Living Well with a Bad Diagnosis - Lung Disease

Friday, June 30, 2017

Frantic Pace

By the time I arrived to pick Jeannie up for our rehab class at 11:00 yesterday, I was exhausted! I felt like I had run a marathon! The moment Michael left, I ran through the house for the final touches before the housekeepers arrived at 9AM. Showered and dressed, I was ready to go right before they arrived, or so I thought.

As I gassed up the car for today, paid the mortgage, went to CVS for a huge run then to Safeway, I kept glancing at my watch. I had just enough time to drive home, put away all the groceries, grab a bit of lunch to eat in the car on the way to Jeannie's.

As I was driving in our neighborhood, a van pulled in front of me and I followed it as it pulled into my driveway. The housekeepers had not been to our house yet. I quickly unpacked the goods that needed to be refrigerated and got out of their way. Lunch and a bathroom. Both were needed.

I drove to the organic market, enjoyed their clean bathroom, opened the door to leave it when I bumped into a woman who I try to avoid. And, there she was, next in line and she wanted to talk. I needed to hustle. After I slipped away from her, an other gentleman over heard our conversation and engaged me as I tried to squeeze by him. After a couple of minutes, I was able to finally fly to the deli, find a bit of food that I could quickly eat in the car, paid for it and I was off. Thoughout the entire time in the market, I kept glancing at my watch. I was really running out of time.

Tourist traffic on Main Street was not too bad and I actually pulled up to Jeannie's as she walked out the door. Perfect timing. I felt like I had been running all morning. In the rehab class, I was able to do 2.2MPH on the treadmill for 8-minutes. Not bad for a fractured knee! It felt great this morning and is not swollen as I kept it wrapped all day yesterday.

Thinking back on the week, this frantic pace, especially around mom's doctor appointments, followed me everyday. And, it continues today as we food shop, haul it all home before mom and I have our toenail appointment later this morning. Again, a bit frantic trying to do a lot before our appointment.

I am so looking forward to doing nothing this weekend!

Thursday, June 29, 2017

Three Messages

After getting home from mom's two doctor appointments, I had three messages on our home answering machine:

1. The Medicare advisor with the news that Michael has been approved by the Medicare gap coverage and Part D prescription program. The cards should arrive next week. Great!

2. My new primary doctor phoned and asked me to return the call. My uric acid blood test for gout came back as normal. They still want me to see a rheumatologist and they recommended a local one. Well, I told them that it would have to be at my university hospital as they would need to sign off my on lung transplants. They will write orders and I will phone next week to see if I can arrange an appointment. Worrisome.

3. The scheduler for the acid reflux test phoned. I have been waiting for her call and had asked that they phone my cell phone. She left a message in the morning while I was with mom at her eye doctor appointment so I returned her call. She told me that she had "given away" all the available appointments and that if any are cancellations, she would phone me. Oh, and she will be phoning me later to set up an appointment sometime in SEPTEMBER/OCTOBER! I will be dead by then. Frustrating.

So, I wrote an email to Dr. K., asking if this time line was okay with her. She is out of the office until July 5 but after she learns the news, I'll bet an appointment suddenly opens up. We will see.

This morning, I need to make a huge CVS run and a small Safeway run while the housekeepers are working hard. Friday morning, mom and I are going to the butcher and Trader Joe's before our 11:30 toe nail appointment here in town. It has been one busy week.

Tuesday, June 27, 2017

The Calm Between Two Doctor Days

I survived all the doctor madness yesterday but fell asleep on the couch at 6:00 before stumbling to bed at 8:00. I was done and tomorrow is going to be another crazy day of two doctor appointments for my mom.

She had her eye exam and ordered new sunglasses before we zoomed down the freeway to enjoy lunch at a little cafe inside the building of her second eye doctor appointment. We met with a plastic surgeon to talk about tightening her lower eyelids again. Her eye drops for glaucoma drip into her ears, which is not good as she has hearing aids. The doctor was a handsome young man with a Swedish name. Mom, being half Norwegian, told him several cute jokes and they bonded. The surgery is in a couple of week. But tomorrow, we will drop the paperwork off during her pre-op exam in the morning then zoom across town to the large university hospital for her annual check-up with her heart doctor at noon.

I am looking forward to the Irish Fiddling rehearsal tonight since I missed it last week. It has been a few weeks since we have played a gig but that changes soon. My knee is not swollen this morning as i wrapped it the minute I got home yesterday and will keep it wrapped all day today. Before the rehab class, I will get the uric acid blood test.

The two pounds I gained while Christien was here are gone. Thank goodness! I want to lose a few more before the August 13 wedding of Michael's nephew. Dr. K. will not be happy as I see her the week before the wedding.

Monday, June 26, 2017

Racing Between Doctors

Fasten your seatbelt, it is going to be one heck of a Monday!

