Living Well with a Bad Diagnosis - Lung Disease

Friday, November 30, 2012

Learning from Friends

Natalie and Oliver came by for a visit yesterday morning. He is soooo adorable. We were able to keep him busy and happy while having great conversations. One was about my jump into the world of yoga. Natalie said that she now realizes why we worked so well together and why we like each other: both high energy. The more we have to do, the more we can do! I think that if we were doctors, we would work in the ER. Adrenaline junkies. She is just now realizing this about herself. She is LOVING working three jobs and driving between them and juggling all their challenges. She loves how the days fly by. Her children are happy with their schools. All is right in the world.

She said that she is realizing that she is like a race horse. She needs to run. Needs to be stimulated and busy to feel like she is in her groove. I so understand. I felt fantastic when I was juggling tons of balls in the air at work. It is what I missed most when I became ill. It all suddenly stopped and the days were endlessly long with nothing on my list of things to do. Pulmonary rehab helped. Making new friends really helped and suddenly, I was reinventing my life.

What Natalie also said is that she realizes that she needs to exercise her body and has been doing yoga for many years. It calms her. It centers her. I am so hopeful that it does the same for me.

Thursday, November 29, 2012

New Growth and Learning Ahead

So much to blog. It was a lovely surprise when Michael arranged to drive the long trek into the city for my lung doctor appointment yesterday afternoon. It is stressful and I was so relieved that he was driving. I am always a bit nervous as I have often had huge traffic slow downs and have learned to build in extra time to allow for such things. We arrived an hour early! After a nice cup of coffee, we checked in and I had spirometry and DLCO tests.

Michael watched me taking PFTs for the very first time. He said he was breathing along with me while watching the computer screen. My VLC was 52% and DLCO 12.9. Both were slightly better than the last time but I was not happy. I thought both would be much higher after all my hard work in the gym and the lessening need for supplemental oxygen. We met with Dr. K. afterwards. She was so kind! She was nice, even asked how our Thanksgiving was and told us her daughter was getting married in March! Personal conversation!

The good news is that she reduced my prednisone a bit. Nice. I mentioned that recently I have been aspirating my saliva. She said that was usually a sign of anxiety, which brought up an entirely new conversation. She asked what was going on. We told her about mom's heart issues, my brother and sister-in-law's health issues and other worries. She looked at me and said, "You have conquered your weight issue and totally conquered rehab, now you have to do interior work." She said I needed to learn techniques to calm myself when I am anxious or feeling out of control. When I do get new lungs, these techniques will be important to have during that time. Yoga, Tai Chi, relaxation classes. We talked about what is offered through the university but the drive to and from would negate any sense of well being. She suggested that I look for classes locally. She called it a new phase. A learning experience. A New Year's resolution.

The other news is that she estimated that I will need transplants in five to six years and that those should get me to around 75-years old. Done! I'll take it! I thought it was going to be sooner than her estimate and it was rather nice to know. But, it is odd to think that I will be 75 in only sixteen years. Seems so short. Everyday must count.

Also, she has written orders for a pulmonary echo test. I had one many years ago. She also wrote a prescription for antibiotics to have at home in case I need them. I still have to notify her when I begin taking them. Smart. Thank you.

Afterwards, we navigated our way to the German restaurant where we met William a few weeks ago. It was once again fantastic. We brought half of it home for breakfast. Afterwards, we continued working our way through the city to visit British Don who was just out of the hospital. He had four stints installed into his heart on Monday. Very serious. This was the cause of his shortness of breath and pain that we thought was due to a lung problem. He looked fantastic and was feeling even better!

What a day. It was marvelous to be driven around the city, have support during the doctor's appointment, a delicious dinner and a visit with a good friend. The best, though, was spending the day together.

Wednesday, November 28, 2012

Biblical Storms

Powerball fever has hit several states. It's a half-billion dollar jackpot tonight. That is a lot of money. Alas, we don't have it here in California. But, there is a downside to winning a huge lottery. The stories of former winners estranged from family members, greedy friends, divorces, and bankruptcies are common. We know of friends of friends who were heirs to $100M and, within a decade, it was gone. I so hope a group of people win this week's Powerball as it is way too much for one person to manage without destroying lives. 

We went to Jill and Wayne's house last evening and checked in with their son. He is healing beautifully from his dirt bike accident. His collarbone is still "knitting" and the huge wound in his armpit is completely healed. Ah, youth. He claimed that our gift of a box of See's Candy made it all possible. 

Here comes the rains! A huge storm from Hawaii is zooming up the coast and just hit us a few minutes ago. It is called the Pineapple Express as it is big, warm, wet and windy. Our first large storm of the season.  We watched the front and clouds gather yesterday afternoon and it was so odd to see the clouds come from the south. A rare event here. 

Today is the big day. I see Dr. K at 4:00 this afternoon after a full set of Pulmonary Function Tests beginning at 2:00. I cancelled orchestra rehearsal tonight as I will be whipped after being there most of the afternoon and the tough drive home in rush hour traffic in the rain. I am feeling good though I noticed that I was coughing a lot on Monday. 

With the almost biblical storm, I face my own storm of emotions today as I find out if I fought back the bronchitis and increased my lung capacity or not. The drama is around my 50% of expected vital lung capacity and a good winter cold or flu. Either could reduce my capacity to 40% and a visit to the Lung Transplant Clinic. I am not ready to face that yet and have been able to postpone transplants for several years. I want several more! Today's tests may predict my future.

Tuesday, November 27, 2012

iPads, Menus and a Sweet Recipe Bonus!

Yesterday, I left the house at 8:00 and returned after 4:00. It was a wild ride. After working out, mom and I ran errands, had lunch, shopped then went to the Apple Store where we feel in love with the 22-year old woman who was helping us. A female in a predominately male world. She worked so well with mom as she introduced her to an iPad that mom fell in love with it. It was so much easier than she expected except she was still afraid to touch the screen! With Apple Care, one-on-one and taxes, the total for the new iPad was $638.00. That's a lot of money. Mom said that if we bought it, she would return it. It was too much!

Last evening, I e-mailed my sister to put them on the search for another pad. I am such an Apple person that I don't know the good other manufacturers from the bad. They are doing the research and we'll see what they can find.

Quiet day today then the big lung doctor appointment tomorrow. Looking forward to it but still nervous!

I haven't offered menus for the week in awhile so here is the list for this week:

Ham Steak and artichokes - My butcher has dynamite ham steaks. It was a great treat.

Mexican chicken-  We actually slice the chicken in half so this recipe makes 4 servings.

Baked Parmesan Baked Fish - Will probably serve this with the small Trader Joe's bagged green beans.

Remember, I eat 1400 calories per day and eat only non-starchy veggies and protein to maintain my weight. No fruit, no yogurt, no milk, no grains, no starchy veggies.  Due to long-term prednisone use, my body just cannot process those foods without gaining weight.

I am working on the menus for the week before Christmas, Christmas breakfast, lunch, appetizers, dinner and post-Christmas breakfast for everyone. It is going to be simple and easy yet unique. I will offer one recipe now. It is for Christmas morning. It is from Kate's Framed Cooks website and she is brilliant. I discovered it last year on another site called Tastespotting, which finds great recipes from all over the Internet and posts them in one spot. Easy to use.

