Living Well with a Bad Diagnosis - Lung Disease

Sunday, April 30, 2017

Dream Machines

I wish I could sneak out to take a photo right now, almost 7AM this Sunday morning. Our little town has a yearly fundraiser for the Senior Center at the airport that features fancy cars and fancy airplanes. Michael had been many times and really enjoyed the interesting automobiles, of course.

At this very moment and for the next two hours, he is sitting in a chair with a cup of coffee and watching all the fancy cars drive by our housing complex on the way to the airport. (The Senior Center is one of our local charities we donate to every year. I felt very guilty about this the first time he didn't actually go to the event but still saw the cars.)

He is also being joined by two of the neighbor's. Manly talk is happening!

In previous years, friends from over the hill will spot him sitting on the side of the road, stop, have a chat then continue on. He really looks forward to this morning.

My knee looks better this morning but I still can't walk without the walker. I am not able to put my full weight on it. The plan for mom's eye doctor appointment tomorrow is to have Michael help me into my car, drive over to mom's, have her meet me in the parking area, drive her to the eye doctor, have her go to the appointment while I stay close to the bathroom, we will have lunch in their cafe then I will drop her at her apartment before I head home. I think I can do it. I just need to get down the two front stairs at our house. That is going to be the hardest challenge of the day!

Today's Formula 1 Race from Russia looks interesting. A different driver has the pole position and a chance to win his first race. With the new owners of F1 and all the new rules and regulations, it is going to be a very interesting racing season.

Friday, April 28, 2017

Only Day 3

We tried to see if I could get into the shower this morning but I couldn't take that step up, putting my full weight either in the shower or the one foot out of the shower, so it has to wait. I am able to put most of my weight on the left leg but not the full weight. But, that is a huge improvement in a short period of time. We took off the ace bandages for the day and I was shocked at the swelling of my entire knee. We have a long way to go.

I have a huge amount of empathy for anyone in a wheelchair or needing help walking. It is so limiting. I understand how it is easy to just stay home instead of fighting to get out. I also understand how that can bring about depression.

Michael keeps me laughing and reminding me that this is going to take some time to heal. I am doing well because of him. We are both exhausted at the end of the day and are sleeping really well!

Leslie, Michael's cousin, had knee surgery last year and had to not put any weight on it for six weeks. She was so happy when she was able to get up but a couple of months later, she needed to redo the surgery, so another six weeks down. I am thinking about her a lot right now.

Thursday, April 27, 2017

Bowling Injury?!?


My world has become very small! Yesterday, we were so looking forward to our plans of going bowling for the first time in three decades. It was a nasty, rainy day which was perfect for bowling. We arrived as it opened and made the young woman laugh when we asked to be reminded how to score. She said it must have been a long time since our last bowling game since it was now automatic!

It was a very cool bowling alley with views of the ocean across the highway from our favorite restaurant with the crab sandwiches right on the ocean. We were going to head there for lunch until...

We were in the 5th frame and I was going for a spare. I paused. I aimed at the one pin. I let go. I watched and backed away as it went down the alley. Suddenly, my left foot slipped, I tried to stop from falling backward and somehow twisted my left knee. I heard a crack. Not a pop, a crack.

But, I did make the spare!

I was on my back in pain. Michael lifted me up, I tried to put weight on my knee and was shocked at the level of pain. We were a long way from our car and there was no way I could walk to it. What to do? The young woman behind the counter said she could help carry me, she and Michael made a seat with their arms and I was in the car very quickly.

A bowling injury! I have never met another soul who has had a bowling injury. We drove up to my university hospital and was escorted to the urgent care instead of the ER. Perfect. We were well loved and the doctor even removed the fluid on my knee from my Palm Springs fall in January.

X-rays happened. Nothing was broken but they wrote that it was a sprained knee. The doctor told me to elevate and ice it often and try to stay off of it for 2-3 days.

I made it through most of the night. Around midnight, the ace bandages were uncomfortable so I sat up, put my leg up and fell asleep in that position.

The good news this morning is that I can actually stand and put most of my weight on my left leg. When I move it, it hurts but it has vastly improved since last evening. Must be all the ice. Hope it keep improving and I can get my life back.

I have great respect for anyone who has to deal with crutches or a walker. Not a lot of fun.

Wednesday, April 26, 2017

Playing Santa

Magic happened in the rehab class. Gates and I met before our class to talk about how we were going to handle the oxygen equipment given to us by Kathy's husband. Major equipment. His only request was that it goes to people who really need it and I promised him that when it was no longer needed, it will be passed onto people who may not be able to afford it. 

