Living Well with a Bad Diagnosis - Lung Disease

Sunday, March 31, 2013

Easter Wishes



Happy Easter! I hope you are celebrating with family.

Mom, Michael and I will be together this afternoon.

We will phone Michael's mom this morning.

William is back from his rehearsals in Burbank and the tour begins soon. We will connect with him to hear how it is all going.

Connections. Family. Isn't that what life is all about?

Saturday, March 30, 2013

Firsts and Plans

The first tunnel built in the state for decades was opened this past week. It connects the coastside to the city, bypassing a very deadly, scary road named Devil's Slide. Michael and I met over the hill yesterday and drove it together last evening. It was magnificent, long, straight, monitored, filtered air and fans. Exciting.

Also exciting: the gem show. I had no idea. We were a bit early, sat out in the sunshine and watched all the people arrive. What a well dressed group of people! Mom was given two free passes worth $24 from her hairdresser. It was overwhelming. It filled a huge hall at the county fairgrounds. Serious jewelry. Quality costume jewelry. Table after table. Showcase after showcase. Two hours later, we had enough. Our stash? Mom bought herself a ring and earrings for my sister while I bought a very cool pair of white earrings. There is a show every three months so next time we will be more prepared. We spent a lot of time of just looking around as there was so much to take in.

With all mom's doctor appointments, I have missed many of my Monday and Friday workouts at the other rehab. I am beginning to feel it. It is not good. Today, I thought I would go over the pass for a good long workout. Alas, they are closed for the holiday. Plan B - I would pick up the yoga class at 10 this morning here on the coast. I just received an e-mail of all the classes cancelled for the holiday and it was listed.

Plan C - Yard work. Major weeding, ladder climbing trimming, a quick cut and blow. The only possible problem might be the weather. It is foggy here this morning but not wet. It feels like rain might be heading our way. So, if the weather remains stable, my workout will be in the gardens.

My pillbox needs to be filled, the menu for the week needs to be determined and my checkbook needs to be balanced.

So, that is my day today.

Friday, March 29, 2013

Friday and Worries

Friday. It always sounds so sweet. Michael usually comes home early and has his weekly cocktail while we sit in the garden. We talk about the past week and the week ahead. He always has a story to tell about someone he has dealt with during the week. When I was working, we would turn up the music and sit for hours on the swing in the side yard. It is what calmed me down, got me focused and helped me get through another week. Down time.

Now, the old swing has been taken away and the new one is waiting until after the rains to be installed. We usually don't have the music on anymore as we are in the further back yard rather than the swing. Our lives are so much smaller than years ago that we often just sit and enjoy the silence. We are close enough to the ocean to hear a storm coming in or the fog horns in the distance.

Someone just recently asked if we talk a lot about my illness. In truth, unless there is a crisis or I have seen a doctor or I notice a change, we really don't let it into our lives. We deal with it when we have to, otherwise, we live our lives. In the beginning, I used to worry. I worried about a lot of things out of my control but what was hard to deal with was the fact that I could be dead next week. If I were to get sick or get the flu, BOOM!, death. There was a lovely 80+ year old man in the rehab class who was a very respected international dog judge. He had IPF. One day, I asked how he handled the knowledge that he could be dead next week. He paused and said, "If you really want to know, I just don't think about it." He asked why worry? It won't change anything. Don't be stupid, wash your hands, stay away from crowds but other than that, there is not a whole lot you can do.

I know it sounds so simple, but it changed how I looked at the whole disease. I had been driving myself nuts thinking about all the "what ifs." I learned to only worry when I had proof that I needed to worry. It saved a lot of energy and undue stress.

Thursday, March 28, 2013

A Pause

Michael hauled my bass out of the car after the orchestra rehearsal last night and was setting it up in its stand in the corner of the living room when he spotted it. He couldn't believe it. There was a dime on the floor behind the bass stand. Dimes from Heaven. That makes four found dimes just yesterday. Kind of creepy! Kind of lovely!