The recipe below is not on my diet! But, once a year, I am going to have one. Just one. I want a whole lot more but, no. This woman came up with the idea of taking tubed cinnamon rolls, unrolling them, fitting in a soft-cooked piece of bacon, wrapping the roll back up and cooking it as directed. Last year, William's knees went weak! Here is the recipe:

Bacon Cinnamon Rolls

1 package refrigerated cinnamon rolls (the kind in the tube)
8 slices bacon (and if you like your bacon well done, cook it in the microwave for 1-2 minutes)


1. Preheat oven to 400.
2. Separate rolls and unroll into long strips. Lay one slice of bacon on top of each strip and roll back up, pressing the dough together as needed. Place on greased cookie sheet.
3. Bake for 15 minutes or until rolls are browned and bacon is cooked.
4. Spread frosting from dough package on top of rolls while still hot.
5. Stand back out of the way. These babies are best right out of the oven!

Monday, November 26, 2012

Choices - Fight or Die

A day off. That is what Sunday was to us expect Michael did a few things around the house. We went to the local organic market for a takeout lunch of roasted chicken and a raw kale salad. Delicious. Simple. Dinner was leftover ham steak and artichokes. Really simple. Michael also asked if I would bake a berry pie for him. It went frozen into my amazing convection oven and emerged in no time at all perfectly cooked. He loved it and I am bringing a piece to my mom this morning.

After going to the other rehab this morning, Mom and I are going to pickup my new contact lenses and other errands then we are going to the Apple Store. My sister and I are going to buy her an iPad for Christmas, if she likes them. It is important to have her actually feel it in her hands and to be given a good demonstration of what it can and can't do. She searches the net, has some photos and sends e-mails. That's it. I think it will be perfect.

It happened again. Another story of a sick person unwilling to do anything to help themselves. I feel like I am suddenly surrounded by these stories. This recent one was about a person on the liver transplant list until he was disqualified and he has refused anymore tests. My friend had been calling him to offer encouragement and she has been now cut off. No more contact. He was clinically depressed with no medication to help and was pushing people out of his life. I believe people like this have chosen to die. They are done. It must be very difficult for doctors to deal those who would have had a fairly good outcome but refused to go through the process.

Then I think about my mom and her bad diagnosis of a severe heart condition. We talked about it a bit during the car trip on Thanksgiving. We agreed that it was almost humorous that the doctors kept telling us over and over again that her condition was "severe." We realized that they thought that we were not understanding the bad news they were giving us. I guess they expected to see lots of tears from both of us. We are not the crying types, at least not in front of other people. Mom was thrilled that she had a confirmation that it was a problem with her heart. I was thrilled that the issue was going to be addressed and there was a possible treatment that could help her quality of life.

Two very ill people. Two very different outlooks of dealing with a bad diagnosis. What is it inside each of us that makes us either fight for our lives or lay down and wait to die?

Sunday, November 25, 2012


Today is the first day in many weeks that we are together and we don't have to go anywhere all day. It will be interesting to see how it unfolds. We slept in and the last Formula 1 race of the season from Brazil and the last one ever on the Speed Channel is on right now. The three announcers whom we have followed for years will probably not be involved next year. Many changes. Several drivers have changed teams and one retired. Goodbye to Michael Schumacher.

The sun is fighting to come through the clouds this morning. After working hard in the garden yesterday, I sat for a few hours in the back yard in my bathing suit. It was that warm. Later, we went to a light dinner at Rick and Natalie's house last evening. It was great to spend some time with Melanie. It is fun to watch from afar as she negotiates this all important Junior year in high school. Tennis, AP classes, band competitions, yearly musical where she won a part this year. Busy. So many changes in their lives just ahead.

The very important doctor appointment is this Wednesday afternoon. I will have a full run of Pulmonary Function Tests before the appointment, which will prove that I have greatly improved after the doctor said there was nothing more she could do for me. I have worked hard for this improvement with many additional hours in the gym. My supplemental oxygen needs during pulmonary rehab are just .5 liters as of last week. This is a reduction from 2 liters. Big change.

And sadly, sometimes there are no changes. I have written about our drunk neighbors in a past blog here:   We learned a couple of years ago that there their son, who they so verbally abused throughout his childhood that a neighbor called protective services, won a five year restraining order against both parents. These are not stable people. Mom has two DUIs. Dad has seven. Yes, you read that correctly, seven. Still has his license. Still drives. We just don't get it. I guess no one had been injured or killed. Must it come to that?

We were told last week that he got another DUI on October 1, 2011. This was his eighth. He is still here. He is still driving a company truck. He is still drinking. And I will bet he is still driving drunk. He thinks he is smarter than all the cops. Thank goodness he had to turn in all his guns as part of the restraining order. A drunk with a temper with a gun. Not a good equation. So, some people never change and their lives becomes more grim as they age. Clearly a tragedy is in their future.

Saturday, November 24, 2012

Shopping Season

Strap on your wallet and grab the running shoes, LET THE SHOPPING BEGIN! The season has arrived. Michael and I are beginning our lists. The negotiations that will last up to the final shopping days are happening in the car, having coffee and watching TV. Example from last year: If you throw in half for a CD player for the house, I will throw in for the new pans. This year involves au gratin dishes and expensive William Sonoma coffee cups.

All this is because mom gives each of us money to buy what we want, we wrap everything then open them on Christmas in front of her. Because of her increase in costs living near me, she reduced the amount this year. It was $350 each and is now $200. Still a nice amount to spend, especially for sale hunters like us. Last year, mom bought presents for Shelley's boyfriend and Kimberly. This year, she gave the same amount to both Greg (now Shelley's husband) and Kimberly. Both now considered officially family!

William phoned from New York yesterday. They spent the holiday with Kimberly's cousin and visiting with other friends. They are trying new restaurants and have had amazing experiences. He is going to cook some southern shrimp and grits when they are here before Christmas. So, I told them that I had $200 for each of them from his grandma and he was so touched that Kimberly was now official. I also told them that we also want to give them $200 each to buy what they wanted. He was thrilled! Maybe they will do a bit of shopping while they are still in New York.

The lists will be compiled of what items will be bought from which stores, Michael and I will get all dressed up then shop in one day. Usually a Monday. Somewhere along the way, we will stop to eat a nice lunch and there is always a guarantee of cocktails for Michael to keep him shopping for a few hours more. I may have to fill in to buy a few little things on another day, but I love that we do it together. Power shopping. Holiday fun.

Friday, November 23, 2012

Post Thanksgiving

Thanksgiving. It was a lovely day yesterday. The weather held, no rain and especially no thick fog in the valley. It was a relaxed day filled with conversation and lots of laughter. The food. Well, the food was great. Not too much. The fun was decorating our own Gingerbread men for dessert.

During Thanksgiving every year, mom gives each family a little something to begin the Christmas season. This year, the gift bag included a beautiful, large, very shiny, silver Christmas ball ornament for the tree. Also included, were five lottery scratch-offs. My sister won $3.00, my niece won $1.00 and I won a free ticket!

