Living Well with a Bad Diagnosis - Lung Disease

Wednesday, November 30, 2016

Back to the Other Rehab

I have not been going to the other rehab. Mom has had a lot of early morning doctor appointments and I really haven't been feeling very well. At rehab class yesterday, Sara (RN) gave me the stink eye and a gentle nudge so I am heading over the pass early this morning to return to my former routine. I also told her I would see her there on Friday morning.

Sara also told me that my friends at the other rehab were really worried about me and asked her if I was okay. That was very sweet! So, this morning I am probably going to talk a lot more than my workout. It will be good to be back.

After the workout, I am running down the Peninsula to Home Goods to see if they have red napkins and some Christmas decorations. Michael and I will be also searching for STAX and other goodies tomorrow after his doctor's appointment.

My poor gardens are a mess. I quickly walk by the front yard and try not to look through the back windows. My goal Saturday is to cut the grass and begin to trim the plants for the holiday. The windows are also a mess so I will use my handy Windex Wand and, within minutes, have shining clean windows for a week or so. No rain predicted for a few days.

At the Irish Fiddling rehearsal last night, we practiced several Christmas songs and one had a special Irish twist. One person was a little freaked out, I just winged it and it was simple. No problem. The rest of the group was a bit frustrated by this person's constant freakout if the chords are exactly the way the music is written. Every stroke of a chord is needed in his music. If a chord is held for 4 measures and they are strumming it twice a measure, he has to write in each stroke of that chord. At a break, the head singer turned around to me and said, "I so love playing with you. You just do it." I said, "I'll tell you my secret. I'm old and have lots of experience. I can wing anything." He laughed and it lightened the mood.

It's Beethoven tonight. The orchestra has seven more rehearsal before the February concert. I still don't have a lot of it under my hand. I love when I get to the point where I don't need to count or even think but my fingers just go to the right notes. I can begin to play musically and not just playing the notes. That is where the magic happens. That is when I walk away from a concert feeling exhilarated. That is the goal. Not there yet.

Tuesday, November 29, 2016

Drugs vs Transplants

I haven't been to rehab class in over two weeks and today is the day to face the machines again. Treadmill! Bike! Wall weights! All my friends and waiting to put me through the paces. I'll bet I will feel full of energy after the class.

Before the class, I need to drop some of mom's Christmas decorations off at her home. While over the pass early, I might even begin to look for my special Christmas decorations at Michael's Crafts. It is nice to have time to wander and ponder. I may also pay a couple of bills while I am in the area.

I have an appointment with Dr. K. next week. After she does her business, I am going to ask her opinion about whether I should participate in the January study of the new anti-fibrotic drugs or let myself to continue my decline towards lung transplants. The issue is, if the drugs work, I make max out age-wise for transplants. Or, as one grows older, other issues may arise, which would then preclude me from transplants. She has so much experience with transplants and really understands how my body has been reacting to all the drugs through the years. Can my body handle the massive gastrointestinal problems for the first three months of these new drugs? Does she think these new drugs will work on my specific disease?

It should be an interesting conversation.

Monday, November 28, 2016

Christmas Tree

It's a beauty! All 7.5' of fake greenery and colored lights! We also got a great deal! What was hilarious was watching Michael trying to get all 7.5' of boxed Christmas tree into our old 1997 Mercury Tracer! At one point, I thought we might have to return it as we just couldn't get it completely in the car. Then, I realized it was no bigger than my string bass so we set the seats for that and VOILA! It worked. I had to ride in the back seat and look out for cars in Michael's now huge blind spot! It was an adventure! We will decorate the house next weekend. Expect photos!

The rest of the day was football and researching recipes and decorating tips for our Norwegian Christmas this year. I am learning so much. Chip and Betty's box filled with handmade decorations should arrive today so I am going to base my linens on the Norwegian flag colors. I also found three different recipes for cocktails using Aquavit, which Chip also included in the box.

I have a beautiful full-sized grand piano in the living room, which my sister always plays during our annual sing-along. While reading some website yesterday, I found a Norwegian rendition of the 20 Days of Christmas. Yes, 20 days not just 12 days. I will be printing up song sheets!

