Living Well with a Bad Diagnosis - Lung Disease

Thursday, March 31, 2011

Another Back

Michael’s mom, Mary took a hard fall and has two hairline fractures in the exact same spot in her back as my mom. So ironic. So sad. So painful.

Michael is feeling responsible that he jinxed her because he asked about her health just hours before the fall last Sunday.

What is so difficult for us is that we know what she will be going through, having watched my mom for over a year try to find some relief from the pain. In the emergency room on Tuesday, they told her she would be in pain for a while until it healed. Well, dear reader, we know that an older woman with very bad osteoporosis doesn't heal like other women. We know that she will need rehab. We know that she may choose surgery. We know that the very dangerous surgery may kill her. We know that she is going to be in unbearable pain. We know too much. We feel just horrible for her.

Wednesday, March 30, 2011

Worried About Sherman

Yesterday was my last day of the rehab class before our road trip. I am growing concerned. Sherman is not breathing well. In rehab, he is cutting down on his time on all the apparatus. That is not a good sign. I am not sure the RN has noticed.

He finds he is depending on supplemental oxygen more and more. He says he just can’t breathe and puffs so hard after exertion. After nudging him to go to the doctor, she didn’t seem to be concerned. I guess this is part of the process of Sherman’s disease. Emphysema. Horrible. If only people could see how he has degraded so quickly, they would never smoke.

I was told that if one smoked, there is a chance of getting cancer if one has a genetic pre-disposition. But, there is a 100% chance of getting emphysema. It isn’t pretty. It is ultimately what killed my dad, too.

Smoking was so popular during WWII, which was Sherman’s and my dad’s generation. What is our excuse now? We know the long-term damage it does to the lungs. We educate our children on its dangers. There are warning labels on each pack, for heaven’s sake.

Why do people still smoke?

Tuesday, March 29, 2011

Future Bassist?

As I have mentioned in other blogs, string bass players have a bad reputation in orchestras. We are the naughty ones. We tend to play too loudly. We talk too much. We are the fun ones. When featured artists travel through, they often hang out with the basses. We love our naughty reputation.

I am usually the first person to arrive for the orchestra rehearsal each week. I like to tune up before the others arrive so I can tune easier. Before us, there is a dance class. I had begun to talk with the teacher and some of the girls. It could be awkward if I just stumbled into their space before they were ready to quit. I wait. Smile. It just makes the transition easier.

Last Wednesday night, one of the young girls didn’t leave as quickly as all the others. Her teacher and I were talking when she asked about my bass. I told her that I was probably the only girl she would ever see playing one. It is mostly played by boys and that is one reason why I LOVE playing it.

I asked if she wanted to try to play it.

She replied that she was afraid of breaking it and I told her that was impossible. I quickly unpacked it and had her hold it properly by laying the edge against her belly. I remember the first time I felt the vibration of the strings with my body. It felt alive. It is a powerful instrument.

She brightened. I gave her the bow. She played it on the strings.

She thanked me and took off. Her teacher told me that she takes dance lessons five days a week. I know kids. I know that this kid would fit well into the bass reputation. I mentioned to the teacher that basses are the naughty ones in the orchestra. She laughed and said this girl would fit right in! I sure can spot them!

Maybe this was a beginning of a future female bassist?

Gawd, I miss kids.

Monday, March 28, 2011

Things To See


The primary intent of the upcoming road trip is to attend a wedding. But, we have other plans along the way:

We will visit Elvis’ Graceland in Memphis. We missed it last time we were through Memphis and I have regretted it ever since. Michael does the best Elvis impersonation ever so I have a feeling I will be hearing it a lot this trip.

I fell in love with the Mississippi River in New Orleans. It was a living, breathing entity. I understood for the first time why books feature it as a main character and song are written about it. While in Memphis, we are going to take another river boat ride on the mighty river.

As a musician, I really want to see Beale Street, which is also in Memphis. It’s the Home of the Blues and the birthplace of Rock ‘n Roll. So historic. After jazz was born in New Orleans, there were jobs in Kansas City then the trend headed to the speakeasies in Chicago. We are going to find some good music in Kansas City. As well as BBQ!

Bourbon sipping in Kentucky! We are visiting the Jim Beam Distillery on our way to Louisville then we will head to the Buffalo Trace Distillery near Frankfort on our way to Tennessee. We will be buying Christmas presents and other gifts for people at both distilleries.

I am so excited to travel over the Appalachian mountains. I hear they are so beautiful and I have read so much about them.

My toes have never touched the Atlantic Ocean. This trip, we are heading to the coast of the Carolinas. I guarantee the toes will hit the water!

We want to walk the famous cemetery in Charleston, South Carolina. We want to walk the historic downtown area. We want to eat low country food.

Attention Paula Dean:  We are going to join you at your Lady and Son’s restaurant for lunch in Savannah, Georgia even if we have to wait in a long line.