Tired. After climbing into bed after the rehearsal, it took a while to settle in and I didn't get to sleep until around 11:00. That is late for me. It is 5:30 right now and this morning, we have a 7:30AM appointment with the Audi dealership to fix an ignition coil that has been causing problems. We are going for breakfast while we wait for it to be repaired then I am meeting Sherman at the rehab class. Meanwhile, the housekeeper fairies are going to make an appearance. I will be in bed early tonight!

Not much going on. I am feeling better, not coughing as much, not stressed, not a lot of doctor appointments, no tests, no crisis. A good place. I am really enjoying this pause. Quiet.

Wednesday, March 27, 2013

A Dime or Two

It started in the kitchen then went into the garage then into my closet yesterday morning. It was the cleaning fairy in me making an appearance. It must be spring! All my drawers are clean. The refrigerator is spotless and lots of old jars were tossed. Even the shelves in the garage are organized. It feels fantastic. Afterwards, I ran out for some errands then rested my knee the rest of the day.

I feel like I had a day off.

Back to life today with a morning doctor appointment with mom's cardiologists. Her hairdresser gave her two free passes to the annual gem show at the fairgrounds, so we are heading there afterwards. We also hear they have a good and cheap lunch available. Tonight is an orchestra rehearsal. A full day ahead.

I continue to notice that the cough has subsided even more. I don't think I coughed all day yesterday, even through all the cleaning.

At the grocery store yesterday, two of the checkers were laughing after one held up a dime. As there was no line behind me, they explained that one had told the other about something called "Dimes from Heaven." Apparently, these dimes are left for people from their dead loved ones. After one checker had shared the story with the other, she has been finding them all over. This morning, I stumbled out to the family room and glanced behind my chair. There, on the floor I cleaned yesterday, was a dime. I did a quick Internet search of "Dimes from Heaven" and there were a ton of stories of found dimes and pennies.

I hope you find a dime or two today!

Tuesday, March 26, 2013

Gaining Strength

Lindsey's children, Robb and Kari sent their contact information and we are going to meet to get caught up. It will be nice to have a conversation with them, find out where they are in life and close that circle.

We realized that we missed our neighbor and friend Rick's birthday and made a date to have the entire family here for appetizers and cocktails the weekend after Easter.

Mom and I went to Big Lots, had lunch at Nordstrom's then a Trader Joe's run. After lunch and in Nordstrom's, we ran into Maryanne. She is the wife of Mark who was in the horrible accident few years ago and who hosts Michael at Hot August Nights every year as a thank you for rescuing them. Nancy, their friend since high school, was married to a friend of Michael's who turned into a real jerk. We have not seen Nancy in many years, we talked about her yesterday and Maryanne is going to arrange a dinner at her house for all of us to get together.

Last night, I made reservations for Easter brunch. We didn't want to go to any place that had a "special" menu. The food is never done well, we hate all-you-can-eat buffets and holiday menus are always very expensive. We are going to the Palo Alto site of the chain Il Fornaio. They are always good, there is no special Easter menu, it is beautiful setting within a hotel and not horribly expensive. Perfect.

Reviewing the day before going to bed last night, I realized for the first time since well before Christmas that we are gently reaching out to be with other people. We had been worried about the cold and flu season, my reduced stamina due to the year-long bronchitis and emotionally, we felt beaten up with the funerals and all the broken relationships within the family. But, I now look forward to seeing Robb and Kari, throwing a small birthday party at our house, seeing an old friend with Mark and Maryanne and celebrating Easter with mom at a restaurant instead of staying home.

The page has turned. We are dipping our toe in the water. I must be feeling better and a bit of stamina is returning otherwise, I would not consider any of the above.

Monday, March 25, 2013

Pains and Plans

The wrenched knee is demanding attention again. When I woke up to use the bathroom very early this morning, it announced itself with pain. I had been pain free for days and this just shocked me. Maybe it was the yard work I did yesterday. That is the only thing I can think of that may have caused the pain to return. There is a bag of frozen peas on it as I write this morning.

