Living Well with a Bad Diagnosis - Lung Disease

Saturday, November 30, 2013

Ouch!

The coughing from the exposure to the scented candles on Thanksgiving has subsided. I dragged through the day yesterday and fell into bed early. Suddenly, in the middle of the night, Michael got up. He came back to bed, I drifted off and suddenly, he was up again. What is wrong? A tooth started to bother him after he climbed into bed and the pain continued to increase in intensity. Pulling on some clothes, he drove to CVS to buy teeth/gum numbing cream so he could sleep. After setting up camp in the family room, he was able to snag a few hours of sleep. He will phone the new dentist soon and have some relief within hours. Times like this, I am grateful we are not on one of our long road trips!

Michael's sister invited us to contribute to a new Notebook, router and printer for their mom's Christmas present. Perfect! Yes! They bought it (Anna's son works at Best Buy!) and it will be installed on Monday. She will be back online, which is good for her soul.

I am feeling well, but tired. My body is yearning for a workout and the garden needs attention so that will work out well.

Friday, November 29, 2013

First Thanksgiving to the Next Generation

In just a few words, Thanksgiving was one of the best in years. It was the first time it was hosted by my niece Shelley and she was brilliant. Her apartment was charming, she was so prepared and everything was perfect. It was very casual. It was lovely.

And we got to meet Russ. After her shocking divorce after six months of marriage (he decided he didn't want children after being together seven years), she met this really nice, normal, smart guy. We will see them again at Christmas at my sister's house but hope they come to visit us soon.

Lee's husband Jeff is having his MRI on Monday to determine if they will proceed with surgery on his neck. His arms are cold and feeling very heavy. He had cadaver bone replace damaged vertebrae in his neck five years ago and another one may have gone bad. If they decide to do the surgery, it will probably be before Christmas.

Mom enjoyed everything. She even phoned Betty and Chip in New Mexico to wish them a Happy Thanksgiving.

There was one problem: I started coughing on our way home. Shelley had beautiful candles lit in the living room and bedroom. Smelly candles. I guess after a few hours, they got to my lungs. The cough continued this morning so I hope is lessens throughout the day.

Mom and I are meeting this morning to run some errands and share a very small lunch.

I so hope your Thanksgiving was filled with love and support (and fantastic food!).

Thursday, November 28, 2013

Giving Thanks

Today is the day to give thanks. Even having a bad diagnosis, give thanks that there has been a proper diagnosis. Give thanks to the doctors and nurses and surgeons met on the journey. Give thanks for the love and support of others though sometimes we don't notice. Give thanks for the breath we have. 

But, how we life our lives is up to us. Life is nothing but perceptions. If you perceive it as awful, it will be. If you perceive it as rich and full and an adventure, it will be. Because of being ill, it doesn't mean that everything is now bad and anger is allow to seep into the soul. So I love this quote:

“Sometimes life knocks you on your ass... get up, get up, get up!!! Happiness is not the absence of problems, it's the ability to deal with them.” 
 Steve Maraboli, Life, the Truth, and Being Free


Give thanks today. And everyday.

Wednesday, November 27, 2013

Pre-Thanksgiving

Mom and I are cooking together early this morning then I will continue baking this afternoon. I am looking forward to spending time with my niece and meeting her new boyfriend for the very first time. I hear he is a keeper. Lee and Jeff are bringing the turkey and we will all be together in her apartment overlooking the American River in Sacramento. Weather is predicted to be in the mid-60s. Nice. Mild. No rain.

Lots of driving will happen. I hope it is a safe trip.

This time of year, I am always grateful to enjoy one more holiday season. One more year on this earth. One more year of living well.

So my dear readers, enjoy your families, appreciate life and your time together. Give thanks.

Tuesday, November 26, 2013

In a Fog

I was dragging all day long. After having very little sleep Sunday night, I was able to barely function all day without a nap. First up - Medicare Mess. I must say, I love every single Medicare employee I have ever dealt with through the years. They are kind, patient and thoughtful. I would not be good at their job! Terren, who I spoke with on Monday, was up to my challenge and very professional and kind. After I read the list of procedures covered by my Medicare Set Aside from the Worker's Comp lawsuit to her, she told me to have my university hospital resubmit the claim on the electronic Form 1500 and on Section 10 to note that, "this is not part of the WC claim." Perfect. Great. I phoned my university hospital billing department and spoke with someone who I still feel really didn't understand what I was trying to tell her. Resubmit! Refile! She kept telling me that the claim had been paid. I was telling her that it has just been kicked back by Medicare. She said all is well. I should not worry. She will take care of it. I am expecting it all to fall apart. Not a lot of confidence that she will follow through and I will suddenly get a bill in the mail for my hospital stay. If so, I will drive up to the city and deal with it in person.

Hopping into the car to mail the property taxes at the post office, I noticed Michael's sunglasses. It was a very sunny day and I thought he would probably have a headache at the end of the day without these specs. So, I drove by his work to drop them off. Then to mom's. We did the food shopping for Thanksgiving and also a quick run at Sears. Michael has wanted new LED Christmas lights. Holy Cow! They are expensive! He usually hangs 900 lights each year but at $30.00 per 100 lights, that is crazy. He is going by Home Depot today to see if he can find them cheaper.

I finally drove home in an exhausted fog, unpacked all the groceries, cooked bacon for the morning for Michael, put the lamb stew on the stove for two hours, watered the front yard and kept moving. I finally fell into bed at 7:30 and slept straight through the night.

Today? Rehab class. That's it. Tomorrow, the cooking madness begins!

Monday, November 25, 2013

Wayfare Tavern, No Sleep and Medicare

Wayfare Tavern - Our booth was the last one on the right
Tough night. After our lunch with British Don to celebrate our birthdays, they served each of us a French press of the most delicious coffee. I asked for decaf while Michael and Don enjoyed regular. There must have been a mistake. I was awake until 2:30AM, slept for almost three hours and will be totally wiped out today.

But, the three-hour lunch at Tyler Florence's Wayfare Tavern was delightful.  Don is so interesting and smart and funny. It is always a pleasure to spend time with him. He also is a foodie and he was delighted to have such high quality food. We shared oxtail poutine and "Devils on Horseback" for appetizers and, oddly enough, each of us ordered the hamburger. It was not your normal hamburger: grass-fed proprietary grind, Marin brie, roasted onion, smoked bacon, brioche with sunny side up Petaluma egg. I did not have the brioche or egg. It was delicious and I was not able to finish it.

