Goodbye for a Bit

I have been thinking a lot lately about taking a break from blogging everyday. Being stable and just dealing with problems mostly due to longterm use of prednisone is not so interesting. When major changes happen, I will blog. Until then, I am going to take some time away.

Picture me the garden or on the road with Michael.

Thank you for all of your support. If you are new to this blog, a ton of interesting facts are at the very beginning of this blog beginning in 2009. It tells a good story. Begin there if you want information about ILDs, pulmonary rehab, being properly diagnosed, disability insurance and so much more.

See you soon.

Healing

Typing is still difficult. Two fingers. Eight more days before the large bandage is removed by the surgeon. I will hit the thick wrapping by mistake and can feel the area with the stitches. Still tender and a bit itchy, probably a good sign that it is healing.

I tried to sleep a lot this past weekend and went nowhere exciting. Michael had to mix and shape our meatball dinner last night. He also washed my hair again, actually getting pretty good at it! He talked to me throughout the shampoo as if I was his client. Hilarious. Laughed the entire time.

Mom has another hearing aid appointment today then we are on our own. We'll see what trouble we can get into! On Friday, we reviewed her Medication gap insurance options for next year and did the paperwork. A big sigh of relief that chore is done. She is ready for 2019.

Transplant Today

Yesterday, I was told that the woman from my rehab class who I ran into at my university campus two weeks ago (she had just been listed for lung transplants) had been hospitalized for days. This is very unusual so she must have experienced a major downturn, which pushed her to the top of the list.

This morning, I got an email from a rehab classmate to announce that this woman is being transplanted today. My thoughts will be with her and I so hope it all goes well. A good woman. A strong woman.

Another strong woman, I will be with mom today as we go over her Prescription Insurance options. It will be a challenge to present a lot of data to her and to step back to allow her to make the choice for next year.

I phoned my insurance to insure all was well and that I was continuing my medical and prescription plans. After a great conversation, the representative was sending my contact information to their advertising division. Maybe they want a quote, too! I am expecting to hear from my surgeon's PR department today. They want a quote about my experience for their brochures. This, after the 90-minute interview with the ATS's data gathering company. I feel so important!

Public Relations

Difficulty typing so just an update. I still have no pain and continue to flex the joint several times a day. It was suggested that I skip rehab class today as they don't want the opened wound to get sweaty. I still plan to drive Jeannie to class and will take a walk while she is working out.

The big excitement is the thought of my hair being washed in the kitchen sink later today. Michael is willing to give it a shot. The bathing thing will happen this weekend.

Two public relation companies contacted me yesterday. One just needed a quote while the other turned into a 90-minute interview. We bonded. I think I will be used for their bigger campaign. Should be fun.

I was also contacted by a former parent from the school where I got sick. They had moved to the East coast, I really enjoyed their son and just learned that they are now living in our little town. Nice. We plan to meet for coffee soon!

No Cyst Anymore

It was a lot more serious than I expected. Removing the cyst was treated like any surgery. What I loved was that the surgeon was thinking. The cyst was a relative minor problem but he realized my immune system was compromised due to over a decade of prednisone use. He ordered an IV of antibiotics to help avoid an infection at the surgery site. Smart.

There was no pain during the procedure as a doctor deadened my fingers, which finally were back to normal by 2:00 this morning! I have no pain, though I left with a prescription for major pain drugs. It won't be filled today. No need.

The whole surgery took about 30-minutes but the set up took two hours. It was wrapped afterward, which can't be removed until I see the doctor in two weeks. No showers. No hair washing.

It's going to be interesting.

Best Friend

After Costco and Target, mom and I went to a great placed owned by a Greek family with a full menu but I love their Greek food. Delicious. As we were walking to the rest room before heading home, there was an older woman enjoying breakfast food seated at the end of the very cool bar with lots of panels of changing lights behind it. As we took the turn around her towards the rest rooms, I said, "Good for you! I love that you are here enjoying lunch."

She looked up at us and that, my friends, was the beginning of what will be a long relationship. She was 84-years old and she and mom immediately bonded. Mom has found her new best friend. It was magical to watch. We talked for at least an hour and walked out together after exchanging email addresses with a promise to meet for coffee at the same restaurant.

The surgery on my finger is today. I must arrive at noon and the actual surgery will begin at 2PM. What a joy to get the stinking thing off my finger. Details tomorrow.

Forced Relaxed Weekend

Scores of people were expected to make their way to our town on the weekend. Road were clogged. Travel times are crazy. It forced us to stay home so it was a restorative weekend. We have never been so relaxed and we each took naps several times a day. Michael is usually so hyperactive, it was wonderful to see him stop. Relaxed. He enjoyed football and baseball games, car shows and old movies on TV.

We have not heard how many people visited our little town this Pumpkin Festival weekend. It was cool and foggy most of time. They are gone now but the line of people traveling to the coast in search of the perfect pumpkin continues to the end of the month. Every single day. Traffic will be a challenge from the day after Thanksgiving until Christmas as families also make their way to our town to cut down their Christmas trees.

What no one knows is that January is the most perfect time to visit the coastside. The weather is usually mild and there are no tourists until the summer.

The surgery on my finger is tomorrow. The exact time has not been established yet but I expect to hear from the clinic today. I don't think the doctor is going to let me do rehab for a day or two. I'll also bet that I will not be doing the weights and upper body workout for a few weeks.

Mom and I will be together in Costco for glasses for her and Target for me. I love to give out regular sized candy bars for Halloween. They have the best selections and deals but I hope I am not too late. They sell out quickly!

Pumpkin Weekend

Another successful return to the treadmill in pulmonary rehab yesterday. My knees are not even sore this morning! I do admit that I made sure to ice down my left knee after I got home so I think that may have helped. It felt so good for both my body and soul.

I am counting down the days until Tuesday's surgery on my hand. This morning, the lump is larger and very hard. I so just want it gone.

Today is going to be a challenge. Mom and I are returning to the Mini dealership to have her thermostat replace and, hopefully, we will be out of there in three hours. With Friday traffic, I should be able to get home with an hour to spare before I have to be back in town for an Irish Fiddling gig. I'm not feeling good about it. Michael is prepared to meet me in town with my instrument at the gig if I am running late. Love that man.

I should never even think of complaining as Leslie has returned from buying their retirement house in Ireland last evening and she is still committing to playing tonight, jet lagged and all. She is tough!

We are planning a quiet weekend in our house as thousands and thousands of people work their way over the pass to celebrate pumpkins.

Flu Season Has Begun

It was a heck of a day. The service went fine on mom's Mini until they told us her thermostat was leaking at a pretty good rate. They wanted us to rent a car...nope. I phoned Michael, he told us that we would be able to get home then back again on Friday to have it replaced. It all worked out great. But, by the time we got back to mom's, it was well after lunchtime and we were starved. While eating lunch together, Michael phoned as he just passed a three car accident on the pass. Great. It was going to take longer to get home.