There is a relatively new person in our class and I really love his wife. They are a good team as he is a stubborn Norwegian and she is the positive, encouraging, helpful, funny wife. Last week, they were asking everyone about their small potable oxygen equipment but made a face when they learned how much they cost. The reason for the sudden interest? "If we had one, we could fly to see our son in Palm Springs." Apparently, the drive is now too difficult for her husband so they haven't been down to see their son in quite a while. 

It tore at my heart.

Since Kathy's husband gave us three portable oxygen systems, two for us and one to give away, I asked Gates if it could go to this couple. He agreed and we took the wife aside yesterday. She teared up after hearing that the gorgeous POS was free to them. She said it has been difficult. 

Towards the end of class, I spoke with the wife and told her that I had to gather all the different plugs, batteries and paperwork so we planned to meet before class on Thursday to pass it off to them. She was so excited but said they weren't going to tell their family until it was in their hands. It was a dream come true. She asked my why we offered it to them and I told her that I was so touched that they just wanted to visit their son. Tears again.

How is that for a wonderful day?

Tuesday, April 25, 2017

Comprehensive, Coordinated Medical Care - Part 2

As my friend and I are hearing other's stories of their lack of comprehensive, coordinated medical care, we are realizing that it might be even more ingrained that we had even imagined. Do as little as possible. My friend related several examples to me of friends who had received this minimal care only to face huge medical complications. One ER doctor commented when a woman, who had been seen in repeated trips to her GP and urgent care, had been given completely inadequate medical care. The quote from him was, "I'll get in trouble for saying this, but we're supposed to do as little as possible."

There it is: as little as possible. 

At my rehab class, I asked the founder of the program her opinion of our thesis of a "little as possible" problem in the medical world. She soundly agreed and also said she believed it was being currently taught in medical schools. It did have to do with the insurance companies and doctors being rewarded when they keep costs down. It did have to do with the university hospitals demanding that the doctors treat so many patients per day. It did have to do with burn out and exhaustion and no time to contemplate a difficult case.  

My friend also made the point that if Dr. K. was a younger doctor, she might also feel the pressure to follow these same "new" philosophies. 

What can you do if you are not receiving comprehensive, coordinated medical care? 

By the time you have realized that you are not receiving the proper care, you have probably become sicker and sicker. Time is of the essence. 

My initial suggested solution was to keep searching for a doctor like my Dr. K., who provided such excellent care. My friend commented that doctors perceive people who doctor-hop searching for the right doctor as erratic when they really are just desperate. 

The scenario looks like this: While going from doctor to doctor trying to find comprehensive coordinated medical care, time is running out, the doctors perceive you as difficult so you will continue searching for the proper care until it is too late.

So what is the solution? Sadly, there isn't one. The best you can do is try to work with your doctor by asking that he/she:
  • is responsive to your emails or phone calls
  • explains your Pulmonary Function Tests or any other tests so that you fully understand what they mean
  • works with your other doctors to coordinated your care
  • has a plan for your treatment 
  • prescribes Pulmonary Rehab
Sounds so simple, yet... 

I have been on both sides of this problem and it was very frustrating being ignored by my very first doctor at the university hospital. It wasn't until Dr. K. took over my case and ran with it that I realized how poorly I had been treated. The list above? None were addressed by the first doctor. Zero.

It is so vital to have an interested physician who provides comprehensive, coordinated care for our difficult and long-term lung diseases. Actually, it's more than vital. It is life or death.

Monday, April 24, 2017

Comprehensive, Coordinated Medical Care - Part 1

Comprehensive, coordinated medical care. It is what we expect when we are being treated for a serious illness or disease. It is what I have been experiencing since meeting Dr. K. in 2005. When any of the other specialists want to perform surgery or an invasive medical test, I tell them they have to run it by Dr. K. then she and I talk about it.

She is the coordinator of my medical care.

The reasons I am alive today after contracting Hypersensitivity Pneumonitis in 2002:
  • The amazing pulmonologist Dr. K. leading my care
  • Good pharmaceuticals
  • Diet and exercise
All three were needed to work together for my exceptional quality of life and additional years on this planet. I was lucky. Dr. K. arrived to my university hospital in May of 2005 and realized that I was not being treated properly. I was being given prednisone. Period. "See you in three months." That was it. As little as possible. That was my care before she arrived on the scene. As head of the clinic, she told me not to see anyone but her and she took control of my case by:

1. Testing for GERD (fumes going into my lungs causing infections) even though I had no symptoms. It was such a serious case, drug resistant, that I had the surgery call a Nissen Fundoplication to insure the fumes were not able to flow into my lungs. That alone saved me from having so many infections and permanent scaring on my lungs.

