forgot the bag of empty copier ink cartridges. Start again.

Over the pass, I arrived so early to the other rehab that it was just the RN and me. No one else was there. We had a lovely chat about her 17-month little boy and music education. It brought me back to all the music we used to teach to our kids at the school. Finally, the workout. People began to arrive and I worked out next to a couple of people I had not seen for a while. More chatting. Finally, I finished up well over an hour later - due to the chatting - before meeting mom at her house.

I had a list. She had a list. We ran around like crazy. Michael's Art and Crafts for her, Office Depot and See's Candy then Nordstrom for me. I did a bit of buying at Nordstrom - a light jacket for only $35.00! While I was doing my paperwork and filing at home during the weekend, I found a $20.00 rebate check from Nordstrom, so I used it to buy our lunch. It was while in Nordstrom that I discovered that my driver's license was missing. My heart stopped. Where was I last? Where did I see it? Suddenly, I remembered that I had carried it with me on the Sunday walk along the ocean. I remembered seeing it on the counter near my purse. I also remembered that there was nothing on the counter when I left home earlier.

My heart stopped again.

After lunch, Mom and I played a wicked card game and she beat me again. I drove back to the coast for a visit to the bank. Deposit. Paid Visa bill. Back into the car for a quick jaunt home to begin the search. My heart was in my throat. I flew into the house and...nothing. It was not on the counter. It was not on the floor. I went through the recycle container searching each piece of paper thinking that the license somehow got mixed up while I was sorting. Nothing. In fact, the large container hit my ribs and I heard a pop. It still hurts. I was feeling frantic. I was thinking and searching everywhere.

Then, I had a lot of recipes to pull together to give to the woman who had been turned down for lung transplants. Lots of recipes. Over 100 of them. I put in the new ink cartridges and finished up printing, then putting them into packets to have them ready to be delivered today. That took over two hours.

During the printing, I got on the DMV web site and made an appointment to apply for a new license, but could not get one for two weeks! I will need it for doctor appointments next week when they ask for photo identification. This would not work at all. I made a plan to go to the DMV first thing this morning. They open at 8AM, I would be there at dawn to wait in a line and spend as much time as needed to get my replacement license.

Through the web site, I found out what I needed to bring to the DMV. They said that they would pull up the photo of the old license and match it up with the person. I saw a problem with that. I am over 70 pounds lighter now. I don't look like that anymore. That may be a problem. Oops, I would need my Social Security card, too. It was in the bank vault. It was 4:54. They closed at 5:00. I made it to the bank with 30 seconds to spare, they took me into the vault, I got the SS card and my birth certificate. I was breathing heavily and preparing for the early morning drama after I got home.

Then it hit me.

I had checked one pocket of the jacket I had been wearing during my walk on Sunday. I thought I should check it again. There it was. In the jacket pocket. Safe and sound.

Relief flooded through my body. I did not have to get up early, I did not have to wait in long lines, I did not have to deal with any of it.

By now, it was 6:30, I still had not eaten dinner, Michael didn't come home until 8:00, I still had to cook his dinner and I wanted to talk a bit before going to bed. There, I tossed and turned and had the searching dreams until 3AM. No more sleep. It is going to be a long day.

My only plans today? To give the head of the rehab program the recipes to pass along to the woman, give the address to a great assisted living facility to Richard at rehab, a quick run into town for gas and fake pasta for dinner tonight and a good workout at the rehab class. That is it. Oh, and a nap later this afternoon. I am going to need it. What a day!

Monday, August 4, 2014

Gained and Lost Weight Quickly, Thankfully!

He is home. Michael pulled into the driveway around 2:30PM after having to change a tire on the Porsche just north of us. We are so grateful that we had no problems during the May road trip nor the recent quick trip to LA. His entire group of friends had a wonderful time in Reno at "Hot August Nights" and he came home with many stories to tell.

After a great dinner of Asian Slaw and protein-style hamburgers, we were both happily in bed by 8PM. I didn't even mind a bit of snoring early in the night. He was there. He was home.

It is going to be cool here today with highs along the coast of only 60 degrees. Mom and I will run a ton of errands for me then enjoy a lunch together. I will hear if she once again took money from the men in their Saturday night porker group. She is a darn good card player.

I was growing concerned as I had gained three pounds since the long road trip and I didn't want it to extend to ten pounds or more. I think they are now gone. Thankfully! My clothes are looser, I feel lighter and the additional exercise has not hurt either. I will weigh-in next week with the nutritionist.

Why was I suddenly gaining weight? It bothered me. I kept trying to figure it out until, in the middle of the night over a week ago, it hit me. The nutritionist suggested that I add La Tortilla low carb tortillas and Wasa Light Rye crackers to my diet. They are so delicious that I think I was eating one or the other everyday. I now believe they have too many carbs for me to process. So, after cutting way back and only eating three crackers in the past week, I think the pounds are gone. Mr. B. and I will have a conversation about this when I see him.

Off to the other rehab I go this morning! A good workout ahead. Happy Monday!

Sunday, August 3, 2014

Waiting

It has been a long few days. I really miss Michael but he should be home around noon today! I wore myself out yesterday by fluffing a lot of dirt and was soaked in sweat and exhausted afterwards. Bedtime came early but I have been up since pre-dawn.

Someone asked me how I can still do the yard work. I explained that I wear my oxygen in a backpack, don a mask, gloves, hat and a long sleeved shirt. Charming. I often wonder if the neighbors ever see me in my nice clothing! I wear all of that gear to protect myself from the sun and from any dirt spores. And I have been doing the gardens for over thirty years. I didn't have to work up to it but just needed to adjust as the disease progressed. One of the doctors mentioned to me that when I am on the lung transplant list, I would not be allowed to even cut my grass. Something to do with an exposure that would not be good going into transplants.