The long day became a bit longer and I was so happy to finally get home. As I pulled up to the house, he was cutting the lawn, which made me smile. I am going to water this morning before rehab class.

My knees loosened up yesterday and there is no pain this morning. This should help as I return once again to the treadmill today.

Just a heads up: I have run into several people who have already experienced the flu. It seems a bit early this year but just beware. We are washing our hands immediately when we enter the house. We try to keep our hands away from our faces. We try to be aware of not touching things out in the world. This time of year always brings on a bit of anxiety as the flu and/or pneumonia could kick me into lung transplants.

Hello, Treadmill

IT WAS GLORIOUS! I was finally back where I belonged! The treadmill! In pulmonary rehab yesterday, I handed the rehab staff my note from the vascular doctor giving her permission for me to return to my full workout routine, which included the treadmill. It felt fantastic to kick up the speed and do my usual time with joy in my heart. My whole body felt like it straightened up and everything was in alignment. I tried to not chat during the class but to focus on the exercise so I could leave as quickly as possible to grocery shop. There was no food in the house and it was my last chance for the week.

My saturation numbers were very good, surprisingly good. The only downside is that this morning, both knees are a bit sore. I continue to ice down the left knee and, since the surgery on my finger is next Tuesday, I am unable to take any kind of over the counter pain reliever.

Pumpkin Festival is this weekend. They are expecting over 100,000 people to arrive in our tiny town. We have stayed home the last two years but Michael is making noises about their Pumpkin Rolls and coffee. I have a feeling we will go into town early in the morning before the crowds and back home before the parade at noon. It gets crazy.

Mom and I will be together most of the day as her Mini Cooper needs service. My playing cards are already in my purse and we will be playing Shanghai. So much fun and it makes the waiting time fly by.

Oh, Baby

Wearing support hose on my left leg, we made our way to visit our favorite baby yesterday. It was actually the perfect time for a visit as Shelley's husband was not going to be home overnight. He works two days a week a few hours north. Then, she had a problem with her car so it was going to be in the shop overnight. To say she was very happy to see us is an understatement. She desperately needed a bit of adult conversation.

The baby was adorable in the cute bib set mom bought for her. We did bring a few gifts, we all got to hold and smell the baby before Michael and I went out to bring lunch back to the house. Mediterranean food. Delicious.

We stayed three hours and it was so worth the four hours in the car. The baby smiled and cooed and was not bothered at all as we handed her around. A really mello baby.

Shelley heads back to work at the end of the month then Russ is staying home with her for six weeks. They found a wonderful daycare situation for her after that time and Shelley was grated another three months of working from home two days a week. The baby is so happy, they are in a great routine and they are dealing well with this new little one who has turned their world upside down. She and Russ are such fantastic new parents.

On the Road Today

After a very quiet weekend, we are ready to hit the road to pick up my mom then drive almost three hours to visit Shelley and the almost 5-month old Hailey. Mom is excited to get her hands on them both. Michael is driving, thankfully, and we will bring lunch to their house from a local restaurant.

Babies always remind me that life continue. And, there is just something about how they smell that makes me swoon.

On Friday, I met with the vascular doctor and my leg is normal, just needs compression hose due to...wait for it...longtime use of prednisone! I am grateful there was no major underlying problem. She even wrote a note to the rehab staff stating that I could return to my beloved treadmill.

While there, I did run into Martha from my rehab class and learned that she had just been officially listed for lung transplants. She said I could share the news with the class. Fingers crossed that her wait is short.

AND, I was contacted by the American Thoracic Society who asked for my support of their campaign about the importance of Pulmonary Rehab. Yes!! It is one of the reason I am still alive. Good doctors and good medications are the others. They will be in touch within the next two week for a conversation and next steps. Exciting.

But, the most important thing we did yesterday was to get a flu shot. Just a gentle reminder.

Meeting and a Doctor

Everything fell into place yesterday and we arrived to the PFAC meeting with time to spare. There were no meetings during the summer and it was a room filled with friends returning after months of not seeing each other.

But, it is not an easy group. We are known for being very honest when our opinions are requested. Sometimes, I worry that we are a bit too honest! Yesterday, the nicest woman had the guts to return to another meeting with us. She really knew her stuff, answered all of our questions, heard our complaints and we teased her that she left the meeting unscathed. What really surprised her was that we offered to take on something that she was having problems getting through the vetting process. We look forward to working with her again.

There was a bit of frost on the pumpkins this morning. Fall has truly arrived.

I will make sure to grab a jacket when I drive into the city later this morning for the meeting with the vascular doctor. It will be interesting to hear what she thinks about my leg and I am sure she will be impressed with the tremendous purple/yellowing bruise near my knee! When we were there last evening for the meeting, the Blue Angels were practicing for their big show this weekend. It was loud but so amazing to watch. They may make another pass or two today.

While I am there, Michael will be with mom for her monthly macular degeneration shot in her eye. She loves being with him and they plan to have lunch together afterward. Doctor day all around!

Conversations

During our conversation yesterday, Barbara and I agreed that there was nothing like old friends. Conversations just continue. No history needed! What was kind of funny was, at our age, a lot of the conversation had to do with our health! People laugh that the older we get, the more we talk about all our health issues but, I believe, this is how we all learn from each other. "Have you tried this?" or "I found that this helped my mom."

The two hours flew by and we promised to meet more often as she was now retired.

Jeannie and I will be leaving rehab a bit early as Michael and I need to get into the city for the PFAC Board Meeting at my university hospital. I have so much news to report to them. During our last meeting before the summer break, I shared once again that I was still waiting to be seen at the Rheumatology Clinic after turning in the referral by hand last October. Today, I will announced that I finally have been treated and announce the diagnosis of Pseudo gout.

Also, I have been asked to share my experience with a telephone appointment with my doctor in the Liver Clinic, as I was the first one on the Board to have one of these meetings. It was very successful, I didn't have to drive into the city and pay for parking. Loved it.

Humid

My knee bothered me all day. It actually began to throb around dinnertime, which brought out the ice. Stairs are an issue, both up and down, so I avoid them when possible. The vascular people will be seeing me on Friday.

Our power company shut off the juice to do some work here in our neighborhood. We pulled all of the important plugs before the power was shut off right at 9AM. After a haircut in town, I did the grocery shopping over the pass.

Two things:
1. This morning, both knees hurt.
2. I really feel for those who live in states with humid weather.

Both knees hurt and I am a bit concerned that I am beginning another flair of the Pseudo gout. I am going to have to resort of some Aleve today, a rare event.

We had our first rain of the season in the early morning from a tropical storm from the South. It was warm and humid. By the time I tried to haul all the groceries into the house, I needed supplemental oxygen. I can't imagine having to deal with the humidity for months, as so many people with lung disease have to do if they live in certain regions.

On a positive note, newly retired Barbara and I are meeting for lunch to catch up on her recent travels. So looking forward to it!