2. Pulmonary Rehab. No doctor at the university hospital had mentioned it to me from October 2004-May 2005. I didn't know it existed. My first class was in October 2005 and I believe that this program has prolonged my life plus provided me with much needed social and emotional support through the years.

3. Tested for Sleep Apnea. I didn't have sleep apnea but it proved that I needed supplemental oxygen at night.

4. Airplane Test. This test was to determine if my lungs were strong enough to be in a plane in high altitude. Clearly, I failed that test. She banned me from flying, which I believe has saved my life. My friend died after his lungs crashed while flying, he sought lung transplants and died less than a year later. He told me he wished he had listened to my doctor instead of his own and had not flown.

5. Whether I was strong enough to exercise. There is actually a test to see if one is strong enough to exercise including a blood gas study while under stress and an echocardiogram.

6. Insisted that the antigen that caused my disease was in the portable classroom where I used to run the huge music program. She demanded that I leave the space immediately (May 2005) and then later placed me on permanent disability (August 2005).

7. She continues to test for Pulmonary Hypertension. Negative, so far.

I am primarily treated with prednisone and imuran then a bunch of other drugs to offset the side effects of the prednisone. When I become ill, Dr. K. will treat me with a run of antibiotics. This routine has worked for us for many years.

I am a huge advocate of diet and exercise. We can't control these diseases, we can only control what we put into our mouths and how hard we push ourselves to exercise everyday.

This is the trifecta of what has worked for me for 15 years after I was told I had just a few years to live.

SO WHAT HAPPENS WHEN THERE IS NO COMPREHENSIVE, COORDINATED CARE?

A friend lost her husband a year ago. In one of her emails, she wrote, "We never found a Dr. K." What she was saying is that they never found a doctor to provide full comprehensive, coordinated medical care. Most did as little as possible.

What happens when no physician has taken an interest to drive the treatment? To delve further when the test results are unusual? Sadly, it is a story I hear too frequently. Is it that the doctors are so driven by the hospitals and insurance companies to see so many patients a day and are too swamped to think deeper than the standard responses? As in my friend's case and also present at my university hospital, many of the pulmonologists are:
  • On the lung transplant team
  • Teaching
  • Doing research and publishing studies
  • On the boards of other clinics (several at my hospital are on boards internationally)
When is there time to consider a case that doesn't fall into the usual pattern? My friend walked through a maze of two university hospital pulmonology clinics and one hospital across the country trying to find out what was wrong with her husband. They were given bad information and poor treatment at almost every vital moment.

They had done all that they were told to do. But, at every turn, they were just left on their own. The one hospital across the country was the one who was offering the proper care and provided their opinion to the two local university hospital but they were not interested in even considering their comments. At one point, the pulmonologist at their little local hospital called one of the local university hospitals about moving him for more extensive care. They were told: No one will do anything for you now. Sadly, after an office visit, a doctor told him to check in with the lung transplant clinic then come back to see him in 4 months. In 4 months, my friend's husband was dead.

So, what can you do when you are bumping into this same mess of being treated as little as possible? No answers? No searching for answers? We are lay people, not medical people. We don't know the protocols for treatment. We are scared and trying to be "good patients." This is a whole new world. It is not until a few months into the process when you might realize you are not getting the proper care.

NEXT: What, if anything, can you do if you are not receiving comprehensive, coordinated medical care? 

Sunday, April 23, 2017

One Amazing Young Woman

The blog I have been promising is going to be posted in two parts beginning tomorrow. I really want to thank my friend for her wisdom in parsing it out with me. She made me delve further to realize some hard truths. Stay tuned.

In the meantime, we went to the Volunteer Appreciation Luncheon at my university hospital yesterday. A young woman sat at our table as her friend was seated at the special main table because she was being awarded youth volunteer of the year. We chatted and I was so impressed. This woman was in her second year of nursing school, fighting a very serious autoimmune disease, appreciated the love and support of her parents, was one smart cookie AND beautiful! She was inspirational.

Another older woman joined us and I watched as this young woman helped her at the buffet table, carried her plate back to the table, went back to get her some water and asked her if there was anything else she could do. Wow. Did I mention that she also was on a Patient Advisory Board and volunteered at the hospital? Friday night, they had participated in the prom for the teenagers who were in the hospital and couldn't attend their proms. All the girls had their hair and makeup done and a variety of prom dresses were offered. Everyone looked great! I saw the photos! Many of the SF 49ers arrived to talk, have photos taken and even danced. What a lovely event! What a lovely young woman!

I am still recovering from the wild week but am feeling better. Not so exhausted. After we got home, I organized paperwork, wrote some checks, made dinner but really, just took it easy. Today? I am hitting it hard! The special blog for tomorrow needs to be polished then the gardens are calling to me. Michael cut the grass but the weeds need to be pulled and the edges need to be defined. It is cooler today, perfect for gardening.