Attention Gladys Knight:  We are going to join you at your Chicken and Waffles restaurant in Atlanta because, according to William, you have the best in the entire country. It is the only reason we are going to endure Atlanta. Chicken and Waffles.

Mostly, we are excited to see my brother and his wife, my aunt and cousin, Michael’s sister and her family, my friend Christien from my old school where I got sick and Michael’s mom in Las Vegas.

I am counting the days until we begin our journey. We are into single digits!

Sunday, March 27, 2011

Portable Oxygen

This is going to be a bit vague. I don’t want someone to lose his job.

I have a continuous flow portable oxygen system ready to take on our trip that cost me nothing. Zero. Zip.

I was whining about how my oxygen company made it impossible to rent the system. I guess I whined to the right person. There was a pause on the line. He told me he would call me back.

He worked magic. Apparently, he had the right portable oxygen system in his office. Off the grid. It was sent to his office for a very high level politician who ended up not using it. It is new.

I picked it up a few weeks ago and used it at my mom’s when I had to stay overnight after her back procedure. It worked like a dream.

So, after the trip I will return the system and drop off a thank you present. He saved me almost $350.00. I think he should have at least one good bottle of bourbon from one of the distilleries we will be visiting. Maybe more!

Saturday, March 26, 2011

No Flying


More mishaps. Sleepy controller at Reagan Airport in DC. United mechanic gave approval to pilot to fly a damaged plane. Grandmothers being manhandled before boarding. Expensive long-term parking at the airports. Crying babies. Drunk passengers.

I am almost grateful that I am not allowed to fly by doctor’s orders.

Yes, it is faster. But, isn’t it sometimes about the journey?

We have become better travelers through experience. We have learned to totally avoid fast food restaurants and interstates. There is nothing like a little small town café for breakfast in the middle of nowhere.

One thing we have discovered, coffee is bad out there. On our last trip two years ago, we never found a good cup of coffee. Our very first trip cross-country in 2000, we couldn’t find a good salad. All that was offered was a hunk of light green lettuce covered heavily in a mayonnaise dressing. When we headed out again in 2002, that had changed. We found fresh greens available with light dressings. Hopefully, we will find good coffee on this trip.

So, I can’t fly but I think this journey will be filled with interesting experiences that we will remember for many years.

We are going on an adventure.

Friday, March 25, 2011

Build the Ark


Rain. It has been non-stop here for almost two weeks. Puddles have formed. We are under a flood watch. There are trees downs and small landslides. The earth is saturated.

"Children, little children, the Ark is gonna leave.
So step aside or take a ride,
It's raining, I believe."

We are trying to get everything together for the road trip. Time is running out. The yards need to be neat and mowed before we go. I think they are predicting this series of rain should end Monday. Hopefully, that will allow it to dry out enough to mow it just before we leave.

What really worries me is that we will be following this storm eastward. Oh my.

I have had enough of rain. Really. Stop for a while. Please.

Thursday, March 24, 2011

Not Another Cold?!?

I think I have it stopped it in its tracks. I can’t begin a cross country trip with a cold. No! I refuse!

We checked out a new market in the town just north of us last Sunday. It was not great. It just didn't feel right. Some of the products looked great, some of the prices were lower but the far majority were over priced. While strolling through the aisles, people kept coughing on me. Even Michael noticed all the sick people spreading their germs.

Suddenly, it began in Trader Joe’s on Monday morning. I must have sneezed forty times and noticed many people moving quickly away from me! I hurried home and took my first Airborne of the day. Many more followed.

So, into anti-cold action I went. Besides the Airborne all day, I rubbed the bottom of my feet with Vick’s Vapor Rub, put on old socks, rubbed a little of the Rub on my chest, took a pill that is a decongestant and antihistamine and hopped into bed. I don’t remember anything else. I was in dreamland.

I awoke with no cold symptoms. I repeated the above recipe to stop a cold again the next night and again last night.

It seems to be working. Fingers crossed.

Wednesday, March 23, 2011

Dancing Between Raindrops

The yards were a mess. We have had non-stop rains along with the first ever tornado warning for almost two weeks. Because of the storms, we even missed seeing the huge moon.

On Monday, I got home from the other rehab and grocery shopping to discover that the expected storm had not materialized. The rain had stopped since Sunday afternoon and the sun was shining! What a treat! What an opportunity!

After lunch I ran out to quickly cut the front lawn. While there, the clouds began to rolled in. It would be a race. I finished and packed all the gear up then waited for the rains to begin.

What a surprise. They threatened but it never rained. So, after being sure I would not get wet while cutting the back lawn with my electric mower, I headed to the back yard around 5:00PM. I made it! Within the hour, it began to rain again.

I felt like I was dancing between the raindrops.

Tuesday, March 22, 2011

Diet, Exercise and Lung Transplant Process


I realize that last year was truly a remarkable year. All of the loose ends were tied up. Everything that needed to be said, was. Relationships were all mended or settled. Such a fulfilling year.

