Living Well with a Bad Diagnosis - Lung Disease

Saturday, July 21, 2018

Few Precious Hours

Yesterday morning was a challenge. Up at 5AM to give me enough time to see the retina doctor at 7:40AM, all was well until we turned on the traffic report. The pass was closed. There was an accident between a large garbage hauling truck and a pickup truck, which also involved tree branches and wires down on the road. I was out the door by 6:15 and headed north for the long way around, worrying about the amount of traffic I was going to deal with due to the pass being closed. Two things were working for me: It was a Friday and it was early.

I was only 20-minutes early for the appointment, checked in with the only other person there then another person arrived. They began to chat. The new arrival asked how the first lady was feeling. Better, she said. Better? Oh no. With that, she mentioned that she was coughing a lot. Coughing? I sat as far away as possible and that was when the coughing began.

Thinking of all the older people who visit retinologist, I watched as she coughed HARD into her hand. It was a very productive cough. Then, she would touch paperwork and hand it back to the patients, who were beginning to arrive.

She should not have been allowed to be at work to spread her germs to every single person.

I finally saw the doctor, my pressures were 15 in each eye and he was happy. It was after he did an exam to my eye that he said the large bleed on my retina had stopped but I now had blood clots in places there were no clots when he saw me last time. He asked if I had high blood pressure. I told him about rehab class on Thursday when it was 80/50 and they wouldn't let me leave until it was higher. But, I wondered it using the Aerobika might be the cause. Using it makes me cough very hard, every morning. He said it might but...

There is a very extensive test that he said would get to the bottom of the problem and we agreed to see each other next Friday for this test.

From there, I went to mom's. We ran some errands and were finished with lunch at Nordstrom's but we were just talking when my phone dinged. It was William. He wanted to meet at a hotel in San Jose (about an hour away) at 3:00PM. It was 12:30, I had to get mom home, call Michael so we could meet at home then drive down. It was going to be tight.

Did I mention that there was a new accident on the pass? By the time I got there, it was on the side of the road and I flew by it. I made it home in record time, changed my clothes and got cleaned up. We were out the door and arrived to his hotel about 30-minutes early!

There was one of our favorite restaurants in the hotel, William had suggested an early dinner there so he arrived at our table right on time. After dinner, we sat in a small, private area and talked about everything. We made our holiday plans, he shared his business plans, we asked if there was time for a visit up to his home in the Fall, we just...talked. He looked fantastic and happy and relaxed. He really has created the life he wanted. We are so very proud of him.

Thursday, July 19, 2018

Gout?

We have made contact with our son and plans have been made to meet for an early dinner Friday in San Jose. He told Michael that he was concerned that the amount of hills and steps at the concert venue would be too much for me, probably true, so no concert for us. As a mom, I want to spend some time looking at him, having conversations to get caught up and just being with him. We also will break it to him that we want to head his way for a visit after summertime.

Michael and I went to the nursery yesterday and bought the new plants for the back yard. I plan to place the pots today so Michael can dig the holes. Photos will come when it is in. 

I heard from the rheumatology clinic yesterday!!! We made an appointment and they have agreed to see me. Finally! The bump on my finger is growing, the joint on my foot is calm at the moment but the red and numbness still remains. It was diagnosed as gout except that my uric acid levels were below normal. I did just read that low thyroid can also cause gout. Who knew? Hopefully, I can get a proper diagnosis and see if there is something that can keep it calmed down.

The rehab class is today after I see my hip glaucoma doctor to check the pressures in my eyes. They are still bothering me with globs and fuzzy eye sight. 

Another busy day ahead.

Wednesday, July 18, 2018

Energized

I felt better yesterday, with more energy, than I have in weeks. Before the rehab class, I did the weekly food shopping at Safeway, bought and mailed a gift card to Starbucks for the new parents and did a CVS run. My numbers in rehab were outstanding. Working out on the bike, my saturation rate was 96% on two liters of oxygen. I am usually around 92%. There was no struggle to complete my routine like it has been for the past several weeks.

After I got home, I watered the back yard, made some deviled eggs for breakfast then roasted chicken and made a Cesar salad for dinner. There was more! I had a rehearsal with the Irish Fiddling group. Leslie told me yesterday that she and her husband have purchased a "retirement home" in Donegal, Ireland and that their youngest daughter, whom I adore, might actually go to high school there. The move will be in the next two years or so. They do plan to keep their house here and maybe rent it out as an Air B&B. Their move would probably mean the end of the group.