They brought Don a piece of chocolate pie that was not sickly sweet. It was smooth, light and delicious. We each had a bite of their dessert donuts. Oh my. Two cinnamon donuts, with their holes,  served with lemon curd and cranberry/pomegranate and apple/cinnamon marshmallow sauces on the side.

After Michael leaves for work, I will begin my quest to talk with Medicare about not paying my hospital bill from my September visit. It should be an interesting conversation. Afterwards, I will workout at the other rehab before meeting mom to begin our food shopping for Thanksgiving.

Sunday, November 24, 2013

The Very, Very, Very Last Birthday Celebration

Today is the final, last, end of the line, period at the end of the sentence celebration of my birthday earlier in the month. I swear. British Don recently had a birthday and wants to celebrate both of our special days together. We are having lunch at the Tyler Florence restaurant where we celebrated mom's birthday in August. He has never been there.

I worked in the garden for a couple of hours yesterday, not a lot of trimming needed but just a quick cut and pick up from the winds. The sun was streaming through the huge windows in the family room when I checked in with my sister-in-law Betty in New Mexico. They were having a huge snowstorm blow through, cooking a stew and she was still in her PJs. It felt so good to feel the warm sun that after our conversation, I settled into my chair and slept for almost two hours.

With Michael's work schedule, I just don't get enough sleep. The best time of our day is in the mornings when we have coffee, watch the news, read the morning papers and chat. I wouldn't sleep through those moments for anything in the world. But even going to bed early, it is so hard to be up by 5:30AM. Naps do help.

The countdown to Thanksgiving begins Monday when Mom and I will go the grocery shopping together. I will also have my difficult conversation with Medicare. Oh fun.

Saturday, November 23, 2013

Just the Beginning of Medicare Mess

It is going to get ugly. I can feel it. Yesterday while I was with mom waiting an extra hour for her eye shot for muscular degeneration because the doctor was late, I looked at my email on the phone. There was one from my university hospital indicating that Medicare had refused to pay for my hospital visit for pneumonia in September. What?!? They said that I have an open Medicare Set Aside related to my Worker's Comp claim.

Medicare Set Aside. Here is background information from a previous blog: http://livingwellwithabaddiagnosis.blogspot.com/2012/03/medicare-set-aside.html

What I will have to do is phone Medicare on Monday, explain that the money set aside was for specific items, which did not include a hospital stay. In the meantime, I will be receiving a bill from the hospital for the entire three day stay which must be paid or my credit will be ruined.

I didn't sleep well last night.

Today, I will be transferring money to pay the property taxes then spend the rest of the afternoon working in the gardens. Because of the winds, there are lots of leaves and small twigs that need to be put in the garden waste recycle bin.

Friday, November 22, 2013

Talking, Talking, Talking

I never had a moment of silence yesterday. To see my ILD friend Marty for the first time post-transplant was the highlight of my day. The planned one hour coffee turned into two hours together. We talked about so much of what I have written about in this blog: transplant process, rehab, pressure on our caretakers, our planned funerals, the actual surgery and so much more. He looked fantastic, though very thin. He was so happy that he decided to go through the whole process, never had a moment of pain after the transplant and was currently working hard in rehab. He was also thrilled to no longer need supplemental oxygen. We clinked elbows - not wanting to get too close - and said our goodbyes. It was too late for me to go to the rehab class, so I went to the butcher then Trader Joe's.

While I was waiting for Marty, I phone my brother, Chip. His wife Betty was having an endoscopy. He answered the phone with, "Great timing! She just came out!" It turns out that the mass on her stomach was a shadow on the CT Scan and they discovered she only had damage from acid reflux. That's it. No cancer. No needed surgery. They will have her on a strict non-acidic food diet and three different drugs. They also will need to put the head of their bed on blocks. An easy fix.

Then I phoned my sister, Lee to ask when her husband's MRI was scheduled. No answer. Left a message. The next call was to mom to tell her the good news about Betty.

After getting home, I phoned Chip again to see how Betty was doing. They were home, she was in a bit of pain but so happy with the results of the tests.

Around 5:00 the phone started ringing. First, Lee let us know that Jeff was scheduled for his MRI on Dec 2, his arms are very cold and numb and the expected surgery on his neck will be before Christmas. Beep, beep. Incoming call. Goodbye, Lee. It was William phoning from home in Seattle while he was making a cassoulet. We had a great chat, he is leaving on Saturday for four days in LA so the group can appear on late night talk shows, he will fly home then leave for a short US tour on Dec. 4th. He is looking forward to coming home before Christmas, cooking together, going out to wander the city, seeing his grandma and just relaxing. He needs some down time before the major travel schedule beginning next year.

Suddenly, the door bell. My Apria guy. Good bye, William.

I love my Apria guy. He was in a chatty mood and was struggling with his oldest son suddenly growing from an 11-year old child into a 12-year old teenager. We had a long chat about how it was his job to teach his son how to transition to manhood. After almost an hour with him, I ran back into the house, returned Lee's phone call and finally sat down! Two minutes later, Michael arrived home from work, we jumped in the car to get some fish tacos, talked about my busy day then fell into bed.

Sounds easy? Bed? Sleep? Well, no sleep for us! There were 45 mph winds all night that shook the house. We were awake more than asleep. We threw the towel in at 4AM and watch the local news of all the trees down, power outages and traffic accidents.

Today? The other rehab will see me early then mom and I will hang out until her eye doctor appointment this afternoon. I think I will need lots coffee to get me through the day!

Thursday, November 21, 2013

Grace's Birthday Luncheon

Jane, Grace, Mom, Odulia
We had a marvelous birthday luncheon with mom's buddies yesterday. Her best friend Grace is part of the '28ers club - born in 1928 - which includes my mom and Jane. Her dear friend Odulia, on the right, is struggling with dementia, living is a skilled nursing facility but was present for this party with her two daughters. There were lots of photos taken, much laughter and mom was so happy to see everyone. She misses her gang of friends. 