This year, the focus is definitely on my diet. Seems simple but this is really the first step to the lung transplant process. It will almost take the full year to get to the weight I want to be, though the doctor doesn’t think I can get that low. We’ll see. For the process to begin, I need to weigh between 25-30 BMI (Body Mass Index). I just have a few pounds to lose to meet that goal but I want more. I don't want to worry about bumping back into a disqualifying weight. So, when we return from our road trip, the three months of the doctor supervised liquid diet will begin. 

In 2012, the first part of the year will begin the six month qualifying process of qualify for the lung transplants. They usually begin the process with an internal exam of the heart. I am so happy that I have been doing such extensive aerobic exercising for the past six years. I have a good heart. I just hope it is good enough!

So, next year is the culmination of the past six years of rehab and moving forward with my process of living with the disease. The testing will determine if I can even have lung transplants when I need them, which hopefully won’t be needed for many more years. Remember, only 50% of transplant patients are alive after five years. Lung transplants are not for a longer life, they are for a better quality of life. 

So, after I qualify or if I fail, I think we should plan another trip to look forward to while going through the process. Maybe we will take a run to Seattle to visit William and Kimberly. That would be nice.

Monday, March 21, 2011

Final Farewell Tour #2

Photo of Medieval Madness pinball machine 
like the one in Betty and Chip's living room

Our 6,400 mile road trip begins soon. We really didn’t have much time to prepare for this last minute trip but we are so excited to just hit the road. Michael mentioned the other day that we need to push ourselves to do more road trips while I am still well enough to handle the traveling. Good point.

The medications, portable oxygen system, maps, reservations, wedding clothing are all ready to go. I just washed and ironed our traveling clothes and they are on William’s bed ready to be packed.

We still need our haircut and my nail, toenails and eyebrows done. We still have dentist and glaucoma doctor appointments. We also need to get cash from the bank. We will travel with $2,000 cash to cover gas and food and we will charge all the hotel stays. We are hoping the price of gas is cheaper than here in California. Ouch!

We are also bringing the most amazing local jam with us as presents to everyone we visit along the way. My brother also requested Dried Monterey Jack Cheese – something they can’t get in New Mexico. We will be spending the second day with them at their home playing pinball and eating chicken topped with the famous New Mexico green chilies. It will be fun just to spend some time with them.

So, we begin the final countdown to another road trip. Our Final Farewell Trip #2. I hope there will be many more.

Sunday, March 20, 2011

UP

Okay, I was little late to discover this movie until mom loaned me her DVD of “UP.” What a movie. I was crying within a few minutes after watching Carl and Ellie meet and a quick and well done fast forward to her funeral. I usually avoid movies about death and dying but this was so sweet. So tender. And, I think Carl reminded me a bit of Michael.

The Spirit of Adventure.

When I was away overnight with my mom, I got home to discover that Michael had slept on the couch. He didn’t want to sleep in our bed without me. Thirty-seven years together and I can count the nights we have been separated on two hands. The dishes were still in the sink but the rest of the house was picked up. He did a good job.

I think that has been the hardest thing for me to deal with – the thought of dying and leaving Michael alone. I hope his memories bring him comfort after a while but my heart just breaks thinking of him alone like Carl.

“Thanks for the adventure, now have a new one.”

While watching “UP," I was hoping that we all could live life as colorfully as Kevin the Snipe and have a dog like Dug.

And he had to let the house go. And begin again.

And I sopped again at the end.

PS Fenton’s Creamery is a famous landmark. 226 Piedmont Ave., Oakland. Swing by when you’re in town.

Saturday, March 19, 2011

More Mom and More Doctors

Just a few days have passed since I drove mom home on Tuesday. Friday found me making a return trip to her house for an early morning appointment about an hour from her home. A lot of driving for me in one day.

The doctor was going to “zap” the nerves around her broken vertebrae to deaden them. No more pain! No more pain medication! No more upset stomach from the medication!

He made no guarantees, as this set of “zapping” was a trial to see if it worked. If she has some relief from the pain, they will schedule the more extensive and painful injections that should last a few years.

After they got her ready, it took under 10 minutes and she was done. Afterwards in the car on the way to lunch, she mentioned that one of the injections hurt and she said “ouch” out loud. I said, “Bingo! I’ll bet that was the spot!”

Well, since the injections she has had NO PAIN. Success! This series will only last two to seven days but she is so enjoying the relief from the pain. She will phone the doctor to report the wonderful results and get on his calendar for the long-term procedure.

I am glad I spent the night with her. We played cards and went to dinner at Sizzler, which was surprising! I had their smallest steak, the steamed veggies and a very small salad of good vegetables. Perfect.

We also never stopped talking! I love to be with her. I am so lucky.

Wednesday, March 16, 2011

Mishmash



Mom – We had fun but she didn’t say anything about my obvious weight loss! I finally mentioned it and she was so relieved! She didn’t want to intrude and say anything! Funny. We had fun, I beat her at our favorite card game and we never stopped talking.