Quiet Except for a Parade

It was a very quiet weekend. Lots of household chores, watering the gardens and just being home. We even bought two pumpkins for the window boxes. It is truly Fall. The next few weeks are going to be very busy.

Mom has some issues we have to deal with this morning, which will take some time. I know she is going to need to run a few errands as well.

My knee is better but I am still icing and wrapping it as the large bruise beings to change colors. I meet with the vascular doctor next week. My liquid oxygen tanks were finally filled Friday evening and I am happy to have it instead of my concentrator at night. I sleep so much better! My breathing has been a bit difficult since it has been humid as we wait for the first rainstorm of the season tomorrow.

Yesterday, we decided to go out to lunch to a place on Main Street. We sat on high chairs at a bar in the front window and watched the tourists and traffic go by. Suddenly, the Sheriff blocked the traffic at the end of the block and we realized that the traffic had also been stopped from the other end as well. What? No traffic. A truck began to pass by our window with a priest speaking Spanish into a microphone from the back. He was leading a parade, a celebration from the Catholic Church a block behind us. They were circling the block. There were four statues surrounded by flowers carried on the shoulders of several people. A long parade followed with people of all ages from babies to the very old walking slowly with walkers or canes. It ended with another Sheriff's car and the traffic began again.

We looked at each other and commented that we loved living in a town where this sort of thing happens. We live in an area that is rich with Portuguese and Mexican traditions. Lunch with a parade. Pretty great.

Liquid Oxygen Delivery

Friday. I have no plans for the weekend except for grocery shopping with Michael. It has been a very busy week so I want to focus on reading, a bit of exercise and recovering. Sounds rather dull but I am so looking forward to it.

I focused a few hours yesterday on household tasks I have been meaning to address. It felt great to finally organize things like my shoes, makeup, bathroom drawers as well as washing some of my more delicate clothing and sheets. Fresh sheets! Always a treat.

While remaking the bed, I did need oxygen but still was able to do the rest of the chores without support. Liquid oxygen is delivered every two weeks to our house. I am able to fill a container then use it in a backpack to do yard work or to take a walk. It is clean and I love using it though my oxygen company is now refusing to supply it to new customers. They are trying to get rid of it completely as the tech who fills it has to be certified. Sometimes, he is sick or the truck is broken down and they can't make my appointment. That happened last week. The truck was broken but they were supposed to fill it yesterday, a week late.

The large holding tank is close to empty. It has not been used since last week since I have a large concentrator as backup, which I have been using around the house and at night. My electric bill is going to hurt! We hope our favorite oxygen guy comes by to fill the large holding tank today. If not, it's another week of the concentrator at night and I will not be able to do yard work or take a walk. Fingers crossed.

Full Room

In a way, it was fabulous to sit at a table and watch all the people come through the door to the 10th Annual Patient Appreciation Luncheon at my university hospital. Doctors, staff, nurses, administrators, patients all together in one room. I was invited as a founding member of the Interstitial Lung Disease Support Group whose leader recently retired but is volunteering to continue leading the group. She sat with us but was often pulled away to say something to the group or to see some people. It was good to have her there. She is greatly missed.

In another way, it was rather terrifying as I realized that all but a very few of the patients I have met through the last 10 years of meetings were gone. There were only two present, and they joined the support group about five years ago.

Again, as with my rehab class, I am feeling like I am top of the list. Last person standing. Rather daunting.

I was thrilled to be able to chat with two of the transplant doctors, whom I had met with as well as the head of the ILD Clinic. We have been friends for a long time. We met just before my lung biopsy in 2005 when he asked if they could save a piece of the biopsy for research. Yes, of course. He had three little kids back then and I was so happy to hear the oldest one was just dropped off to college! Time flies.

He used to have a co-head of the clinic, whom I adored. She had a baby at 40-years old but I haven't seen her in about three years. We used to bump into each other in the hallways and cafeteria so I worried she was working elsewhere. He confirmed that she was still working in the clinic but was getting an additional advanced degree. I looked at him and said, "Raising a young child, doctor, researcher, professor AND getting yet another degree? Somehow, I'm not surprised." He laughed and nodded. I'll continue to keep an eye out for her.

Michael enjoyed the event, especially the food. He chatted with people and I think we were almost the last to leave. A lovely day..

...And Then We Played

Test day! I drove into the city exceptionally early as I needed blood work for Dr. K. and the sonogram of my leg. Often, there is a long wait time for the blood draw due to all the transplant people. Planning an hour of wait time, it was a nice surprise to find myself alone waiting for my number to be called. I was finished within minutes. Thankfully, I brought a book with me and read until heading upstairs to the vascular clinic.

I did get the results of the blood tests later in the day. The numbers are not good and I expect to hear from Dr. K. who will send me to yet another specialist. My immune system needs boosting.

Onto the vascular clinic for a sonogram of my leg. I arrived 45-minutes early, she took me right in and I was gone before my 10:00 appointment. It was really a very simple test, I could hear the blood flowing as part of the test. It will be interesting to see what is going on with that leg.

My poor leg. The bruise has grown tremendously but I was able to move around a whole lot easier yesterday. The only pain happened when I tried to pivot or step down a stair on the good leg, which somehow hurt my bad knee. I was even able to walk around the clinics building without pain.

To add to a fun day, I had a rehearsal with the Irish Fiddling group last night. It was fun to play some great music with six other musicians. Perfect ending to the day.

BOOM! Again

Saturday, I commented to Michael that I was expecting the third shoe to drop, so to speak. Facebook announced someone broke into my account, the new medications kicked me into the Medicare donut hole and I was waiting for the third thing to happen. Bad things always seem to happen thirds.

It happened yesterday at 4PM.

I had just announced that a fantastic dinner of cauliflower, chicken, green onions and low-fat cheese was ready and just out of the oven! While walking from the kitchen wooden floors to the family room, where Michael was sitting, my Sketchers grabbed onto the wooden floor and stopped me short. I was propelled forward  and landed on my formally fractured knee onto the family room 9x12 rug. It hurt. It really hurt.

When I was able to move, I crawled crab-like back to the cough and lifted myself onto it. No hip fracture. No arm or hand problems. Time to test to see if I could put weight on the knee. Standing and...yes! It was not fractured! Yes! But, there was a problem.

It immediately began to swell while we watched. I thought maybe we dodged a bullet until I noticed a huge bruise that felt like a large cord under my skin. I thought that maybe I severed something. That was when we made the decision to make the long Sunday night drive into the city to my university hospital.

Michael grabbed some ice and we headed north. The ER was not too crowded, they checked me in and we sat in a separate area for immunosuppressed patients. We waited about an hour before we were taken to the lesser ER area, where I had been seen with my fractured knee 17-month earlier. They were fantastic. After three X-rays, it was determined that I had NO damage! The large bruise was exactly that, a bruise. Yes, a large and very deep contusion but, nevertheless, just a bruise.

THANK GOODNESS!

They sent us home with ice packs and with the knowledge that I was seeing the vascular people for testing on Tuesday. They said it was exactly what was needed.