Mom broke her sunglasses Friday so I made an appointment for an eye exam at Costco at 11:15 this morning. Since she sees eye specialists, there will be no need to have her eyes dilated, which will quicken the exam. That is going to be important.

We will show up early, pick out new frames before the appointment so when she has her new prescriptions, we can order it and get out! Why? Because she has an appointment with a plastic surgeon eye doctor a good 40-minute freeway drive south of Costco. Her appointment with him is at 1:00. Since we will need to eat lunch, there is a cafe in the lobby of the second eye doctor's office so we might just grab something there to save more time.

I know we can do it all if there is no accident on the freeway. It will be very stressful until we arrive at the second doctor's office. What a Monday!

In other news, since I had been wrapping my knee in the very wide ace bandage, the swelling had disappeared. My knee was doing so well that I did not wrap it Friday or Sunday. This morning, the fluid has returned. Back to wrapping!

Sunday, June 25, 2017

Gout Feedback

What I am beginning to learn is that everyone has gout! It has been so surprising the reaction I have received from my new diagnosis. It is an underground disease. What I began to realize, when I remembered enjoying meals with people who were now sharing their gout stories with me, was that they were still eating beef and pork and lamb. They told me that the medication helped to keep the flares at bay so their diets were not too different from their pre-diagnosis status.

So, I am feeling less frantic at the thought of needing to reduce my very limited diet with even more restrictions. Maybe I can still eat meat every other week? That will be one of the questions I will have when I meet with my new primary doctor and with my nutritionist after I am formally diagnosed after the blood test.

Uric acid blood test.

So, I was thinking that maybe I had it checked during the first Lung Transplant Clinic blood draw last November. Checking into my file online, I found that they actually did check my uric acid and it tested right in the middle of normal. Odd.

If the blood test on Tuesday is normal, will this still be considered gout?

In other news, I did attack the house, washed and ironed two sets of sheets, made Paleo Scotch Eggs for breakfasts, made a food shopping list then took the electric hedge trimmers and attacked the front yard. Fortunately, Michael did the cleanup from my attack on the gardens. He also is going over the pass this morning and will do the grocery shopping all by himself.

He has come a long way from when he first retired, we went to Safeway and he walked around like a person from the backwoods looking at the skyscrapers of New York City. He now knows his way around the stores. Growth!

After the groceries are put away, we will be staying home, enjoying sunshine in the garden and relaxing. A perfect Sunday.

Saturday, June 24, 2017

New Strange Diagnosis

You will not believe what happened yesterday. The PA at my new primary doctor's office phoned to share the results of the X-ray of my hand. Was there a rose thorn present? Was it a ganglia? Was it nothing?

It was gout. Yes, gout on my finger. Thankfully, it is not in the joint but on the surface. It also explains the painful bunion I have been dealing with for a while. It is not a bunion, it is gout in my toe joint!

I have gout! I eat the most specific diet to keep the 100+ weight lose at bay of 3-4 ounces of protein and non-starchy veggies. That is all I can eat. No fruit. No starchy veggies. No pastas or grains. No alcohol. And now I have to adjust my very limited choices of food to adjust for gout.

No meat including bacon, beef, pork and lamb. No sardines or scallops. But, I can have some fish and seafood occasionally. The above is pretty much what I eat. How much chicken can I stand before being sick of it?

Next Tuesday before the rehab class, I am going to the lab at the hospital for a blood test of my uric acid level. If it is high, my new primary doctors will refer me to a rheumatologist at my university hospital. I hope this is not a sign of an even larger problem or disease.

This diagnosis totally surprised me and I was in shock all day. Gout?!? I eat so well! I don't overeat! I follow a strict diet! My next appointment with the nutritionist is going to be interesting!

Friday, June 23, 2017

Thorny News

The X-ray of my hand yesterday revealed nothing in the lump on my finger. The tech told me that the doctors would see the image on a clearer monitor and, if a tiny rose thorn was still in there, it would show up. She also told me it might be a ganglia, which can also be easily removed.

At 1.5 MPH, I did not win any races on the treadmill in the rehab class yesterday but it was the first time working out on it since I fractured my knee. It was a bit scary but I had no pain after five minutes. Next week, I will add time and speed.

It was still so hot, people were flocking to the beach so we unable to drive home over the pass and had to take the long way home from the north. The fog finally came in last night and the entire Bay Area will be cooler today but it will still be so nice. Mom and I will be in Palo Alto for the monthly shot in her eye.

I gained two pounds with Christien's visit so my focus is to get rid of those pounds in the next couple days. She made it to Florida and her mom's visitation with the family will be this Sunday.

When I was waiting for the elevator after the surgery clinic appointment on Wednesday, a young woman was waiting with me. I made a comment, she replied that she had been on the campus since 7:30AM and was taking the first steps for gastric bypass surgery. She told me that she was very worried about it but wanted to take care of herself because she had a 6-year old daughter. What worried her was the actual permanence of the surgery and how it was, after all, surgery. Anything could happen.