The Wedding – My niece Shelley found her venue. It is in a lodge in the Sierra foothills. Beautiful setting. We will be spending the night there after the wedding. The date is set for May of next year.

Wedding Clothing – I have been thinking about what to wear to her wedding as we bought mom’s shoes this week. She already bought her outfit! We are people who never procrastinate! Before my aunt Rita died, she gave me a beautiful turquoise belt that is very impressive and well over 150 years old. It was my grandfather’s. The silver was silver dollars pounded down and used as a base for the turquoise. With my weight loss, I am going to try and find a dress, probably black, or a skirt and blouse to bring the total focus to the belt. Thought it would work well with the lodge setting.

Winnie – I am dropping in on Winnie swimming class this morning. I haven’t seen her swim in over six months and hear she is beginning to swim the lap of the pool. Amazing. Brother Ollie is 9-months old already! Such a good baby.

Rehab – I have nothing to read! Horrible but I will listen to a podcast I enjoy. I listen to RISK and the MOTH PROJECT. I can hardily recommend both. I missed working out Monday and Tuesday because of mom’s visit. It will feel good to get back to it.

Weight – Usually after I have a weigh-in with the nutritionist, I don’t feel any weight loss for the next two weeks then suddenly, I feel it. Yesterday, I felt it! It is going to be a good weight loss this month before we leave on our trip.

Trip – We have made all the reservations and so ready to hit the road. We just finished some work on the car, including a new windshield. We are beginning to gather things and putting everything on William’s bed. So much to think about – medications, canceling mail and housekeepers, cutting the yards and watering at the last minute, and giving all the instructions to Natalie who will water and watch the house for us. Also, we made appointments for hair cuts for both of us and having my nails and eyebrows done just before we leave. And so much more!

Bored – Other than all that, I am a bit bored. Maybe that is a good thing!

End of Mishmash!!

Tuesday, March 15, 2011

Mom, Doctors and Taxes

Michael drove my mom to our house on Sunday so we were ready for early morning appointments on Monday. We were meeting with her lovely Dr. C. at her university hospital to see if the physical therapy made any improvements to her quality of life. She has made remarkable progress. She is in less pain.

The doctor said that she is much stronger and the muscles around her broken vertebrae are now offering so much more support. She will return to rehab for more! She does not want the surgery.

We stopped for a quick lunch before our tax appointment with Barbara F. I had already dropped mine off but she likes to review mom’s with her because of the trust and all the accounts. We always have a ball chatting with her. She looked so healthy – she had some scares last year.

Home for dinner, we had  the famous Ancho Macho Chili, mashed red potatoes and cole slaw. There was enough for leftovers for her second night with us. She loved it.

I am driving her home this morning.

Monday, March 14, 2011

Just a Note

Just a note today. Mom is here for a quick visit. More on that tomorrow.

Sunday, March 13, 2011

Secret Diet



I am always skeptical when people announce what they are going to do. Often, they never follow through to really do what they say. Good intentions….

So, for that reason, I have kept my diet a secret from everyone in the family except Betty, Chip’s wife. Initially, I guess I didn’t want to tell everyone in case it just didn’t work. Now that I have lost 18 pounds, I just want to keep it a surprise. Until when? Thanksgiving? Christmas? Maybe.

The cat may be out of the proverbial bag when we visit Michael’s mom on the final leg of our road trip.

I have said nothing about the diet or weight loss to my mom either. She is coming in for a doctor’s appointment and to meet with her tax accountant today. She will be shocked.  I think it shows so much in my face and my clothes are truly baggy. I have already bought a  new smaller pair of jeans. Michael laughed when I demonstrated how I could pull my jeans off without unbuttoning them. And I have hips!

Buying clothing is going to be a challenge. As I will be losing a lot of weight in a short period of time during the liquid diet phase, I really don’t want to put any money into temporary clothing. The workout clothes will be fine. Big is not horrible for the gym. But, I just bought a pair of Not Your Daughter’s Jeans at Nordstrom’s a full size smaller and a leaner cut than my current pair. They will get me through the road trip.

When my body finally finds the weight it likes, we will head to our favorite store – Nordstrom’s at South Coast Plaza in Southern California – and we will buy the basics. We did that many years ago and those clothes were worn for well over a decade. Good quality basics: jackets, slacks, skirts, blouses, and sweaters.

If my math is correct and if my body cooperates, it should all come together around my birthday in November. Now that is something to look forward to.

Saturday, March 12, 2011

Feeling Like an Adult

We really have been doing nothing in the evenings. I didn’t realize how little we are driving after dark until we went out to shuffle some cars recently. I drank in the lights at the harbor and just the beauty of the bright stars. We live in such a rural area, the stars are so much more visible than in other communities.