This week, I want to find some lights and garlands to drape around the family room sliders. We are moving where we place both Christmas trees and decorating other areas, including the fireplace. Usually, we just have poinsettias but this year, I want lights! Lights everywhere!

We are also trying to find Duraflame STAX to burn in the fireplace on Christmas Day. It is the only firewood my lungs like. No odor. They are hard to find but, if I have to, I can order them from our local Ace Hardware.

It is a screaming Monday. Mom and I have to drive miles on a busy, wet freeway north to pick up mom's new reading glasses at Costco then scream south on the same horrible, wet, stopped freeway to her eye appointment within an hour of each other. We may not make it! A bit nervous. She is having the macular degeneration shot in her eye and we always go to lunch afterwards. It makes her forget having the shot. Later this evening, I have a rehearsal with my Irish Fiddling group. A full day.

Sunday, November 27, 2016

Fake Tree

It rained yesterday but it poured last night and more is expected today and tomorrow. We have been in a drought and I can feel my garden just smiling with each drop.

It felt great to work in my kitchen yesterday, making a breakfast quiche and a casserole for dinner. The house smelled like home. With that work behind me, I can play with Michael today. We are going to try to find a new fake Christmas tree today. Ours is fifteen-years old, several of the lights don't work anymore and it is just time. Michael wants one with colored, dancing lights. We'll see.

Fake trees. I was shocked when Dr. K. told me to never have a real Christmas tree again because of the possible mold or fungus that I would be bringing into our breathing space. Both are the causes of my disease, HP. The first year was so hard as I missed the "smell" of Christmas. I must admit that I do inhale as we walk by live Christmas trees while out in the world.

We are also going to make our lists to prepare for the holiday today, which I will try to attack each day leading up to Christmas. The goal is to do just a bit everyday so I do not get sick or overtired.

It should be a fun day of just the two of us hanging out together. My favorite kind of day.

Saturday, November 26, 2016

Lung Transplant Holding Tank

We had a lovely Thanksgiving with family. Lots of conversations going at all times, mom was happy to be with her oldest daughter and her granddaughter and all was right with the world. Yesterday, we stuck our nose out into that world just to buy groceries and a bit of lunch. There was a nap involved, too!

Ron joined my pulmonary rehab class after his program at another hospital shut down less than 6-months after his lung transplants. We have become friends and he has shared so much information with me about the entire process of lung transplants. He also is nice enough to answer all my questions. We are even on Facebook together. He has Scleroderma. Five years ago, my university hospital would never have approved a transplant for anyone who was not in excellent health, expect for the lung disease. Secondary disease? Forget it. Times have changed. He has celebrated his first year with new lungs and is flying through all the recovery and maintenance processes. 

He sent this article to me today. It is about a new process of being able to keep lungs outside the donor's body for more time, thus more lungs are available for transplants. Ex-vivo Lung Perfusion. It is interesting. I had heard about it.

I also discovered that in California, there is no one dying waiting for lungs. They are available thanks to the education and passion of a male nurse at another university hospital. Years ago, he discovered that usable lungs were not being transplanted as it was not a priority. He put in protocols, taught other hospitals throughout the state how to process them properly and now they are available.

Years ago, I was at a seminar presented by two university hospitals and the head of one's transplant program told this story. A woman with familial IPF was transplanted. Three years later, her doctor received a phone call from her asking for help regarding her brother, also with IPF. He was in a hospital in another state failing while waiting a long time for lungs. The doctor said they would accept him, he was flown in and had lungs within a couple of days. It is sad that other state do not have such availability. If you are in another state which has few lungs available, please share this story with your doctor and encourage them to contact any university hospital in California for details.

Thursday, November 24, 2016


Happy Thanksgiving! I hope you are surrounded and emotionally supported by loving family. I am always so grateful that I have lived years knowing that I had a fatal disease. It gave me time to say everything I needed to say to those I love. I've had years to show them my love and I have tried to be grateful for every single day.

Mom, Michael and I will make the two-hour drive to my sister's house this morning. I am so looking forward to chatting with her daughter and fiancé about their April wedding plans. Michael and I will phone our son for a quick chat. He and a group of friends get together and all the men cook. I love that.