It was a long day and all three of us were exhausted. Mom had trouble even walking to her apartment and became very short of breath again. We went to bed around 11:00, which was very late for me. Today, I will try to recover with only a workout at rehab then some grocery shopping. We have been invited to Rick and Natalie house tomorrow to celebrate our birthdays. They have been really busy and this will be our time to get caught up before the next holiday madness begins.

I so hope your Thanksgiving was joyous and peaceful and that there was time to take a moment to be grateful for all the goodness in your life. Even when facing difficult health issues, there are lessons to be learned and so many things in which to be grateful.

Thursday, November 22, 2012


Happy Thanksgiving wishes to one and all. This is a day to be with family and friends and nothing more is expected other than great food. Roasted turkey! Stuffing! Cranberries! Pies! What a great holiday!

But most of all, this is the holiday that reminds us to be grateful for the people who surround us and all the goodness in our lives. It is especially meaningful after yesterday's stunning news regarding mom's health. Today is a huge reminder to be so grateful to have her still in our lives and I personally continue to learn such important life lessons from her. She is a gift in our lives.

So, hug your family and friends a bit closer today, phone the others who were able to be with you and try to remember the ones who have passed. It is a day to be grateful for them all.

Wednesday, November 21, 2012

Quick Post

It is pre-dawn on a rainy morning the day before Thanksgiving. I am barely dressed and heading out the door within minutes. Mom has her cardiologist appointment this morning. What we thought was a problem with her lungs has turned out to be an issue with her heart. We are both a bit nervous.

When I get home later this afternoon, I will post an update on this page.

If you are travelling today, please be careful. Enjoy being with family.

The news is not good. Mom has a severe heart problem as it is not pumping properly even at rest. They are arranging an MRI next week then we will meet again in four weeks to review the results. They were stunned that she looked so great and that she was functioning. They asked that she not have her shot of bourbon at night, decrease her salt intake and begin to exercise everyday. They added two medications and removed one. They are to help her heart try to repair itself on a cellular level. She is not upset about it other than just shocked that anything is wrong with her. She tries so hard to be perfect.

I just told my brother and am waiting for my sister to phone.

Tuesday, November 20, 2012

Internet Surfing into the Night

Back to the rehab class today after a week off due to the ILD Support Meeting and the Liver Clinic appointment. Sherman has been fighting a cold and will also be returning today.

Hopefully, it is going to be a quiet day. The calm before the storm. I am meeting mom at 7:00AM tomorrow for her 8:30 appointment with a cardiologist for their first meet and greet. I don't think we will be told what is wrong with her heart but I think he will order additional tests. She doesn't seem worried about it all just a bit disappointed because she always thought she had a healthy heart.

Playing around the Internet last night, I found some reviews of William's current tour. It did a mom's heart good that they were all so glowing, even the New York Times. We also searched the reviews for a mention of the quality of the sound but alas, nothing. If it were poor, it would be mentioned so that is not necessarily a bad thing that it was a non-issue. It was fun to read them all. They will be doing a week-long series of concerts in Europe after Thanksgiving then I think he will be free until after the first of the year.

Also, I discovered that our neighbor had another DUI in October 2011. It was either his 7th or 8th. I keep praying that he doesn't kill someone. This is a man in his early 50s. One would think that eventually lessons would be learned.

Amazing what one can stumble upon.

Monday, November 19, 2012

Pre-Thanksgiving Advice

Thanksgiving. Relatives. Sometimes the two together can be a challenge. The stories I have heard and the experiences I have had makes me offer this: Try to be nice. Sometimes that is hard to do.

Try to overlook the stupid questions and comments. The one I give the top award to from one relative, "Well, you're getting better so you'll be fine." Second place to, "You get to have lung transplants? Fantastic!"

Try to take care of yourself. Make sure you get enough sleep the days leading up to the holiday. Ask for help cooking or setting the table or carrying in the groceries or even making restaurant reservations. It's okay.

Try to eat well. Sadly, holiday calories count. In the long run, those few extra pounds are just not worth it.

During Thanksgiving Day, try to take a moment to just listen to everything around you and watch the smile between spouses, children playing together, the laughter, the jokes, the teasing and so much more. The good and the not-so-good, it is our family. Try to be grateful. Smile.

Sunday, November 18, 2012

Emotional Damage - How NOT to Live with a Bad Diagnosis

I got a phone call yesterday from the wife of a long-time friend who has lupus. Besides affecting her joints, it had attacked her gastrointestinal system, was very painful and she had spent most of the past ten years in bed. I had written about her in past blogs. She had ruled her house from her bed, overused pain medications, loved the attention of being ill and expected everyone to put her first. For their three children, her illness had made for miserable childhoods. Suddenly, one is off to college and the other two are quickly following behind him.

It was our most coherent conversation ever. She realized that life was changing and everyone was moving forward with their lives. Suddenly, she had lost control. She now wanted her life back and the only way to do that was to remove most of her pain medications from her daily routine. She knew she would still have pain but she wanted to live without the fuzzy brain and from her bed anymore. She now takes just a minimal dose and is out of bed doing things during the day.

But, it may be too late to rescue the relationships with her husband and children. Only time will tell. Her handling of her disease is what I call "becoming the disease." It became her identity. It is what she talked about and complained about and only thought about. Everything, and I mean everything, came after it.

It is a sad way to live. Powerful and controlling but, in the end, sad. At the ILD Support Group last week, I spoke to the group about having respect for the disease and giving it the attention it needs but to not let it run our lives. Fold it in. Adjust for it. But, don't let the disease drive it. Clearly, she is an example of how not to live with a bad diagnosis.

Saturday, November 17, 2012

Racing, Rain and Rehab

Qualifying is today and the first Formula 1 race on the brand new Circuit of the Americas track outside of Austin, Texas will be tomorrow. An exciting weekend for all racing fans.

It is raining, finally. The air smells clean, the ocean is a bit wild and all the tourists are gone. I am going over the pass to the other rehab gym to workout then will stop at the butcher's and Trader Joe's. Since we are going to my sister's for Thanksgiving this year, that will be my last stop in a market until after the holiday.

The first of three rehearsals with the little violin students was last evening. It went really well and we'll be ready for the Christmas concert in two weeks. Tomorrow, there is a fundraising concert at 3:00 in town to help fund the music student scholarships awarded during the orchestra's May concert. I must attend.

When I get home this afternoon, the goal is to wash the sheets from all three beds, which means that they also will need to be ironed as well. It will take a few hours and lots of energy to remake them. It is best to get them done now instead of nearer to Christmas when my time and energy levels will be depleted.

A wet, quiet weekend ahead. My favorite!

Friday, November 16, 2012

The Good, the Bad and the Very Frustrating

Great news to announce, scary news and also a very negative, frustrating story to tell. Good news first: I was seen at the Liver Clinic yesterday and met with the intake nurse practitioner. We fell in love. He said after reading my file about living with a serious lung disease, he expected to see a sad, teary, depressed person. I was dressed to the nines, he stopped in his tracks after opening the door and said, "You look fabulous!" Love that.