Before lunch, we drove about 30-minutes north to visit my dad. Mom changed his flowers to a Christmas theme of red and white, cleaned the lettering and gave him a kiss goodbye. Then we hit Walmart to buy some outdoor Christmas lights. On the way home, we drove through a horrific rainstorm but made our way safely through it all. 

By the time I got home at 4:30, I was done. Tired. Worn out. I am so afraid of getting sick again that I made sure to be in bed and asleep by 8:00. No orchestra rehearsal for me last night. 

This morning, I am meeting Marty who is the only person I have ever met with my disease. It will be my first time seeing him since his lung transplant and I want to hear all about it but I promised him only an hour as not to wear him out. Rehab class will follow then a run to the butcher, Trader Joe's and Safeway. Another long list of things to do today!

Wednesday, November 20, 2013

A Bit of News

The big news: The 25-pounds of walnuts have all be cracked, are in sealed bags and waiting to be made into baklava and sugar-glazed walnuts. I estimated that there are around 10 pounds shelled. I saved about $20 between what I bid for them and what I could have bought them for at Safeway! Is my labor worth it? Actually, I really had a good time shelling them.

Other smaller news: I hit Macy's big sale yesterday and bought two sweaters and a pair of brown cords.  All were 50% off plus another 10%. They almost gave them away.

Even smaller news: Michael and I were up at dawn, showered and dressed in the new cords and the medium blue sweater and ready to hit the road. Mom and I are on a 100-mile road trip to visit my dad's crypt and for her to celebrate a friend's birthday. It is going to be a long day.

Tiny news: I am planning my menu for Thanksgiving. Mom is making the stuffing and homemade cranberries and I am bringing appetizers and dessert: a pumpkin cheesecake with pralines on top, crostini with prosciutto, cooked fig with a drizzle of balsamic vinegar and a potato chip, smoked salmon, cream fraiche with a snip of chives. That's it so far. Michael also suggested Molinari Salami and maybe some truffle cheese topped with quince.

Tuesday, November 19, 2013

Busy Times Ahead

Crazy busy day ahead. It's my Rehab Boy, Dick's 81st birthday today. Sherman and I signed two hilarious cards to him and I am bringing three of the best donuts for him when we met later this morning. Donuts are his favorite food. And chocolate chip cookies.

I have to be on the road in an hour to buy the donuts here in town before meeting mom at her home. Today she has an appointment to report on her pacemaker device from her home. They are expecting it at 9:00. She will put this little paddle on the pacemaker, wait about a minute then the information is transmitted. Rather fantastic. She is feeling so good and has boundless energy. It really is working well.

We will be taking the long drive out to the Central Valley tomorrow morning to celebrate her friend Grace's 85th birthday. We want to leave earlier so we can place new flowers on Dad's crypt for the holidays. I will be exhausted by the time I get home in the early evening so I won't be going to orchestra rehearsal.

Thursday, I am meeting the only other person I have ever met who has my disease. Marty has just had a lung transplants about three months ago. We are only going to meet for an hour over coffee. I don't want to exhaust him.

But, I am looking forward to Sunday afternoon. We are going to meet British Don in the city for another birthday celebration for the two of us. I love spending time with him.

After reviewing this week's schedule, planning my contributions for Thanksgiving's dinner for next week, having friends here for dinner the following weekend, I told Michael that we cannot book any additional social engagements. That is how I ended up in the hospital last September. Too much.

Monday, November 18, 2013

Sunday in the Car with Michael

I am surrounded by dust and pieces of walnut shells. On Sunday, we bought a walnut cracker that is so clever and works to remove the walnut halves from the shell. Pop the walnut in, twist, it is perfectly cracked and ready to remove the shell. Yesterday afternoon, I shelled about a quarter of the 25-pounds of walnuts I won at the silent auction for an elementary public school. And it was fun, too!

We left home early Sunday, went to Michael's little shop to remove some tape from the entire side of a friend's car, visited with Sherman's buddy George next door, drove to the city to drop off a motorcycle tank and fender to another friend, back to the Peninsula for lunch on the Avenue, a visit to Sur La Table to buy the nut cracker, cruised the highway to a lamp place to buy a replacement lamp shade then off to Stanford Shopping Center. Nordstroms! Bloomingdale's! We were searching for a new purse and I needed my stylist with me. Michael actually found the perfect one.

The purse it is replacing was bought six years ago and has been used almost daily. It was looking worn and the inside lining was torn. I do love a nice purse but there is a limit to what I am willing to pay for it. I saw a perfect one, but it was over $1,200. Ah, no. Finally at Bloomingdale's, the skies opened up and the angels sang. Ralph Lauren. Black. Leather. Perfect size. Not too heavy. Not too expensive. The winner for the next few years. Imagine where that purse will be.

The drive home through the pass was so beautiful and a visual reminder that Fall is here. It was a lovely day. It was exactly how I love to spend a day - together.

Sunday, November 17, 2013

Silent Auction Winner

Natalie and I had a ball at the fundraiser. I even ran into the parents of William's best friend at the school. Jeff and William were inseparable. When they went to different junior high schools, they saw less and less of each other and life happened. They have not seen each other in over twenty years. Jeff's parents said that he recently was wondering what ever happened to William. I gave them William's professional name on Facebook and asked to pass it to Jeff. I also friended his mom after I got home.

After a chat with them, I ran into a parent from the school where I got sick. Natalie also taught his children. It was great being brought up to date about his kids and he did not know that I got my disease there. Dinner time! Fantastic chicken and conversations. Then the auction. A lot of money was spent! It was a nice evening and Natalie and I talked music and kids and scheduling and music classes and her children.

The silent auction...I won one item. Thirty pounds of walnuts. Sounds like a lot but I make pounds and pounds of Sugar Glazed Walnuts for Christmas presents. Good idea? Ah, I didn't read the fine print. They are not shelled. Thirty pounds. Many hours are going to be spent shelling nuts. Michael laughed so hard when he saw me hauling them through the door.

Saturday, November 16, 2013

Recipes for the Week

Tonight, there is a fund raising dinner and auction at the elementary school where William went to school and Winnie currently attends. Natalie has invited me to go with her. We shall talk non-stop all evening. Music and children. My two most favorite subjects.

And, the Formula 1 race is Sunday from Austin, Texas. An interesting and fun weekend ahead.

