Living Well with a Bad Diagnosis - Lung Disease

Wednesday, May 31, 2017

No Have-To's Today

Glorious! Nothing is scheduled on my calendar today! We slept in a bit this morning, the sun looks like it might show itself for the first time in many days and I am thinking of the things I want to do today. The housekeepers are due tomorrow while we are at my knee appointment in the city so I need to pick up the house for them. After that, I am going to take myself very carefully out to the gardens to water the pots and fertilize the rhododendrons and camellias. I may pull a weed or two, just don't tell Michael. He doesn't want me to injury myself again while working outside.

There was no knee pain after the rehab class yesterday, so that was the good news of the day. I did go to the Irish Fiddling rehearsal in anticipation of our Friday night gig. There is going to be a bit of drama as the singer is on a Science Week trip with his classroom kids and Leslie is going to be a bit late from a field trip with her daughter. The bottom line is that the beginning of the gig may feature two violinists and me, until the other guitarist and Leslie can slide into their seats.

My focus is on tomorrow. We will leave at 8:45 for a long drive to the far campus of my university hospital. After the appointment, which will include an MRI, we will have a bit of lunch, swing by our local bank to transfer all the accounts to the new trust (we both need to sign the papers) then we have a 3PM appointment with the investment group in town to sign the papers to transfer all our Morgan Stanley investments to them.

By the end of the day, I will feel that we have everything in place for the first time ever. All the medical documents, legal and financial issues I have been dreading and postponing will be addressed and completed. A deep sigh of relief.

Tuesday, May 30, 2017

Hanging with Friends

I have been housebound with this stupid knee injury for so long that I appreciated and totally enjoyed our holiday afternoon dinner with Wayne and Jill. Her parents and son Ian joined us at their table ladened with delicious food: marinated pork loin, homemade potato salad, my cherry tomato salad and strawberries for dessert. It was fun to listen to the banter and interesting conversation around the table. I realized I had been away from the mainstream of life for sometime and missed it!

As with hearing a weird sound coming from your car but it stops and can't be recreated once you get to the mechanics, my knee is suddenly better in anticipation of my appointment on Thursday! It is less swollen and there seems to be less fluid. By the time I arrive to the appointment, it will probably look normal!

This morning, the first order of business is to place all of our bank accounts into our new family trust. After one of the best nights of sleep in a long time, I am ready to deal with it and to workout at the rehab class.

Tonight, my Irish Fiddling group has a rehearsal and our next gig is Friday night at the local organic market. Our singer is going to be out of town so it is going to be purely instrumental fiddle music. And, me on bass!

Monday, May 29, 2017

Time to Remember

Happy Memorial Day! It is a day to remember the sacrifices of many of our relatives and countrymen and women. Every family has been touched by war, with either the returning home of their dear ones or not. In our family, my dad and uncle returned home, though my Uncle Bill was injured and suffered with Post Traumatic Stress later in his life. My dad was just angry that four years at the peak of his life was served in Europe. He was lucky that he never fired a shot. With such a tender soul, it would have haunted him for life.

But, it was my Uncle Jerome, mom's older brother, who was a navigator in a Flying Fortress that was shot down after a bombing run on Bremen, Germany that affected the family the most. He was filling in for an ill navigator, they had engine problems past the point of no return, so they were sitting ducks. Flack got them. Theirs was the only plane that went down in that area for the entire war. I know because my family had a congressional delegation to look for him after the war. I have the papers. I have the German papers about picking up the plane that landed on a farm. We think that the bodies were striped and buried to cover up the theft as no mention of bodies are in the reports. Four men survived the crashed, two landed in camps while the other two made their way back to their base outside of Cambridge, England.

Jerome's remains have never been found, even after our pleas for help to the people in the area.

After receiving the telegram that her son was missing, my grandmother never was the same again. My mom was 13-years old and lost both her mother and her brother that day. She and her father were very close for the rest of his life.

My grandmother died at the age of 57. My grandfather died at the age of 94.

With all the picnics and all the family fun today, ask your oldest relatives about the people in your family who fought and either came home or not. Or, share their stories with the next generation. Today is the day to remember them.

Sunday, May 28, 2017

Questions and Traditions

During my niece's wedding last week, Michael was able to speak privately with my sister. Along with mom, we have been talking about changing our holiday traditions as it is becoming just too much for mom and me. We daydreamed about Thanksgiving take-out dinner from my organic market and enjoying Christmas lunch in a beautiful hotel dining room. No work. No two-hour each way traffic on snarled freeways. No hosting the event with days of preparation.

Earlier in the year, I had approached my niece to talk about this change of tradition. She totally understood and I asked if she could somehow mention how difficult it has become, especially for mom but for me, too. When Michael spoke to Lee last week, he talked about the traffic and the stress of the holidays and that now that Shelley was married, it was time for them to begin their new traditions. Lee replied that Shelley had mentioned this as well. Thank you, Shelley.