We bonded. He also listened to my lungs and COULD NOT HEAR ANY BRONCHITIS!!!!! That is the great news. When my wonderful doctor arrived, he hugged me! I am so blessed with the very best doctors. He wants an ultrasound just to see how my liver and pancreas are doing and I booked it for early December. We are trying to assess if inflammation has arrived in those organs which could cause non-alcoholic cirrhosis. That would stop the goal of having lung transplants in the future. Important. 

I was so exhausted from the week that I took myself out to lunch then went home for a long nap. Last night, we went to Wayne and Jill's house for a nice visit. Their son, Evan was injured in a major dirt bike accident. Fortunately, he was wearing a brace to protect his neck. Unfortunately, in protecting his neck, they are designed to put the force of the fall onto the collarbones. It broke. The real problem, though, was that the foot pedal ended up inside his armpit. Deep inside. Draining tubes then stitches happened. All this needs to be cleaned and rebandaged everyday, which seems to be the most painful part of his recovery process. I mentioned that he needed some candy to get him through this and will drop off a nice box of See's Candy today.

Now the frustrating story: No names. Relatives. A medical issues is not being managed well. The patient likes playing the victim and will not speak out to the doctor. He will not allow anyone to go with him to the appointments. The other relative he lives with is similar. There had been a medical issue that he would not address until it was quite advanced. Now it seems that the inflammation has spread through his entire body, he has a high fever and he is becoming unresponsive. Simply, he is dying. He is waiting to return to the doctor for a Wednesday appointment. For over a year, I have been trying to work with them to be verbal about the issues and expect further tests or even a stay in the hospital to determine the root of the problem. After more than a year, there is still no diagnosis to a very dramatic problem. I have tried. I have offered lots of support and information. I must remember that old phrase: you can bring a horse to water but you can't make him drink. That is so true here. Michael is contacting another relative this morning to try to get her more involved. They respect her. They listen to her. It is so frustrating because I believe this person should not be as ill as he is. 

Scary News: Mom got her results from her echo cardiogram. It is not good. She read the report and it is very medical. The only thing she remembered was, left bundle branch blocked. Doesn't sound too awful until you Google it. This is usually a result of an underlying serious heart condition. I am going to read the whole report when I see her today and talk with the cardiac rehab nurses at rehab this morning  about what it really means to have this in non-medical terms. I am just not ready to lose her.

Thursday, November 15, 2012

Liver Clinic Today

Gardening - Done! Let the rains begin!

Yesterday flew by and I stayed home all day. The orchestra rehearsal last night was satisfying and the music is coming together. There will be a fundraising concert featuring the first cellist this Sunday and the proceeds will be awarded to music students during the May orchestra concert. I want to support that. Children + Music = Bliss in my heart.

Within the hour, I must be in the car heading north into the city once again. My car knows the way, by now! I have a Liver Clinic appointment. My numbers from the last labs we not great and I suspect that he is going to want a biopsy. I really don't want one, especally right now when I am tying to workout to recover some lung capacity. I have a fatty liver due to the long-term prednisone use.

Afterwards, I am going to try to get to the rehab class after the appointment. It might just be too much, but we will see.

Wednesday, November 14, 2012

Palliative Care- Symptom Management Clinic for Advanced Lung Disease Announced at ILD Support Group Meeting

Dr. Michelle Milic was the guest speaker at the November ILD Support Group meeting yesterday. She is a pulmonologist who just sat for her Palliative Care boards. Thanks to a large donation, she is beginning an entirely new program called Symptom Management Clinic specifically designed for advanced lung disease patients. It will be palliative care. The university currently has a similar program at their cancer center.

What is Palliative Care? From the Internet:
Palliative care (pronounced pal-lee-uh-tiv) is specialized medical care for people with serious illnesses. It focuses on providing patients with relief from symptoms, pain and stress of a serious illness – whatever the diagnosis. The goal is to improve quality of life for both the patient and the family.

The symptoms to be addressed in this clinic for ILD patients will include:
  • Shortness of breath
  • Fatigue
  • Cough
  • Depression
  • Anxiety 

Staff in this new clinic will include a nurse, palliative certified physician, chaplain and social worker. Issues addressed will include symptom management, coping skills, pain management, relationships, physiological/social issues and spiritual support.

Social isolation is so common for people with a chronic disease. The clinic will help patients with specifics on how to deal with the physical and emotional issues of simply getting out of the house and into life. That will help improve their daily quality of life and lessen the feelings of isolation.

Harvard did a study of lung cancer patients, which offered a choice of the usual care or palliative care. They found that the patients who received palliative care reported fewer symptoms, less depression and lived an average of three months longer.

There were many new people at the meeting and the discussion focused on sleep issues and coughing. Sally, who heads the Support Group, was rather shocked to discover how many of us have problems with sleep. She will now contact the sleep expert – also a pulmonologist – to speak to us at an upcoming meeting. I have written in past blogs about “night terrors” and many hours of being awake some night.

I have always been grateful that my specific ILD doesn’t have a phlegm or wet coughing issue. Some of the stories I heard were awful. It really does affect the quality of life of so many ILD patients. One man spoke about anytime he experiences changes of temperature – leaving the house, as an example – the “waterworks” begin. His nose runs and very dramatic coughing starts. One person mentioned that he no longer goes to movies, plays or concerts because he was worried that the coughing would begin and bother other people. These coughing sessions are not just a few hackings; they are long, laborious, physical exercises. One person mentioned that his saturation rated dropped into the 70s while he was coughing.

The conversation reminded me of my own issue with aspirating a sip of coffee years ago. I experienced a deep cough trying to get it out of my lungs and felt the terrifying inability to inhale. I thought I was going to pass out. One other person at the meeting also described the same situation in which he often experiences – he had esophageal cancer two years ago which may explain why he experiences this often.

So, I asked: Will the laborious coughing in which the saturation rate drops into the 70s or my own experience actually cause a person to pass out? It feels like you are going to blackout. She answered that the cause of my specific issue was that the lungs were protecting themselves from anymore coffee going into them so my vocal chords spasmed shut. No liquid in. No air in. Had I passed out, the vocal chords would have relaxed and air would have flowed into my lungs. Sally commented that she had often faced a seated person going through a coughing session at clinic and tried to have them focus on her demonstration of slow, purse-lipped breathing, which seemed to bring the coughing under control in many cases.

Oddly, knowing that I would have been able to breathe after I passed out made me feel better! I had visions of Michael trying to do CPR or even doing nothing until help arrived causing brain damage due to lack of oxygen.

It was a very interesting meeting. I think we helped an entire family who was at their first meeting after traveling several hours to attend. The father/husband had been newly diagnosed with an ILD and was at the beginning of his journey. We were able to offer him several suggestions including sleeping on a wedge and melatonin. He is seeing a local pulmonologist but had met with one of the university pulmonologist just once for a consultation. His wife noticed that he felt so much better after a small dosage run of prednisone. I explained that it is an anti-inflammatory drug and that they might want to see their doctor at the university clinic again to review his biopsy slides. So few ILDs respond to prednisone that they might want to revisit his diagnosis.

Susan and I had a nice lunch before the meeting. I thought she was retiring this week but due to calendar issues, she will actually leave her job in January. I am trying to encourage her to help write a book or pamphlet with all the information we have learned living with a lung disease to be distributed to newly diagnosed patients. She is an excellent writer.