A side note: I was very touched when the doctor told me that she would never have suspected that I have been on prednisone for so many years. I neither looked or acted like it. I mentioned that I am on a very strict diet but she said it was how I looked. My face and body did not show the common effects from the drug. It made me feel pretty good!

Bump is Still Here

Nope. Didn't happen! It turns out that I need to stop some medications before surgery on my finger bump, which has been scheduled in a couple of weeks. I so wanted it gone! I did learn that it will be an approximate 6-week recovery, healing time before I can play my bass.

On the phone with my online pharmacy, I discovered that the pseudo gout medication pushed me into the Medicare donut hole! The first time ever! I am so careful of managing my drugs and this came out of nowhere. It was $815.00 (billed only $175.00 to me!) and along with three drugs I bought in August threw me into the hole. It is going to cost me a lot of money through the end of the year. All out-of-pocket-costs will be 35% for brand name and 45% for generic drugs. Gonna hurt!

Yesterday, I actually worked about three hours in the gardens, the most time spent out there in a long time. It felt fantastic. I did some major trimming, then cleaned all the mess up and hauled it to the big container. Good exercise. I can feel it a bit this morning. Everything needs to be watered later today but first...

I am heading over the pass with Michael. We will do a bit of shopping then have some lunch. It is totally foggy and cool here on the coast and the 49ers are playing this morning so traffic shouldn't be too awful!

On a funny note: As we were leaving the scheduler for my finger surgery, I commented, "Elvis is leaving my finger!" then heard some laughing. It was my surgeon! "That's funny! Are you going to tell jokes during the surgery?" I smiled, "It worked for the liver biopsy surgeon! Had him laughing the entire time!"

Cyst Be Gone

Say goodbye to the bump! We are leaving at dawn to make our way to the fancy Orthopedic Center of my university hospital to have the myxoid cyst removed from my finger this morning. My string bass playing finger. There will be photos! I am so excited to just have it gone and out of my life.

As we will be in British Don's old neighborhood, we might swing by his friend's restaurant for an early lunch. In my purse, I have our grocery shopping lists with the goal to drive down the Peninsula to the butcher's and Trader Joe's while on that side of the pass. Killing many birds with one stone today. (What a horrible way of putting that!)

The best part is that we will be together all day.

Two Doctors

It all went well yesterday. My glaucoma doctor said I was stable then we talked about his new part-time position teaching about treating glaucoma as a professor at my university hospital. He didn't know that Michael and I sit on a patient advisor board in charge of the clinics. Well, that brought on a whole different conversation. He was sharing some issues he was trying to deal with, nothing different then what we had heard from other clinics, so I was able to offer him the steps that are being put into place to address those specific issues. It made him feel better.

From there, I made the drive into the city without a problem. While eating lunch, I was able to complete the paperwork for the vascular doctor in two weeks. Dr. K. was in a good mood, we chatted about the latest diagnosis of pseudo gout, my vascular issues and Friday's surgery to remove the bump on my finger.

Flu shot advice: She said to not take the vaccine until mid-October or I would need a booster early next year.

I am doing so well that we have agreed to see each other in 6-months. I did warn her that I was mostly worried about getting sick beginning now but it seems I have been ill in February or March the past couple of years. My goal is to stay well this winter.

She did ask for a blood test to see what my immune system is doing. Two years ago, it was still in a decent range but she wanted to check it again. If lower, she will send me to another clinic to have it boosted.

This morning, Jeannie and I will drive to rehab class together. It is going to be 80 degrees over the pass, very warm for us Coastside people!

Medical Documents

I've been banned from the treadmill in rehab until I see the vascular doctor. They don't want to add any stress to my formally fractured knee and that leg until it has been cleared by the doctor. While waiting for both doctor appointments today, I am going to tackle the stack of papers I got in the mail yesterday from the vascular clinic.

Some advice: I keep a medication document, a document of my hospitalizations and my family's medical history going back to my great-grandparents. The doctors love all three documents. I carry them with me so when I fell in Palm Springs a couple of years ago and was able to give this information to the emergency staff, they were so impressed! Very helpful! When I am filling out paperwork for a new clinic and all of the above information is requested, I write, "See attached." They love it as well.

It is going to be a long day. Glaucoma doctor first up followed by a long drive into the city and an afternoon meeting with Dr. K. Should be interesting!

Rehab

I've been sleeping so well that I almost feel like it is a gift. Hours and hours of lovely sleep, so different from my recent normal. It has brought my energy level back to where I am able to fit more into my days. Hopefully, it will continue.

Rehab class is today, which out Jeannie, so I am heading over early to run a few errands and to grab a light lunch. Tomorrow is going to be a bit of a challenge as I have a 9:30 glaucoma doctor appointment over the pass then, after a long drive into the city, Dr. K. and I will be meeting at 1:00. We will be going over my new diagnosis of pseudogout and will discuss my upcoming appointment with the vascular clinic. I always image her as my main doctor, captain of the ship. As such, I run everything by her.

My focus is to work out hard today, cook a great dinner of Shrimp and Broccoli tonight, go to the Irish Fiddling rehearsal then sleep well in preparation for tomorrow. It is going to be a full day.

New Diagnosis

Made it through the weekend! Two doctor's this week: Lung doctor and Orthopedic Hand surgeon. Plus, there will be two rehab classes and two days with mom. A full week.

It is amazing that I am feeling so good and filled with energy. Pushing myself so hard this weekend actually was a good thing! I remember what mom's doctors keep telling her: Don't slow down or stop. If she does, she will not be able to keep doing it.

What a difference there is after changing my statin drug from 20 mgs of Lipitor to 5 mgs of Crestor. Holy smokes, my short-term memory is back! Names! Titles of books and movies! Lists! I realize that it may just be a change in the amount of the drug that made the difference but it is marvelous. I have a feeling the dosage will be increased so I am enjoying it as long as possible.

I have been formally diagnosed with Pseudogout. Not gout but pseudogout! It is like gout, treated like gout but the large crystal deposits in the joint are caused by calcium pyrophosphate dihydrate while regular gout is caused by sodium urate crystals. It can resemble Osteoarthritis. Sooo, a new drug has been ordered and I should be receiving it soon.

Today, mom and I will be together in Costco visiting her hearing aid people. Michael and I have been eating very lightly all week so I am looking forward to a nice lunch together. A nice start to a busy week.

Two Days of Fun

We heard from Christien from the Raleigh, NC area and she was high and dry. After amazing rains and winds, she was still intact and never lost power! She did mention that the people east and south of her were dealing with flooding. So happy for her.

Our Friday night with Dave and Lori lasted until 10:30, way past my bedtime but we were having such a nice chat! Our Marinated Prawns and 7-Layer Taco Dip were hits. Lori served Cuban sliders, which were absolutely delicious! We promised to do it all again for our birthdays in November.