Today, Michael and I will be together all day! Nice! We will be visiting the butcher and Trader Joe's before going out to a nice lunch. While watering the gardens yesterday, the solution to a problem hit me. A very simple solution. I am going to run it by my gardener, Michael, and will try to buy the plants sometime this week. It is rather brilliant, I must say. Will post photos if the plan is approved and the plants are planted!

Tuesday, July 17, 2018

Snip

Hailey made it through the laser "snipping" of the connector of her tongue and lip with no problem. Her mother? Not so much. Shelley said she cried the entire time! Now comes the hard part, which is manipulating the tongue and lip to insure it heals instead of growing back. Shelley and Russ have a Starbucks literally three minutes from their house and have needed it a lot this past four weeks. So, I am sending a nice gift card to help get them through the next month. Shelley can only have decaf but it will still taste good! A treat!

I had the pre-colonoscpy appointment yesterday, mom waited in the waiting room then the plan was that were would go to lunch. Oops. There was a problem. There I was, just wearing a paper gown, opened in the front, waiting for the doctor. And waiting. Finally, she arrived and said, "You are a little early." She meant by a few years!!! Apparently, someone sent a postcard with the announcement that it was time for my colonoscopy in error by three years! She apologized. She then talked to the staff. I was rather relieved.

Mom and I celebrated over a small lunch.

Rehearsal tonight with the Irish Fiddling group then two eye doctor appointments later in the week. I will be phoning Jeannie today. It feels so odd to drive over the pass alone to rehab class and I deeply miss her.

Monday, July 16, 2018

Laser on Hailey

Mom was with us most of the day yesterday. Later in the afternoon, we all went to a fun party at the home of the owner of her investment company here on the coast. It was further north, right on the ocean and beautiful. The food from the taco truck was delicious and we met some really nice people. It was a fun afternoon. 

This morning, she is going with me to my appointment before next week's colonoscopy. It will be a short appointment, which will include a review of medications and a test to insure there is no current bleeding. Afterward, we will enjoy a light lunch. I have been eating too much bread recently and beginning to feel it! I will be watching every bite this entire week as we look forward to seeing William on Saturday as his tour rolls through the area.

Today is my niece's birthday but the focus will be on baby Hailey. She is having her "tongue-tied" surgery, which uses a laser for 30-seconds on the connectors of the tongue and the upper lip. I remember mom telling me that my dad's brother, Uncle Bill was tongue tied. No one was able to understand as a child except for my dad, who was only 18-months older. Genetics. So interesting. 

I slept great last night and finally have a bit of energy. 

Sunday, July 15, 2018

Statins and Injections

It was an interesting appointment with Dr. M, my endocrinologist. I was there for my annual appointment to check my Hashimoto thyroid disease, my cholesterol and my bone loss due to prednisone therapy since 2005. He was a dad at the school where I got sick. I knew his wife and two amazing children and, when he heard I was having problems having my thyroid disease treated correctly, he offered his services. I have been his patient since 1995.

In 2004, I phoned asking for his help while I was being misdiagnosed. The local doctor told me I had exercise-induced asthma. Period. Take this inhaler and you will be fine. I got sicker. I went back to the doctor every two weeks, he increased the dosage of the inhaler then added another inhaler then increased the dosage of it, all while I grew weaker and sicker. I had asked to see a pulmonologist. He said it was not necessary. 

We cancelled our summer vacation plans. I was too ill.

Finally, I phone Dr. M. to ask for his help. He asked about my symptoms and other very specific questions then said, "It sounds like you have an interstitial lung disease. I will refer you to the Chest Faculty Clinic." This saved my life. It was there I got the biopsy, which revealed the diagnosis of hypersensitivity pneumonitis. It is where Dr. K. showed up about six months later, having been hired to run the clinic. She alone has kept me going when all others told me to get my personal things in order. 

Dr. M. was lovely, as usual. After reviewing my records and talking about my health during the past year, we made some decisions. The latest data was coming in with people being injected with Prolia for five years suggested dosage. There was a problem. When stopped the injections, there was an increase of large bone fractures. As I had only one injection, he changed my infusion drug to one that has been around. Safer, for now.