Friday, April 21, 2017

Rough Night

Last night, I was so tired from the late orchestra rehearsal that I fell asleep at 7PM again. Michael put me to bed and I was out until 9:30PM when I awakened feeling awful. I had made a roasted chicken for dinner, we were not sure if it was thoroughly cooked so we zapped it in the microwave, then it was fine. Unfortunately, I think I probably tasted an undercooked few bites of chicken and now my stomach was letting me know it was not happy.

Being tired already, it was hard to be awake and now I was fearful of moving. With the long ago surgery for GERD that helps one not to vomit, I tried to lay as still as possible. If I moved even a bit, my stomach would react. Michael woke up and I asked him to get a large bowl in case I needed it. I promised not to get sick all over him! So, with that promise, he drifted back to sleep. There I lay. After a while, it was midnight then 2AM. I realized that the problem had moved further south, so to speak. I got through the threat of vomit!

By 3AM, I moved to the living room for a change of venue and drifted off around 4AM until 6AM when Michael came out to check on me.

It's been a long night.

There is a two-hour gig with the Irish Fiddlers tonight, which I will be cancelling. Being so tired by this evening, I will not be able to focus on the music. Plus, we have to be up and out early for the meeting of the patient advisory board at my university hospital in the city at 10AM Saturday morning.

Mom and I will be together this morning but I don't think I will be able to spend all day with her. I won't be able to keep up with this 88-year old!

Thursday, April 20, 2017

Too Busy!

6:15PM. Warm couch. Full belly. Drifted off. Twenty-five minutes later, I woke up with a start, brushed my teeth, threw in my contact lenses, grabbed my bass and flew out the door. Orchestra rehearsal was happening for me for the first time in four weeks. I didn't want to be late!

It is a rather tough concert lineup. The hardest of the Mozart-only concert was the overture to the "Marriage of Figaro" but the good news was it had been pulled from the concert. Thank you! The other pieces are challenging but really doable. And we did! Gerry and I nailed it last night and I am feeling more confident about the upcoming concert.

The entire day was very satisfying. Michael had a good dentist appointment with no problems, we enjoyed a fantastic lunch together at a little place right on Main Street. They make the best Shawarmas. Afterward, we met with the attorney to begin the process of putting our house and finances into a trust, producing a medical power of attorney and wills. I also asked him to include an "appointment" statement in my will regarding my family's trust that will be totally funded in 25 years. I have to have in writing who I want my share to go to. William, of course.

We have been talking about getting all this done for years and it feels like we took a big giant step forward.

The only thing that seems lacking is sleep. I am tired and a bit worried about getting the full blown virus back again. Today is rather quiet, just rehab class. The housekeepers are due so I have to hang around town before picking up my car pool buddy for class. My plan is to take a nap this afternoon and to certainly head to bed early tonight. Friday is going to be extra busy. And Saturday! Oh my!


Wednesday, April 19, 2017

Taking Leave

I made it! It was a long day, it flew by but I survived! The rehab class was rather emotional. After speaking with a couple people who have not been there in a while due to illnesses, I got some very sad news. The woman who built the rehab program from the ground up has been fighting liver and lung cancer for about two years. She told me yesterday that there was another new tumor in her lung and she has already begun the very heavy duty chemo via a new port. She will be taking a leave from work from May 1 - Sept 1.

We talked about it and I mentioned that even just taking antibiotics requires a slow down to insure the drug to work its full potential. Imagine chemo! It will give her a good shot at fighting the cancer. I mentioned that it would be marvelous to awaken and decide what to do that day. A lovely walk? Lunch out? Read a book on the patio? These things just do not happen in her life right now as she is working too many hours.

And, the bonus was that the doctor said she wouldn't lose her hair. I said, "Hey, still have your hair? You can handle anything else. Piece of cake." We both laughed. We hugged. It was hard. I so hope she returns in September with the news that the tumors have vanished.

I made it to the Irish Fiddling gig at the brewery on time, it was a really good performance and a nice evening. I even played longer than expected.

Michael and I are together all day as he has a dentist appointment then we have an appointment with an attorney after lunch. Time for a trust. Time for formal wills. Just time to get it done. Maybe I can fit a nap into the afternoon so I will be fresh for the orchestra rehearsal tonight.

Tuesday, April 18, 2017

Cue the Music!

Still not well but trying to move forward, I went to the Irish Fiddling rehearsal last night, but just for an hour. Tonight, we are playing a local award winning brewery. It is a fun gig, not too busy on a Tuesday night and we will be able to try out a few new songs in front of an audience. But first, I am going to workout in the rehab class, which usually helps my energy level. Before the class, I am going to make some meatballs for dinner so I don't have to do anything but rest before the gig when I get home this afternoon.