The elevator arrived. I wished her luck, she thanked me but it was clear she didn't want to talk about it in front of all the other elevator people. We all got off on the first floor, I slowed down and allowed her to catch up with me when I quietly said, "I'll tell you a secret. I've lost 110 pounds."

She stopped and replied, "You? Really?" I was able to tell her about the non-invasive liquid diet based program at our university hospital through the Weight Management Clinic, which included a doctor overseeing the weight loss with the help of a nutritionist. It was all covered by insurance. I said that if she really was nervous about the actual surgery, call for an appointment to investigate this option. She asked how much I had lost and in what time period. I reminded her that 6-months in a lifetime was not very long but it had not been easy. I was totally focused on it and did not cheat once as it was my only chance to lose the weight.

I saw relief on her face. She had another option to consider. I so hope I helped.

Thursday, June 22, 2017

Two Doctors Updates

I love my new primary doctor's office staff. I met with the PA to go over my medications and medical issues. She was lovely and was not overwhelmed by all my different doctors. About seven or eight years ago, I had a wild rose bush I loved near the driveway. The only problem was that weeds would grow near the roots. One day, I was weeding when I got some of the thorns in my finger. They were tiny and I pulled them out. Or, I thought I pulled them all out. Shortly, a raised lump of inflamed tissue was near the nail of my third finger on my left hand. All these years later, it has moved down my finger past the first knuckle.

Immediately after it appeared, my old primary doctor told me there was nothing there. Clearly, there is still something there. My new primary doctor's PA has ordered an X-ray to see what is causing the lump. Once we prove that something needs to be removed, she will refer me to a hand specialist, as I am a musician.  Nice.

I killed a couple of hours before driving to the appointment in the city with the surgeon regarding my GERD - acid reflux. I arrived early, of course, but became frustrated. It is a very busy practice. Lots of surgeons. Lots of patients. A small waiting room. I stood near the sign to wait while someone was being checked-in. I then approached the woman alone at the desk, she took my name then told me to have a seat and she would call me to check-in. Okay. I watched as several other arrived, names were taken then others arrive and checked-in. All this was done while she wandered in and out of an office, talked on the phone, talked to a returning desk mate, talked to the doctors, talked to the staff. It was so not efficient.

As the time of my appointment came and went, I finally approached her to asked, "Does the doctor know I am here even though I have not been checked-in?" She replied that she is managing the flow and the doctors don't worry about it.

Okay, then.

What they don't know is that Michael and I are on that board regarding the clinics and are always asked if we have had good or bad experiences since the last meeting. From a patients point of view, it caused a lot of anxiety, which one does not need before seeing a doctor. Fortunately, I was sitting next to two fantastic women and we were able to laugh about it. They, too, were told to arrive early to fill out paperwork and were dismissed when they asked for the paperwork. It was about 10-minutes later when the front desk person came around the desk to give it to them. Just very poorly organized and not at all comfortable emotionally for the patients.

So, I finally made it to the little room 45-minutes after my appointment time and waited a very brief time for the doctor. I LOVED him. I reminded him that we had met in 2008 then updated him on the current situation regarding the sudden onset of acid reflux and the possibility that the hernia from that surgery may somehow play a part with the problem. He agreed with me. He actually thinks that maybe the hernia is right at the site of the Nissen. He ordered a barium swallow test to follow it down to see if there are leaks along the way and a test that puts a sensor up my nose then down to my stomach where a computer attached to my waist will monitor the acid levels through the night. The next morning, the tube is removed and the computer information is downloaded. I have done both of these tests twice before. They are not fun but they will provide the information we need. One test, I have make the appointment while the other will take about a week before they phone me to make the appointment.

I told him that I was concerned about any surgery because of my poor lungs. He replied that it may not require major surgery but, if possible, it could be done endoscopically - down my throat. That would also be less invasive and an easier recovery.

When I arrived home right around dinnertime, Michael had it just out of the oven for me. He was so proud of himself!

Today, I am going food shopping in town then to my rehab class where I will walk on the treadmill for the first time since my fractured knee. Before the class, I am going to have the X-ray taken of my finger.

Wednesday, June 21, 2017

Two Doctors in One Day

Last night, it felt rather odd to be without company. Christien got to her friend's house right on time and Michael and I went to the 90th Anniversary party of the restaurant right on the ocean though we didn't stay more than an hour. It was packed. Around 400 people were expected and Michael does not do well in the middle of all those people plus music plus the din of talking.

But, I liked to look at the fashions. It was...amazing. I saw things I hadn't seen in decades. Hair styles from the 80s on a group of 60-year old women, as an example. The winner was a woman who was into tanning with pink strips in her bleached hair and tight jeans from the 70s with a cute pink mini-dress. She appeared to be in her late 60s/early 70s. And, there was lots of polyester. I was having fun watching it all. There were many lovely people there but I do have to say that it was fun to see the fashion DON'Ts.