Michael offered that it might be nicer to spend non-holiday time together, to meet halfway when the freeways are not filled to the brim for a nice lunch some weekday during the spring or fall. I think the way he presented it, she understood. I hope. I feel a huge weight has been lifted from my shoulders.

In other news, I spoke with RN Christina at my rehab class on Thursday and told her the story about meeting the woman listed for lung transplants during my testing for the Lung Transplant Clinic a couple of weeks ago. It made no sense to me that her PFT numbers were so much better than mine - ever - and that she was already on the waiting list for her new lungs. How was that possible?

Christina told me that qualifying for lung transplants are not totally about hitting certain PFT numbers (which I did think) but it is also the level of the person's activities of daily living. Are they functioning? Can they take a shower? Can they pay their bills? Can they food shop? No matter the numbers, if the person is needing 10 liters of oxygen to sit on a couch, that is not living.

So, why were our numbers and activities of daily living so different? Christina grinned and said that it was my years of exercise. I have the muscles to sustain my activities of daily living. She then mentioned that even with the recent wicked knee injury, I was still at the rehab class and working out. That was what made the difference between the other woman and me.

That made sense. It also made sense when I think back to when the clinic's doctor said that I had been living with the horrible PFT numbers for years and asked what it would take for me to pull the trigger for transplants. I thought my numbers were still too high.

What I now realize is that when it really is the time, I will know it. It will be when I cannot function how I want to function. When it is so bad that I would be willing to take the chance of dying on the table than to live anymore at that level.

Somehow, the conversation with Christina settled it all in my mind and body. Pulmonary rehab is so much more than just exercising!

Friday, May 26, 2017


The good news: My prednisone-caused glaucoma has responded well to the laser surgery and three different eye drops everyday for pressure readings of 14 and 16. That is very low for me and it made my cool eye doctor very happy. We were able to talk music for a bit, too!

The bad news: I pushed my knee too hard on the bike during rehab yesterday. I hobbled out of there, drove home then tripped on the one stair from the garage to the house and twisted it again. After icing it down, it was better but I was definitely in pain.

This morning, mom wanted to do some shopping but I don't think I can walk for any distance today. There is a bag of ice on my knee right now so, after an Aleve, I hope the pain decreases.

Saturday afternoon, I am looking forward to a visit from a college bound local kid. He is a friend's son of my friend who plays viola in our little orchestra. This young man is also a musician and is going to college to learn Sound/Production. He wanted to talk with William but he is on the road. I told him I can offer information that he might find helpful plus I would be happy to show him William's first gold record hanging in our hallways along with framed interviews and VIP passes from all the shows we attended.

Several of our relatives and friend's sons have asked my advice on how to get into the music sound industry. My first question was to ask what instrument they played. William told me that all good sound engineers are frustrated musicians. Good ear training. Sadly, most "like to listen music" and want the "fun" of hanging out. When I explained what the actual work was all about, they usually decided it was not for them. This young man I am meeting with tomorrow has a really good shot at a successful career as he will have the education and contacts through former students from his college who currently work in the industry. A foot in the door. I really want to give him a feel for what to expect as a working sound engineer, either in a live concert setting or production work in a studio. The former teacher in me is itching to come out. I hope what I offer to him is helpful.

Thursday, May 25, 2017

Trust. Done.

I felt off balance, mentally, all day yesterday. Maybe there was too much on my mind. We began the day in a lawyer's office signing all the papers for the trust, wills, medical health care directive and medical power of attorney. It took some time. Since the holiday weekend is quickly approaching, I wanted to get groceries in the house. Butcher, Trader Joe's, Safeway, Organic Market. Even with the bum knee, I was able to haul everything into the house all by myself for the first time in a while.

After signing all the trust papers, I have to transfer all my investments into the company in town who has done so well with my mom's investments. The new account will be set up as part of the new trust. Also, the paperwork at the bank on all of our checking and saving accounts need to be updated to be included in the trust.

I have been wanting to get this paperwork done and everything formally in place for years. It was such a shock to find out how simple it was and am kicking myself for not doing it sooner. Walking out of the lawyer's office, I felt a great weight lifted from my shoulders.

My knee. I phoned my university hospital orthopedic clinic with fingers crossed. I knew that I needed a referral to make an appointment but we know that my primary doctor refused to give me a referral, as she said I can do it myself.

I spoke with the most delightful human. I explained my situation. There was a pause. Name? Insurance? Yes, I see you were here. I see the X-rays taken in the ED. Then the magical words, "I have an opening next Wednesday." BINGO! She understood the problem, felt badly for me, saw that I had been seen for my knee at their ED, saw that I had been seen in their clinic before and I had all the proper insurance. She took pity on me! I thanked her profusely. I will be in good hands.

My friend Christien is coming for a visit in a couple of weeks. She moved from California to No. Carolina several years ago and we have visited her home three times. She will be flying through SFO on her way home after her niece's graduation in Washington State. It will be fun for her to drive by her former house, the school where we met and to enjoy the cool coastside weather. She was under tornado watch yesterday.