Although I am going out to dinner tonight, I thought I would list my recipes for the week. Again, these foods are designed to be low carb and low fat. The protein portions are 3-4 ozs. and the vegetables are non-starchy. All recipes make 4 servings.

Bacon-Wrapped Boursin Stuffed Burgers - I use one pound of ground beef and only half of the Boursin. I also pre-bake the bacon until it is slightly browned. I am serving it with a steamed artichoke.   http://www.genaw.com/lowcarb/boursin_stuffed_burgers.html

Braised Balsamic Chicken - I use only one pound of chicken but use the listed portions for everything else. This is delicious. I usually serve it with fresh tiny green beans. http://allrecipes.com/Recipe/Braised-Balsamic-Chicken/Detail.aspx?evt19=1

Mongolian Beef - Sometimes I get so hungry for Chinese food. This is fast, once everything is prepared and ready to go into the pan. Michael has his over rice. So good! http://recipes.sparkpeople.com/recipe-detail.asp?recipe=1736075

Portobello Parmesan - I double the recipe. Make for breakfast or lunch. A special treat. http://www.genaw.com/lowcarb/portobello_parmesan.html

Friday, November 15, 2013

Prednisone Caused Pressure in Eyes

Something happened here on the coastside yesterday and there was no Internet, no cell phones, no nothing. I thought it was just me! It suddenly stopped around 3:30PM and was fixed around 1AM. I had just written an email to Dr. K. regarding my eye doctor appointment earlier in the day. Because of the long term prednisone use, the pressure in my eyes has increased and I have been on medication for over five years.

Yesterday, my very cool and hip glaucoma specialist said that the left eye needed some help. He wanted to switch my eye drops to Cosopt. Fine. Well, the problem is that it can cause a slight decrease of the bronchi. He said that I must get permission from Dr. K. to begin the drops. If she is not comfortable with them, I would need some help to keep the pressure in check by a laser treatment.

Off the email went. Suddenly, the Internet stopped.

This morning, there was a message from Dr. K. in my inbox. She said: I would use it and see what happens. Start on Monday so we can catch any changes early.

Later today, I will swing by CVS and begin using the drops in the left eye. I will be more aware of how well I am breathing and my numbers during my workouts so if it goes bad, we can catch it early.

In other news: Michael is injured. He was fixing a headlight on the 840 BMW, while I was at orchestra rehearsal, in a crouched position balancing on his toes. He has done this for years but since working as management instead of a worker since April, his body was not used to this position anymore. His large toe hurts. The joint hurts. Ice helps. Motrin helps. He slept well last night, has been icing his foot this morning and I expect he will be home early today. He is now helpless. He needs help to do anything requiring him to leave the chair. Ice? Got it. Water? Milk? Motrin? Coffee? Breakfast? I may never sit down all weekend! I don't mind. It is a pleasure. I must go now. He is calling to me...

Thursday, November 14, 2013

Evenings Out

It was a rather sweet conversation. During the break at orchestra rehearsal last night, the flute players and two other musicians came over to me to ask how I was feeling. Great. Fantastic! They were stunned that I had been so sick and bounced back with no permanent damage to my lungs. It was lovely to be told over and over how healthy and beautiful I looked. Every girl likes that! It was also a chance to answer their questions about the whole lung transplant process and why I am trying to postpone them as long as possible. I was very touched with their concern, kind words and support.

Just a couple of years ago, Michael and I would jump into the car after dinner, go into town and have a cup of coffee or one of us would have a piece of pie. He began to be careful of his food and he gave up the dessert. So, we would go for a drive just to get out. Since he is now working full time, he comes home late, eats dinner and he is done. Tonight, we have been invited to an open house at our dentist's office to welcome the new owners of the practice. Our former dentists (husband and wife) will be there. Gwen plays the harp next to me in the orchestra. They will introduce the new owners to the community. We will be going out after dinner! A big deal!

Two nights in a row? Friday night, we have been invited by our neighbor Leslie, who is the first chair of the second violins in the orchestra, to see her small group perform Irish fiddle music at one of the B&B/restaurants in town. I am luring Michael there with the promise of an Irish beer and a possible conversation with her husband, Joe. He is from Ireland and has a lilting accent. A good, kind man. And very funny in a dry kind of way.

So, I am feeling like an adult. Out into the world in the evening.

Wednesday, November 13, 2013

This and That

I am feeling fat! After my birthday week celebrations which included eating foods I don't normally enjoy in my daily diet, I am now drinking a lot of water and watching every bite. We are beginning to plan another cross country road trip beginning May 1st and I want to be about eight pounds lighter. So with that in mind, I will be contacting the Weight Management Group at my university hospital to begin a month of their liquid/protein diet right after Christmas. That should leave me ten pounds lighter, then I should lose another five pounds the next month as I add food back to my diet. It would be marvelous to begin our trip feeling very slim and full of energy.

The scabs from the freezing of the twenty precancerous spots on my arms and legs are all gone except for one. My toe nails are now so long they hurt when I am wearing certain shoes. I wanted to wait until there were no more open wounds that might become infected before having a pedicure. Today is the day. After the yoga hell class this morning,  I am going to cover the one spot and not allow any water to get near it. So looking forward to it. Afterwards, I will do a quick run through Safeway then rest until orchestra rehearsal tonight.

My Rehab Boys and I were reunited yesterday for the first time in months. We were loud and laughing and talking a lot about recipes and food. It was fun. Sherman's tendon surgery in his hand has fully healed and he just has a few more appointments before that rehab is completed and Dick was back to his old self. He has been traveling and busy and helping his wife. It felt good to be together again.

After mom's pacemaker was installed, the docs told her that she would feel full of energy in six months. Believe me, it has kicked in! She runs around all day then cleans her kitchen cabinets and closets in the evenings. As she keeps losing height, she has completely lost her waist. This woman is 115 pounds and her pants are suddenly too tight. She now realizes that her tight pants are causing her to be very short of breath. TA DA! Her frightening shortness of breath is suddenly not a problem! Loser pants!