The heat wave continues everywhere but here on the coast. It is so beautiful, foggy in the mornings and nice breezes in the afternoon. It is going to be one heck of a day. I meet with my new primary doctor at 9AM. Can you image how I am going to explain my medical history? It is going to take a lot of time! I am bringing the latest test results: the CT Scan report, blood tests, liver Fibroscan report, thyroid test, fractured knee report, PFT report. Hopefully, I will have time for a quick lunch before driving into the city for a 2:00 appointment with a surgeon.

Surgeon. Not a word that makes me happy and rather scares me. I really don't want any surgery but this recent bout of acid reflux needs to be brought under control. My lungs are not happy. The surgeon will order tests to check the surgery site of my Nissen Fundoplication to see if it is too loose. The problem is that the fatality rate to fix it is higher than I would wish. I wonder if the acid reflux is possibility being caused by a hernia I got during that first surgery. They warned me that the appointment may take up to two-hours. The surgeon who performed the Nissan took a position running a program in Chicago but when I had problems with it being too tight, I saw Dr. R. Apparently, I am seeing Dr. R. again today, though I really doubt that he will remember me. Last time we met in 2008, he told me it would be good to lose weight. I will remind him of that conversation and that I am 110 pounds lighter when last we met.

My fractured knee is hurting. Maybe it is because I have been on my feet a lot while Christien was here. Maybe I was walking more than usual. Today, I am going to try to limit my walking with valet parking at the university hospital and a close parking place here in town this morning.

As I made the bed this morning, I thought of all the things that will happen today before I climb back into it tonight. It should be interesting.

Tuesday, June 20, 2017

Last Day

Final day with Christien. It has been fun to just hang out and talk. It has also been so helpful to her to be with us while dealing with her family and arranging the details of her mom's viewing this weekend. She is flying home this evening, sleeping in her bed then flying out Friday to Florida to be with her step-father and her children.

Natalie and her family invited us to view the house for sale around the corner from us last evening, so Christien and I met them to also take a peek. It was so much better than expected and they have a real chance of getting this one. It is our exact model but with less land.

Christein and I plan not to leave the house until I have to drive her over the pass to a girlfriend's house for dinner. They will take her to the airport later in the evening. In the meantime, Michael and I are going to the very private, invitation only 90th Anniversary party at the restaurant right on the ocean north of us. The fun never ends! We won't be stay long as we are both exhausted.

My knee really hurt again yesterday. I think I walked too much and was on my feet too long. It is a bit stiff this morning so I will take an Aleve. Tomorrow, I am going to the rehab class and will hit the bicycle, which seems to help a lot.

These past few days with Christien got me out of my routine and I have really enjoyed her company. It almost feels like I have been on a vacation!

Monday, June 19, 2017

Father's Day Wrap-Up

It has been so nice to have Christien with us. We stayed at the house all day yesterday, enjoyed Father's Day with its glorious weather, ate a delicious lunch and dinner was fantastic. Word from the outside world is that traffic was stopped well into the late evening. Stopped. So many cars had been on the coastside that the road were overwhelmed. We felt so smart that we had not tried to go anywhere.

William phoned from England to wish his father a Happy Father's Day. All was well on tour and they were heading into London today. We were able to tell him that we would be at home at Christmas with just my mom and asked if he wanted to run down to Palm Springs with us the next day. He was thrilled! That is something to look forward to!

Christien was on the phone with the mortuary, her step-father and children on and off throughout the day. This time-out at our house has given her the opportunity to focus on her mom's passing and to deal with a lot of details.

Today, she and I are driving down the coast to the little town with the goat farm for lunch at the fantastic little restaurant. The whales have been recently sighted along the route so we may see one or two. We all decided that we will have leftovers for dinner tonight. Easy!

The greatest news is that Natalie and her husband are bidding on a house in our neighborhood this Friday! Winnie and Oliver might be right around the corner! That would be marvelous! Let's hope they win the final bid.

And, finally, the knee. I have been walking around with no pain and hardly a notice that there was a problem. No limp. It is still wrapped for support but it probably is not needed anymore. I think I will keep it for a bit longer as insurance.

Sunday, June 18, 2017

Father's Day

Happy Father's Day! We are together at our house by the beach all day. It is one hot day everywhere else and so happy that we are only going to a high of 74 degrees. Perfect! Windows are all opened, the ocean breeze is blowing through the house and the gardens look great.

I am sure William will phone his dad while on tour in England today. They are so close. It is joyful as a mom to watch their interactions. I get his financial or business questions. Michael gets the rest.

Christein arrived last evening, we chatted into the night and just finished breakfast. We are planning an afternoon lunch/supper of the Heritage Pork Chops, applesauce, a salad, Pancetta and Porcini Mushrooms Potato Gratin and Strawberry Pie. Oh, YUM!