I was still thinking a lot about Lindsey and her memorial service while working in the gardens. Lots of memories.

While Michael and I sat in the garden Sunday afternoon, we heard lots of fire trucks and police cars zooming by the house. I looked on a web site to see where they were heading and found that there was a water rescue just a beach north of us. Helicopters soon joined the search. Apparently, a local 22-year old was playing soccer on the beach and was suddenly taken out by a rouge wave. Sadly, they still have not found him.

Today, the new tunnel connecting the coastside to the city will be opened. It has been a multi year process and gazillions amount of money to build the one-mile stretch, two bore tunnel through a very unstable mountain. The road along the cliffs will still remain opened for hikers and bikers. About every ten years, the area would close for months due to the road collapsing into the ocean or huge rock slides covering the road. This would cause huge traffic problems and profound loss to the local economy. No more, thanks to the new tunnel.

Today is the first Monday in weeks that mom does not have a doctor's appointment. This week, she has one on Wednesday and another on Friday! I was planning to go to the other rehab but I just don't think my knee could take it. So, we will grocery shop and have a nice lunch somewhere. We will also discuss Easter plans.

William leaves tomorrow for a few days of rehearsal in Burbank before they begin their big summer tour. As this group has not toured since 2003, everyone including the band, is so excited to perform in large venues to sold out crowds. He sounded so happy to get back out on tour.

Sunday, March 24, 2013

Funeral and Tears

It was a tough funeral for me. Lots of tears. Memories kept flooding back. Memories of our very young children. Every story told by her children Robb and Kari, I remembered. I had been there.

We arrived early and watched as people we knew flooded into the funeral parlor. They opened up another space to seat the crowd until finally, there was barely enough space for people to stand in the entry hall. It was packed.

I saw a lot of the former Rhodas (must read previous blog to understand) and one of the moms from the playgroup sat in front of us. She was the person who would always say nasty jabs to me. During our last conversation years ago, she asked if I still lived in "that tiny dump." Lindsey told me that her son "Danny, darling" was a New York attorney. No, I did not tap her on the shoulder for a conversation. A playgroup dad was also there. We spoke with him afterwards and learned that his son, Mac, was married, has two children and living in Beirut.

Wayne, her children's father, spoke to the crowd. He was with her when she died. That was the kind of woman Lindsey was. She still had a close relationship with her former husband and in fact, told me that she really loves his current wife!

At a funeral of another dear friends many years ago, I was appalled that each of her four friends stood and announced that they were her "best friend." Each insisted that they, no, THEY were Sharon's best friend. It was not done it jest. They were very serious. I found it disgusting. At one point during the service yesterday, one of the Rhodas made a speech proclaiming that she, Tish and Lindsey were the Three Musketeers and that they were Lindsey's very best friends. It reminded me of Sharon's service. Seemed so inappropriate.

I was able to hug Robb, who didn't recognize me, and Kari, who I would not have recognised. We spoke privately afterwards, we invited both to visit next time they are on the coast and I promptly burst into tears. Again.

I am so happy we attended and I was able to say goodbye to an old friend. Who knew that Lindsey would be the first to die of the seven of us from our children's playgroup? She never sat down. She never stopped moving. She was the most active.

What I most left the services with was the joy that all the speakers captured Lindsey. I guess we all felt that, at one time in our lives, she made us all feel that we all were her very best friend.