This morning, I am seeing my uber cool jazz pianist glaucoma doctor to check my pressures before I head to the rehab class. My knee felt so much better after the workout on Tuesday so I hope that trend continues today.

Wednesday, May 24, 2017

Tipping Point

I hit the tipping point yesterday.

The appointment with my primary doctor in town to drain my knee and to have her write a referral to  the orthopedic clinic of my university hospital was to begin at 9:25AM. Great. I was out of the house by 8:30, shopped at CVS to buy Betty a birthday card and a Barnes and Noble gift card along with a few other items for us before going to the UPS store to mail it and other items. That allowed me time to get to the bank right when they opened so I was able to pay my credit card bill.

Perfect. On time.

I was back in the car getting ready to head into town for the appointment when my cell phone rang. It was the doctor's office. The woman told me that the doctor did not have time to drain my knee and that I could self refer to my university hospital. I was stunned. I replied that my university hospital required a referral since I had not been seen there for a couple of years and this was an entirely different issue.

After getting home from the rehab class later in the afternoon, I found the office had left a message saying that the doctor would not be writing a referral because I can do it myself.

In other words, my primary doctor refused to drain my knee and refused to write a referral.


The two doctors have not been happy all along to be in a secondary position since I see doctors at my university hospital for everything but the minor stuff. They didn't like this.

I got their message.

I will be choosing a new primary doctor.

Tuesday, May 23, 2017

Pulmonary Fibrosis Foundation

This morning, I have an early morning appointment with the local doctor to take a look at the knee, drain it and write a referral to my university hospital. It should be better yet it is not. Afterward, I will pick up Jeannie and we will head to the pulmonary rehab class. The bike helped my knee feel so good last week that I hope it feels as good today.

Mom and I spent the day together but her eye doctor appointment ran long. While she was in the offices, I was down in the lobby where I met the most engaging 6th grader. We chatted as two equals waiting for our parents. His father showed up, took a seat and joined the conversation! What a lovely family and I was thrilled to hear that the son's visual issues can be greatly improved. What a kid.

Through all of the drama with my knee, my breathing has been exceptionally good, even though I have a slight cough. Acid reflux is still present and I will be addressing that issue with Dr. K. within a couple weeks.

Because I made a donation, I receive a Breathe magazine from the Pulmonary Fibrosis Foundation several times a year. Through the magazine, I am able to read about the research they have funded and stories about their fundraising for that research. It is an amazing organization and I personally know several of the doctors on their board and other positions. They have an upcoming seminar in Nashville this November. Details are on the site. If you have pulmonary fibrosis, please check out their site at:

Monday, May 22, 2017


Recovering from the wedding, I hope to have a quiet-ish day today. Mom is having her monthly shot in her eye and I need to pay my AT&T bill! The problem is that my knee and side near my kidney is so sore I can barely walk. It is time to go back to the doctor to get a referral to the big doctors at my university hospital. My knee should not be this painful after almost a month. I can take a lot of pain but I have had enough.

I so miss working in my gardens. I so miss running into town to grab something. I so miss walking down the hallway without being aware of pain. I so miss working out everyday.

We are updating our wills, power of attorney and  health care directive along with putting everything into a trust. It is all ready for our signature this week. One big goal will be completed.

We have completed the paperwork and confirmed a meeting with an advisor to lay out the options for Michael as he joins Medicare in a couple of months. He is so healthy, he has options I just didn't have when I joined Medicare in 2007. We have lots of questions.

We have also completed the paperwork to be official volunteers at my university hospital. We will wear the badges whenever we are on campus and it will make it easier for us to quickly get through many of the security areas on some of the campuses. We are volunteers as member of the Ambulatory Patient Advisory Board.

I clearly go a lot of paperwork done yesterday!

Sunday, May 21, 2017

The Wedding

It was a very touching, lovely wedding. Both the bride and the groom had been married before with all the pomp and circumstances of first weddings. After lots of painful lessons, they found each other and knew that the other was their mate for life. It showed in everything they said and did yesterday. It was about being married and moving forward with their lives. It was not about a big, fancy wedding. It was simple wedding, no bridesmaids or groomsmen, the farm theme included wild flowers and they were a very relaxed bride and groom.

The rental of the car and the three-hour drive to the ceremony in beautiful gardens was uneventful. Thankfully! For some reason, my knee was very painful all day and I could barely walk. We watched as the temperature reached levels unseen on the coastside - 86, 90, 93, 96 degrees. It was hot but I didn't need the supplemental oxygen I brought along. 

There was a rare sighting of my mom in a skirt! She looked cool and fantastic! My dress worked out just fine and I didn't need the little sweater over it at anytime time through the evening! Here is a headless photo of me in my dress! Note the lovely black knee brace!

We all awaited the bride's entrance under a gazebo with lots of fans and blinking romantic lights. The DJ was playing music that my mom loved, mostly Big Band music featuring all the greats. Then suddenly the groom arrived.

 Shelley asked her parent's to walk her down the aisle in her gorgeous lace gown with a long train. Mom and Russ' dad signed all the documents as witnesses. Mom was very touched to be asked to do this task.