My dad. He died almost 20-years ago and I still miss his humor and wisdom so much. There were times when I was going through the lawsuits regarding my illness when I really needed him. He was smart and thought like an attorney. He was an amazing dad. A teaching father, not a punitive one. We were never spanked but none of us wanted him to be disappointed in us. That kept us on the straight and narrow. He used humor to teach. I am sure I would have been in a lot a trouble as a teenager if I had not had such a strong dad.

I remember when I turned 13-years old, he toasted to me and said that they were finished. I was now a teenager. They would be watching how I conducted myself to see if they raised me well, or not. I was in charge of myself, which is Scorpio's dream. Perfect! He also told me that there will be times when he would have to make a decision against something that I wanted to do but that he would not be able to explain why. He told me not to feel like I was being punished but that he had lived longer and was more experience in life. He was making the choice because I was precious to him and so loved.

How's that for a dad?

So, how did I pass that down to our son? He was older when Michael suggested that we put him in charge of himself. I have blogged the story before but in short, we removed all curfews when he was almost a junior in high school. The deal included if he had a problem getting up in the morning or if his grades dropped, we would have to pull back, wait a bit and try again. Neither happened. He actually began to come home much earlier. We never believed in grounding as we believed with dealing with the issue: what happened, what should have happened, what will happen the next time. Done.

William was a quick learner. He was not a child who needed to be told something over and over and over again. A simple statement of what needed to happen and he just did it. An easy child to raise.

So, this Father's Day I am smiling at my sweet husband who is such a great Father to our son but I also see so much of my dad in him. Michael learned so much just watching my dad. When Michael does something similar to what my dad would do, mom jokes that Michael inherited that from my dad. So sweet. I am so blessed.

Saturday, June 17, 2017

The Visit

Christine is coming today! But, it almost didn't happen! Driving home from my mom's yesterday, she phoned from the niece's graduation ceremony. Her brother had glanced down at his phone, noticed a message from their mom's doctor and phoned to discovered that their mom had just died of a stroke.

There they were, the other side of the country feeling helpless. She had been ill for years, had her husband overseeing her care at home and Christien had been very active in her care. Even though they were expecting this news, when if finally came, it was a shock. I suggested that she fly to her mother's home and forget about us. She and her brother were going to talk and make some decisions.

In a later phone call, she told me that they decided to continue with all plans and have the services for their mom next weekend. She is coming for her visit this afternoon.

Let the cooking begin! It should take a few hours to complete the two breakfast recipes, the gratin and pie. With any leftover time, I want to get out in the garden to blow away anything after the wild winds yesterday and wipe down the front doors.

Michael and I are meeting early this afternoon to buy some clothes for him and will wait for her airplane together.

I am so looking forward to visiting with her in person instead of phones and computers between us.

Friday, June 16, 2017

Knee Doctor

Drum roll, please! The doctor took a look at a new X-ray of my fractured knee and declared that I am healing well. No surgery. No problems. It will take another 5-6 weeks before it is completely knitted together.

Deep sigh of relief. We almost danced out of the office.

We celebrated by doing massive grocery shopping and there is now more food in the house than usual. Tomorrow morning, I will be making Eggs a Different Way and a Crustless Quiche for breakfasts while Christien is here. For Father's Day special lunch/dinner, I will also be baking a Pancetta and Porcini Mushroom Potato Gratin and a Strawberry Pie with an Oatmeal Crust tomorrow morning. After baking, I will be heading over the hill around 2PM as the traffic will be horrible. The weather will be the hottest so far this summer and everyone is planning to spend the weekend at the beach. Our beach! So, I'll go shopping and maybe visit mom before meeting Michael to wait for Christien flight together.

When we got home from shopping yesterday, I went into the gardens. It felt marvelous to do the minor hand trimming that makes such a difference. The gardens aren't up to the normal standards but they look pretty good. After watering a few plants, I used my favorite Windex Window Cleaning wand and washed all the windows.

Today, mom and I are hanging out. Since she doesn't have any doctor's appointments, maybe we will do a Costco run. Maybe a Nordstrom run. Maybe a nice lunch somewhere. It will be good to see her.

Thursday, June 15, 2017

Seeing Dr. K.

It's early. Coffee is hot. The bed is made and the liquid oxygen tank is already outside ready to be filled while we are gone. Breakfast next then we are getting dressed. It is going to be a rough ride in rush hour traffic into the city to the newer campus of my university hospital to see the surgeon about my fractured knee. Let's hope that we all agree that I don't need surgery! Afterward, we will do food shopping for Christien's visit, I plan to get rid of all the cobwebs outside before I wash all the windows. Another busy day ahead.

But yesterday, my visit with Dr. K. went well. She was shocked at the downturn of my PFTs but said it actually might be true because of my recent problems with acid reflux. Nuts. She immediately made a referral to the surgeon for tests and she didn't know if my hernia had anything to do with it acting up. She was very concerned and said that if I did not hear from them within a week, I was to let her know. This is serious, she said.