As part of the new Symptoms Management Clinic, they will be offering a resource center. I would love to be part of that process. We, in the group, talked about having the latest research materials, appropriate articles in peer review journals, help with symptom management and so much more included in the center.

In other news: I received a phone call from my sister while waiting for Susan. Her daughter, Shelley had been notified as a friend of her Uncle Bill on Facebook that he had died. His wife posted that she lost her best friend on November 10th from cancer. Shelley was blindsided. She had no idea. She phoned her dad who also had not been notified. She still has not been able to reach his wife nor been notified of any funeral services and fears that they have already happened.

Bill was present at Shelley’s wedding just six months ago. As a person who had lived with Crohn’s Disease since the 1970s, he looked very thin which we thought was due to that disease. We had no idea he was dealing with cancer. Shocking.

Tuesday, November 13, 2012

A Moment in Time

Cheap advice - With e-mails to generals so in the news today, I will never forget what my mentor GG used to say to me. When we first got e-mail at the school where I worked, she said, "Never put anything in an e-mail that you don't want the world to know." Boy, that advice saved my butt a couple of times. Simple advice. One would think 4-Star Generals and the head of the CIA would know that.

A bit of time to remember - We met William at a German restaurant in the city early last evening. It was the sister restaurant of the East German one we enjoyed a few weeks ago. He took a cab two miles from the hotel and it took over 30 minutes. Nasty traffic due to lots of work being done on major arteries around the city.  He emerged from the cab looking fantastic, relaxed and happy. Why not? They are staying at the Four Seasons! Tough job! We split the happy hour platter of five sausages - ranging from wild boar to veal - and the boys had a beer. It was perfect. We talked and laughed. This was the last time we will be together before Christmas. He has a quick run in Europe later this week and into next. I sat and looked at the two men in my life as they were talking about the Mustang they rebuilt from the ground up together and the affection for each other was palatable. He is from us. He is our son. It all turned out just fine.

Fill the gas tank - Back into the city this morning to meet Susan for lunch before the ILD Support Group meeting. My personal gas tank will be empty tonight after a busy day and driving home in rush hour traffic. Early to bed!

Monday, November 12, 2012

Energy Conservation FAIL!

Energy conservation. Even after all these years of living with this lung disease, I still struggle with conserving my energy. On Sundays, I review the week ahead and plan where to fit in grocery shopping, showers, visits with my mom and music rehearsals. This week is going to be brutal and I am very concerned that it might just put me under. Energy conservation FAIL!

Today I am working out before meeting mom for a run to Target and a quick lunch. I want to be home to wait for William's phone call from the airport. He is flying in this afternoon for a concert tomorrow night so we are having dinner together this evening in the city. A late night. Energy conservation? Not a good start to a long week but I am thrilled to be spending some time with him.

Tuesday, I am meeting Susan for lunch before our ILD Support Group meeting in the city, Wednesday will be rehab and a late orchestra rehearsal, Thursday is an early Liver Clinic appointment followed by the rehab class and Friday begins a series of 5:00 rehearsals with the little violin kids after working out in the morning. There is not one day where I can take some time off or take a nap. It is going to be just over the top.

When I first became ill, I was so worried that I would be housebound and have nowhere to go and nothing to do. HA! I have remade my life with new friends, returned to performing with an orchestra and work out everyday. We even have learned to travel well and often. Life actually expanded instead of constricting. But, I still need to constantly adjust my life to stay as active as possible while always being aware of the need for energy conservation. I also discovered that staying active is the secret to living well with a bad diagnosis.

Sunday, November 11, 2012

Everything I Learned in Pulmonary Rehab

After Friday's blog, I thought it also might helpful to understand the specifics of what was taught in pulmonary rehab. This list, complied in 2009, is what I learned during the first 8-weeks of classes and exercising, which I still follow today.

Everything I learned in rehab:
  • To feel what it is to be low of oxygen. I can tell when it gets down to or below 89%. I used to try and work through it but now realize what harm it does to my heart and other organs.
  • I just can’t try to ignore the disease as it must be a priority. It must be folded into our lives.
  • Learned about the disease and the physiology of it.
  • Flu and pneumonia shots are a must.
  • Relaxation classes taught me techniques to stop, meditate and relax my body so the saturation rate increases.
  • Energy conservation. This is key to keep doing activities of daily living. I can do them all just not on the same days but must plan ahead.
  • Fight to maintain current activities and to continue them until I can't anymore.
  • Short trips are fine but must plan for them. Oxygen must be ordered ahead to be at the destination. Through the years, we have learned to avoid high altitudes and to pace ourselves while on the road. Also, I try to take naps during traveling. It is important to stop and move at least every two hours. Try not to over-do.
  • Pursed-lipped breathing and diaphragm breathing – use this while walking on flats, food shopping. This technique can slightly raise saturation rates enough to help.
  • How to make the bed without being out of breath. We bought the tallest bed we could find. I don't have to lean over to make it so I am not short of breath.
  • Take cooler showers because hot showers make me short of breath.
  • We were advised to wear slip on shoes so leaning over doesn't cause shortness of breath. I have not had to do this yet!
  • Cook dinner one night and use leftovers for the next 2 or 3 nights.
  • Use paper plates – more energy conservation. This changed our lives!
  • How to shop for groceries using energy conservation.
  • Learned all about germs – worry about colds, flu and pneumonia. Wash hand constantly. Wipe down shopping carts with bleach wipes and keep Purel in car and use whenever returning to car. Wash my hands the moment I return home.
  • Rehab grew muscles so I can stand longer and carry heavy object without being short of breath.
  • When faced with a set of stairs, we learned not to panic and to purse-lip breathe through bad situations.
  • The importance of slowing down – probably the hardest thing for me to learn.
  • It is okay to take a nap or to take rest periods. The world won't end!

Saturday, November 10, 2012

Celebrating 59

Well, it happened. I am another year older. The phone rang most of the morning with calls from mom, my brother, sister and Michael's sister. Facebook is amazing as I think I received happy wishes from so many people I haven't heard from in a bit. It was lovely.

Michael and I were able to enjoy the city together on a clear, cool, sparkling day. On a friend's recommendation, we made reservations at Cafe de la Presse located just across the street from the Chinese Arch to Chinatown. It sits on a famous corner usually filled with tourists taking photos of the arch.

We arrived early, of course. We took a table in the bar area for a coffee cocktail when suddenly a nice family sat down next to us. When they began looking at a map, we realized they were tourists. I asked where they were from and, oh my, I think we have made friends for life. They were from New York and had planned this vacation before the big storms. Their Upper West Side apartment was fine but a vacation home was damaged. We gave them several restaurant recommendations then the conversation turned to their beautiful 5-year old daughter. She takes piano lessons. That opened my floodgates! Within about five minutes, I offered everything I know about children and music lessons and music teachers and selection of instruments and later learning another instruments from a different family and on and on. Michael was dragging me to our waiting table when the mom quickly handed me her business card.