My friend Cynthia, who phoned on my birthday, told me a story about her mom. She is 94-years old and lives just outside her hometown in Pennsylvania. She was in an independent living community when she fell. It was recommended that she move to an assisted living environment which this tiny, self educated, brilliant woman hated. She got out of bed on her own to use the bathroom late one night and fell. It was a hard, brutal fall. She lost her eye and was hospitalized with other injuries. It was not looking good and the family was advise to fly to her side. Cynthia was holding her mother's hand while listening to her say that death is just part of life and that she was looking forward to seeing her husband and son who had died. She closed her eyes and died. Within less than a minute, her eyes flew opened and she said, "Now what am I going to do? They sent me back!" She had seen the tunnel and her son who told her she had to return to life. Amazing story. Home is now a lovely skilled nursing facility.

Tuesday, November 12, 2013

Biomarkers Help Predict Outcome of IPF


This was sent to me by Susan at the ILD Support Group. Interesting article about IPF:

Newly Identified Biomarkers Help Predict Outcome in Deadly Lung Disease

Posted on Yale News
October 2, 2013
By Helen Dodson
A Yale-led study has identified a gene expression profile that can predict outcomes and lead to better treatment for one of the most lethal lung diseases, idiopathic pulmonary fibrosis (IPF). The study appears in Science Translational Medicine.
IPF causes progressive scarring of the lungs, leading to cough, shortness of breath, and potentially death. In most cases, the cause cannot be identified, and there is no cure other than a lung transplant. While some patients experience a progressive course that leads to death within one to two years, others experience a relative stable disease.
The researchers’ goal was to identify changes in expression of genes in the blood that are predictive of poor outcomes among patients with IPF.
Using two cohorts of patients, the researchers from Yale, University of Chicago, and University of Pittsburgh analyzed the expression of the genes in the whole genome of patients with IPF, and identified 52 genes that significantly correlated with outcome. They further found that the decreased expression of four genes — CD28, ICOS, LCK, and ITK — predicted shorter survival time in patients with IPF.
The research team believes discovery of these biomarkers will help physicians better predict disease presence, severity, and prognosis in IPF patients. “Given the fact that lung transplantation is the only therapy that has shown to improve survival in IPF, our test could allow physicians to refer IPF patients for lung transplant at the right time — not too late and not too early,” said senior and corresponding author Dr. Naftali Kaminski, professor and chief of pulmonary, critical care, and sleep medicine at Yale School of Medicine.
Right now, at least six drugs are being studied for IPF. First author Jose Herazo-Maya of Yale School of Medicine said that one of the study’s major impacts would be on drug studies. “Current drug studies do not address the variability in outcomes of IPF patients,” he said. “Our findings may help investigators target patients who are more likely to progress and improve.”
The decreased genes that predicted shorter survival time were mostly related to immune activation. Author Imre Noth, leader of the University of Chicago team, said, “Our result may also shed light on disease mechanisms, by supporting the emerging notion that aberrant immunity may play a role in IPF.”
Other authors are Brenda Juan-Guardela of Yale; Yong Huang, Rekha Vij, Yves Lussier, and Joe Garcia of the University of Chicago; and Steven Duncan, SunHwan Kim, George Tseng, Eleanor Feingold, Thomas Richards, Kathleen Lindell, Jianmin Xue, Kevin Gibson, and Steven Shapiro of the University of Pittsburgh.
This study was supported by grants from the National Heart, Lung, and Blood Institute (HL0894932, HL108642, HL095397, HL073241, HL107172, HL101740, HL080513), the Dorothy P. and Richard P. Simmons Endowed Chair for Pulmonary Research, the Pulmonary Fibrosis Foundation, and the Coalition for Pulmonary Fibrosis

Monday, November 11, 2013

Final Celebration

The final birthday celebration of the year was last night. It has been the most amazing birthday.

After picking up the house, doing the laundry and taking it easy, Michael arrived home around noon for a lunch of fresh crab before we left to Jim's house. We had to watch the 49ers' game with him. Always hilarious. We left before we lost...because we had to get ready to meet Jill and Wayne for dinner.

After changing into nice clothing, we met them at their house then drove a couple of miles up the coast to an amazing Mediterranean restaurant near the harbor. Without our prior knowledge, Jill had pre-purchased a special. I had planned to just have an appetizer for dinner, but no. Three courses. Oh my!

We shared our appetizers which included Wagyu Beef shank ravioli, Monterey sauteed calamari, caramelized onion and eggplant topped with nut-crusted goat cheese and finished with local honey and finally, a Mezza Platter which featured tyrosalata, hummus, tzatziky, savory tomato jam, nazuktan, ensaladilla de piquillo, roasted garlic and olives.

The winner was definitely the onion and eggplant goat cheese.

Now for dinner. We all tasted each other's, I had the last one listed below and brought more than half of it home: New York steak in a bordelaise sauce, amazing pork tenderloin served atop heirloom black risonero rice with a mustard and green peppercorn glaze, wild shrimp in a white wine sauce with a touch of chile and crab, scallops, white fish, calamari and prawns in a fresh tomato and vegetable broth in a wine sauce with a Sardinian bread crouton and garlic aioli. Oh. My. Goodness.

Oh, but wait, dessert. I left some and shared some with Jill. Mine is listed last: Maple pecan tart, spiced pumpkin and mascarpone cheesecake, bread pudding and churros stuffed with caramel dusted in cinnamon-sugar and served with spiced Moroccan hot chocolate.

I do not want to see food for a few days. I am heading to the other rehab to put in extra time on the treadmill before spending the day with mom.

Sunday, November 10, 2013

Birthday Recap


Well, the best laid plans...my birthday was one of the best days I have had in years and it was totally unplanned. That is what made it so very special. After writing in yesterday's blog that we were going to run the ridge south, the phone rang. I ended up speaking with so many people for the next two hours, that it was too late to have lunch after our planned road excursion.

But, the phone calls. Marvelous. And from so many people. I even heard from a dear friend I met when our children were in swimming lessons. William was three-years old. We job shared at the elementary school where Winnie is currently attending, I got the job at the school where I got sick and when they announced they needed an aide in a class focusing on Greek language and history, I recommended my friend Cynthia. Did I mention she was a Greek major and archivist in college? A perfect fit. She morphed into the head of the Middle School when I was the head of the huge Music Program. We used to laugh and say it took longer to get into those positions than we had planned. She is still at the school.  She was head of the Japanese trip that all 8th graders prepared for by studying all things Japanese for three years then staying with families and going to school and touring Japan for three weeks. She was head of placement in private high schools, a difficult process here in the Bay Area. She has taught Humanities throughout her many years at the school. We had not chatted in well over a year. We talked about the health of our mothers - hers is 94 and lost an eye in a fall - and our children. Her children are brilliant. Her husband Robert is a Rocket Scientist. Really. It says so on his business card. One child is still working at the Mothership for Apple and the other is a professor of physics at a top university. Neither of us are grandmothers!