 During the ceremony, the officiant read about how Shelley and my mom had a heart to heart conversation about love after her divorce. "Don't you want a marriage like I had with Richard?" Shelley's reply was that their type of close, everlasting love no longer existed out in the world. And, as the officiant read, she wanted to tell my mom that she was wrong. It still does exist and she had found it with Russ.

Mom was crying. She loved that Shelley and Russ brought her beloved Richard into their ceremony. I even got teary!

After a few more words and a kiss to seal the deal, they were married!

Saturday, May 20, 2017

Wedding Day

My knee is very sore this morning and the pain has returned to my right side. This was not how I wanted to feel going to the wedding this morning. Nuts. But, that is how it is so I am going to make light of it and not whine about it.

Before we leave, I will ice it down once more, take an Aleve and wear the compression hose along with the knee brace for the 3-hour drive. Everything is ready. The new portable oxygen system is all charged up as are the three additional batteries. I remembered to pack the iPhone cord for the car, all my medications, makeup for touch ups, contact lenses and takes more and more stuff the older I get!

We need to be out the door at 9AM to pickup the rental car then a short drive to pick up my mom. The wedding begins at 4PM but the road up to that area is usually treacherous and can take additional hours so we had to build that into the drive time. It's going to be a very long day.

I promise to post some photos.

Friday, May 19, 2017

Wedding Preparations

What a day! We didn't get home until 7:30 but felt both fulfilled and satisfied. The meeting of the Ambulatory Patient Advisory Board was so much fun. We had two special presenters and our opinions were prodded out of all of us. I can't say what the debate was about but we all were supportive of the project that is in the infant stage but has great potential and would be a great help to the patients, especially those who live a distance from the clinics. Lots of laughing. Lots of back and forth. Lots of opinions and ideas. Very fulfilling

Before the meeting, Michael took the baby present up to Andrea in the PFT waiting room as my knee was not up to the long walk. She was absolutely delighted with the larger John Deere Cowboy Booties with a cute matching outfit. The entire office watched and laughed and applauded when she showed each piece from the wrapped box. I am so happy that she loved them.

We went by our favorite little place just north of us on the way home after the meeting. They are a delicious little place with a small menu but very thoughtfully prepared and presented food. They use all organic veggies and local small farms provide the meat/chicken. Michael had a malted chocolate to cool down his jalapeƱo topped pulled pork sandwich, which we split. Very satisfying.

Today is preparation day! I will be pulling everything together for our long trip to the wedding tomorrow. Shelley and Russ. It should be so much fun. My knee is not doing great so I promised Michael that I would find a spot and sit most of the day. He is worried that I am a bit unstable and might trip and fall in unfamiliar surroundings!

I have a long list of what needs to be done today. Let the fun begin!

Thursday, May 18, 2017

Acid Reflux

Yesterday, my hip muscle was really sore in the morning. I remembered the old tennis ball trick, dug it out of a basket, sat on it and rolled it around the area of the pain then the magic happened. After doing it for about an hour, the pain was gone. Gone. Did-not-return gone.

I had my hair cut and colored, eye brows waxed, filled the car with gas and enjoyed a texted conversation my niece. She asked me to tell my mom that they wish that she will be the witness to sign their marriage license. I phoned mom and she was so touched! We also made the reservation to rent a larger car for a nicer 3-hour one way trip to the wedding.

Michael and I have a meeting of the Ambulatory Patient Advisory Board at my university hospital later this afternoon. We love these meetings as we have seen our ideas come to fruition. So very satisfying. But this morning, I will be out of the house and running errands while the housekeepers are here.

Just a moment to blog about acid reflux. People with interstitial lung disease have acid reflux. It is unclear whether the ILD causes the acid reflux or the acid reflux causes the ILD. The jury is still out. I have found in personal conversations a correlation between people who have lived a long time with their ILD and an early diagnosis of acid reflux in their journey. The earlier acid reflux is addressed, it seems the longer they survive. The basic problem with acid reflux is that the fumes, microaspirations and full on "stuff" can flow into the lungs causing a flare. We don't want a flare, do we? If you have not been checked for acid reflux, please have it checked out, even if you don't think you have it. I had no symptoms yet mine was so bad that it required surgery.

Wednesday, May 17, 2017

Packed Day

So much happened yesterday!

Mammogram: Jeannie and I resumed our car pool to the rehab class. It felt like the band was back together, to quote the Blues Brothers. We arrived early enough to check into the Women's clinic for our mammogram appointments. A team. Together. She usually has so much pain and was very nervous about it but had a fantastic technician who made it painfree. She was thrill to have it over! I, on the other hand, had a lovely woman, we made it through with no problems then we began a chat. The poor woman opened up about her struggle with an autoimmune disease, the retirement of her doctor of many years and the difficulty she was having finding another doctor who didn't tell her she that it was all in her head. I had the same experience before I was diagnosed with Hashimoto's disease, an autoimmune disease of the thyroid. I then told her about the latest trend in health management - do as little as possible. She absolutely agreed that she was dealing with that attitude as well. She got teary. We hugged.