While driving to Dave and Lori's, my cell phone rang. It was the Vascular Clinic calling to make an appointment for tests later this month and an appointment with a doctor in early October. This is regarding the video I posted with the bump appearing and disappearing as I flex my foot. My primary doctor felt I have circulation issues in that leg.

Yesterday was a crazy day. The seven members of the Irish Fiddling Group arrived at my house at 10:30 for a quick photo shoot in my garden. We only had minutes as the others had to set up for our gig in town beginning at noon. What I didn't realize was that we were playing outside! As the sun moved, it got quite hot! As my roadie husband was busy, I had to haul the bass out of the house into the car to the gig then haul it out. It was a lot of work, I had my oxygen with me and really needed it. But, in the end, I was rather pleased with myself. I must admit I had the help of two angels. As I was unpacking, one gentleman asked if he could help me. He saved me. While I was trying to pack the bass back into the car, another gentleman asked if he could help. He put it in with ease! I thanked them both and was extremely touched.

After a getting home, I made some dinner and promptly fell asleep on the couch at 5PM. Michael put me to bed at 5:30 and I slept until 5AM without even a bathroom break during the night. I had been exhausted from Friday night and the worked of playing a two-hour gig outside added to my exhaustion.

This morning, I am feeling fantastic as we watch the F1 race from Singapore.

Fun Friday

Our friend Christien in the Raleigh, NC area was preparing for the storm when we contacted her yesterday. She lives a couple of hours inland but they are expecting a lot of rain and winds. Watching the news, she is getting hit right now. We will be keeping in touch with her, when she has power!

It was such a surprise that the workout in rehab class yesterday felt fantastic and my numbers were excellent. Amazing what a run of antibiotics will do to the lungs! My aerobika has not been bringing anything up in the mornings and there was no wheezing or coughing at night. I'm in a sweet spot!

Michael and I had a ball making one of the appetizers for tonight - Marinated Prawns. He did find the Tarragon Vinegar, we made the marinade and the shrimp have been soaking up flavor all night. It will be drained off, leaving only pieces of onion with hints of Dijon and German mustards, horseradish and tarragon. We will make the old-fashioned 7-Layer Taco Dip right before we head to Dave and Lori's this evening. So looking forward to seeing these dear friends.

Mom and I are heading to her university hospital this morning for her Prolia shot. It is our rare third time we will be together this week! I bet that we will still talk non-stop!

Long Day

Sorry about yesterday! I had to be showered and out the door by 7:30 and just ran out of time. When I bought groceries on Tuesday, the refrigerator unit holding yogurt and sour cream, among other items, had malfunctioned and the entire inventory was inaccessible. I was desperate for yogurt as it is a staple in Michael's diet. It helps control his low blood sugar issue and he makes sure to have one container every morning as part of his breakfast. The only other store in town does not carry the brands he likes so...I went over the pass early to a larger Safeway. They had everything I needed plus flavors I have never seen in our smaller store.

From there, I went to mom's then we headed back home to drop off the groceries. We had pedicure appointments and thought that would be a nice day. But Tuesday evening, her endocrine department left a message on my phone that she needed blood work before her Prolia shot on Friday. After our pedicures, we hustled over the pass to her university clinic site and their lab. It took all of five minutes to draw the blood. She was ready for the appointment on Friday.

It all fell into place beautifully. With help from Michael, we made a really good, vegetable-rich Low Carb Jambalaya for dinner. The recipe is HERE .

The antibiotics have ended, I am back to rehab class today and rather looking forward to it.

Mantra

Still not 100%, I am struggling with shortness of breath. Mom and I were over the pass and the smell of smoke from fires was lightly in the air. That may be the cause of this problem but I worry it may be something else. Dr. K. and I have a meeting next week. Her opinion means so much to me as she see things clearly while other doctors stumble.

Staying positive keeps me moving and I am looking forward to two events. Friday, we are having cocktails with Dave and Lori. We have known Dave since 1975 and Lori became our friend when they married. Dear friends. The next day, the organic market in town is celebrating a big anniversary with events all day and my Irish Fiddling group is playing from 12-2. It should be lots of fun. There is a rehearsal tonight to review some new material so we are ready.

This morning, it is all about grocery shopping, which is always harder than it sounds. The hauling to the car then into the house is a challenge. Wipes me out. If there is anything left in my tank, I want to trim a few things in the yards and do some weeding. We will see.

Adjust for the disease, keep moving forward. My mantra.

Feeling So Much Better

I feel so much better! Taking the antibiotic with breakfast yesterday was the answer to my stomach problems. We had a nice day together, I was able spend the morning over the pass with Michael, bought the 2019 Moleskin date book for my purse and a book - Crazy Rich Asians! As I am banned from movies, or anywhere there are lots of people close together, I so wanted to find out what this was all about. It was a shock to discover that it was actually book one of a trilogy! So Crazy Good!

Because of the antibiotics, I am banned from rehab class until Thursday so instead of the class, I will be grocery shopping tomorrow. Michael says he feels the need for lots of salads and vegetables. Who is this man? He has so changed! My menu for the week will be light and filled with vegetables, per his request.

Today, mom and I have no plans but I am sure we will find errands to run and a great lunch somewhere.

Antibiotics

Well, it wasn't what I thought that was causing my upset stomach. It was the antibiotic itself. How did I figure it out? Yesterday at 3AM, I took the antibiotic right on time and sat up instead of lying down, thinking that was the problem. I was sick as a dog within an hour. Vomiting. Feeling sick all day.

Settling down, I slept until 10AM then I had to face taking my morning meds. That took a bit and I made it, with the help of some toast. Throughout the day, I kept falling asleep. Finally, I fell into bed last night at 7PM and slept through the night.

I am changing the way I am taking the last few days of the antibiotic. Eating before and right after taking the pill seems to help, though I understand it won't work full strength.

Today, I hope to get back to life, hang out with Michael, buy the 2019 appointment diary for my purse and maybe some lunch. Hopefully, there even might be some sunshine!

Antibiotic Upset

I made a bad mistake this morning. I have been taking the antibiotics every twelve hours at 3AM/3PM. It worked well so it didn't interfere with my first thing in the morning thyroid pill on an empty stomach and the need to wait an hour before any food. Wake around 3:00AM, bathroom break, take the antibiotic and head back to bed. It worked great yesterday. This morning...not so good!

Waking a bit early, I was waited in bed before I got up to use the bathroom then jumped back into bed. It was then when I started coughing and wheezing. Drat! I needed to leave the room, find my inhaler in my purse and hang out in the living room.

Good news! Wheezing and coughing stopped! Great! Time for the antibiotic! Done!

It was cold and I put my head down on a pillow for about 10-minutes when I remembered that the brochure mentioned not to lay down right after taking the pill. It could cause an upset stomach. I guess I remembered it a bit too late.

I am dealing with nausea, burping and feeling miserable. It is all I can do not to vomit. Even ads on TV involving food are making me turn green.