Thursday night, friends of Michael’s came to the house for cocktails then we drove down the coast to the restaurant near the goat farm. They had been there years ago and really wanted to take us to dinner as a thank you for some things Michael did for them. We had tried for the past three weeks but one than the other had a cold. We had to explain that I couldn’t be near people who are sick. So, we rescheduled, everyone is well so the date was set!

The drive along the coast was spectacular and we were able to see it before the sun set. Lovely. We arrived on time and happy that the small road into this very tiny town was passable, often not the case during the rainy season.

A bit nervous about my diet, I ordered the grilled fish and steamed vegetables. It was so fresh and delicious I didn't miss the fresh baked hot sour dough bread!

I found myself looking around the restaurant at all the couples and some families and suddenly felt like I was an adult out in the world with no problems having a nice evening with friends. It was a good feeling. It felt good to chat about things other than my illness, in fact, it was never mentioned.

Just a lovely evening out with friends.

I felt like a real adult!

Friday, March 11, 2011

Earthquake and Tsunami



A very large 8.9 earthquake shook Japan last night. The Hawaiian Islands are feeling the effects with large waves and threats of tsunamis this morning as I write this blog.

We love the coast. We love living near the ocean but it also comes with some risks.

When I checked my e-mails this morning, there was an evacuation notice from the county. A bit scary. Here is what was written:


A strong earthquake has struck the Pacific Ocean and a Tsunami Warning is now in effect for California.  These dangerous waves or tidal surges are expected to reach the County between 7:30 and 8:00 AM Pacific Standard/Daylight Time.  Tsunami waves may come ashore for several hours.  

All beaches and low lying coastal areas should be evacuated immediately.

What a lovely way to wake up! We sit a bit higher than the specific places listed in the warning that are to be evacuated immediately. We are watching and waiting. The latest information is that it should hit our coast around 8:15AM. I am will be here. They just showed on TV the long line of traffic evacuating to higher ground.

Keep your fingers crossed that it will not come too far ashore.

UPDATE:  The city is a ghost town. Everyone has fled to higher ground. The waves are hitting right now. Not big. Not bad. So, I think all is well. 

Thursday, March 10, 2011

March Nutritionist Visit

Photo of 18 pounds of butter

I found myself yesterday making the long trek up to the hospital deep in the city for my monthly meeting with nutritionist, Mr. B. I also took the opportunity to run across the street to the hospital for a blood draw to check my fasting cholesterol and see if I have any pre-diabetes markers for the liver clinic. Afterwards, I grabbed a cup of coffee and munched on my string cheese. Breakfast!

The waiting room to see Mr. B. is always interesting and this time, it didn’t disappoint. I chatted with a few people but I was clearly the smallest person in the room.

The good news:  I lost 7 pounds for a grand total of 18 pounds in ten weeks. I am the weight I was when I had the lung biopsy. All the prednisone weight is gone. Now I am going into long uncharted territory weight-wise. Exciting.

We reviewed the foods I have eaten during the past month. The Crustless Quiche was a hit and he made a copy of the recipe for his other clients. I asked about sunchokes as I have seen them sliced very thinly and baked into what appears to be like a potato chip. No! They are really high in carbs. Nuts! I also found some wonderful spaghetti noodles made with a weird flour and tofu that is really delicious. No cooking. Just run it under hot water. I brought the wrapper with me and he approved it.

We also made arrangements for the supervised 3-month liquid diet that I will be starting after our road trip. Three months of no food. He estimates that I should lose 30 pounds. Imagine, 30 pounds gone. Remarkable. We are going to meet five days after we get back to learn how to prepare the shakes. I will have to actually purchase it at the other hospital site and it will run about $400.00 per month. Well worth it.

My personal goal is not to gain any weight on the road trip. This means being really careful when we eat BBQ and other southern favorites. I am determined not to put any weigh back on. Determined!

On my vow to wear something new or too small before the diet to Mr. B. appointments, I wore a beautiful tweed jacket from Coldwater Creek –on sale –along with the new shoes from the previous appointment. I also wore the smallest pair of pants in my closet. They fit. It is a miracle. I felt like a million bucks!

Wednesday, March 9, 2011

Tea in the Afternoon


Since my diet, I have been enjoying a cup of hot tea in the afternoons, usually around 3:00. Better than eating something…

I can’t have any caffeine so I have been exploring the herbal teas with gusto! My very favorite is the decaffeinated Good Earth original blend. It is spicy and just delicious.

As an extra little goodie, there are words of wisdom printed on the tab of each tea bag. Yesterday’s was:

Success is to be measured not so much by the position 
that one has reached in life
as by the obstacles which he has overcome.
Booker T. Washington
1856-1915

I smiled. Thank you, Mr. Washington. Brilliant. That is exactly way I feel trying to live well with a bad diagnosis - jumping over the obstacles and keep moving forward.

Tuesday, March 8, 2011

Proud Mother, Once Again


During the rehearsal for the Dixieland Jazz concert, one of the book club members who had been to our house and had seen William’s gold record, was also playing with the group. Her daughter was playing trombone. Patty mentioned that her daughter and my son were the same age and maybe knew each other in high school. I told her that he went over the hill to Catholic schools after elementary school.