After the short rehearsal, I fell into bed at 8PM and slept soundly until 7AM this morning. That was unusually rare for me to sleep so many hours. It felt great. I feel like I am ready for tonight.

So, I made it through yesterday with driving four times over the pass with mom, the rehearsal and filing our taxes. What was most important was that I finally made an appointment on Wednesday to have our financials and house put into a trust and new wills made. We love our tax people and they recommended an attorney here in town.

John's family phoned to announce that he was being released from the hospital and they were able to order the Eclipes Portable Oxygen System that we talked about on Sunday during our visit. I had made a copy of the user manual and, apparently, that really helped expedite the process. It is expected to arrive today. The magic of same day delivery!

Monday, April 17, 2017

Helpful Visit

It was a good day with mom: Easter in the garden of restaurant in the heart of Palo Alto. Just lovely being together to celebrate Easter and the beginning of Spring. It rained. Also, a sign of Spring!

Michael and I went to the hospital to visit our friend John, who was dealing with lung cancer and fluid in his thoracic cavity. This hospitalization was caused by an infection in his picc line for chemo. His room was filled with his daughter and her husband, his brother and his wife and their daughter. I had copied the user manual for my portable oxygen system, which he had asked Michael about during an earlier visit. As a mouth breather, he needed continuous flow instead of on demand access and my Eclipse is the best on the market, in my opinion.

His brother, who we know really well, was going to order it to be delivered overnight and be ready when John is released from the hospital in a couple of days. Hopefully. He thanked us so much for the information and asked me many questions about it. I felt like I helped a little bit.

Today is the beginning of a very busy week and I still am not feeling 100%. Hopefully, I will manage it well and not have another relapse. Fingers crossed!

Sunday, April 16, 2017

Happy Easter

Happy Easter! I so hope you are surrounded by family and friends today, always a reminder that life is good! Spring represents renewal. The cycle begins once again.

We are spending most of the day with mom. Flowers, brunch and cocktails (for them) will be involved. We are also going to visit a friend in the hospital struggling with constant fluid in his lungs while fighting cancer. An infection developed in his port and it all blew up from there. ICU is miserable so we hope to brighten his day.

I slept a lot yesterday, did some paperwork and worked on my blog about receiving the proper care for our lung diseases...or not. It should be ready next week. I also did a lot of cooking and I love having breakfast for many days sitting waiting for us, last night's dinner ready to go and the kitchen all cleaned up.

Enjoy your day. Enjoy a few Easter eggs!

Friday, April 14, 2017

Better

I am feeling better. Fingers crossed that it stays that way all day today! I did go to the rehab class yesterday and probably talked more than I worked out. Everyone wanted to hear about Kathy and Sherman's funerals.

My experiences and relationships in the class have changed so much since Dick and Sherman died. I really miss them. They were the reason I showed up twice a week, even if I didn't feel like it, as I knew they were waiting for me. I felt a bit disjointed yesterday though I talked with everyone. It was just very sad.

I am going to load up my portable oxygen to take with me today. Mom thought she might be getting a cold so I want to wear it under a mask when we are in the car together. Hopefully, it was just allergies but I really don't want to be exposed to yet another bug. We are meeting with her financial people here in town then will have a nice lunch. I so wanted to work in the gardens but I don't think I am well enough.

On my list of things to do on the weekend is the blog about the reason you may not being given full comprehensive care for your lung disease and the possible reasons. I spoke with the head of my rehab program yesterday and she confirmed the conclusions my friend and I have been surmising.

Also, we are taking mom to our traditional Easter brunch at a beautiful restaurant in Palo Alto. She and Michael will have cocktails at noon(!) and both of them will feel like they are doing something very naughty! Michael makes her laugh and she just adores him. I will sit back and just enjoy watching them. Nice memory making.

Happy Friday!

Thursday, April 13, 2017

Another Round of Virus

I felt fine yesterday morning but while food shopping in Safeway, my body revolted and I scurried to the restroom. After I got home, unpacked the food, I hit the wall of exhaustion again! I thought it was over! It was so bad that I set an alarm to wake me in time to get to my hair appointment. The minor headache, sore eye balls and my thinking was muddy again. It was back.

But wait, there's more!

After dinner, my face and ears were bright red so I took my temperature. I had a low fever. Cancel orchestra rehearsal! I was feeling pretty awful.

This morning, I feel fine and have no fever. I need to buy some protein at the organic market for this week's dinners before the rehab class. I so need to move my body and really want to go to the rehab class but, if I have a fever or feel any symptoms, I just can't.