With that, I had no problem with it yesterday and really don't feel the horrible PFT numbers. She also told me that there are very few techs now giving the PFTs and that I might have a problem having another one do the next test in August. Another NUTS!

Michael's nudging me to get going. We don't want to be late. Fingers crossed that I don't need surgery!

Wednesday, June 14, 2017

Full Day

It is going to be a non-stop day. It began with the sad announcement of the death of one of the members of our board at my university hospital. He and his spouse were such an asset to the group and Michael and I had become very close to them. It was so hard to receive the news of his passing this morning.

As I gear up to leave to the clinic for my appointment with Dr. K, I will make tonight's dinner first thing this morning as I won't get home until later and will be exhausted. While it is cooking, I will pull the house together for the housekeepers tomorrow, complete the food shopping list for Christine's visit and take a shower.

I have my list of what I want to talk about with Dr. K. The recent acid reflux possible causes and the latest PFTs are high on the list.

As I made the bed this morning, I thought about the entire day ahead and how it will all be behind me when I climb into bed this evening. Extra coffee for me this morning!

Tuesday, June 13, 2017

Acid Reflux

Tomorrow's meeting with Dr. K. is going to be interesting. I am going to have to break it to her that I am dealing with acid reflux and I want to explain the horrible PFT numbers on the latest test. The numbers are wrong. The acid reflux? Another thought came to mind last evening.

I was on the phone with Michael's sister Anna who has a hernia. She found out that her horrible "heartburn" was being caused by this hernia. A light bulb went off over my head. Something happened during my Nissen Fundoplication surgery, which resulted in a hernia right below my rib cage. In the last CT Scan, it was noted that it was a medium hernia for the first time. It had always been considered small. Something had changed. I suddenly have been dealing with acid reflux. Maybe the two are related.

We had an Irish Fiddling rehearsal last night, which went by too quickly. It felt good to play.

Today, I have rehab class and looking forward to a good workout.

We continue the march forward to Christien's visit. Food shopping list tonight. Massive gardening after the orthopedic appointment on Thursday. I am so looking forward to her visit.

Monday, June 12, 2017

Preparations Begin

All the paperwork and all the applications are done and even the CSAA, AARP, Costco memberships are paid. All my stuff is done. It really does feel good to have nothing hanging over our heads. I am even sending our wedding present to Maddy and William (Anna's son) today, well before their August 13th wedding.

We are preparing to welcome my friend Christien on Saturday for a visit until Tuesday afternoon. She will be on her way from a college graduation of her niece in Washington State and will visit here before flying home to No. Carolina.

She is the easiest house guest. We will be together for Father's Day, she wants to go down to the great place for lunch in the little town with the goat farm on Monday and we will probably go out to dinner, too. The house is not totally ready for her and the gardens will never be perfect, at this point. No annuals were planted this year, due to my knee. She understands and says she just wants to hang out with us.

Michael and I will be doing the final trimming of the gardens on Thursday after my appointment with the orthopedic surgeon to take a look at my knee. He will decide if I need surgery or if the recovery is going according to plan.

But, I have to get through Wednesday first. I have an appointment with Dr. K. and I have not such good news for her. Acid reflux and microaspirations. Words that chill a pulmonologist's soul! I will explain the incorrect horrible PFTs and I want her to listen to my lungs. It is going to be interesting.

Today, mom and I will be together for the first time in a week. I need to buy a fan for the guest room and we will go for lunch. And talk and talk...

Saturday, June 10, 2017


It was a sad funeral. The church was filled to the brim, the priest was a friend of the family so it was very personal, the family gave the eulogy and it ended with Frank Sinatra singing, "My Way." Tears everywhere.

We saw people we hadn't seen in many years and were able to talk with old friends afterward. The entire town was there: the farmers, fishermen, bankers, businessmen, council members, current and former mayors and just plain folks like us.

While he was being buried at the cemetery on the pass, everyone met at the Portuguese Cultural Center for the reception. The services were just over two hours and I was worried about Michael's blood sugar so we went to eat lunch before joining everyone. We were able to see the people we wanted to give our condolences to before the rest of the family arrived from the burial.

Cocktails were flowing, food was ready to be served but people were more interested in taking with each other. It was a really big deal for this little town.

We had to meet British Don in the city so we left before the food was served and on our way out the door, an older gentlemen walked down the steps with us. He asked if we were going by the church and, if so, could he have a ride to his car.

It turned out that he had driven down from Seattle for the services and was the banker who took a chance on the two brothers 50 years ago when they needed financing for fishing boats. Eventually, they owned seven fishing boats working in the Alaskan waters.

The older brother died. The younger brother brought tears to our eyes. His brother was the visionary. His brother was his hero. He was struggling with the fact that he was no longer here but trying to remember all the good times and lessons he learned from his older brother.