Our lunch. We were the first people to be seated and had the window. It was a similar menu to Presse in Seattle where William took us for lunch but it was so much more expensive and not as good. Still, it was the best we have eaten locally.

It began with a small charcuterie of meats and pate followed by a very thin flatbread covered in smoked salmon, capers, onions and creme fraiche then the main event - Croque Madame. We split it. It was a ham and cheese sandwich grilled them covered in either bechamel sauce or, in this case, white cheese. As it is a Madame, it also featured a soft-cooked egg on top.

Dessert? Oh yes. Michael had a bread pudding-like dessert made with croissants, a bit of chocolate, toffee and vanilla bean gelato on top. I had the apple tartin.

While looking out the window, Michael waved at a gentleman walking by and he waved back! It was the former speaker of the house for the state and the former mayor of SF - Willie Brown. He looked fantastic.

We walked down to Union Square and into several stores. My most favorite store was Gumps. We were so surprise to see it decorated for Christmas and Michael insisted on a photo in front of one of the displays.  I love Gumps. You can explore their goodies at

When we got home, I e-mailed the mom from New York. It may be the start of a nice relationship!

Friday, November 9, 2012

Living with an Interstitial Lung Disease

I thought this might be of interest. It is very personal and brought back some bad memories. It was part of the application for the long-term disability insurance and written on July 24, 2007 – approximately 18-months after my lung biopsy. I have come a long way physically from where I was back then, thanks to rehab. Specific questions were asked but I no longer have that paperwork. What I do have are the answers which are below. Don't miss my comments at the end.

1.  I have discovered that there is no typical day. My day depends on what I did the day before, what I need to plan to do the next day and what I must do that day. Through trial and error, I have found that I can do two adult daily living activities per day: shower, rehab, light gardening, cooking dinner or dining out. Due to rehab and increased muscles, I have found that I can sometimes add a third activity and not suffer the following day. This must be planned ahead in order for it to be successful. To continue making the bed, rehab has taught me to put blocks under the feet of the bed so it is higher as this will lessen the chance of being out of breath. We recently purchased a higher bed. (Being out of breath means that my organs are not getting the proper amount of oxygen.) I take a short, tepid shower every 3 to 4 days, as it is exhausting and it must be planned. I can blow dry my hair due to the muscles I have developed in rehab. Sometimes I become short of breath during it but not too often anymore. Afterwards, I still need to pause to control my breathing. On shower days, it takes quite a lot of work and energy to dress for the day. I drive just over an hour round trip to go to Pulmonary Rehabilitation twice a week for 1.5 hours and I do the same workout routine in another hospital 2 or 3 days a week. Rehab is my first priority. I need muscles to help survive the upcoming lung transplants and to get underneath the needed BMI. After rehab, I usually come home and rest (often nap), make or return phone calls or answer e-mails. Sometimes I enjoy working on word or card games to exercise my brain. We sometimes take a short car ride into town after dinner, just to get out.
CHANGED:  My life before my illness was dramatically different. I have listed many of the differences under #12. Nothing can happen on the spur of the moment. Everything must be planned so I can conserve energy. I still struggle making myself slow down. My son recently lectured me about trying to talk and walk at the same time. I just don’t have the breath.  We used to entertain a lot. All family gatherings were at our home. That is just not the case anymore. In the past, we hosted three weddings in our home, I prepared all the food, and I cleaned my house and worked in my gardens. I used to be very social and upbeat and now I avoid seeing people who don’t know I’m ill, I’m more reserved and very envious of people who can function unimpeded. I used to enjoy working, traveling, shopping, taking hot showers, cooking large gourmet dinners, hosting parties, and performing music. My husband and I used to take long walks along the coast every weekend. We longer can take long walks together. He has become a caretaker.

2.    All meals have become very easy and light. Breakfast may be a hard-boiled egg and lunch may include leftovers or hot food from a supermarket. My husband and/or I make dinner. We have learned in rehab that in order to save my energy, we cook one thing to last for 2 or more nights. Dinners are often a shared packaged salad and protein baked in the oven or in a skillet. The leftover protein is served the following nights. As an example, we often cook a turkey breast that we eat with a vegetable one night and in a salad the following night. It is also served for lunch. All meals are served on paper plates to save my energy of washing the dishes, putting them in a dishwasher, then putting them back into the cupboard. Often the items in the sink are just forks and glasses. My husband often cleans up from dinner. We usually eat around 5:00. Gone are the days of large homemade dinners.

3.    At least once per week I need medication refills at Longs Drugs. We food shop together every week because I become overwhelmed and it is difficult for me to bring the groceries into the house. I do not shop for clothing very often and we purchased most of the Christmas presents in one day or online.

4.     We have just hired a gardener (NOTE: I fired them within a week.) as I have recently found that I do not have the strength or energy to maintain the gardens. My husband has handled the heavy trimming for a while. We have help with the housecleaning as that is clearly beyond what I can do. I can put clothes into the washer but find it difficult to transfer them to the dryer, as they are just too heavy. My husband also moves the dry wash into the bedroom.

5.    The goal is to leave the house five days per week for rehab (whether I feel like it or not) or doctor appointments via automobile. My husband and I often go food shopping, pickup dinner or go for a drive on the weekends. I always take naps on the weekends.

6.    If it can be planned ahead, I try to always accept an invitation to meet people for lunch or coffee. I feel that this contact with healthy people and rehab are the reasons that I am not on anti-depressants. Connecting with friends to talk about other things besides my illness is life saving. In the past few years, there have been weeks between invitations but recently; I have been having lunch with a friend almost weekly. I plan for and really look forward to these visits in which we very rarely talk about my illness. It is also extremely rare to have people over to our house. If we do, we serve prepared food from the market on paper platters. My mother comes to visit for 2 to 3 days every three to four months. She takes care of me while she is here and leaves the house cleaner than when she arrived. She and my son are the only people we have allowed to stay with us since I became ill. I just don’t have the strength to entertain house guests. Instead, I find it an escape to take short car trips (arrive in one day) to see my son, mother and mother-in-law. Some trips have been successful while others have not. The rehab staff has been working with me to learn how to travel without becoming ill. They continue to encourage me to travel more and have taught me to wear compression hose for my swelling ankles, stop at all rest stops, drink lots of water, keep eating light foods and try to sleep as often as possible. My husband drives.

7.    No one but my husband depends on me. I became ill after my son left home for college. I did visit my aunt for an hour once a week before rehab class. In the past two years, she did not require much other than chocolates, lotions and conversation. She passed away June 17, 2007.

8.    I have never had a problem with alcohol or drugs.

9.    The TV is on when I am home. I watch all the basic channels, as we do not have any premium channels.
CHANGE:  I watch a lot more TV than I have ever watched in my life. It makes it less lonely.

10.  I am in bed by 8:00 and usually asleep by 9:00. Due to the illness, I sleep on a foam wedge and I need 2 liters of oxygen. Insomnia has sometimes been an issue. The pattern is that I will sleep for 4 to 6 hours, be awake for 1 to 2 hours then fall back asleep for 1 to 2 hours. During these wakeful periods, I move to the family room and turn on the TV.  After a few days of this pattern, I am so exhausted I take a single Tylenol PM that allows me a full eight hours of sleep. I know when I have over-extended myself because I will sleep straight for 12 hours or more followed by several more days of extended sleep. I usually take at least one nap every day during the weekend and often take a nap after rehab, which may last anywhere from 20 minutes to 2 hours.