Saturday, March 23, 2013

One of Those Days

Did you ever have one of those days? Yesterday was mine.
1. Left for the other rehab only to be stalled on the highway due to an accident. Got around it.
2. On the pass over the hill, a stop light was out so every car had to stop at the far end. Traffic was backed up for miles. Took 30-minutes for a 10-minute drive.
3. Arrived to the other rehab and no parking. Anywhere. Not the streets surrounding it. Not the parking lot. I almost gave up until someone left and I grabbed their space.
4.  It was then that I realized that I forgot my oxygen. I had to do a reduced intensity workout.
5.  Afterwards, I met mom at her place, we talked, went to Starbucks, drove to her hospital for her GYN appointment. We valet parked at the main hospital, where we were told the department had its clinic. Wrong. They are doing massive building and it was impossible to walk from the hospital to the other building. We took a shuttle that took 10-minutes.
6.  Being dropped off between two buildings, we walked to ours and asked where the cafe was for some lunch before the appointment. It was in the other building. Walked back. Had a great cheap, quick lunch, actually.
7. Arrived 10-minutes early for our appointment and no one was there. Sat and waited until someone arrived right at 1:00. It was then that we found that mom did not have an appointment. She didn't bring the paper that confirmed it so we made an appointment for next Friday.
8.  We walked back to the other building where we caught the shuttle back to the hospital and its valet service.
9.  We drove mom home and I arrived home safe and sound. I was not going to leave the house!

What a mess. Mom found the paper that showed she did indeed have an appointment, phoned them only to discover that they had tried to phone her to cancel it. The doctor had to do an emergency surgery. Mom doesn't have a cell phone and we were already on the road.

I am pleased to report that we had a quiet dinner and all was well up until the phone rang and Michael had to go to rescue a friend. Police were involved but all turned out well in the end.

Today should be a bit better, I hope. The funeral is this morning. A sad day.

Friday, March 22, 2013

Breathing Through Difficult Days

My yoga twisted knee held up in the rehab class yesterday and is, so far, pain-free this morning. I am so relieved that it was a minor injury. While hanging out with Sherman before the class, we were join by a gentlemen we haven't seen in a while. His wife has physical therapy in the swimming pool while he hangs out with us. I just learned yesterday that he knows his classical music. We talked repertoire, musicians and venues. We even sang the Handel harp concerto to Sherman. Music always fills my soul.

Mom's appointment with the GYN is this afternoon. I am going to hit the other rehab this morning for a good workout then we'll have a bit of lunch before seeing the new doctor. We are both a bit nervous. We hope it is nothing.

Lindsey's funeral is tomorrow. I am also a bit anxious about that but so happy that Michael is going with me.

And through all this drama, the Formula 1 race from Malaysia has qualifying today. It was raining and very hot for the practice. The track is eating tires. It is the widest race track of the entire season, which means lots of passing. We will watch the race on Sunday.

In breathing news, something good is definitely happening. My saturation numbers in the rehab class are up. I desaturate the most on the treadmill, the saturation has been measuring 92% on 2 liters. Yesterday, it was 96%, the RN reduced the oxygen to 1 liter and I was stable at 92%. Really good. Recently, I would have been down to 90% on 1 liter. The coughing has mostly subsided. I used to make the bed then cough, get dressed then coughed, food shopped then coughed, walked anywhere while coughing....you get the idea. The only recent coughing fit was walking my string bass out of the rehearsal and loading it into the car. I coughed three times then done.

All this means that I might, just might, be recovering from bronchitis that I have had for more than a year. Wouldn't that be marvelous?

Thursday, March 21, 2013

Thank You for Sharing Your Cold!

Well, I did it. I sent the e-mail about the Stanford professor I met when Natalie and I went to the gala fundraiser over a month ago. I sent it to the head of the school where I got sick as a possible electronic music/technology program mentor for the new high school. I sent it because my friend Lois reminded me that it was a fantastic connection, which could change student's lives.

There was a reply this morning. Diane told me it was a terrific suggestion and that they would definitely follow up.

I hope it all works out. It will be my good deed for the year.

At the yoga hell class yesterday, I thought I was arriving at my regular time only to find the parking lot full. As I have the oxygen tank with me, I try to workout from a far corner of the room so it is not in anyone's way. Too late! There was a woman there already stretching and she had her mat at 45 degrees from the corner, using a lot of space. I laid the mat near her and began to quietly get settled. Well, she was all over the place. She was upside down. She was on one foot. She was the only one in the room not just simply stretching. Finally, she sat down and let out a huge ugly cough.