Pulmonary Rehab: My friend Gateson arrived to the class, approached me and said, "I am going to present a plan to our hospital for them to sponsor a bowling league and you should be the coach." It went downhill from there and I was laughing so hard, I started to cough! I missed everyone. My knee was not able to handle the treadmill but it felt like it was being oiled when I worked out on the bike. Fantastic. So, I had a pretty good workout.

Home: Michael was home when I arrived after dropping Jeannie off. While checking my emails, I must have been sitting funny because I went to stand up and the muscles around the right side of my hip HURT. I could hardly walk. It is worse this morning. I so wanted not to limp at the wedding this weekend. More Aleve this morning may tap it down but I am really concerned about getting around.

Irish Fiddling: The band was really back together after more than a month! We played at a local award winning brewery while I was able to glance clear across the room to see the Warriors beat the Spurs then the Giants lead the Dodgers. We sounded great, there was quite a crowd for a Tuesday night and Michael stayed the entire time. His best friend Wayne and his son Ian met him there to watch our group for the first time. They had no idea how good and tight the group really is. Entertaining. Not just presenting song after song. We even had a woman get up and dance an amazing Irish jig! It was so much fun and my new string bass stool was wonderful. I wasn't exhausted after almost 2.5 hours of playing.

Acid Reflux: But, around 2AM, I started to cough and I felt a bit of acid reflux so I headed to the living room. I just read that the over-the-counter acid reducer I am currently taking can cause kidney failure. Yikes! I am going to just take it as long as the label suggests then I will have my appointment with Dr. K. to talk about my options.

Today? Not much on the schedule except my hair appointment, I need some gas in my car and my eyebrows need waxing. Tomorrow is going to be crazy.

Tuesday, May 16, 2017

Jig Gig

I am ramping up to my niece's wedding on Saturday. It is going to be in the 90s in the Sierra foothills so I will need to bring oxygen with me. But, I need to get through tonight first! The Irish Fiddling gig at the brewery will be fun and the first time I will play with them in weeks! I missed four gigs because of my knee.

My mammogram appointment this morning is before the rehab class but I don't expect to do much in the class. My knee is still sore, I am limping but it is so much better and seems to improve each day. The goal is no limping at the wedding!

I am a bit worried about getting sick. Too many late nights and not enough recovery time. The over-the-counter drug for acid reflux seems to be working. I am worried that mom might have exposed me to a cold but I have been on Coldcalm all day yesterday and will continue with it today. That usually takes care of it. Knock wood!

Being proactive, I got home from mom's yesterday and made an amazing Frittata Lorraine for our breakfasts this week and an Eggplant Casserole dinner. Both passed the Michael test. It alway feels great to have the food ready and waiting in the refrigerator.

Busy day ahead. I should sleep well tonight!

Monday, May 15, 2017

Lovely Mother's Day

Mom looked fantastic yesterday. I just can't believe she is going to be 89-years old in August. She was wearing a burnt orange gypsy kind of top over her new slim leg dress black slacks. Young, current and elegant all at one time. We had a lovely lunch overlooking the San Francisco Bay with the airport runways in the distance. We watched plane after plane land while other waiting to take off. Such a beautiful day.

I limped while we food shopped before heading home. Mom phoned later to give me the bad news: she thinks she was getting a cold. YIKES! I took my Aprodine last night and will begin Coldcalm today. We have a phone meeting with her investment people at 9:30 this morning so I will wear my oxygen and a mask when I am with her today.

My William phoned while we were parking at Trader Joe's so we both were able to enjoy a nice chat with him. He loves the new group and they begin their European tour next week.

When Michael and I got home, we fertilized the rhododendrons, camellias and azaleas and watered everything, including the pots. It was my first time in the gardens in a long time and my plants were calling to me. Hopefully, within two weeks I can start to work with them again. So much trimming is needed! Haircuts for plants!

It is back in the saddle for me tomorrow. I am returning to the pulmonary rehab class and will have a mammogram beforehand.  That evening, the Irish Fiddling group will be playing at the local brewery. On a Tuesday night, it will not be as wild or loud as our Friday night gigs so I will really enjoy the venue.

It's Monday. Here we go! Enjoy the week.

Sunday, May 14, 2017

Mother's Day

Happy Mother's Day! I am so blessed to still have my mom to share this part of both of our lives. We will meet this morning, enjoy of nice lunch together then Michael and I will finish our day shopping. William is in rehearsals in Nashville in preparation for his tour with a new group but I am sure I will hear from him sometime today.

The all Mozart orchestra concert went really well last night. I must say that the bass section was outstanding and really nailed it. Two strong Scorpio women. It is rare to find women playing our instrument but to have two playing in the same orchestra was very rare. We talked and laughed a lot before, after and during intermission. I even barely survived the 4th movement of the Symphony!