Around 2PM yesterday, Comcast had issues in our area so I have been disconnected from the Internet since then. This morning, I could not reconnect even though Comcast was back on....Hello, Apple Support! We had an hour chat before everything was back. I am now mentally exhausted!

Coffee! I need coffee!

It is wet and foggy this morning but I am still going to take a hike along the ocean in an hour. Then, I will peer through my windows waiting for Michael to come home.

The week ahead: two doctor appointments and a graduation party! But, I will still workout at rehab four mornings and my new yoga class on Wednesday along with the additional walks along the ocean. A nice, full week out in the world. Living. Active. With 47% lung capacity! Join me.

Saturday, August 2, 2014

Weekend in Reno and Recipes for the Week

The house is so quiet. I had to make my own coffee and the other side of the bed was still perfect when I glanced over this morning. Michael left yesterday for his annual trek to Reno and their automobile extravaganza, "Hot August Nights." He was excited to hit the road with Mark, from work. They were meeting so many friends there and, what I so love, many brought their children with them. I have been invited every year but it is high in the mountains and the elevation makes breathing very difficult. And the heat. It is often 100 degrees or more but this year, it is expected to be in the high nineties. Heat + elevation = me staying home.

It is foggy and cool here this morning but it is going to break soon. In order to wear myself out so I sleep well tonight, I am doing a quick mow and blow of the yards then will focus on my "fluffing" project. It may take over an hour of hard work, but the dirt covering the drainage system for the back yard needs to be broken up to allow the rain water to flow into the system more easily.

For an extra special lunch, I am making myself "A Whopper in a Bowl" salad then my Friday night Mongolian Beef leftovers are waiting for me for dinner.

If I can just get through today, Michael will be home after noon tomorrow. We are apart so rarely and it feels so odd not be have him around. He will have so much to tell me and his eyes will be bright as he talks about all the free ice cream during the parade and the cocktail party the first night and being escorted past everyone else to back dining areas and all the food he ate and the new people he met.

It is good for him.

Here are the recipes for the week. These recipes have been adjusted to serve 4, low carb and low calorie. I try to stay about 1,200 calories a day to lose weight and 1,400 to maintain. With that combo, those of us on longtime prednisone therapy will not gain weight. We will be able to process the food properly.

Breakfast:
Summary Pizza Omelet - here
Warm Red Cabbage with Bacon and Goat Cheese - here - I use browned, chopped pancetta instead of the bacon.

Lunch:
Linny's Whopper in a Bowl - here - I use 1/4 of ground beef per serving
Tuna Salad - my own simple recipe of albacore canned tune mixed with a dash of Italian seasoning, a some minced red onion, a bit of pickle relish and low-fat mayonnaise. Serve alone or over greens. Makes 1 serving.

Dinner:
Low Carb Burgers with Asian Slaw - here and the Asian Slaw is here
Low Carb Wicked Chicken with Pasta Slim - here
Mongolian Beef over Fake Rice - here - I use fake sugar
Balsamic Chicken with a vegetable on the side - here - I use 2 chicken breasts (1 pound total) then cut the rest of the recipe in half to make 4 servings.

Pasta Slim and Miracle Rice (here) can be found in Whole Foods-type stores.

Friday, August 1, 2014

Dreaming About Running

I dream about running. When I am on the trail along the ocean, beautiful runners with their long, easy strides glided effortlessly past me. Well, most of them. Then come the ones who pass me struggling and looping along like how I used to run, even as a child. I was never a good runner.

But, I would love to feel the easy flow of enough oxygen. To run without being short of breath. To have that beautiful stride and the feeling that I could run forever. That is what I think about when I think about a my future single lung transplant. That is my goal: to simply being able to run.

I met a person before the rehab class yesterday. She was doing an introduction to the 8-week education/workout pulmonary classes and Sherman began a conversation with her. She had been turned down for a lung transplant. He told her about me. After her session, we met. I knew immediately why she had been turned down - her weight. In a very quick conversation before I was called into our class, we did a quick run down on the problems of long-term prednisone theory. She, too, was eating non-fat Greek yogurt and berries every morning thinking she was eating in a healthy manner. Well, all that has sugar and is processed poorly due to the prednisone. I promised that I would pull together about 25 recipes for her.

I took off to class where I talked to the head of the rehab program. We were still talking when she returned and the three of us chatted for about ten more minutes. I learned that she spends most of her time on a couch. She was still in the frantic stages of dealing with the horrible diagnosis of COPD. I looked her in the eyes and said, "If I could only give you a sneak peek into your life a few months and years ahead, you would be shocked. If you eat properly and learn to exercise safely here in class, you will be feeling fantastic. I promise." The head of the program told me that all we discussed was much more meaningful coming from me as I have been through the worst of the wars and have settled into a normal life of living with a bad diagnosis. She also told me that when I made the promise to her, the head of the program saw hope in her eyes. Probably for the first time in a long time, someone truly understood all the emotions of feeling isolated, not understanding all the is happening and feeling so helpless. And hopeless.

This was what I wanted to give to her. There is hope. I am standing, living proof that if she eats non-starchy vegetables, 3-4 ounces of lean protein and exercises everyday, there will be a better quality life ahead. Life.

When I was really sick, I remember dreaming about being able to just walk down a street. Maybe one day soon, she will also be dreaming about running.