I quickly showered and got into a casual dress with brown tights and we hopped into the car. Leaving the house, a hat I brought along to wear when we put the top down had a piece of Velcro that caught my tights. So, that pretty much determined our day. We headed over the pass to Nordstroms to buy replacements. From there we went to a nice place on the Avenue. Food was fantastic as well as the service. I had a light lunch, Michael had a huge lunch. On the way to the car, we went into Sur la Table to find an apron for Winnie's birthday. Well, Michael had an offered cappuccino and before I knew it, we are now the proud owners of an Nespresso system, with frother. Happy Birthday to me!

From there we walked to the best bakery of Danish goods and bought a Princess Cake. Yes, a Princess Cake. A very small one. With the top down, we drove the pass home and sat in the garden. When we drove up to the house, there was a beautiful vase filled with white roses from William on my doorstep. My first ever flowers from him. I was so deeply touched. He had called earlier, we got caught up with his life, learned he is going to South America for the first time in March and April, having tonsil problems and happy to be home for a couple of weeks.

Dinner was leftovers and we were settling in for the evening when Wayne called. Someone had given him a ton of crab, it was cooked and ready. He asked if we wanted two. Ah, yes please! First crabs of the season. Sport fishermen can catch them now but the real season opens for the rest of us next week. It is a rare treat to have crab this early.

We hopped in the car, drove to their house and watched Wayne clean a ton of crab, chatted with Jill then confirmed plans to have dinner together tonight. Wayne and I share the same birthday. We are going to a great place across from the harbor that primarily features Mediterranean food. Reservations are tough to get. We never go because we never plan far enough ahead. Thankfully, Wayne was able to get us in tonight.

So my birthday week comes to an end after dinner tonight. What a celebration this has been.

Saturday, November 9, 2013

Sixty

I woke up almost two hours later than usual. Guess old people need more sleep! HA! Today, I turn a huge page. I am now 60-years old. Sixty! So very old sounding. Mom and I were talking about what 60 used to look like in the 1950s. The older women all wore the same type of dresses, the style the teacher wears in the movie with Ralphie - A Christmas Story. They all wore their white or gray hair in a "set" that they done at the beauty shop every week but no comb was ever used throughout the week then the next appointment it was "set" once again. Would have driven me nuts. Exercise? No. They did not exercise in gyms or eat organic foods. They did have extra time that most working women just don't have today. They had coffee klatches and volunteered at hospitals and churches and schools and libraries. But, I am so grateful that I had the opportunities that my grandmothers never were given. Never dreamed of.

This 60-year old of today is active, careful with food choices, tech savvy, happily married, thrilled to be a mother (though not a grandmother yet!) and just happy to be alive and out into the world. Michael and I are going to put the top down on the car and drive the ridge through the redwoods to a little town about an hour away. We will find some lunch somewhere and just be together.

That is all this 60-year old wants for the day.

Friday, November 8, 2013

Help to Stop Smoking

Sherman is back! After being absent while doing hand rehab for two months, we were reunited in the pulmonary rehab class yesterday. It felt fantastic! He looked fantastic! We had a ball. I still can't believe that he is turning 89-years old in January. Sounds so old yet he is not. A young soul with a hearty laugh. We laughed and teased each other through the entire class because we were just so happy to be together again.

While we chatted and laughed in the lobby waiting for the class to begin, my friend Joan was checking in for work. She was an ICU nurse where my dad died, led the relaxation classes when I was first diagnosed, substitutes for the RNs in rehab when they are absent and we have just known each other for many years. I haven't seen her in quite awhile. She has a very quiet, calm affect and speaks very softly and always with kindness.

She is the head of the smoking cessation classes at my university hospital in the city and the hospital group of the two hospital where I do my rehab. She is good at it. She has great success helping people to quit smoking. I told her that Michael's twin has been smoking since he was 14-years old, looks ten years older than Michael but has tried all the drugs to help him quit, with no success. (Michael quit cold turkey 32 years ago after William was born.) She told me that most programs and people don't know that there are actually eight drugs to help someone quit and that she uses combinations of those drugs for whatever the patient needs. She gave me her card, asked to have him phone her and she will talk with him to explain why her program will probably help him finally quit. She is a former smoker and understands. She is not aggressive with her patients but kind and supportive. When I told her that I suspected that he already had emphysema and wondered why Kaiser had not ordered a chest x-ray, she told me that to properly diagnose emphysema, they have the patient do full pulmonary function tests to see the specific areas of damage. She said that the first goal will be to help him to quit smoking then she will help him address the other issues.

So, I gave her card to Michael last night. He promised to give it to his twin this weekend. We will see if he takes the first step forward to finally quit smoking forever.

Thursday, November 7, 2013

Running Another Race

It was an interesting day in yoga. Normally, it is the same small group of men and women. A quick hello and we all retreat to our mats. Yesterday, people kept arriving. New people. Experienced people. The studio was not packed but at least three times the normal number of students were present. I was in one corner facing one direction and there was a very young red-haired man in front of me facing the wall to my left. I faced the side of him the entire class.

Now, one is not supposed to notice anything in the class but should focus on oneself. Well, the guy intrigued me. Clearly, he had done this once or twice before. He even did a headstand, with some advice from the teacher, but he just couldn't move. He was stiff. There was no movement through the hips. Is it a male thing? I began to peak at the other men. Nope, their hips moved. Then, I quickly refocused on myself when the thought of how I might be, right at that moment, being accessed by others in the room!

Directly from yoga, Julie covered my grey roots then I picked up for the housekeepers this morning, made Cincinnati Chili for our dinner, took an hour nap then left for orchestra rehearsal. My goal is to get through the pulmonary rehab class today and I plan to fall into bed early tonight.

As I looked forward to my actual birthday this weekend, I was reflecting back to my other birthdays after I was diagnosed. They were difficult. When given just a few years to live, every tick off of another year was a step closer to the dreaded number. When I began to live past the number of years it was suggested that I would probably live without transplants or death, I became even more nervous. Would it happen any minute? I was past due.