11.  I have found it increasingly difficult to take care of my personal needs. After a shower, I take a break to catch my breath before I get dressed. Often I must stop dressing in order to get my breathing and sweating under control. I do not try on clothes at a store as I run out of breath. I need help with the laundry, food and clothes shopping, dinner preparation, housecleaning, gardening, and taking care of my spouse. I could not live on my own at this point.

12. I used to be so proud of my stamina level, ability to work long hours and do it all. Energy conservation is the biggest and constant challenge. We stay home more than we ever have in our married life. I used to cooked great dinners and we went out to eat 3 or 4 nights a week. Now dinner has become very basic and simple and we eat out less, currently about one night every two weeks. One of the biggest changes has been not being able to play music. I loved performing with various groups and orchestras. When I became ill, it became impossible to even carry the instrument (string bass) and even more impossible to participate in the hours of rehearsals. I used to love to go to the movies but have gone to fewer than six movies in the past two years. I just don’t have the energy for it. I have been to several live concerts (mostly to see our son) where we have been separated from the crowd and provided very comfortable private viewing. These have required a great amount of preparation and recovery time. I greatly miss contact with children. As I am still on prednisone and am currently on a bone marrow drug, I have no immune system so I try to also avoid large groups of people. I have experienced many reactions to the various drugs including: shingles, weight gain, excessive bruising, thrush, loose bowels, nausea, fatigue, high pressure in my eyes, increased sweating, leg cramps, swelling of feet and ankles, lose of bone density, manic (in the past), compromised immune system (Cellcept) and an increase risk of infection. When I get fatigued, my saturation rate drop and I do not function well mentally. Memory problems are prevalent and I have lost much of my short-term memory for names and dates. I sometimes struggle to find a word. I am told that it is probably related to the decrease in oxygen. Concentration and focus problems abound. I used to devour books but at this point, I read magazine articles. I just can’t focus. Larger tasks feel overwhelming. I had begun some larger projects and found that I just couldn’t complete them (creating new photo albums, sewing a blanket, sorting music). I have been a “walker” all of my life. As I child, we walked into town or to go to church. In high school, we often walked six miles to the shopping center for fun. While dating, my husband and I walked for hours and it has continued throughout our marriage. For years, after dinner we would walk along Main Street in XXX. On weekends, we hiked or rode our bikes for endless miles along the coast. All of this has ended. I cannot walk quickly. I cannot run up stairs. I cannot walk up long ramps. For over a year, we took ballroom dancing lessons with the Arthur Murray Dance Studios and we used to love to dance with each other. This has become impossible. We had traveled a great deal within the US and Canada as well as the Caribbean and Europe. I have not been well enough to fly. We have just recently been given permission by Dr. K. to fly with supplemental oxygen. As I need oxygen at night, all trips must include preparation to have the oxygen ready for us at the other end. I loved lotions and perfumes. Now I go through periods of super sensitivity to all aromas. While in this period, I can smell people’s deodorant and even the preservative in lipstick. I no longer wear much makeup or any lotions. I cannot breathe well in hot or humid weather. Our location on the coast in the perfect environment for my breathing: cool and moist. I had planned to work another 15 years and to retire away from the Bay Area. We now need to stay in the area not only for the outstanding medical care but the necessity of a low elevation and a cool climate. I have given up all caffeine except for a half of a cup of coffee every morning. If I drink more, I find that it makes me sweat, increases my heart rate and makes it hard to breathe. I still tend to panic in situations when I think I won’t be able to do something or breathe. Rehab has taught me to try to relax and control my breathing. Sometimes that is easier said than done.

How was that for light reading? 
I hope it has helpful information and hope for others at the beginning of the process of living with an ILD. 

In other news, today is my birthday. I am 59 years old today. My entire 50s have been dealing with this illness, even though I was not diagnosed until I was barely 52-years old. After reading this document, I am proud that I have fought and continue to fight a valiant battle. I won't go quietly into the night. Just not my style!

Thursday, November 8, 2012

Practical Advice

I received an e-mail regarding next week’s ILD Support Group meeting. Dr. Michelle Milic, who spent time with us in the past talking about her hopes for a pulmonary symptom management clinic and program and was obtaining input as far as what such a clinic or program should look like.

The focus of this meeting will be to continue the discussion about symptoms, daily living, worries both practical and existential associated with living with ILD, as well as the things that make life better.

Oh, I have so much to say. Looking back on my experiences dealing with this disease on a personal, professional, financial and medically has been a learning experience. I will think about the questions above and report back.

What comes to mind is practical advice I would give to others who are suddenly confronted with a bad diagnosis:
  • Document everything. The memory fades. Four years later, the lawyers what to know when a certain test happened or when a specific drug was introduced. I called it a lung history document. It listed every doctor appointment and a brief description of the visit. I also included the dates of all medical tests. 
  • If a lawsuit is involved (Worker’s Comp, for example), realize that  phones and cell phones are probably bugged. Also, it is common to have a person followed for 3-4 months. Every day. Everywhere. We realized a GPS was on our car. They are sneaky. Give no information to anyone phoning the house. They tried so many tactics to get information out of me. They also went through our garbage.
  • If a patient is prescribed prednisone for the first time, there needs to a referral to meet with a nutritionist to avoid gaining the 30-60 pounds so many of us have gained that first time.
  • A social worker would have been helpful. At the county hospital, one is assigned to help people through the paperwork and were almost advocates to help patients through the medical process. It would be great for each new patient to have a meeting or two with a social worker. There are deadlines for SSI Disability and State Disability applications as well as Long-Term Disability Insurance. A social worker could help with these dates and processes.
  • Pulmonary rehab. It is a must for everyone with a lung disease. It should be considered part of the treatment.

Those are the first things that come to mind. While going through my computer files, I found part of an application that really spoke about how our lives were so limited during the first few years of my diagnosis. I had forgotten. It was amazing to read and to realize how far I have come physically. It will be in tomorrow’s blog.

Wednesday, November 7, 2012

March Towards Friday

The allergy pill worked all day yesterday and I was able to hold onto the 1 liter of supplemental oxygen during rehab. I continue on my march towards improvement to my lungs in anticipation of the November 28th appointment with Dr. K.

It was gorgeous yesterday and our shorts were worn one last time before the weather changed last night. Back into the closet until the spring. Rain is due tomorrow.

Over three flats of flowers are waiting to be planted in the garden today after I cut the grass. That will take a few hours and there will be a hint of dirt under my fingernails at orchestra rehearsal tonight.

Betty is still not totally recovered from her burst appendix but finally discovered what was the cause of her pain, which continued after her surgery. She has a two-inch hernia where part of her pancreas and intestines slip in and out, causing the pain. She has postponed that surgery until after the first of the year as she feels she needs to get stronger.

The days are counting down towards my birthday on Friday. Fifty-nine years old. Sounds so old. Grateful for one more year.

Tuesday, November 6, 2012

Cold Coming?