It was hard to see the family struggling with the loss of this dear man. His two children and five grandchildren will deeply miss him in their lives but, it was his brother who's heart was broken.

Friday, June 9, 2017

Not Sleeping

I am having sleeping issues. Exhausted, I fall into bed last night and almost passed out yet a few hours later, I was wide awake. I was so tired from very little sleep the night before but I went to bed right on time. Suddenly, three hours later, I was awake.

Tossing and turning and flipping channels, I gave up trying to stay in bed and got up two hours later. Out on the couch, I was awake another hour before drifting off to sleep. In total, I slept about six hours.

I'm exhausted.

Nothing has changed. Nothing is different. No routines have been adjusted. No late dinners. No acid reflux. No coughing. I just don't get it.

Today, we are facing the funeral, the reception and a quick trip into the city to see British Don. A full day. I will be exhausted again tonight.

We learned that another one of our classmates in the pulmonary rehab class died last weekend. It was unexpected and very sad. She was extremely kind and had a marvelous laugh. We were close in age and had sons that were born the same year. Such a shock.

I had no pain in my knee after working out on the bike. It felt so great that I even added a couple of minutes. Good news.

Thursday, June 8, 2017

Loose Ends Tied Up

It all came together yesterday. We met the Medicare Advisor and signed Michael up for that, gap coverage and Part D. She was delightful and very experienced. Since I have been on Medicare since 2007, we didn't need to explained everything to us. We knew the drill. It made it so much easier for her. While she was here, my phone announced a call from my university hospital. I now have an appointment next Thursday to see the doctor regarding my fractured knee.

We flew out the door after the Medicare Advisor left, drove a mile away and had a fantastic lunch at our favorite place where we split everything. Michael discovered their amazing chocolate chip cookies, which are cooked so the bottoms are caramelized. OMG! This could be a problem! He has recently lost some weight so he was feeling like he could try one. Big mistake! (He wants to lose 10 pounds.)

After lunch, we met with the head of the bank where I keep my Medicare Set-Aside account to have it put into our new trust. It took some time but she made it easy and we had a great chat. From there, we drove home where I promptly fell asleep!

The only thing we didn't do yesterday was to check out the new doctor's office. I am going to visit them this morning before heading over the pass to the rehab class.

We clearly are GS Warrior fans and I thought the game last night was going to kill me! The final minutes were torture! Hopefully, I will survive the playoffs!

Last night, I fell asleep feeling that the day brought a culmination on many fronts:

  • Michael signed up for Medicare, Supplemental Gap insurance and Medication Part D
  • I have an appointment to see the orthopedic doctor regarding my fractured knee
  • We finished all the paperwork for our new trust
  • The Warriors won

Wednesday, June 7, 2017

More Than Fishing

As far back as I can remember, I was the connection between my older sister and my younger brother. I was the middle child. There is three years two months between each of us so the biggest gap is between them at almost six and a half years. So many years would go by when there would be no phone calls or emails or contact of any time between them.

So, it is with that background that I was thrilled to see a change in their relationship. Recently, Chip and Betty were in the state, had visited us and were on their way to Betty's son's home in the eastern part of the state and would be driving near Lee and Jeff. They connected, made a date for dinner at a local restaurant and they had fun. They connected.

Every year, Chip and Betty haul their boat behind their RV to Montana for two weeks of serious fishing and smoking of their catch. During their dinner, Lee and Jeff invited themselves to meet them in Montana for three days of fishing. Chip and Betty were skeptical but darn if it didn't happen!

They have been together for three days and Lee and Jeff are heading home today. Here is a photo of Lee catching her first fish EVER. This 17" beauty was followed a few minutes later by a slightly smaller one. Chip caught a gorgeous 20" weighing in around three pounds! Fish are jumping!

I was so happy to get a text from Betty that everything was going well. Maybe this is just the first step of a more permanent change in their relationship. Maybe my sister will visit my brother in New Mexico. Maybe my brother will spend the night in his RV at my sister's house. Maybe they will phone or email each other on a regular basis. Wouldn't that be marvelous?

Tuesday, June 6, 2017

Lots on My Plate

Mom and I ran errands that didn't involve a lot of walking and we had fun chatting all day. It was the only day this week that we would be together. On Friday, Michael and I are attending a funeral of our friend John, whose wife passed away from cancer just two years ago to the day of his death, also from cancer. They were born and raised local kids, mom and dad owned a fish shack at the pier and he and his brother grew up fishing with their dad for the restaurant.

Fast forward and the now plumber brothers bought a fishing boat, then another, then more and began their foray into the dangerous fishing environment off Alaska. They owned this very successful business together for over 50 years. The business and the boats were sold about five years ago and the brothers retired.

John and his wife went through school together and he was devastated after she passed away. It had been rough, emotionally. He knew there was something wrong long before he sought medical care but he focused on his wife instead by fighting to keep her alive as long as possible. After she died, he couldn't ignore it anymore. By that time, his cancer had spread. It will be a sad funeral for the community and their two adult children but they will be together again.