Then, I asked about being removed from Lipitor due to memory issues. He told me that his Lipid colleagues feel there is no proof that it causes memory loss but I noticed it the first 6-months of taking the drug years ago. As I am in a brain study for memory loss over time, I know I have been on a decline. Names. Dates. Words. I shared that with Dr. M. who changed my statin to Crestor. We will see if I notice a difference. 

It was an interesting appointment, which ended with him sharing photos of his son, a young artist in New York city. He was all grown up! 

Friday, July 13, 2018

Next Steps

Janet and I talked before the rehab class. I reported that Jeannie was expecting people to arrive any minute and couldn't talk with me yesterday morning. Janet actually had spoken to her the day before and learned her "next steps going forward."

In California, we are one of seven states that have an assisted suicide law in place. It allows doctors to prescribe lethal drugs to patients with six months or less to live. It was reported that in the first year, more than 500 adults in the state took advantage of this program. There is paperwork involved, interviews and approval required from two doctors and hoops to jump through.

Jeannie has begun the process.

She was very vocal of her support of this legislation and felt that we handle end of life issues better for our pets than our loved ones. I was not too surprised that she was seeking this pathway.

Sherman's death taught me a lot. I hated when he gave up. I pleaded with him to keep fighting and to come back to class. I asked to see him. What he taught me in the end was that when he made the final decision that he was done, he was done whether I liked it or not. I had to support his decision.

It's still hard for me to do. Hard to let go. If this is how Jeannie chooses as a way to end her life, I will support her decision and I hope to arrange a goodbye. She has taught me a lot. She really is going to be missed.

Thursday, July 12, 2018

Messages from Abroad

We just heard from British Don, who had been in Istanbul for several days. The overwhelming heat was having a negative affect on his breathing but the city itself was fascinating for this history buff. As a foodie, he said it was good, simple foods then sent this photo of a small (!) piece of baklava with a remark that mine was better! The good news was that he just arrived in Milan, Italy near a lake with cooler temptations and better humidity levels. Just two more days before he heads back home.

William's tour was going through OKC and they had planned to meet but this trip came up and Don decided to travel instead. We are looking forward to spending some time with our son on the 21st as he comes through town.

Michael's mom, Mary was delighted with her package of my homemade baklava, which she requested when we were visiting in May. Her birthday is on the 19th so we sent a gift card and a sweet card. She will like both!

I am definitely feeling better and plan to do some physical work this weekend. It will feel odd to drive to rehab class today without Jeannie, who I will phone later this morning. Before class, I need to do a Safeway and bank run then head to Costco to pick up my contact lenses.

Mom's 90th birthday plans are still moving forward as I need to find some invitations today, make two flyers to be posted for her party at her complex, call the coordinator to change the color of the table cloths and to make the two boards of photos to be displayed. I want everything done way ahead of time as I just don't want to feel stressed out going into her special two days of parties. Her heart doctor was very pleased with her yesterday, all looked good and he won't need to see her again for a year.

I am hoping for the same positive report from my endocrinologist tomorrow! We will see.

Wednesday, July 11, 2018

Rehab

It was sad and lonely in the car as I went alone to rehab class yesterday. Janet, a friend in the class, is also close to Jeannie. She had been in touch with her so we compared notes. She was going to phone Jeannie yesterday and I plan to phone her tomorrow before class then Janet and I will compare notes again before Thursday's rehab class.

I am feeling better and my numbers in rehab were really good. It was not the struggle I expected. To keep it going, I plan to do some more gardening on Saturday as I really think the hours of weeding last weekend kicked off this uptick. I am so sick of not feeling well.

This morning, Mom has an early doctor's appointment with her heart doctor then we plan to have a nice lunch together. We are working on her photo boards for her 90th birthday celebration at her 55+ complex where she has made a millions friends. Copies of the photos were made Monday but she wanted a few more included. We'll deal with that today.

Tuesday, July 10, 2018

Hospice

I had a really sad conversation with Jeannie yesterday morning. She phoned very early to tell me she was not going to make it to our rehab class. I reminded her that it was Monday and we didn't have class until Tuesday. I quickly asked how she was feeling and she replied that she was not well.