The daughter asked where he lives now and what he does for a living. I told her that he works for a major indie pop group as their recording and sound engineer. She asked who? Her mom then said, “You probably won’t know it!” So, I told her the name of the group. The daughter’s eyes lit up and she said, “Really? Mom, they are huge. They are really famous!”

Made me feel good. Made me feel once again so proud that our son went out and damn near starved for his craft. His success is his own. He earned it.

Monday, March 7, 2011

Fat Tuesday on Sunday

Several of the orchestra members asked me to play some Dixieland Jazz with them in celebration of Fat Tuesday. They were performing it after the morning services at the Methodist church in town on the Sunday before Fat Tuesday - yesterday. The church itself is a small sweet historical building. They recently built a community center and a separate building to serve food.
We performed in the building where coffee and brunch was available after the morning services. They also wanted me to play the new church-owned white string bass. White. That’s different! Hmmm.

So, off I went to the one rehearsal on Saturday morning. There was actual written music for our little bunch of musicians performing on trumpet, clarinet, trombone, guitar, banjo, drums and me on the shockingly white bass. The poor thing just had new strings put on it and was having difficulties staying in tune.

I do have to say that the musical arrangements were wonderful and I loved all the “walking bass” parts. But, as a classical musician, my finger was sore from all the picking!

For the performance on Sunday, we played Basin Street Blues, Darktown Strutters Ball, Five Foot Two Eyes of Blue, When the Saints Go Marching In, and Won’t You Come Home, Bill Bailey. We took all the repeats and played the line up three times.

Everyone loved it and there is talk of a repeat performance for the seniors group later in the month.

I had invited Natalie and Winnie to join me, if they could. I thought this short concert was a perfect venue for Winnie to see live music - she could dance, talk, sing and no one would notice. She ended up sitting at a close table and just staring at all the action. She loved it. Her first live performance. There also were Mardi Gras beads, cookies, King Cake and Rice Krispie Bars involved. I told her about the hidden baby baked into the cake. The person who get it has to buy the cake the following year!

All in all, a huge hit! 

Sunday, March 6, 2011

World’s First Artificial Airway Transplant in the Lungs


I was poking around the Internet and found this on March 3rd. Amazing. Well worth your time. A 78-year old man was given a section of an artificial airway in order to save a lung with cancer. Remarkable. Even more remarkable is that since they used his own aorta tissue, he did not need anti-rejection drugs. So interesting. Here is the article:

Lung cancer: 'Artificial airway' transplant is world first
Mar 3 02:42 PM US/Eastern

French doctors said on Thursday they were delighted at a medical first in which a 78-year-old man was given a section of artificial airway to save a lung afflicted by bronchial cancer.

The bronchi are the main tubes for taking air from the trachea to the two sides of the lung.

In cases of early, non-metastasizing cancer of the bronchus, surgeons typically remove a whole lung, as well as the bronchus itself, if the tumor is located in the centre of the organ.
In more than a quarter of cases, this leads to death within three months of the operation.

A team led by thoracic and vascular surgeon Emmanuel Martinod removed the diseased part of the bronchus and grafted a replacement, thus saving the lung.

The transplant, carried out in a three-hour on October 28 2009, entailed a small metal tube-shaped frame, or stent, which supported a section of artery taken from a deceased donor and frozen in a tissue bank.

The advantage of aortal tissue is that it does not require anti-rejection drugs, which are not recommended for cancer patients, whose weakened immune system is less able to combat infection.
"The patient is doing very well," Martinod, a professor at the Avicenne Hospital in eastern Paris, told a press conference.
"He needs regular monitoring, but he's doing fine, he's walking, he goes to his house in the country."

The patient "has the respiratory capacity of an 80-year-old man with a history of smoking," he said.

Alain Carpentier, a professor of bio-surgery who is also president of France's Academy of Sciences, said the tissue regrowth was "magical."

"The bronchus is regenerating," he said, explaining that the transplanted aortal tissue had become a "matrix" which was now being recolonised by bronchial cells.

They were rebuilding the epithelium, a mucal lining of the bronchus that cleanses the airways.
The surgery culminated 10 years of research.
Between 20 and 30 similar operations are being scheduled in an investigation to see whether the transplant should be enlisted in routine surgery for treating this form of lung cancer.

Saturday, March 5, 2011

Dying Well

I have been trying to figure out how to write this: I don’t want to die in a stupid way.

For example, I recently read about a woman who was killed by her own car while it was being repossessed.   http://losangeles.cbslocal.com/2011/03/01/woman-crushed-by-her-own-car-during-repo/

Or die fallen down and hitting my head. That happened to a sweet woman my age in our neighborhood who died two days later.

Or die in a single car accident.

Or die from sunstroke.

Or die, well, just in a stupid way.