I smiled and quietly asked, "Is that a cold or do you have allergies?" Her reply, "I am trying to get rid of a cold. Yoga helps move it threw."

Calmly I said, as I picked up my mat and all my stuff, "If it is all right with you, I am going to move. I have no immune system." She appeared to be insulted. "I don't think I am contagious," she called after me as I moved to the other far corner of the now packed room. The man I met last week moved his mat to make a space for me and I ended up so close to the door, I was worried about being trampled. She coughed throughout the class. Thanks for sharing your cold with us!

There are places where people gather whether they are contagious or not: funerals, weddings, birthday parties, holidays, church, school, work. And now added to that list, a yoga class.

Also during the class, I twisted my left knee. It hurt! I iced it several times yesterday afternoon and had no pain this morning until I ran down the hall to Michael with his ringing cell phone. The pain said, Hello! Remember me! Now I am worried about the rehab class this afternoon. It is fine if I walk straight and not twist it in any way. Can I walk safely on a treadmill at 3.4 mph without doing more damage? More ice this morning! I have a feeling I won't be allowed anywhere near a treadmill today.

Wednesday, March 20, 2013

Talking and Speaking

For years Louise, the head of the pulmonary rehab program, has taken me aside to ask for my help. Due to the HIPAA laws, she can't tell me anything about another patient but will ask that I have a conversation with someone. That is my cue. That person is struggling with their illness. I will begin a light conversation, ask their diagnosis and how they are doing, which always brings forth the issues. Most are just scared and don't want to face their illness. Some need second opinions. (I am always shocked that a diagnosis was determined by an xray. No biopsy, no CT Scan, no bronchoscopy.) But what I offer to each person is the importance of staying in rehab, not just for the 8-week education classes but for the rest of their lives.

I believe that my extensive exercise for the past eight years has staved off lung transplants.

Because I so believe in the importance of diet and exercise when facing a fatal diagnosis, Louise has invited me to speak to her class about exercise. In order for that to happen, she had to receive approval from the head of the hospital because of the HIPAA laws. I was approved and will speak with the group in April.

I had tea before the rehab class yesterday with Lois, who I met years ago at the other rehab. We looked at her photos from her annual trip to the Mozart festival in Salzburg. She has been making the trek for over 20 years and even taught herself German so she could go to the lectures and read the concert programs. We talked music. Always a delight. Had I not started working out at the other rehab over seven years ago, we never would have met. She is a lovely gift in my life.

While having tea, I told her about my struggle of whether or not to contact the head of the school where I got sick regarding the electronic music professor I met at Stanford last month. He would be such a perfect fit for their new high school, which just won approval from the county. Lois advised that I do make contact because of the benefit to the children. I am working on that e-mail and will try to send it today.

Yoga hell class this morning. Orchestra rehearsal tonight. Cooking the lamb stew for dinner later this afternoon. A nice, quiet day!

Tuesday, March 19, 2013

Breathing Well, No Coughing and Menu for the Week

I have just recently noticed that I am not coughing anymore. What a relief! Why? Who knows! Maybe the dreaded bronchitis that has been with me for a year has finally retreated. Maybe it is the yoga, which may have opened my lungs with all the deep breathing. I have noticed that I am able to inhale longer than usual. But, the main focus in my daily life is to continue to take precautions against being infected or even exposed to colds or the flu.

Mom and I are so careful when we are out and about in the world. Even at lunch, we wait until after we handle the menus then we use her hand sanitizer and we never touch the salt or pepper shakers or condiments on the table without a napkin. Every time we climb back into my car, the sanitizer is also at the ready.

Yesterday, while waiting for mom's appointment with her eye doctor, an elderly man in a wheelchair was placed behind us. He let out several huge, productive coughs. Mom and I looked at each other and in one movement, we rose and moved to another area in the huge waiting room. I just can't afford to be sick as just one good cold turned into an infection could kick me into lung transplants.