She sounded awful.

I then asked when she was seeing her case manager with hospice? Yesterday, she was going to be a meeting with the hospice people and her two sisters to talk about the "next steps moving forward." It didn't sound good.

The last time we carpooled to rehab, we talked about how it might be time for her to have help so she didn't have to prepare her own food and other activities of daily of living. A hospice facility. It was not what she wanted but I think she might be at the point where it would ease some of her stress.

The last time we were waiting for the rehab class to begin, her stress level was through the roof. She sat in the chair, rocking quickly back and forth. Clearly stressed. I spoke directly to her in a quiet, calm voice about a funny story, the rocking slowed then finally stopped.

The last time I saw her, we hugged, I told her I loved her and that I would see her for the next rehab class. She didn't make it to class.

So, I am going to give her a few days to think about the meeting yesterday then I will phone her. This is the hard part of life and being in a pulmonary rehab program. Dear friends leave us.

Monday, July 9, 2018

Problems - Part 2

There is a raincloud over my head. Weird things happening.

We went by AT&T to get our bill straightened out. They said that I owed them last month's bill but I have a receipt that I paid with an electronic check to a person at the store in June. While another fellow tried to figure it all out, he let me take a photo of the company's comments about my account. It said that the electronic check was denied by my bank.

What? That made no sense. So, I phoned my bank when we got home. Guess what? They said that AT&T never submitted the electronic check for payment. There was no record of it. It never happened, according to them. Just strange. Thankfully, I gave them a credit card to pay the balance when we were in the store yesterday.

Checking my email, there was one about my medications that were ready to be ordered. Great. I noticed that one of my medications was for only 30-days not for the usual 90-days. The out-of-pocket costs for 30-days was $12.00 but the cost for the 90-days was zero. What?

So, I phoned. She couldn't understand what happened. I asked that they contact the doctor for a new prescription, which I needed and that would take care of the odd 30-day problem. But, no. They couldn't because it showed that I still had 30-days left on the old prescription.

What? That made no sense. The only other option was to contact my doctor for a new prescription. I went on their website, asked for the prescription renewal but my confidence level is not high. It's not going to be that easy.

Today? Mom, photos and lunch. We are going to search, find and place photos (no glue yet!) on the two boards we are making for her birthday celebration. Once decided, we will take them to a place to have copies made then grab some lunch. I hope it all goes well!

Sunday, July 8, 2018

Problems


I just have not been feeling well. Facing the Irish Fiddling gig on Friday night, I was not at all in the mood. My energy level was down. It had been an exhausting day with mom, her doctor, buying some of her birthday supplies and fighting traffic. The gig went well and after the breakfast on Saturday, I slept another two hours trying to get some energy. It was after the nap that I felt the need to move my body. Maybe I would feel better if I got moving.

Grabbing hand clippers and a three-prong trowel, I attacked the two garden beds in desperate need of weeding and trimming. Over two hours later, I was soaked, exhausted and felt a bit better. In fact, it was the best I have felt in weeks.

I slept well, we are watching the F1 race from England before heading over the pass for groceries. We also have to deal with AT&T. I paid the bill in person on 6.27 and they say I have not paid it. I have the receipt and noticed that it only listed Michael's cell phone number twice on the receipt instead of both of our numbers. We will try to straighten it out.

Our DirecTV receiver blew when the power went out a few days ago. They sent a new one. A couple of years ago, a cable guy left us some new cable to replace the very old cable to the old TV in the family room. It had to be run underneath the house and no human is small enough to crawl down there. It was suggested that when we updated the family room, we could install the new cable. Well, my brilliant Michael used all of his experience and brains to do the job yesterday. It included cutting the old cable and attaching twine to pull it through the length of the house, past all the pipes and into the tiny opening behind the old TV.

But, it was another 90-minutes to get it up running and, thanks to a wonderful tech support person, I could not have done it without her!

Three hours later, all three TVs were working.

Friday, July 6, 2018

Smiles

Rehab class yesterday was the roughest I have experienced in a long time. Worrisome. I barely made it through my routine and the bike almost sent me over the edge. I was soaked with perspiration. Since Jeannie was not with me, I was able to leave earlier than usual as I wait for her to complete her routine.