I am sick of being sick. This bug has me by the tail.

Wednesday, April 12, 2017

Goodbye to Sherman

The services were in the chapel at the cemetery and we placed our flowers by Sherman's ashes. For a 92-years old man, it was surprising to see about 40 people at the service. His buddies from the union, family and a few of us from the rehab class all gathered to say goodbye and listen to words from a sweet priest. His daughters asked just before the services if I would say a few words. While the priest was speaking, I quickly prepared in my mind what I wanted to share.

I always told Sherman that I could do a 20-minute stand up routine on him. It was probably closer to five minutes long but it was marvelous to have the gathered group laugh at some of my stories and Michael told me afterward that it was really well done. I didn't tear up until the end.

We were invited to lunch and enjoyed talking with everyone. One of his union buddy's wife told me she wanted me to speak at her funeral! Every one came to our table to offer kind words and we continued to share stories about our friend.

It was a very emotional day and we were spent by the time we got home.

Life returns this morning. The list is long: shopping at Safeway, my hair appointment, an appointment with a tailor for a fitting of my new dress for the weddings, Trader Joe's for groceries. If not enough to do, there is also a long orchestra rehearsal tonight. One heck of a day ahead!

I will also be returning to the rehab class tomorrow. Many people are going to ask about Sherman's funeral and we will all be able to share our memories. It will be another emotional day but a good one.

Tuesday, April 11, 2017

Sherman's Funeral Today

Sherman's funeral is this morning. How do you say goodbye to your best friend? Someone who you spent an hour together to chat before the rehab classes twice a week. We shared secrets. We shared fears. We laughed a lot. Laughing is how I will remember him.

He was a very simple man who lived a very simple life. He drove a long distance truck everyday from his home and back. His wife didn't drive so when he got home in the morning, he would then drive the children to school and his wife to appointments.

When he, Dick and I started hanging out together, he would just breakout in laughter over something silly we would do. He told me that there was no kidding around in his house. Not a lot of laughter. Not a lot of fun. He learned to see the silliness in life and would just roar over the horrible stories and jokes Dick would share and the stores I would tell. He learned to laugh. In his 80s, he learned that laughter was the best medicine.

I will never forget that he told me that he tried to explain to his daughters (who lived with him) what we talked about in that hour before the class but, "How could you ever explain this?" They really didn't understand why he got to class so early.

I will also never forget that recently he smiled at me and said, "My goal everyday is to make someone laugh." This man learned this lovely life lesson late in his 80s.

He was no normal 92-year old. There was nothing wrong with him, except his lungs from smoking during those long hauls. His gait was that of a teenager's. Nothing hurt. He was loose and moved with ease. He believed that the only reason he was still alive was the rehab class that his daughter insisted he attend, kicking and screaming. I feel the same way, but I went happily.

I miss him. It is going to be hard to say goodbye today.

Monday, April 10, 2017

First Day Back

I am dipping my toe back into life today. I'm still not 100% but I am certainly feeling better, just don't want to overdo it. Mom has her annual checkin with the dermatologist to burn off anything suspicious  or bothersome, like moles at her bra line. We will have lots of errands to run and a simple lunch before the afternoon appointment.

It will be an entire day out in the world so I am sure I will feel it tonight. Dinner is already made so I won't have to do anything once I get home. Looking forward to tomorrow, Michael and I will be attending Sherman's graveside services then lunch with the family afterward. That it going to be a very emotional day. I am not going to the Irish Fiddling rehearsal that night. Too much.

We have a tradition of an Easter brunch at a nice restaurant in Palo Alto the past few years but I didn't realize Easter was next Sunday! I will beg for a reservation today but may have to take mom somewhere else this year. Duh!

With the help of a friend, I am still working on the blog about not getting proper treatment and what to do about it. Stay tuned!

Sunday, April 9, 2017

When Treatments DON'T

I am working on a blog for next week as it is taking some thinking and help from a friend. It is about what can we do as a patient when not receiving the proper treatment for our lung disease. When I was misdiagnosed by the local primary doctor for months before I took matters into my own hands and got into my university hospital's clinic, I thought I was in good hands. Nope. It wasn't until seven months later when Dr. K. walked into my appointment and took control of my case that I finally got the proper care.

What happens if no Dr. K. appears? What processes are in place to stall proper treatment? What can you do as a patient to push for the proper care?

It was so difficult when I knew I was not getting what I needed - results of my lung biopsy were not reported to me until two weeks later after many phone requests - but we are not medically trained. We are new to the whole medical world and have not learned the ins and outs of it yet. We are scared of the new diagnosis and in shock. When the shock wears off, we realize that something is not right.