Hitting the milestones of 10 years with the disease, celebrating our 40th Anniversary in September and turning 60-years old this weekend, I am celebrating. I feel like I have run through the tape at the end of a long race. I know the next 10 years will bring transplants, if I qualify. Or death, if I don't. Another race begins. I told Michael that with surprise and confidence, I have set the goal of celebrating our 50th together. That was totally inconceivable when I was diagnosed but now, maybe, just maybe, I can finish another race.

Pulmonary rehab today. That is how I am going to fight to be alive for our 50th Anniversary. Working hard everyday.

Wednesday, November 6, 2013

Birthday Dinner

Birthday week has begun. Dinner last night at the #1 restaurant in SF - Gary Danko's - was fantastic. An evening to remember. Here is the web site:  http://www.garydanko.com/  If you are ever going to be in the SF, make your reservations early and enjoy this lovely, special place.
 
The drama began when Michael left work early but couldn't get home. There had been an accident on the pass and he sat and sat and sat in traffic as the time was clicking away on the clock. We were deciding whether I should pack up his clothing and shaving equipment, meet at his friend Ricky's house on the other side, leave a car there then rush to the city. As we were talking, the traffic suddenly began to move. It took over an hour for him to arrive home. By that time, I had his clothes laid out, lights on, the 840 BMW ready so when he hit the door, it took only a few minutes before he was clean, dressed and in the car heading north. At that moment, we took a deep breath and tried to relax.

Blini with Caviar
Soup
But the drama continued as we fought rush hour traffic. We plotted a course through the Mission, down to Market Street, up Van Ness to North Point near the bay. (The drive home was marvelous and very fast without any traffic.) We arrived an hour early. Perfect. Michael thought he would sit at the bar...turns out they now serve dinner to people at the bar. Suddenly, a chair by the door was empty so I sat while Michael stood next to me. I had a cocktail. It was a rare event. Holy cow, it was strong or it could be that I am not used to any alcohol so it really hit me! A Cosmo. A nice safe drink. WOW! It also matched my dress...We chatted with the hostess while we waited. She was from the town just north of us where we lived when we first married. She was a Virgo like Michael and her mother's birthday was also the same as mine. A Scorpio. She and Michael bonded over that!
Sweetbreads
Crab salad

We were seated 20-minutes early. The first taste was a soup with truffle oil. I tiny bit of soup but a nice way to begin. It was followed by a small buckwheat blini with creme fraiche, salmon and caviar. Delightful.

Michael ordered veal sweetbreads with chanterelle mushrooms and fava beans for his appetizer while I went with the Dungeness crab salad with melons, cucumbers, eggplant and Thai Mango dressing.

Bison
Thai Seafood
For dinner, I had the coconut Thai curry with shrimp, calamari, lobster, scallops, scallions and shitake mushrooms while he had roast loin of bison with king trumpet mushrooms, cipollini onions and herb spatzle.

Cheese
Chocolate parfait
Lemon Mousse
Then, we were offered a selection of cheeses from all over the world. We chose four which Michael had with a Madeira wine.

That was followed by dessert! We shared a chocolate praline parfait with bourbon sauce and salted carmel ice cream.

Then came my birthday surprise: A light lemon mousse. Yikes! Along with the mousse came a platter of small chocolates and cookies. We threw in the towel and just couldn't eat anymore. Oh, did I mention that they sent home a breakfast pumpkin coffee cake? It was a spectacular dinner.
Goodies!

Tuesday, November 5, 2013

Birthday First But Christmas is A'Comin'

I just saw my first Christmas commercial on TV - to Disneyland. Oh my. I am so not mentally ready for the holidays. Mom sent her Christmas checks to each of us last week. Every year, we shop for our own gifts, wrap them and then open them in front of her on Christmas day. Everything fits perfectly and we all get exactly what we want. Michael and I begin making our lists around Thanksgiving, negotiate which items we want to buy together, figure out where to buy each item then take one whole day Christmas week to buy everything. The only way I can get Michael to shop all day is to promise a nice lunch with a cocktail involved.

But, today's focus is me! We are going to the #2 restaurant in the country for dinner tonight in celebration of my 60th birthday this weekend. It is going to be a late night! We reviewed the menu online last night and plotted our drive clear across the city. It should take an hour to drive there, hopefully! My to-do list is long today: remove the hair from my face, touch up my toe nails (I still have scabs from where the precancerous spots were frozen so I can't have a pedicure yet), pick out my outfit, withdrawal some money at the bank, get the big fancy ring out of the bank vault, go food shopping at Safeway, take a nap and be ready for Michael when he screams home, quickly changes his clothes so we can be on the road by 5:45 for 8:00 reservations. He wants to have time to settle in, have a drink at the beautiful bar before the dinner and just enjoy being in the city together.

My 60th birthday. Years ago when I was diagnosed, I told Michael that my goal was to celebrate our 40th Anniversary together. That was last September. My new goal is to be together for our 50th. Never did I every expect to still be alive ten years after feeling the effects of Hypersensitivity Pneumonitis. Ten years. I thought I would be living on supplemental oxygen 24/7, horribly fat due to the prednisone therapy and miserable being confined to my home. Here I am: the fittest I have ever been in my life, supplemental oxygen just needed to workout and sleep, happy, out in the world and living well despite having a fatal diagnosis. Tonight will be a celebration of still being alive. And living well.

Monday, November 4, 2013

Bittersweet Birthdays

It is very quiet and cold this morning as we go into my birthday week! The actual birthday in not until next weekend but the big celebration will be tomorrow night.

This morning, I am meeting mom for two appointments at the eye clinic, we'll have some lunch before taking a quick tour through Trader Joe's. We will have a non-stop gabfest.

Around my birthday, my mind always drifts back to 1997 when my dad was in ICU between October 13th and November 15th when he died of elective same day surgery. We always think of him on the 15th, we phone each other, we check-in with mom then we all pause again on the 25th, which was his birthday. It was hardest when his birthday fell on a Thanksgiving. My heart still hurts. The story is here: http://livingwellwithabaddiagnosis.blogspot.com/2010/07/grief.html 

When he was in the hospital on my birthday, my mom, Uncle Bill, Michael, William and I went to dinner together. My wish was that Dad would be well enough to leave ICU. The next morning, he was in a room and was awake for the first time. We thought he was going to make it. After he died less than a week later, I was numb for a long time.