I also took advantage of no carpooling to drive over the pass before the class. Contact lenses were ordered at Costco and I made an appointment for my mammogram. Baklava. Michael came home with stories of delivering the baklava to three groups of people and that they were blown away by it as it was not the too sweet traditional baklava. Mary's was sent off to Knoxville and should arrive on Monday. I texted her to be on the look out for a UPS package. She was excited and it gave her something to look forward to.

Five years ago, Michael youngest brother died. It has been an especially difficult anniversary for his mother and sisters. A milestone, of sorts. Just last week, Uncle Elwin died at 98-years old. He was married to Mary's sister, Jeannette. Mary was feeling this loss then the news got worse. Yesterday, Debbie (Michael's sister who Mary lives with) loved and deeply respected her boss and they learned that he had passed away unexpectedly on the 4th of July. She was stunned. They sent the entire staff home for the day.

Notice of a little something to arrive on Monday was welcome news and could not have come at a better time. I hope it brings some smiles all around.

Thursday, July 5, 2018

He Asked, How are You?



Yesterday morning, it took under two hours to make and bake two pans of baklava. This morning, we will cut them, package them and two will be sent off with Michael for distribution. The Greek mechanic and the family who owns a deli he visits almost every day will each get a container. The largest will be sent via UPS to Michael's mom and sister. The secret of my baklava is that it is not sticky sweet like the traditional baklava.

While sitting in the garden yesterday, Michael asked me how I thought I was doing health-wise. I replied that I am feeling a major downhill caused by not being able to exercise at the desired levels. He said he has noticed a difference in the past three months. In August, I am scheduled for a CT scan and PFTs so that will reveal if the disease is progressing again. I think I am feeling other issues. Having numb toes, the nob on the joint of my finger, stiffness, maroon toes, freezing toes all point to another autoimmune disease. I really need to see a rheumatologist.

Remember them? I hand delivered my referral to them last October and have heard...nothing. The next time I am at my university hospital, I will swing by, describe the increasing symptoms and once again explain that I want to been seen by them because they will need to report to the Lung Transplant Clinic as my time grows closer.

For today, I am going to check-in with Jeannie this morning, mail the baklava, buy some supplies at Michael's Crafts for mom's birthday celebration and maybe a quick Costco run before the rehab class.

Wednesday, July 4, 2018

The 4th

Happy Independence Day! Celebrating our freedom! Such a great holiday! Parades! Fireworks! Food we normally don't eat! Seeing friends!

In our neighborhood, all the families will be outside having fun with their kids. We'll stroll out to spend some time with them as I love to watch them and hear their giggles. It is a bit foggy this morning and I don't think it is going to lift. The parade begins at noon on Main Street. Kids on decorated bikes, horses, marching bands, fancy cars, local groups all celebrating this special day.

One of the fires in our area is close to my sister's house and they are keeping a close eye on it. Rather scary. We hope it is under control soon.

My goal this morning is to make two large platters of baklava. Michael has promised some to so many people. His mom had a request so she comes first with the largest amount of it to share with the rest of the family in Knoxville. A Greek mechanic and a family who owns a deli are the other two he has promised a few pieces. My mom has requested just one. A large one, but just one.

After that, our day is our own. We will enjoy hot dogs and my favorite Lay's Potato Chips for lunch/dinner, both foods that are usually banned from our house. Michael also has some Blue Bunny Sundaes in the freezer.

A huge thank you to our forefathers for winning our country's independence!

Tuesday, July 3, 2018

Concerned

Jeannie phoned last night. Her new anti-anxiety/depression drug was causing problems. She was unable to eat. She is skinny. She is not just skinny but really skinny with not an ounce of extra pounds on her, though I have offered to give her some of mine! People in the rehab class who kept losing weight from lack of appetite ended up dying because their body just couldn't sustain itself. It is especially an issue with older people.

I am worried. It's the first time since we have been making our way together to the rehab class this past almost 1-1/2 years that I am concerned that she may not recover from this downturn. She is one strong person and we talked about not giving up, both of which gives me hope.

Since she is not going to the rehab class today, I have decided to stay on the coast, buy some groceries to get us through the weekend and try to recover from Sunday's excursion to meet the baby and mom's doctor appointment yesterday.

A day off.

Monday, July 2, 2018

Meeting Hailey


It was a day that reminded me of the cycle of life.