The day has finally arrived. Do your homework and vote.

The house was 75 degrees this morning and it is expected to be in the mid-80s today. It will drop to normal levels tomorrow and our winter pattern begins. Rain is due on Thursday. I have not planted the winter annuals yet and am planning to make a run to the nursery this morning before going to the rehab class.

Mom was thrilled that she doubled her money at the Indian casino playing the .25 and 1.00 machines on Saturday. She was having a problem with the Comcast bill, we found a storefront to ask questions and pay the bill but the line was out the door. Not surprisingly, we chatted with everyone around us and the time just flew by. The man who helped her mentioned that he was also a member of the Red Cross and wanted to get to the east coast but Comcast said he would have to take vacation time. He was itching to go as his brother and sister have been impacted by the storm. Nice man.

The bad news: something got me. My nose was constantly running and I was sneezing throughout the day. I am hoping it is allergies and not a cold. Last night, I did my formula to get rid of a cold with an  antihistamine and Vick's Vapor Rub on my feet under socks. This morning, I feel great but the antihistamine is a 12-hour one so we will see if it is truly gone in about an hour or so. I can't get sick. Not right now.

Monday, November 5, 2012

Fighting the Battle

We have kept our heads down and just focused on my fight to regain lung capacity and banish the bronchitis. I feel we have been living outside of the social bubble. We don't go anywhere and we are not seeing anyone. In the evenings, we are in our PJs and in our recliners right after an early dinner. It is not good but it is the way it has to be for now. I am fighting off the threat of lung transplants in the near future. I am in the fight for my life.

My birthday is later this week. It is a reminder that I have lived longer than expected and that another year is one step closer. Not my favorite thing to celebrate. Mom told me that she and all older people feel the same way. I look forward to a phone call from William. I look forward to spending the entire weekday with Michael but there will still be the shadow of one-less-year lingering over my shoulder the whole day. 

It is back to rehab again this morning just as it was on Sunday. Rehab. The weapon I am using in this battle. Rehab. Where I can gather evidence and data to determine if I am improving or not. Last week, I was able to reduce my oxygen needs from 2 liters to just one. A good week. In two weeks from now, maybe, just maybe, I will be able to workout without any supplemental oxygen. The bronchitis will be gone. The inflammation will be lessened. My lung capacity will be better. 

So, I am fighting the battle right now. In four more weeks, we will find out if I have won the recent war.

Sunday, November 4, 2012


We forgot to change the clocks back so it was just a few minutes ago that we realized that we have been awake since 2AM! There is definitely going to be a nap later on today. We are watching the F1 race right now, will have some breakfast then head over the hill. I am going to workout at the other rehab while Michael is finishing up some things at the shop.

Yesterday, mom went on a bus trip to an Indian casino with group of people from a Filipino club. They have embraced her and this was her second trip with them. One of the other women at her independent living center invited her along last time. She had a ball. I haven't heard from her but I hope she at least broke even!

While she was having fun, I was pulling all the summer annuals from the front yard and other yard work. Later, I sat on the side yard swing for almost an hour reading a fascinating book about art thefts.

But, throughout the day yesterday, I was reminded that I needed to be grateful that I am as active as I am, considering the ten years I have been living with this disease. As I was hauling barrels of yard waste to the garden recycling bin, carrying a ladder out to do a bit of trimming, crawling along the garden bed turning the dirt and even walking the garden with a large glass of water when it was all finished, I was able to do it all without thought. Yes, I was wearing oxygen and a mask but I was able to do what I wanted. Remarkable.

Saturday, November 3, 2012

Breathing and F1

Qualifying for the F1 race from Abu Dhabi, UAE is on live TV on Speed Channel this morning. The race itself will be aired tomorrow morning our time, late afternoon their time and into their night due to the high temperatures. It is hot there! Should be 90 degrees tomorrow, which is as tough on the drivers as it is to the race cars. Qualifying is so important for starting positions as the track is beautiful but very difficult for passing. This is the time of year when all the drivers are negotiating their rides for next year. Lots of gossip and rumors. Who is driving for which team next year? Who is retiring?

But the real excitement for those of us in the US will happen for the first time on Sunday, November 18: 2012 Formula 1 United States Grand Prix. It will be on a brand new circuit just outside of Austin, Texas. It will bring F1 back on American soil. Hopefully, it will also bring Americans into the F1 family. As there are no American born drivers in F1, there is hope that this new track will inspire interest in the sport.

It was a surprisingly busy week last week so I am taking it easy this weekend. The weather will be in the 70s so I am looking forward to gardening then reading out on the back swing this afternoon. We turned the heater on for the first time this morning as Fall is definitely here - the nights are suddenly cold.

My breathing? My saturation levels held steady during rehab yesterday. I can see the muscle definition coming back to my legs and arms. I am sweating less. All the work is in anticipation of seeing Dr. K. in four weeks with an improvement in my PFTs.

Friday, November 2, 2012

Suddenly Great News

A quick recap: I have been struggling with acute bronchitis for over five months this year and really can't shake it. My lung doctor believed there was nothing more we could do after two runs of antibiotics and a huge increase of prednisone couldn't get rid of it. She scheduled to see me in six weeks. I am determine to arrive at that appointment showing an improvement in my spirometry and DLCO. How? Exercise. I had not worked out in over two months and I know in my heart that I have been able to postpone lung transplants with daily, consistent pulmonary rehab. I returned to rehab two weeks ago and I see the doctor in four weeks.

During the rehab class on Tuesday, my saturation level on the treadmill, where I desaturated the most, was holding firm at 96% on 2 liters of supplemental oxygen. I mentioned that I would like to try 1 liter of oxygen during Thursday's class.

Yesterday, I worked out hard on every piece of equipment and my saturation level on the treadmill was 93% on one liter of oxygen. Remarkable. Something is working and I believe it is the exercise.

Please, please, if you are struggling with a lung disease, any lung disease, please asked your doctor about pulmonary rehab and find a program at a hospital near you. It will extend your life. It will improve the quality of your life. It may even postpone lung transplants. And, you will develop remarkable muscles in the process!

Thursday, November 1, 2012

Halloween. Done.

What a night! Natalie and kids arrived all dressed up; Natalie as a witch, Winnie as Power Ranger and Oliver was Buzz Lightyear. The kids were so excited and were even more thrilled when presented with their goodie bags. Oliver, who is not allowed to eat much sugar, had one hand holding a lollipop while the other clutched a Halloween cookie. He said that Halloween was his most favorite day ever. Love that. They stayed almost an hour before Melanie came down with three girlfriends for some birthday cake. One group coming in, one group going out to trick or treat the neighborhood!

The girls were so cute but it was hard to have a decent conversation. I so want to spend some time with Melanie so we can have a good chat. Maybe a cup of coffee together. Something.

After cake, they left and we had a moment of silence before Natalie and her entire family including Ethan came back to show us all their goodies. They loved being in our neighborhood as it is so safe and not crowded with people or cars. They headed home.

After 8:30, our house was quiet again, no more visitors rang our doorbells asking for tricks or treats and I put away most of the decorations. Out came the pilgrims. It's onto Thanksgiving with Christmas just around the corner!