My knee is very sore this morning and I am struggling with acid reflux for the first time since the Nissen Fundoplication surgery many years ago. I woke up coughing and know that some got into my lungs last night. I will be emailing Dr. K. today and expect to have to experience the horrible tests of the sensors up my nose and into my stomach to measure acid levels through the night. So uncomfortable. That, too, might explain my horrible PFT numbers.

But for today, I am going to enjoy being with my mom and my husband, hearing from my son and appreciating being out into the world.

Saturday, May 13, 2017

Two Women Connecting Over Our ILDs

While I was waiting to being walked back to the pulmonary testing lab Thursday, a mother and her daughter also checked in. We began to chat. They had driven three hours for their appointment and were going to be on the campus until mid-afternoon so they faced horrible traffic returning home. Mom was on supplemental oxygen. The daughter was lovely and dealt with the office staff while mom and I chatted. I thought she spoke English really well but she apologized for it. When the daughter joined us, she would speak in Spanish to her then her daughter would translate. Mom had questions so we really had a nice chat and enjoyed each other's company.

After the PFT testing, I continued to the CT Scan offices and bumped into them arriving when I was leaving. We all greeted each other again. Up in the Lung Transplant Clinic, I checked in but had to wait a bit. A nice gentleman began a conversation with me and I learned that he was 58 days post transplant. He only spent 10 days in the hospital and the only complaint was some nerve pain at the surgery site. Not too bad at all. He took off after dealing with his business and suddenly, there were the mom and daughter checking in. We waved at each other then they joined me.

At that point I learned that the mom has been on the waiting list for transplants since October and was currently listed in the low 30s (I don't want to share the exact number). She told me that one of the reasons that it has been a problem matching her with a donor was that she had a blood transfusion years ago. Yikes! I had one, too, when William was born. Again, it has to do with the antibodies. Later, I began to wonder if she also had a rare blood type.

Mom asked me why I was not on oxygen. I explained that I had done so much exercise that my muscles were able to support my lower saturation levels. She was amazed.

Then it happened.

I told her that I had an ILD and showed her my PFT report. Again, it was horrible. She pulled hers out of her purse and gave it to me. She also had an ILD and I can't remember the exact numbers but I was shocked. Here was a woman listed for transplants and I would kill for her numbers. Lung capacity was in the 60s and her DLCO was like 40 something. A reminder: my numbers were 43 and 10.46.

She looked at me in shock. She got it. I looked at her and shrugged my shoulders. I really didn't and still don't understand. Maybe she has been dealing with being really ill for a long time and was more housebound. Maybe her quality of life was so impacted that they approved her for transplants. Who knows? I am still rather shocked at her numbers but I also remember what the doctor asked me, "What would it take for you to go forward with transplants?" Thinking of all that I have been through, especially the past two years, I think I have maybe a higher level of what I am willing to adjust to before taking such a drastic step.

Gives me food for thought.

Friday, May 12, 2017

Pre-Testing for Lung Transplants

I had to be out of the house by 6:30AM yesterday so I missed writing the blog. The Lung Transplant Clinic had set up an 8:30AM appointment with the pulmonary function lab followed by a CT Scan then a meeting with a doctor I had not yet met who is part of the transplant team. A long day. A long day with a lot of walking, or limping, on my not-so-good knee.

It was an easy drive into the city that early and I found a close parking spot, though still a long walk through the garage to the elevators, a stroll across the street then into the hospital and up 13 floors. I am on Facebook with Andrea at the front desk, it was the first time I had seen her since having a baby so I brought along a little something. Baby cowboy boots and a little outfit. She loved it!

I met with a new tech who treated me like it was my first rodeo. Kind of irritating. I kept asking what my specific numbers were compared to six months ago. She replied that they were about the same but she wouldn't give me the numbers. I know my numbers and I track them! Irritating.

After having my blood taken for hemoglobin levels for adjustment to the DCLO, I got the report to take to the doctor in the Lung Transplant Clinic. I waited to review the numbers until I got to the CT Scan offices. (It was hard to find, I get lost every time so I walked so far that I began to worry about my knee.) I flipped out when I read the PFT numbers. Six months ago my Spirometry was 49% and it was 43%. That was a huge slide. My Diffusion rate was 12 and now it was 10.46. I have not had numbers that low since 2004.

After the CT Scan, I headed to the doctor's appointment in the clinic. Dr. S. was marvelous, I had seen him at the luncheons but we had never met before. He listened to my lungs then I shared my concern about the PFT numbers. We talked about the recent eight-weeks of the virus followed by the past two weeks of no exercise due to my knee. We talked about having a new tech give me the PFT, which can really make a difference. He then pulled up the recent CT Scan along side the Scan of 6-months ago and said he saw no changes that would prove the dramatic drop. He thinks the low PFT numbers were an anomaly.

The plan moving forward: I am going to have another set of PFTs in three months. If I feel worse or more short of breath sooner than that next appointment, I am to arrange a PFT through Dr. K.