So, my birthdays have always been a bit bittersweet since his death. We will celebrate with a toast to him tomorrow night. I still miss him so much.

Sunday, November 3, 2013

Recipes for the Week

Eggplant and Chicken Parmesan
We have been awake since 3:00AM, really 4:00AM before the time change last night. The F1 race from Dubai is on live - hate all the commercials! - while we are having coffee. The house and yards are in good shape, the sheets are going into the wash this morning, they and Michael's dress/work shirts will be ironed before I go into town. I need to hit the organic market for almond flour, lunch and something to go with the Pizza Chicken for dinner tonight.

Here are the recipes for the week for those of us on prednisone therapy. They are primarily 3-4 oz of protein and non-starchy vegetables. This week, I have added eggplant, which is not normally on my diet. I love it but rarely eat it. My portion will be tiny!

Eggplant and Chicken Parmesanhttp://www.genaw.com/lowcarb/eggplant_chicken_parmesan.html

Cincinnati Chili: I cut the recipe in half for 4 servings. I serve Michael's over pasta but I have mine straight. Delicious!
http://www.genaw.com/lowcarb/cincinnati_turkey_chili.html

Low Country Shrimp: I will serve this over rice for Michael. http://www.lowfatlifestyle.com/entrees/entreerecipes/lowcountryshrimpII.html#.UnZVcyjFX6d

Deep Dish Pizza: Good for both breakfast or lunch.
http://www.genaw.com/lowcarb/deep_dish_pizza.html

Saturday, November 2, 2013

Happy to be 51%

Formula 1 race from Dubai on Sunday with qualifying this morning, sheets need washing, grass needs a quick cutting, pots need watering and a check needs to be deposited into the bank. That is the list for today. Rather quiet! I need a slow day to recover from the past week. Both of us never fully recovered from last Sunday's lunch in the city. We dragged through the week.

My mom has fully recovered from her pneumonia and, she thinks the contributing factor is her pacemaker, is full of energy. Busting! She looked fantastic and happy yesterday. We had errands to run, lunch of Russian Cabbage soup then a final visit with our favorite doctor who did the surgery to stop her tears from running down her cheeks. Success! We had fallen in love with him through the process. Yesterday, we exchanged emails and phone numbers. He has small children, they have fallen in love with our little town, born in Egypt, father was a banker, raised in London and New York and he is now the head of the department at a leading university hospital in California. He misses is parents (who are younger than I am!) and his sister and her family. He looks like my brother, even has the same affect and we teased him yesterday that he must have some German/Norwegian blood in him! We talked about being Arab in today's world though, as he pointed out, he nor his parents look "Arab." It was interesting. He is married to an Asian woman. A Scorpio woman. Our birthdays are only five days apart. Takes a strong man to have the respect of a Scorpio woman. It would be a pleasure to show them around our area.

After the pulmonary function test two weeks ago, I noticed that my mind drifts back to the results. Mentally, I am so pleased to have 51% lung capacity instead of 48%. A small difference, I know, but when I was in the 40s, it was always on my mind that I was getting too close to the required 40% to begin the lung transplant process. I am not ready. Somehow the 51% has made me more relaxed. Silly, I know, but somehow comforting.

Friday, November 1, 2013

Halloween

It was a very long day. It was so overstimulating that sleep didn't come easily last night. I did the required two-hour exercise test to meet the Medicare standards for supplemental oxygen, which was a lot of work! I was done but it was just the beginning of the day. Since my appointment with Dr. K. was six and a half hours later, I went for a walk to waste some time. It was a long walk past stores and restaurants in Natalie's old neighborhood. After wandered through Golden Gate Park, I walked back to one of our favorite restaurants for lunch and messaged a photo to Natalie, who became nostalgic about all the time we spent there together before and after Winnie was born. After an hour, I started the long uphill walk back to the hospital campus.

 I love old churches. The smell and the light streaming through the stained-glass windows and the feeling of peace in old churches brings me calmness and comfort. On a corner surrounded by homes, there suddenly appeared a very small neighborhood church. It was intriguing. The door was opened so I went it to investigate. There were about ten people there, I sat in the back and was just ready to leave when suddenly, a Capuchin priest came out to the front and began a Mass. Since being sick, I have not been able to attend Mass because of the possible exposure to illness by the surrounding people. But, there were now about twenty people present, no one was coughing, so I stayed. It felt marvelous. I even went to Communion. Afterwards, I asked an older woman about the church, she told me it was built in 1919 and used to be a Lutheran church. There was renewed lightness in my step as I worked my way up the next several blocks.

Sitting in a food court looking onto the street in front of the big hospital, I watched all the Halloween costumes and had a few conversations while having a diet coke. A father, who's 2-month old son had just been admitted from the Reno area, sat next to me to eat his lunch. His wife was with their baby, he was eating quickly so she could break away for some food, too. I tried to engage him in funny and interesting conversation so he could relax from his major worries for a few minutes. We hugged before he left. I think I helped just a little bit. Working my way to Dr. K.'s building, I read for another hour before arriving to the appointment an hour early.

Finally, we met to review my pulmonary function tests, exercise test results, issues with a prescription, notification of having a flu shot and information that I had twenty precancerous spots frozen off my arms and legs. After listening to my lungs, she mentioned that I was going to need lung transplants. I replied that I was surprised that we had been able to put them off for so long but, in my heart, I am not ready. I am not sick enough but after this last crash, I now realize they could be needed any time. It will come after a quick downturn then the process will begin. Scary.

Winnie, Oliver and Natalie arrived to the house just about the same time I arrived home from the city! Batman and Japanese dressed girl (Winnie has been learning to read and speak Japanese) had a piece of the cake and ate some candy from their goodie bags before Ethan arrive and the entire family went out to trick-or-treat together. Michael was so entranced by the kids, he took photos and videos. They are hilarious and whip-smart. After they left, I fell into bed and twitched my way to a restless sleep. It is going to be another long day today. Mom and I have a long list of what we need to do plus a doctor's appointment for her. My plans for the weekend? Nothing. Simply nothing.