That is what I am working on, thinking about and will pass along soon.

In the meantime, I was with my two favorite children yesterday as I drove Winnie to her Junior Olympics class over the pass after a nice brunch. Both kids have grown a foot since I had seen them last. It is always a joy to spend time with them.

Today, we are going to run over the pass this morning, after watching the F1 race from China, then I am home for the day.

Friday, April 7, 2017

Feeling Better

I think I turned a corner yesterday. Even though I had a rough night, I didn't hit the wall of exhaustion in the morning. While out of the house for the housekeepers, I was in Safeway chatting with one of the checkers who's daughter has lung issues. She asked how I was feeling. It was with relief that my symptoms are not unusual for the nasty virus that she said so many people have and it lasts for a month or longer. Sleep issues. Not able to eat. Cough. Exhaustion. Oddly, it made me feel so much better. There may not be a deeper issue going on with my health. It might just be a run of this stupid bug.

The wall of exhaustion never hit yesterday.

My retired sister phoned and we had a nice chat. She and her husband are going to meet my brother and his wife in Montana in May on their first real road trip. They are very excited. I was able to get a lot of information about the May wedding of my niece Shelley. We must have talked an hour. It has been a long time since we had such a great conversation.

Natalie also contacted me. Ethan, her husband, is in Chicago as his mom is struggling with a very dangerous and tenacious MRSA infection and she needs help tomorrow. Oliver has a swimming lesson in town while Winnie has her Junior Olympics class over the pass around the same time. Usually, one parent covers each child but Ethan is gone. I am going to meet them for brunch then take Winnie over the pass for her class. Natalie will meet her after Oliver's swimming lesson. It will be good to get caught up on their lives. So very busy.

Mom and I will be spending the day together. We have a short list of things we need to do and I am so glad I am feeling better. She has been so worried about me.

Thursday, April 6, 2017

Sleep

It was a rough day yesterday. I woke up and was exhausted all morning but we had plans. I forced myself to get dressed, we did the Safeway run, Michael put the groceries away before we drove over the pass to Trader Joe's. I struggled to stay awake.

After lunch, I no longer felt the overwhelming exhaustion and stayed awake all day. By the evening, I was ready for bed. Suddenly, four hours later, I was totally awake. After being awake for three hours, I moved to the couch and drifted off for two hours. It is going to be a tough day today.

This was after we kicked up my oxygen level to 2.5 liters thinking that I may need it while struggling with this virus. The next step is to ask Dr. K. to order the overnight test provided by my oxygen company to see if I am going under 92% during REM sleep. Sleep Apnea? Maybe.

Our thoughts today are with our friend in Raleigh, NC who is in the middle of tornado warnings all day. Hang on!

Wednesday, April 5, 2017

Kindness of Others

Bored and boring! I did things around the house and did not take a nap. I was testing myself to see if I was improving, I was feeling better but after dinner, I crashed on the couch again. So, maybe I still need a few days to recover from this nasty bug.

I had a surprise phone call from a friend last evening. It was so much fun and I really appreciated her checking in because she was concerned about my health. How sweet was that? Leslie, the Irish Fiddling founder, came by to also check in to see how I was doing and if I needed her to do anything for me. Also, the orchestra conductor sent an email worried about my health. Sometimes, I feel that Michael and I are struggling through the ups and downs of this disease process together. Alone.

Yesterday was a reminder that there is physical and/or emotional support to help us when the going gets tough.

We are food shopping today. I know that sounds simple but it totally wipes me out right now. The shopping itself at three different places, packing it all into the car, driving home, hauling everything into the house then putting it all away. By that time, I am done. Thankfully, Michael takes over the entire process, which really makes a difference. Plus, we usually have a light lunch out together. It makes for a fun day.

Bottom line, I am feeling a bit better each day. I just don't want to do too much and experience a backward slide.

Tuesday, April 4, 2017

Feeling Better

I actually felt a little better yesterday but still passed out on the couch early in the evening. Today, I am staying in all day, making a grocery shopping list for tomorrow and cleaning the windows of our 1997 Mercury Tracer. Leslie, of the Irish Fiddling group, is having a windshield replace in her car this afternoon and, if it is not completed by the time she needs to pick up her daughter then bring her to a dentist appointment, she asked to use our car. I just want to take the garden blower to clean the interior then a quick washing of the front windows. Not telling Michael. He wants me to do nothing.

Mom found a beautiful statement necklace for my niece's wedding in May. She loves a small company in the mall and they greeted her like an old friends. We explained to the woman what we were looking for and BOOM, she produced it. Large but not so large that it overwhelmed my tiny mom, it was made of pearls set in gold and sparkles. She fell in love. We held our breath waiting for the price. I was thinking $80ish. Mom was thinking $60ish. Mom hugged her after she said, "$28.00." Wow.