Mom has the shot in her eye this morning and needs me to drive her home afterward. I can't cancel. I must be well enough to be with her all day. I've got a few hours before I have to leave home so hopefully, I can get some food in to calm the nausea.

Memo to self: Sit up after taking antibiotic.

Video and Pizza!

It is never a good sign when a doctor says, "Geez, I've never seen anything like it!" That is what happened with my primary doctor yesterday. She watched the video of the bump on my leg then we actually got it to show up in person. She is sending me along to a vascular doctor at my university hospital. I also noticed that I started to have a deep cough beginning Tuesday afternoon so we made an agreement: she prescribed antibiotics and I would contact Dr. K. to let her know. Dr. K. sent me a thumbs up.

All is right with the world.

Well, not quite. I never like to workout the first couple of days after beginning antibiotics. I want my body to accept it well. For today's rehab class, I know Jeannie is expecting me and has no other way to get to the class, so I am going to drive her there then get a good bowl of soup for lunch. To protect her, I will wear my oxygen and a mask in the car.


Food. I was at Safeway yesterday and found this pizza that my nutritionist told me about. It was absolutely delicious! If you have issues with processing sugars (carbs, fruit...), this is the best pizza with a cauliflower crust I have ever tasted! Highly recommend it!

Conversation Before Rehab Class

I met a very young woman who just graduated from the 8-week program of pulmonary rehab and will now begin maintenance. Because of her age, I so wanted to know her story. Before my rehab class yesterday and 30-minutes into the class, she and I were able to connect in the lobby.

What a story.

She had a very rare lung disease of "disappearing lung," I think. The lungs just stopped working. No one knows why. No one know how to fix them. She had less than 50% of her lung capacity and had difficulty exhaling. The rehab program greatly improved her quality of life and she was committed to continuing the bi-weekly workouts. She was being seen at my mom's university hospital and very unhappy about it. Her pulmonologist moved to another hospital group and she was assigned to a resident who will be overseen by a doctor. That, my friends, was how I got into so much trouble until Dr. K. arrived on the scene.

As we spoke, she had been wanting to transfer to my university hospital so I gave her some names and helpful hints on how to transfer. Dr. K. would know which doctor would be best for her issue. I have a feeling we will be seeing each other down the road.

I am finally seeing my primary doctor this afternoon after being strongly encouraged by the rehab RN to have her check out the disappearing/appearing bump on my leg featured on the video I recently posted. My bet is that it is a fat bump. But this morning, I am meeting my biologist/musician friend for a chat and coffee after her trip to Boston to visit a friend.

A nice day ahead.

Michael's Birthday

End of a celebratory weekend so it is now back to real life. The rehab class is today but I need to change some appointments, grab fresh eggs from the store and make a few phone calls before class. Today is the return to my very healthful diet, no little bites of cake! We will be having Whopper in a Bowl for dinner tonight - a salad.

We did swing by my mom's yesterday to drop off a piece of birthday cake. She loves when we just drop in. Since we celebrated grandly for our anniversary, Michael wanted a simple lunch from In-N-Out burgers. We enjoyed the sunshine and chatted about our lives together. The tourists were not out in full bloom so we were able to get over the pass to be out in the garden for more sunshine and conversations.

Chip and Betty sent a birthday gift to "Farmer Michael." It was farmer overalls with seeds for his winter crop and a poem about being a farmer. Hilarious. It was a homage to his first ever successful vegetable garden.

William phoned later in the day to wish his dad a happy birthday. He was in rehearsals in Nashville in preparation of a final concert with the group he has been traveling with the past two years. After the concert, they are throwing a big party. He has hired two of his crew to go with him on his next project beginning next week!

Bon Voyage, Barbara and John!

Michael's Big Day

Today is his 66th birthday! Michael is celebration this special day beginning with opening cards and a present along with coffee this morning. He may even have his first piece of cake! It took three hours to make this authentic German Chocolate Cake. His request. We are going to run a piece of it over to my mom's later this morning then find something for lunch.

A low-key day together, just the way we like it.

We had a lovely evening with Rick, Natalie and Melanie with nice nibbles and a sweet celebration of our anniversary and Michael's birthday. Such nice friends who also happen to be our neighbors! After we left them, we went by Wayne and Jill's hours for a couple of hours of conversation. It was really fun.

Last night, I slept through the entire night, which is a very rare event. I think I am still going to need a nap this morning.

45 Years Together

Yesterday, Michael and I celebrated our 45th Anniversary. That's a long time. The world has changed so much since we got married and we have grown up together into who we are today. Sometime I worry that the current young couples not committing to a partner until they are in their 30s somehow miss this time of growing together. It was what we returned to after William left us for college and his life. We were not "mom and dad" everyday. We were just the two of us again and that did take a bit of a readjustment.

We decided to have a nice lunch to celebrate this day. As we get older, we have found that we don't feel so well after we go out to dinner. Too much food in our bellies to sleep! The Food Network's Tyler Florence has a great gastropub in San Francisco, Wayfare Tavern. It is in the Financial District, so it was not crowded. We had the perfect waiter and most of the place to ourselves.

They are known for their Fried Chicken but the waiter pointed out that I didn't have to order the entire half of chicken but could order two small pieces along with another item on the menu. Bingo! Perfect portions of chicken breasts! The other item was their Truffle Polenta Fries. OMG! Filled with small bits of truffles! We took two of them home and split them for dinner. Michael had the best Washington oysters then Steak Tartare. We were both served as many brioche popover rolls as we wanted, two were also packed for home. Wait for dessert...Donuts with a coconut sauce and creme fraiche. We ate just a few bites of food for dinner. Did I mention that when we expected the bill to arrive, it had been paid? British Don had arranged it from Oklahoma City! What a guy!

The drive to and from the city was beautiful and it was so cool outside, few tourists were out on the road along the coast. We were able to get home with minimal problems.

This morning, I am making Michael's request - Homemade German Chocolate Cake. It is his birthday tomorrow. But, this evening we are invited to Rick and Natalie's for a celebratory toast before going to Jill and Wayne's for dinner. As a thank you, we are bringing half of the cake to Rick and Natalie and a fantastic bottle of wine to Jill and Wayne's house.

This all reminds me of our actual wedding weekend. We were married on a Saturday night at 7PM, hung out on Sunday then took off for the Honeymoon from Hell on Labor Day, as he turned 21 that day and the car would be covered by insurance. Ah, memories!

Finger

The finger. After running around with mom yesterday, I contacted my dermatologist to ask if she would be able to remove the cyst from my finger. Since I also had sent a photo of the bump, she replied that it was a digital myxoid cyst and that it needed to be removed by the orthopedic clinic. It is a very difficult process. She also suggested that a sterile needle could remove the fluid but it would return. Nope. I want it gone.

Having been seen in that clinic for my fractured knee, I was able to contact that doctor to ask if he could remove the cyst. He replied that it needed to be removed by the hand specialists, I phoned them and made an appointment on September 21 for its removal! Goodbye! Thank goodness!