One question he asked, which you might want to ask yourself was, "What would make you decide to go ahead with a transplant? How ill would you have to be?" My answer? If I had to rely on someone to get through the day. If I could not function out in the world. If I was housebound. If I couldn't do what I needed or wanted to do. I have a quality of life issue. If it was horrible, I would rather take the chance of dying on the table during a transplant than living on a couch on 10 liters of oxygen. We may see my actual tipping point, when that time comes.

Wednesday, May 10, 2017

Fluid Gone

Here is a confession: I don't like my primary doctor. So why do I stick with her? I live in a little isolated town and the nearest town is over a pass. There is not a lot of choice. If I need to see a doctor for a cut or infection or a UTI, I can get a same day appointment and it is done. For anything else, I see the specialists at my university hospital. I guess convenience would be the simple answer.

I saw her yesterday morning to have the fluid drain from my knee. Last time I saw her, she didn't remove the fluid from my knee from the first injury in January because she said that any poke of a needle could cause an infection and the fluid would eventually be absorbed into my body. Well, at my university hospital's urgent care after the second injury last month, the doctor drained 12ccs of bloody fluid from it. When I told her my bowling injury story and showed her my huge knee that I was asking to have drained, she went through the same routine about a possible infection due to any needle introduced to the knee. It then occurred to me:


There is was. What my friend and I realized was the newest treatment plans for patients and I fell for it the first time around. I was not going to fall for it again. Making a very clear statement about how the knee gets hot even with constant icing and elevation and how there was much more fluid in it than the first time, she brusquely gathered her needed tools and tried to numb my knee. She was frustrated that it took two shots to make it numb before she began to remove the fluid.

She was shocked that it was so bloody, she removed a full 12ccs vial and had to remove an additional 4ccs. I think she felt a bit guilty about trying to talk me out of having it removed once she saw its color and amount. She calmed down a bit. Slowed down. Kinder.

It feels so much better. I can walk with just a bit of a limp. The only problem now is that I am still so sore near my kidneys and around the side of my body from putting my weight on the cane last week. I must have strained the muscles and they are still sore, especially when I cough!

Tuesday, May 9, 2017

Fun Day

Mom, Michael and I had so much fun on our adventure to visit both dad and an Indian casino yesterday. The drive was three hours each way but I had my compression hose on my legs and kept my left leg up on the back seat. The traffic was delightful, no problems the entire day. We first went to visit dad where we found someone had stolen his flowers again. Mom always has nice silk flowers for his crypt, which she replaces twice a year. Almost every time we visit, the flowers are gone. It makes her so mad. She and Michael took a long walk to clean her brother's plaque so she felt her work was completed.

I have been so housebound that just being out in the car was exciting. The drive from the cemetery to the casino was about an hour of beautiful scenery and tiny towns in the Sierra foothills. We even drove through the very historic Sutter's Mill in Gold Country. The casino was empty, we played but didn't win much. After lunch, our luck improved and we left just a bit of money there.

My knee held out all day and, in fact, the pain lessened the more I walked. This morning, there is a lot of fluid covering the entire knee but I have a 10:00 appointment to have it drained. It is amazing how it improves day to day. Very heartening.

Monday, May 8, 2017

Casino Day

In minutes, we are off for our adventure today. Mom is waiting and I will bet that she was too excited to sleep much last night. She LOVES to go to casinos and today is going to be a rare event.

I will be a vision of loveliness because I am bringing the walker and my Helios oxygen backpack, gloves and a mask to play in the casino. But first, I am in full rush mode to get dressed and fed this morning.

My knee is still so very sore, I have an appointment on Tuesday morning to have the fluid drained and the muscle pain in the side of my back is still there but is better this morning. My new professional string bass adjustable and foldable stool arrived yesterday and is going to work just fine. I will be using it during the Wednesday orchestra dress rehearsal and for all future Irish Fiddling gigs. It was expensive but will allow me to continue to play as my oxygen needs increase.

Wish us luck! We are always happy to come home with close to the same amount of money we bring to a casino. After hours of fun, we consider that a win!

Sunday, May 7, 2017


The goal this weekend was to stay off of the cane and walker, to keep my knee iced and elevated and prepare for our long car trip to visit dad and a casino with mom tomorrow. It has been deadly dull. The good news is that I am more stable and confident on my feet, less pain from the muscles in my back due to putting my weight on the cane, I was able to go into the garage to do a load of wash and took the two stairs there slowly but painfree.

Today, I want to iron some clothes and take a shower. Period.

We leave before dawn tomorrow on an adventure. I am so grateful that I am well enough and physically able to enjoy the day with mom and Michael.

I walk away from this whole experience with get empathy for people who live with constant pain, those who need a walker or cane to stay mobile and a huge appreciation for our caretakers.

Friday, May 5, 2017

Gambling Mom

With the help of a cane, we made it through all of our shopping but my muscles near my kidney on my right side are very sore. I am using the cane in my right hand. The good news is that the muscles in my left hip are just fine now that I am using a cane instead of swinging my left leg out to keep balanced. Somehow, I can't win!

It felt great to be able to get around and to be out into the world.