REHAB: I am bringing the written report about my fractured knee with me to rehab and I know the RNs will be shocked. It was not what any of us expected.

FIDDLING: Crawling home from rehab, I am going to make a gyro burger and serve it with a side Greek Salad before playing with the Irish Fiddling group at the brewery this evening.

MEDICARE: But, there is no rest tomorrow morning as a representative is coming to our house to talk about the different options for Michael's Medicare and Supplemental/Medication.

FAMILY TRUST: After we choose Michael's Medicare plan, we will take care of the final paperwork for my Medicare Set-Aside money to be included into our new trust. If I am in a coma and Michael is getting bills from my university hospital, he will need to be able to access this money. We will try to have the local bank branch do it but they are horrible. Really horrible. I actually opened the account at one of their branches over the pass. If they give us problem tomorrow, we will head over the pass to the other branch.

A busy few days ahead.

Monday, June 5, 2017

A Weekend of Downtime

As predicted, I did nothing this weekend. Michael even took my food shopping list and brought all the food for the week home with him yesterday. Everyone is warning me to not do any unnecessary walking as that could shift the fracture and begin the 12 weeks of healing all over again. No, thank you!

I did find a great book to keep me happy by Jonas Jonasson, "The 100-Year Old Man Who Climbed Out the Window and Disappeared" and I did cook breakfasts and dinners and cleaned the refrigerator. There is only so much sitting I can do! The SF Giants lost yesterday. The GW Warriors won again. I know because I watched both games!

Mom and I are going to be together today so I am trying to think of where we can go but not walk a lot. A challenge. Tomorrow, I will be working the knee on a bicycle in rehab class and in the evening, the Irish Fiddling group is playing at the local award-winning brewery just north of us. Something to look forward to.

It occurred to me last night that I had not used my inhaler all day nor on Saturday. Since I was not doing much, I didn't notice any shortness of breath but I did have some wheezing this morning. That will remind me to make sure I use it today.

The challenge of not being so active is watching my food intake. I so worry I will gain weight. Michael's nephew William (Anna and Doug's youngest son) is getting married in August and I want to make sure to look fabulous in my dress. In fact, I would love to make my doctors nervous by losing about five pounds. We'll see. At this point, every calorie counts.

Saturday, June 3, 2017

What a Surprise

Dear Reader, you are not going to believe what happened Thursday. We went to the orthopedic clinic, had a series of X-rays of my knee then met with the marvelous Brenda, who I had seen when I tore my tendons in my hip years ago.

She pulled up the new X-ray along side the X-ray taken the day of the bowling injury six weeks ago. The machine at the clinic was so much more sophisticated than the one in the ER, which looked fuzzy next to the new one. She suddenly got very professional and said, "Oh my. This is a fracture. A large fracture." It made sense why I couldn't put weight on it for almost six days. It made sense why I hurt after walking on it during all the testing for the Lung Transplant Clinic three weeks ago. A FRACTURE!

A doctor will be contacting me and will want to follow my progress. I might need surgery if it shifts out of position. She said to stay off of it for another six weeks, except for rehab. She said the bicycle should really be good for it.

Poor Michael! He will have to wait on me for a bit longer.

Six more weeks. Seems like forever.

Thursday, June 1, 2017

Stepping Out

It started with the good intentions to fertilizing and water the pots. My adventure into the gardens for the first time in well over a month took an unexpected turn. The fertilizer was sprinkled on the plants and I watered it in everywhere until I headed to the very back "hidden garden." The walkway was totally blocked by the huge hydrangeas. Then, I noticed that everything needed major trimming. I have not been able to see this area from my bedroom and bathroom windows so I had no idea they were so overgrown.

I rolled the recycling bin into the back, grabbed my trimming shears and a pair of gloves. For the next two hours, I filled the bin to the brim with massive trimmings from the four hydrangeas, two huge camellias, one other plant near the camellias then I began on the central garden area just outside our bedroom window. The Meyers Lemon bush was trimmed along with four lilies and two other plants. Suddenly, I heard a noise and Michael was watching me!

He smiled and said, "Why don't you let me finish this and go into the house." I didn't understand until later when I saw myself, wet with sweat with twigs and dead leaves in my hair. I must have been a sight! He grabbed a rake and did the final cleaning up and watering. What a guy!

I do have to say it felt fantastic to move my body and to forget my knee for a couple of hours. I didn't put myself in any dangerous situations like on a ladder or actually climbing into the dirt. The weather should be mild during the weekend so I am planning to spend some time doing a bit more trimming.

This morning is the day for the knee to be examined at my university hospital's orthopedic clinic. It seems so much better these past few days and the fluid level has decreased. We are both excited to sign all the paperwork at the bank to put those accounts into the new trust then to meet with the new investment group to transfer our investments as part of our new trust, as well. What a day!