I am seeing new blood and X-ray results and it appears that the rheumatologist feels I have rheumatoid arthritis. That's not good but I really am not surprised. It would explain a lot.

There was a bit of giggling as I read the X-ray results to Michael as I swear I did not understand one word! When I speak with the doctor, I may ask if she could translate it from Medical to English.

Today is a big day. I will take photos and explain it all soon.

Some Nice Surprises

I arrived to both appointments early, as usual. Mr. B., the nutritionist, who got me through losing over 70 pounds, weighed me in and SURPRISE! I was down 2 pounds! Lovely! We looked back on my records and realized that it had been eight years since I lost the weight. He shook my hand and said, "Congratulations! You are not going to ever regain it" I told him that I still want to check-in with him a couple times a year, just to keep me honest.

We also discussed the diet issues in relation to the diagnoses of gout and coronary artery disease. He said that my diet is good but I need to end my love affair with meats like sausages, bacon, salami. You get the idea. He said to pull back a bit on turkey but salmon was great. Chicken and even certain cuts of meat for fine at the amounts that I am eating them. He gave me confidence that it will be a do-able adjustment to protect my heart.

Flying out of his building, I hopped in the car and made my way past many famous landmarks, in which I am still in awe. No traffic and I was appreciating every minute. I arrived at another campus of my university hospital but I had two hours to kill. I grabbed some coffee and a phone and talked with Michael. I wandered around, went by Dr. K.'s office where I discovered she will be returning on Tuesday from a long vacation then I finally made my way to the Rheumatology Clinic where I was welcomed. It was lovely. The doctor was on time. Very precise. Not a lot of wasted words. She asked a lot of questions then examined me. Gout. She didn't think so. She thinks I might have pseudo gout or maybe my prednisone and azathoriprine may be masking a bigger issue. The surprise? She said that this bump on my finger is actually a cyst and suggested that I have the dermatologist remove it! YES! PLEASE! (After I got home, I wrote an email to Dr. F. with a photo to ask if she could cut it out for me.)

After an exam, the clinic doctor ordered blood work then I had X-rays taken of my feet and my right hand. Done. Once all the material are available, she will review everything and contact me with the next steps.

I am in really good hands.

ps Still so looking forward to Saturday.

Need a Referral

Diving home from grocery shopping yesterday, it was all I could do not to fall asleep. Rolled down the windows, turned up the radio and sang. Within minutes of being home, groceries were put away and I fell onto the little reclining love seat and slept for over an hour. Then, I was off to Safeway to complete the week's food needs and I was feeling better.

It was worrisome. I emailed Dr. K. and received an immediate reply that she was gone but would reply when she returns. Usually, it states a date but, there was no date and that made me a bit nervous.

So, before my rheumatology appointment today, I am going to run up to her clinic and ask when she I will be returning. If it is not soon, I will ask to speak with the clinic's nurse for advice. I may even ask if another doctor could review my chart and the latest CT reports regarding "moderate coronary artery disease" and write the referral. 

We are so looking forward to the weekend. Will explain tomorrow.

And the news is...

It was a good news/bad news day yesterday. The good news was that I had a ball at the retina doctor's but it took over an hour to finally have all the photos taken and the meeting with the doctor. Within that hour, I chatted with a lovely older woman who was born and raised in New Orleans. We talked food! Then, while waiting for a photo of my eye, I chatted with a major restaurant chef and we talked about...food! After he was called away, I chatted to with two women and we chatted about our eyes then we talked about food! What a lot of fun!

The really good news was that the doctor said the bleeding inside my eye was gone. The blood clots? Gone. He wanted to see me in December just to be sure but that was news I needed to hear.

After a Costco run, I went to the hospital lobby to meet everyone before our class and learned that Barry had been sent home last Thursday due to his heart issues. They wouldn't let him exercise. I wasn't feeling great, I think from the horrible lunch with mom where I got a bit of food poisoning. Things were just off. I began the workout. Treadmill? Done. Arm bike and wall pulleys? Done. The bike? That was the bad news.

I struggled from the start. Five minutes in, I knew I was not going to be able to finish my normal time on the bike as I was short of breath and profusely sweating. Calling Maddison to check my vitals, she immediately told me to stop. My heart rate was 130. That was very high for me. I had to sit, drink water and wait for it to come down.

Did this have to do with my coronary artery disease? I am thinking that it does. Never happened before.

Today, after food shopping, I will send Dr. K. a note asking if I need to see a cardiologist. Tomorrow, I will be meeting with my favorite nutritionist at dawn followed by the first rheumatology clinic appointment on a different campus.

The fun never ends!

Blood Clots

Mom and I walked our legs off yesterday. Shopping malls are not totally dead. The one we went to was packed, even though it was a Monday morning! She was shocked that each space in the mall had a great tenant plus there were pop ups down the middle of all the large aisles. Things were humming. She loved the Japanese dollar store and bought a few items.

We went to a new fish place for lunch and it was awful. Mom's bowl arrived barely warmed, including the rice. Not a good sign. She complained and they replaced it with a new bowl, also warm. She took it home. Mine was fine, though also warm but it was a shrimp taco. I began to worry later that maybe the shrimp had not been totally cooked, something that would cause a problem for me. I did okay. Rather disappointing.

This morning, I am seeing the retina specialist regarding the blood clots inside of my eye. They are still there. It should be interesting to see what he thinks is the possible cause of this problem. Then, a Costco run before rehab class.

Slower Week

Last week was rough so this week should be a lot easier. I only have three medical appointments! The one I am most anticipating is Thursday's first appointment with the rheumatology clinic to take a look at my finger. Yes, I have been diagnosed with gout on my finger.

Yesterday, I fell asleep after breakfast until around 11 when Natalie awakened me with a message. She was going to be in town to pick up some jewelry and wanted to meet for lunch. Yikes! I had to dress quickly and she arrived with just minutes to spare. I offered to cook Chicken and Cheese Quesadillas using my low carb tortillas since she couldn't stay long. Faster than a restaurant! We had a good chat, a nice lunch and she took off before the tourist traffic was heading back over the pass.

I just can't stay awake. By 6:00, I was asleep again and slept the night away.

Mom and I are together today. She is having computer issues - at 90 years old! - and needs my help. I want to run her up to a mall in the North where I found the discount Japanese store that I think she would like. There are lots of places for lunch there so we will be on an adventure.

No Worries

I am trying not to worry about the coronary artery disease notice on my CT Scan results until I have a conversation with Dr. K. The worst thing we have done is mention it to others. One friend has been in contact to tell me all the tests I will need to take in great detail and new medications for acid reflux as my Prilosec is not any good. It was feeling very overwhelming and very depressing until I realized that I have not even spoken to a doctor yet. I need the facts of my specific case as it relates to my lung disease and future lung transplants. This friend cannot see thorough that lens.

Deep breath.