Mom is having problems with her Comcast email account so I need to somehow get up to her apartment this morning. There is an elevator but then it is a long walk. Later, we will probably just go to lunch and not do a lot of walking.

I need to continue to improve. The orchestra concert is coming up, Shelley and Russ are getting married in two weeks, the Irish Fiddling group has several gigs lined up and Mother's Day is around the corner.

Mom loves to go to casinos. She used to go to them on a regular basis before she moved closer to me but there are no casinos near us. We are going to visit my dad on Monday, change his flowers, clean the plaque she had made in memory of her brother then drive into the Sierra foothills to an Indian casino. She is so excited that she is not sleeping! Michael is going with us so he can drive as it is just a bit too much for me.

I so hope my knee is better by Monday and I don't think I will be doing a lot of walking around the casino. We are not big gamblers but we are so happy that we are able to give this gift to mom. She will be in heaven!

Thursday, May 4, 2017


It was classic! I knew Michael was moments away after being gone since Tuesday morning and had no idea I was able to walk without the walker. I was standing in the living room as he came through the front door.

He looked tired as I walked towards him, he leaned down to kiss and hug me before it dawned on him that I was actually walking. "You're walking!" Big smile! Another big hug and kiss. He stood and watch while I demonstrated my rather ugly limp but further proof that I was now able to move around without the walker.

Relief showed all over his face. I think he was worried that it was going to take even longer.

We talked the rest of the evening, he had a great time with Jim, unwrapped his new lake boat and put the decals on to make it legal. They then took it out for a ride of the lake. It was a 40' pontoon boat but Michael referred to it as paradise.

This morning, the housekeepers are due so we are off to the bank, UPS Store, Safeway and Trader Joe's. I am going take a cane with us as I found it stops my limp and it will give some support when I am trying to do so much today.

I even will be trying stairs for the first time since coming home from the fall over a week ago. If I can do the stairs alone, I will have my freedom.

Wednesday, May 3, 2017

Step By Step

I AM WALKING! Well, maybe not walking but more like limping along slowly. But, I am able to move about without the walker. It happened yesterday afternoon when I took just a couple of steps in front of the couch. Then, I walked around the couch. There was no stopping me! It has been marvelous and I will never take walking for granted again!

Since Monday evening, I switched to Aleve and I think that really made a positive difference to the pain level. This morning, it had worn off and I was really sore and stiff. After taking it, I noticed that the pain was at a much lower level.

Michael is due home early this afternoon and I plan to surprise him. He will not believe how well I am doing. The only problem is the knee has a lot of fluid again so I need to make an appointment to have it drained.

We have to pull the house together for the housekeepers tomorrow and not much else, other than to make some dinner and boy, do I need a shower. A quiet day ahead!

Tuesday, May 2, 2017


It felt marvelous to be out in the world yesterday. Mom arrived to her eye doctor appointment on time while I sat on the lower floor, near the bathroom, enjoying an iced tea and magazines. While sitting there, after driving in the car for over an hour, I looked down at my foot and ankle and watched them grow. They became very swollen even after I kept it elevated. By the time I got home, I couldn't see my ankle on the damaged leg. After elevation, ice and compression hose, everything was back to normal this morning.

I was actually able to walk up the two stairs to the front door without pain, though still needing the walker. Hopefully, I can be stable enough to get rid of the walker soon!

Michael is gone. He left this morning about 4AM to drive with Jim up to his beautifully remodeled home on a lake about three hours north. They had to leave that early to avoid traffic through the city. Jim bought a 40' boat and needed Michael to put all the decals on it. Michael is an expert at that. They were also meeting some workmen today and again tomorrow morning so I don't expect him home until Wednesday afternoon.

In preparation of his leaving, I now have everything I need on the table in the living room. He thought of everything. He only phoned me about 100 times yesterday to make sure I was okay so I am expecting endless calls until he gets home. He was worried about leaving but I insisted. I thought he needed the time off from being my caretaker 24/7. I'll be fine and maybe, just maybe, I can surprise him by walking without the walker. A goal. We'll see!

Today? I have a ton of paperwork to work through, reservations to make for Mother's Day, toe nail appointments to book for mom and me, make the food shopping list for the week, the bedroom needs to be picked up and I just want to pick everything up, which is something that I have not been able to do. I might even play a little piano.

Monday, May 1, 2017


A bit nervous about heading into the world for the first time since the bowling injury last Wednesday. Mom needs me. I must go. Michael will be on alert in case I need him. The good news is that when I stepped out of bed this morning, I took four step with the walker's help and felt no pain. It kicked in after that but it is definitely better than yesterday.

Orchestra rehearsal this Wednesday? Probably not. Hopefully, I will be able to play the concert next week. Maybe not. Irish Fiddling gig on Friday not? Nope.

Lots of feelings of guilt for missing all of the above! I like to do what I promise.

I prepared dinner last night, even though it was just a simple shrimp salad with hard-boiled eggs. It was great to work in the kitchen but I needed Michael to carry the food and help put things away. I just want to move my body! Today, I will be moving it!