I hope I die gently in the night sleeping next to the love of my life. I guess that is probably the hope of everyone. A simple death. A pain-free death.

I can only hope.

Friday, March 4, 2011

Past Grant Awards - Coalition for Pulmonary Fibrosis

Yesterday’s blog was about the new research grants that are now available thanks to the wonderful organization, The Coalition for Pulmonary Fibrosis (CPF).
I thought you, dear reader, may be interested in the specific research that has previously been funded through CPF and the American Thoracic Society (ATS).
Here it is thanks to CPF who e-mailed this information to me!
Past CPF/ATS Partnership Awards, through 2008, were granted to:
• Sonye K. Danoff, M.D., Ph.D., of Johns Hopkins University: VEGF: Marker or mediator of lung injury in pulmonary fibrosis?  Her research is currently testing the hypothesis that locally elevated levels of vascular endothelial growth factor (VEGF) in the lungs of patients with autoimmune pulmonary fibrosis contribute to disease progression.
• Andrew Tager, M.D., assistant professor at Harvard Medical School in the Pulmonary and Critical Care Division and at Massachusetts General Hospital.  His study was: (LPA) and its Receptor LPA1.  His study is investigating the role of Lysophosphatidic Acid (LPA) and its cognate receptor LPA1 in lung injury and fibroproliferation following bleomycin treatment. 

• Harikrishna Tanjore, Ph.D., of the Center for Lung Research at Vanderbilt University Medical Center: The study’s purpose was to determine the extent to which epithelial to mesenchymal transition (EMT) contributes to lung fibrosis and to investigate the role of TGFβ in EMT in the lungs.
• Melissa Hunter Piper, Ph.D., of the Davis Heart and Lung Research Institute at Ohio State University who studied whether the loss of the expression of miR-17-92 (microRNA) cluster contributes to the pathogenesis of pulmonary fibrosis.
Grants Awarded by the CPF/PFF/ATS partnership beginning 2009 were:

• Steven Huang MD., lecturer, University of Michigan Medical School:  His study is The Regulation and Pattern of the DNA Methylome in Pulmonary Fibrosis.  The study involves hypermethylation of DNA, an epigenetic process recognized to be important in many diseases though understudied in IPF and genes that may be hypermethylated, and to profile the DNA methylome of fibrotic lung fibroblasts. Also, his study addresses how prostaglandin E2, an antifibrotic lipid mediator, may be able to regulate DNA methylation machinery. 

• Erica Herzog, M.D., PhD,, of Yale University’s Division of Pulmonary and Critical Care Medicine:, His study is Semaphorin 7a and Alternative Macrophage Activation in Idiopathic Pulmonary Fibrosis.  The research seeks to determine the mechanism through which Semaphorin 7a promotes the appearance of M2s and collagen deposition in a mouse model of pulmonary fibrosis and to determine the mechanism through which Semaphorin 7a affects the differentiation and activation of M2s obtained from patients with IPF.

• Zhou, Beiyun Ph.D., assistant professor of medicine, of the University of South California’s Division of Pulmonary & Critical Care: The study is Endoplasmic reticulum (ER) stress induces epithelial-mesenchymal transition (EMT) in alveolar Idiopathic pulmonary fibrosis.  The researcher is investigating the hypothesis that ER stress induces EMT in epithelial cells thereby contributing directly to fibrosis. Understanding the mechanisms whereby ER stress contributes directly to fibroblast accumulation in IPF should provide new insights into the causes of pulmonary fibrosis that may in turn offer novel therapeutic strategies for this otherwise fatal disease.

• Simonian, Philip M.D, assistant professor of pulmonary sciences & critical care –at the University of Colorado Denver: His study is Protection from Inflammation-Induced Pulmonary Fibrosis by IL-22.  The focus of the research is to determine the mechanism by which IL-22 protects against lung fibrosis so that better therapies can be developed that protect patients from the development of pulmonary fibrosis.