We had lunch at Nordstrom to celebrate her good luck then I headed home. It was enough. I was done.

Monday, April 3, 2017

Exhaustion



It is the instant exhaustion that still worries me. I suddenly feel my eyes growing heavy and I need to sleep. Now. Other than that, I feel better. Early yesterday morning, we went to breakfast at our little airport as it is renown for its breakfast menu. I had their lite breakfast sandwich (only ate 1/2 of the bread) while Michael had fresh salmon on a plate of scrambled eggs, sliced potatoes, tomatoes, English muffin and yes, a blueberry pancake. At least he asked for sugar-free syrup. With a twinkle in his eyes, he asked if he could drive me over the pass to see William's 1966 Mustang he had painted on Thursday.

It was still early so, after breakfast, we headed north, through the tunnel, past the restaurant right on the ocean, over the mountain to a shop where he had painted it. It looked fantastic. Finally. They built it from the frame up. We then saw another friend and followed him to his shop for a nice chat. Instead of the going home over the usual pass, we took the same route back home from the North. Traffic was not too bad and we were home by 10:15! What a morning!

Michael did some work in the gardens and we watched the SF Giants opening day game. They lost. I did take a short nap after lunch and we had a very simple salad for dinner. Around 8PM, I feel asleep on the couch and really only remember struggling to get into my pjs and bed around 9PM. Michael had everything ready and even had the oxygen set up. I was out like a light.

Today, I am going to spend a shorter than usual amount of time with mom. It has been a week and she is going to have so much to tell me. She wants to check out a small store she loves for jewelry to wear to Shelley's wedding then maybe we will have a light lunch at Nordstrom. My goal is to get home, determine my exhaustion level and probably take nap before making dinner.

Sunday, April 2, 2017

Goodbye

The ride up the beautiful coast was fine, going north, and I arrived to Kathy's funeral very early. I was amazed that I had driven past this area and never noticed that there was such a huge complex - a Catholic Church, a funeral parlor, the Rectory, a school and a large circular building that sells flowers. There was a wedding finishing up in front of the church so parking was impossible. I made another circle and found a spot along the entry road then walked up a hill to the church.

I met Kathy's husband near the door of the church and we were able to speak for a few minutes. I learned some things about her passing. If I can give you any advice at all, Dear Reader, it is to once again resist the easy route of a local pulmonologist. I know they are closer to home and a smaller office and easier all around but this advice is especially important if you have a more "rare" Interstitial Lung Disease or a lung issue that is unusual. Please, please ask to be referred to a local university's research hospital. They are at the forefront of the latest trials and treatments of these diseases. They have seen it all before. Kathy's husband was frantically trying to get her into one of our wonderful renown university hospitals a few days before she died. Too late.

Kathy's friends and family came from all over the globe. It was a Catholic Mass and really no eulogy. The priest spoke about their work within their parish but nothing about her life. The hearse was ready, we were all now gathered out front when the director of the funeral parlor announced that the service was now over. No reception. Rather awkward.

It seemed unfinished somehow. I walked back to the car then had to drive past the hearse to leave. Tears began and I said a very quiet goodbye to Kathy as I slowly passed.

Saturday, April 1, 2017

Kathy's Funeral Today

On the way home from the ER on Thursday, my cell phone announced that Sara, the RN from my rehab class, was on the line. I was so touched that she was calling me personally to make sure I had heard about Sherman's dying on Wednesday night. When she called me earlier in the week to tell me about Kathy dying, she said me she had some bad news and I immediately asked if it was Sherman. Just a couple of days later, it WAS Sherman.

I think she also just wanted to talk. This was her first death from the rehab class of someone she adored and had gotten to know more than the other patients. She told me that after she spoke with his daughter, it took about five minutes for it all to sink in then she burst out into tears. Her co-workers asked if she needed some time and she said yes. It took a bit to gather herself. I had the same exact reaction. We were able to talk about it and she will be at the graveside services.

The funeral for Kathy is this afternoon at a church overlooking the ocean in a town about 20-minutes north of us. The weather is magnificent. Sunny and warm. It is going to be a very emotional day.

I am feeling better and even made fantastic vegetables bites; caramelized red onion, arugula and goat cheese pizza on a low carb La Tortilla tortilla for my lunch; and a dinner of Whopper in a Bowl yesterday. Michael is going to BBQ this afternoon. We bought a gorgeous steak, will sautéed some mushrooms and have some tiny green beans to round out a great dinner. I am trying to eat more as my appetite is coming back.