Dawn. Long drive ahead. Lots of coffee. Mom and I had two goals yesterday: to change the flowers at dad's crypt and to meet Hailey.

Mom felt so much better after cleaning dad's area and arranging new flowers in his vase. She chatted with him. From there, Shelley and Russ and the new baby were only about 30-minutes away.

Memories of the first weeks of bringing a baby home came flooding back to me while hanging out with our new baby in the family. Shelley and Russ looked exhausted three-weeks after Hailey was born. We phoned when we hit their town and asked what they wanted: Starbucks and pastries. Yup. Exhaustion mode.

When we first met Hailey, I was surprised how tiny she was. It had been a long time since I had seen a newborn baby. But, the smell. The glorious smell of a baby! It filled my nostrils and I was in heaven! She was one cutie who seemed to have a very strong personality already, which I loved. She made fantastic noises and tried to talk with her great-grandma. My mom was filled with love. It was magical to watch as they bonded.

When they opened our gift and read the note, there were tears all around. Shelley got it.

The bit of scary news was she is going to need a quick laser surgery as she is lip and tongue tied. Having just watched the Little People, Big World episode where their granddaughter had to have the same procedure, I felt I knew a bit about it. Shelley had seen it as well and it made her feel more confident about facing it in the near future.

We stayed just over an hour, a bit longer than planned. They looked like they needed a nap while the baby was snoozing. Russ returns to work today and Shelley is going to miss him. Life has changed and they are handling it well. Those first three months are tough!

Saturday, June 30, 2018

Meeting Baby Hailey Tomorrow



Dear Hailey,

This 1920 Baptismal gown was made by your great-great-grandmother, Marion H. H. (1897-1954) for her first born, Rita M. H. (1920-2007). She grew up, made her living as a writer and played the piano most of her life. Those talents have seeped into the next generations.

What this little gown represents are all the previous generations that brought you to us. You will hear stories about these long ago relatives, fantastic tales as well as some tragedies. But for now, it will be exciting and an honor to watch your life as it unfolds.

Many generations from now, your tales will be shared as part of our family's stories.

Welcome, Hailey!


Love,


Great-grandmother Colette

Great Aunt

Friday, June 29, 2018

Brunch

Rehab class went well as I made sure I was well hydrated. It was a fun class and Jeannie looked and seemed a bit better. It was a quiet evening, which was greatly needed.

Today, I am meeting a former student for brunch in Palo Alto. We last saw each other about two years ago but this time, we will celebrate his PhD in Economics from an Ivy League Super University. He is in town for training before beginning his new job in Atlanta. Ah, Atlanta! What a fun town! We will talk places to go and things to see. His road to this point was long and convoluted and I so admire that he had the strength to persevere.

While I am with him, Michael will be with mom for her once a year heart doctor appointment. She loves being with him, he treats her like a queen, not an old lady, and they talk as much as she and I do! He'll also buy her lunch.

The goal is to have a totally in-house day tomorrow. I need my strength for the four hours of driving on Sunday to hold the new baby in the family. Mom is very excited. I will try to remember to post the photo of our gift with an explanation before I hit the road Sunday.

Thursday, June 28, 2018

Anxiety

Jeannie looked awful when I picked her up for the rehab class on Tuesday. She looked frail, tired and just not well. Yes, she is on hospice but I was still surprised what a difference a few days made to her appearance.

We talked about her situation while driving to class and I am continuing to learn a lot about the whole process of hospice. It can be brutal. Apparently, she is not dying fast enough and they have given her a couple more months in the program to prove that she is failing. Great, with sarcasm.

With that on her shoulders, she was taking too much lorazepam for anxiety, yet was still showing signs of major stress. They changed her medication to 10 mgs. of Prozac. She was very nervous about taking this particular drug every day forever. She shared that with the anxiety, she was now also experiencing depression.

There it was. That was why she looked so awful and not her usual self. I was seeing the depression before the change of medication the day before had taken its full effect.

She is not the type of person to lay down and die. Kind of reminds me of me. She wants to stay out of bed all day, eat homemade food and exercise. I will know that she is close to death when she is unable to do those three activities.

I feel honored to spend this time of her life with her. I am blessed that we can talk about the hard stuff and I can offer some relief by just listening.