On that happy note, here are the dinner recipes for the week.

General Tso Chicken with Thai Green Beans -
http://www.genaw.com/lowcarb/general_chicken.html
http://www.genaw.com/lowcarb/thai_style_greenbeans.html

Parmesan Baked Fish with Beet and Walnut salad -
http://www.lowfatlifestyle.com/entrees/entreerecipes/parmesanbakedfish.htm#.UUhxZY7FXC4
http://paleodietlifestyle.com/beet-walnut-salad/

Spiced Lamb Stew - http://kitchenpreserve.com/spiced-lamb-stew-with-eggplant-tomatoes-and-peppers/

Monday, March 18, 2013

Thinking Too Much

I think I am getting a bit gun shy. Every time the phone rings, I jump! It has been a terrible beginning to the year as there have been two deaths and three major relationship ended within our family. As far as we know, no one has died and no relationships ended this past weekend!

On Saturday morning, I cleaned the entire side yard in the front all while thinking of Lindsey. She loved her potted plants and animals. When I knew her, she had a house rabbit who ate the carpet beneath her bed, a turtle, several cats and later learned there were birds added to the menagerie. She was an extremely active woman who never sat still. Never stopped. It was so cruel that she contracted MS, which made her slow down but she still fought to keep moving in a wheelchair until she finally couldn't. Awful disease.

When I think back to the group of women from the playgroup, I would never have bet that the first one of us to leave this earth would be Lindsey, as she was so full of life. When we spoke on the phone, we both were so surprised that we were the seriously sick ones. I would suspect that several women may fly in for the funeral. One lives locally but the others live in Hong Kong, Vail, Seattle and Medford, Oregon. All the children have done very well for themselves. Lindsey's kids are both lawyers, Robb is a municipal attorney into politics and Kari is a state prosecutor and a new mother. She was proud of them.

Today's plans include an early fasting blood test and a long doctor appointment for mom followed by lunch, the butcher shop and Trader Joe's. It is going to be a long day. I didn't sleep well last night. My mind just could not settle down.

Sunday, March 17, 2013

Final Goodbye to an Old Friend


This has been quite a year of upheavals and changes. Sadly, we are attending another funeral next Saturday. In past blogs I have written about my son’s playgroup and the one woman who befriended me. It was an interesting relationship, I painfully moved on, went to work at the school where I got sick, our sons went to different schools in different cities and we grew apart. The background story is below:



About two years ago, she found me on Facebook. She had been struggling with MS for many years and was wheelchair bound. We e-mailed back and forth, caught up with the lives of our children but I really didn’t want to see her again. She was the same. Her group of friends were all the same. I had grown and was not the same person I was in those years. She loved drama, surrounded herself with it and I just didn’t want to be drawn back into it all. I have enough drama in my life with all my health issues!

On Friday, I received an e-mail from her children inviting me to her funeral. Michael is going with me. All the same group of her friends will be there. All the former Rhodas will be there (if you read the above blogs, you will understand). It will be difficult.

I am also sure that many will not welcome me because I resisted being part of their group once again. Some may even “confront” me about not being supportive of Lindsey when she was ill.

I am attending to honor the friend I had for many years, comfort her children and really just to say goodbye.

Saturday, March 16, 2013

Transplanted Bagpipes

After reading this in this morning's San Francisco Chronicle online, I just had to post it.