Thursday, March 3, 2011

News from The Coalition for Pulmonary Fibrosis


I have blogged several times about a wonderful organization who is supporting research to find a cure or treatment for Pulmonary Fibrosis. It is the Coalition for Pulmonary Fibrosis. They help to fund specific research.
If you are someone with a Interstitial Lung Disease or related to a person suffering with this very difficult diagnosis, please check-in with this organization. Their web site is: http://www.coalitionforpf.org/
The latest information I have received from them is below. They are announcing research grants that I am convinced would not be happening without their support. Tomorrow, there will be a list for previous recipients of the awards and what specific research was funded.
Here is a direct quote from an informational e-mail I received from CPF:
Coalition for Pulmonary Fibrosis, Pulmonary Fibrosis Foundation and American Thoracic Society Announce New Research Grants for Pulmonary Fibrosis Research 
CPF and PFF Commit to ATS to Fund Grants
The Coalition for Pulmonary Fibrosis (CPF), the Pulmonary Fibrosis Foundation (PFF), and the American Thoracic Society (ATS), the world’s leading professional organization for pulmonary, critical care and sleep medicine, announced that the CPF and PFF will again partner with the ATS to fund Pulmonary Fibrosis (PF) research.
“The CPF is dedicated to this important partnership with ATS and the PFF” said Marvin Schwarz, M.D. chairman of the CPF and the James C. Campbell Professor of Medicine at the University of Colorado Denver School of Medicine.   “As the CPF celebrates 10 years of work on behalf of the PF community, it reaffirms its commitment to supporting efforts to find answers to the disease.  We will continue to fund critical research that will 
take us from a disease that is virtually untreatable to one that is curable.”
“We are proud to have joined this partnership with the CPF and ATS in 2009, and are encouraged by the quality of research these grants have funded to date”, said Daniel M. Rose, MD, President of the PFF. 
“Given the urgent need for treatments and the very challenging nature of this disease, this expanded support for the ATS research grant program offers excellent hope for new findings that may lead to a better understanding of PF and earlier opportunities for the development of avenues for treatment”, said Mishka Michon, CEO of the CPF.
The patient organizations will each commit $30,000 per year to co-fund two-year research grants for two consecutive years. The ATS will provide partial funding and management of the grants. 
 
“Pulmonary fibrosis was once considered rare,” said Jesse Roman, M.D., chair of the ATS Scientific Advisory Committee and chair of medicine at the University of Louisville. “We now know it’s not.  In fact, recent studies show that it is on the rise.  And yet, there is no effective treatment. These research grants will help us change that.”
Research in PF has been minimal historically compared with research into other diseases, including diseases that affect fewer Americans and that are not imminently deadly like PF.  However, the joint effort between the ATS and the CPF for the Partnership Grant for Pulmonary Fibrosis was established in 2006.  The Pulmonary Fibrosis Foundation joined the partnership in 2009, committing funds to the effort through 2012.
“Even though my research started with this funding partnership, it didn’t stop at the end of two years,” said
Andrew Tager, M.D., Assistant Professor of Medicine, Harvard Medical School, a recipient of an ATS/CPF grant award in 2008.  ““It established an important foundation on which to build ongoing research in the search for treatments and a cure.”

Wednesday, March 2, 2011

Neighborhood Update

It has been so interesting to watch and observe. For a while, there were signs in many yards in our complex. The house behind us along with two on our cul-de-sac were listed for sale and the one directly across from us was up for rent.

The rented house went quickly. A lovely family from Colorado moved in with two young boys and a dog and made themselves at home. The dad is in high tech and they said that industry is dead in Colorado. He is working for a start up and planning to buy a house in the area so the children won’t have to move schools. It is fun to hear children playing and having fun again. Always makes me smile.

The houses for sale are all still for sale, five months later. There has been interest but none of the owners has been willing to reduce the price of their homes. All are overpriced for the current market. There was another open house last Sunday and some people stopped by to take a look. 

Our hopes that a nice family buys the house from our problem neighbors next door are delayed. They are removing the house from the market for a month then will begin again. 

Just off our street and next door to our friends Rick and Natalie, a family owned a house dating back to when they were new. This was a large 5 bedroom, 3 bathroom home. The parents lived and raised four girls there, the father passed away there, one daughter and her husband moved in to be with the mother then they decided to move to Bend, Oregon. The husband had always wanted to live there even though he was a commercial airline pilot stationed at a far off hub. 

We realized that there was huge competition between the four daughters. The older one clearly won the "Best Married" award as she married into a very wealthy family. Her husband was an interesting nice guy. One daughter was divorced, another never married, and finally another married her pilot and moved into the house. She was very self involved. She also lived as if they were extraordinarily wealthy and demanded only the best. She expected Rick and Natalie to drive her children to school. She always seems to have migraines when she didn't want to do something. She expected them to watch her children on the spur of the moment for hours instead of the agreed upon time. "So sorry I am late!" Natalie felt used but also felt so sorry for her children.

It got to be really awful. She was not a nice person. She was a total user. Natalie was able to draw some lines in the sands but still worried about the kids. They were sweet kids.

To move to Bend, the daughter and her husband decided to keep the local house and rent it out while waiting for the market to stabilize to get the highest price for the house. Several years have passed and the market has continued to drop. We noticed a big sign in the window a few weeks ago and the renters had to suddenly move out.

Word just came in last week that the husband is no longer flying and is on disability. He had developed vertigo. They just lost the house in Bend, Oregon. We now know why the renters had to move out. The family house on the next street from us is now for sale by the bank. 

If they had not been so greedy wanting top dollar for the local home, they could have paid cash for the Bend home. 

Life lessons.

Now that the husband is suddenly disabled, there was not enough money to handle all the debt. They also had huge debt with new cars and credit cards. She talked about it with Natalie. She has announced that she wishes she could get a job but alas, those migraines...They are bankrupt. They are our age. It could have happened to us. Again, the life lesson is to live within your means as you never know what life brings. 

I feel so sorry for their kids.