We really had a lot of fun playing at the famous mansions at an open sessions with other musicians Thursday evening. Last night, we played at a Wine & Cheese store on our Main Street. It was packed! There is a Wine Bar in the bottom half of the store, which was full, and people were dropping in and buying a lot of fun wine related goods. Their food stuffs are amazing and hot sellers as well. We had a good two hours but I have to say I was fading the last half hour. Our lead singer was not present so it was all instrumental. It was fine, people were up dancing and clapping along with the music.

Today is a day off for us. No plans. A recording of the F1 race from SPA (Belgian Grand Prix) is on right now, rather boring race except for the first 30-seconds. It is cloudy and cool outside. We will see where today takes us.

One Last Test Result

...and one last test result: the sonogram of my belly and arteries in my liver:

FINDINGS:

Liver: Decreased, mildly echogenic liver. Homogeneous echotexture. Smooth surface contour. Right hepatic lobe measures 13.1 cm. No suspicious lesions identified.

Spleen: Normal, measuring 11.9 cm.

Gallbladder: Nontender, nondistended. No evidence of cholelithiasis. No gallbladder wall thickening. Bile ducts: Common duct measures 2 mm. No biliary duct dilation.

Kidneys: Right kidney measures 10.7 cm. Left kidney measures 11.4 cm. No hydronephrosis, nephrolithiasis, or suspicious lesions identified.

Pancreas: Obscured

Aorta: Visualized distal aorta unremarkable.

Inferior vena cava: Visualized distal IVC unremarkable.

Main portal vein diameter: 9 mm

 

Doppler findings:

 

Portal veins: Patent, hepatopedal, with normal phasicity.

Hepatic arteries: Visualized hepatic arteries patent, with normal spectral waveforms. Left hepatic artery not seen.

Hepatic veins: Patent, with normal phasicity.

Inferior vena cava: Patent, with normal phasicity.

 

IMPRESSION:

 

1. Subjectively, there is decrease in echogenicity which may suggest some improvement in persistent hepatic steatosis. No sonographic evidence of cirrhosis. No suspicious liver lesions. Normal visualized hepatic vasculature.

 

2. Otherwise unremarkable abdominal ultrasound.

 

My favorite part is just above: Nothing to see here. Great! So, my liver is better and everything else looked good.

After all the tests, the good news is that the aerobika is working so there is no longer air being trapped in my lungs, which could collect bacteria causing bronchitis or pneumonia. The BAD NEWS is that I am going to become good friends with yet another doctor, a cardiologist. Apparently, I have moderate calcification in my heart arteries. Stints in my future.

Michael and I had a very honest conversation yesterday as I wanted him to understand the bigger issues of all of these reports. Everything is stable except the moderate coronary heart disease. It is something that could cause a sudden heart attack. Boom. Done. I told him if that happened, I was aware it was a possibility. He is having a hard time with that as he is ready for the big push for new lungs. It may never get to that. But what we both found interesting is that it explains why I have not been feeling well the past three months. I was expecting a downturn yet all the pulmonary tests were stable. My low blood pressure, exhaustion, increased shortness of breath all point to the problem with my heart. 

My plan? The next appointment with Dr. K. is in two weeks and I am sure she will submit a referral to one of the top cardiologists at the university hospital. That's one of the things I love about her, she sends me to the best doctors.

Tests, Tests and More Tests

Well, that was fun. It was a long day yesterday. Leaving home at 6:15, I was in the lab waiting for my liver blood tests by 7:10 when there was a blip. The person doing the paperwork before the testing called in sick so we were all waiting for the substitute to arrive. She got the process moving quickly and I even got the results of the tests within the hour. The results were excellent.

I walked across the street to the hospital gift shop to get a magazine as I was going to need something to do between appointments. Back to the clinics, I made my way down to the CT Scan area. It was there where I met a woman from the ILD Support Group who was dealing with another major issue other than her lung disease. She was never one to open up but I guess she really needed to talk. I hope I helped her by listening.

The CT Scan was to check the progress of the disease. Here is the report:

FINDINGS:

 

LUNGS:

Unchanged extensive upper lobe predominant and basilar irregular interseptal lobular thickening with traction bronchiectasis and groundglass opacities. Air trapping was not definitely seen on this exam but was visualized on prior exam.

 

PLEURA:

Normal.

 

MEDIASTINUM:

No lymphadenopathy.

 

HEART/GREAT VESSELS:

Normal for age.

 

CORONARY ARTERIES:

Moderate coronary artery calcification.

 

BONES/SOFT TISSUES:

No suspicious lesions.

 

VISIBLE ABDOMEN:

Limited noncontrast evaluation of the upper abdomen is normal.

 

IMPRESSION:

 

1. Unchanged extensive upper lobe predominant and bibasilar irregular interseptal lobular thickening with traction bronchiectasis and groundglass opacities compatible with hypersensitivity pneumonitis.

 

2. No suspicious pulmonary nodules.

 

Coronary artery calcium is present (as described above) and correlates with coronary artery disease. In the absence of known coronary disease, standard clinical evaluation of cardiovascular disease risk may be considered (see references cited above).

 

Yikes! Coronary Heart Disease. It will have to be repaired before I can continue in the Lung Transplant program. But, I feel good about the disappearance of trapped air as I think the Aerobika took care of it!

I had some time so I went by a sitting area, plugged it my phone and was enjoying my magazine when a little lady sat down beside me and asked for my help. She was questioning the sales tax from the gift store. She was from sales tax-free Oregon but I think it was just a way to make contact with a human. It was a rather sad tale. Her son had picked her up from the airport earlier then dropped her off at the hospital, where there were bathrooms and lots of restaurants so he could go to work for the day. Weird. I felt sorry for her but after twenty-minutes, I excused myself for the next test.

Thirteen floors up the elevator to the Pulmonary Function Lab, I chatted with Andrea at the desk, whom I have know for years. The testing was with an experienced tech who made it quick and easy. Here are the results:

Spirometry - Forced Vital Capacity - 1.43 or 47% of predicted

Diffusing Capacity adjusted for hemoglobin - 11.43 or 47% of predicted

It was pretty close to the last tests and not the downturn I was expecting.

LUNCH! I was hungry but it had to be quick. The sonogram of my belly was next!

Back across the street, the sonogram was a lot more work than I remembered. It involved a lot of holding my breath for longer than I could! It was hard! I should have brought my oxygen with me and will so if I ever need another one - helpful hint! This test looked at the arteries inside my liver, my bladder, kidneys, pancreas, stomach...you get the idea. It took just over an hour for the test and have not received the results yet.

I arrived home at 3:00 totally exhausted. Promptly falling asleep on the couch at 6:00, I actually climbing into bed at 7:00. Today is going to be a challenge. Jeannie is not going to rehab so neither am I! There is an outside gig with the Irish Fiddling group from 6-8 this evening at a fabulous mansion know for their gardens tucked away in an area known for horses. It is opened to the public and they are offering this special treat of evening music during the summer. After running some errands this morning, I am planning a nap before we drive over the pass at 4:30. It is going to be a long day since I have not fully recovered from yesterday.