Piper makes music with her donor's lungs

Published 9:03 pm, Friday, March 15, 2013
  • Double-lung transplant recipient Isabel Stenzel rehearses for San Francisco's St. Patrick's Day parade. Photo: James Tensuan, The Chronicle
    Double-lung transplant recipient Isabel Stenzel rehearses for San Francisco's St. Patrick's Day parade. Photo: James Tensuan, The Chronicle

When Isabel Stenzel wails away on her bagpipes, playing "The Wearing of the Green" and marching in Saturday's St. Patrick's Day parade in San Francisco, she'll be relying on her own fingers, her own legs and someone else's lungs.
The 41-year-old social worker from Redwood City emerged from a double-lung transplant operation in 2004 able to breathe normally - and, with some practice, huff heartily into a bagpipe - after a lifetime with cystic fibrosis. The genetic, chronic disease builds up heavy mucus in lungs and makes breathing almost impossible.
"I was so sick before," Stenzel said. "I couldn't even walk without being short of breath. At the end, I couldn't even brush my teeth without being short of breath. And here I am marching, da-da-da, playing 'Scotland the Brave' in full uniform. I'm like, 'What?' It's more than a dream."
Playing wasn't even a pipe dream in the months following Stenzel's transplant at Stanford Hospital. She had to blow into a device to help reinflate the donated lungs after they shrank slightly in transit, then slowly built up her breathing capacity by jogging and swimming.
Bagpipe fever struck, however, at a donor-recipient event in Hayward a few months after her transplant, when a bagpipe troupe played. Stenzel's husband is Irish, and her father-in-law always talked about having bagpipes at his funeral.

Honoring donor

Stenzel had never played the pipes, but "when they came on stage, I was like, 'Wow. I want to do that,' " she said. "The sound is so powerful. It wouldn't be my sound, but it would be my donor's voice, my donor's sound that would be heard by the world. What a beautiful way to honor his gift of lungs."
She began taking lessons near her job in San Jose and joined the Stewart Tartan Pipes and Drums in 2007, practicing weekly at a church in Saratoga and drilling marching formations in the parking lot.
Stenzel has devoted her life to organ donation advocacy. She and her twin sister, Anabel, were both born with cystic fibrosis - her sister has received two double-lung transplants - and they wrote a memoir about living with the disease that inspired a documentary film in 2011. They're both active in helping others in the Bay Area with cystic fibrosis, and Stenzel has gotten to know the family of her donor, an 18-year-old Fresno man who died in a car crash.
But when Isabel Stenzel puts on her wool tartan plaid kilt, doublet, cape, spats and ostrich-feather bonnet Saturday to march up Market Street, she'll take off her advocacy hat.

Just like anyone else

"What I love is that my identity my entire life has been dominated by my illness, and I've always been the CF patient, the sick girl, the transplant recipient," she said. "In my piping band, I'm just another piper."
Bagpipes require deep lung capacity, enough to fill the bag with air, which then leaves through three drone pipes that always play the same note and one chanter that plays a melody.
Stenzel, like other beginners, started playing with all three drones plugged to lessen the airflow demand. She had played piano and violin as a child but never a wind instrument, and had no idea how to direct her air. As she played more and conditioned her lungs enough to unplug all three drones, her breathing capacity grew from 95 percent of normal to 125 percent, she said.
"It amazes me that I have the lung power to march and play," Stenzel said. "In one of my earlier parades, I had this very surreal and out-of-body experience. I felt like I was living a different life. I was in a different body, and in a way I am."
This new life, while sweet, could also stop at any point, Stenzel knows. Lung recipients face a risky future even after a successful transplant, with odds slightly higher than 50 percent that they will survive more than five years after the operation.

Twin's second transplant

Stenzel's twin had a double-lung transplant in 2000 and another in 2007 after her body rejected the first set. Stenzel's lungs are vulnerable to infections, and while high airflow from playing the pipes can help, she also has to be vigilant about mold that can grow in the instrument.
She can't swap her pipes with other players, who pass them around at shows and festivals "like a cup of whiskey," she said. And even if she's careful, transplanted lungs can slowly lose function over time.
"Rejection is always a possibility," she said. "I even get very tearful thinking about how someday, I'm not going to be able to play the pipes. I guess that's the case for every human being - all of us have to give up something we love as we age. For me, it's much more imminent."
But while she's still able to play, she said, it's "life-affirming," for herself and for her donor's family. "I feel so alive."