In other news: The dermatologist's office phoned last evening to give me the results of the biopsies taken from my face almost a week ago. Benign! A beautiful word!

So much to be grateful for! Pause a moment in the chaos and smile. This is life. Grateful we are still here!

Wednesday, November 23, 2016

A Cocktail Kind of Day

I spent the day in a car for hours then in another car and lunch with four 88-year old women. Now, I am not a drinker. We bought a house just after I turned 21-years old so we didn't have a lot of extra money to hang out in bars. With all the drugs I take, I have been really pleased that my liver has been strong enough to handle the drugs probably because I haven't had many cocktails since becoming drinking age.

On my way home late yesterday afternoon, I phoned Michael and asked him to make me a small, light cocktail. He was stunned! It was that kind of day!

I just can't go into all the details but even mom was so angry that I don't think we will be going for lunch again for a while. Her friend Grace is dealing with dementia or Alzheimer's and was mean and yelling at everyone. There were car issues but in the end, we had to drive her to a doctor's appointment after we dropped everyone else off at their homes. She told us this just before she kept us waiting in her driveway for 20-minutes as she didn't want to arrive too early. Then, she didn't know how to get to the clinic so I pulled out my iPhone. Got it. I was following it while she was yelling at me to put it away. As I was going the speed limit of 40MPH, she was screaming that I had to slow down because we were going to be in an accident. Did I mention that it was miles out of our way?

We found the place, dropped her off then worked our way back to the freeway and home around 3:00. Mom had told Grace when she set the lunch date that we had to leave by 2:00 to make it home before the wild evening traffic. I didn't get home until after 5:00, thus the cocktail.

That was just one event from the day. There were a few more. I just wanted to go home.

Today should be a total opposite day. I am meeting Natalie and the kids for lunch. Joyous!

Monday, November 21, 2016

Thanksgiving Week

Nothing like old friends. No explanations. No need to explain your kids or parents or relationships. They have met and watched and seen it all through the years. Dinner with Sue and Jim last night was delightful. We talked about everything. They had invited their children back home to save money to buy their own houses. All their bedrooms are full again. It is a lot of fun, everyone is on track and all are moving forward, even Sue. She is going to retire at the end of this school year and they have lots of plans to travel. They look great and still so involved in life.

Mom and I will be together today. We have no plans and sometimes that is when we have the most fun. Later today, I am finally getting my hair cut and colored for the holiday. My sister phoned to ask that we arrive between 1-1:30 on Turkey Day and, by the way, we are not having turkey. Okay. Prime Rib. We will be bringing the wine...I also will be bringing my new portable oxygen system. On the way home, I know I will be asleep in the backseat of the car and will need the supplemental oxygen this year.

The big day of driving for me will be tomorrow when mom and I visit my dad's crypt and change his flowers. Then, we will meet mom's friends for a birthday lunch for one of her friend's. It's good for mom's soul to spend some time with her dear friends. But, it is a long day for me. A long drive. Lots of traffic and some bad weather this trip. Hopefully, I will recover on Wednesday and be rested and ready to celebrate the holiday with my family on Thursday.

Sunday, November 20, 2016

Keep Colds Away!

It is just dawn, there is a slight drizzle of rain, the outside ambient lights are on and the heater inside the house is running. All feels right with the world. It has been a quiet weekend before the craziness of a holiday begins.

For those of us with on immunosuppressant therapy, this is a scary time of year.

My sister phoned last night to confirmed the time they want us to arrive at their home for Thanksgiving. She also mentioned that my niece's fiancée's sister would also be joining us. Oh, and maybe her teenaged children, too. After we said our goodbyes, it began to worry me that they may not know that I can't be around anyone with a cold. Anyone getting a cold. Anyone exposed to the flu. Did my sister mention that fact to them? Did she ask if they were well?

In the beginning of my disease, I always asked if everyone was healthy and I even stayed home one year when someone had a cold. I didn't mind. Really. I would rather do that than get pneumonia or worse! Since no one but relatives have joined us for years, I didn't need to even think about mentioning it. So, today I will message her and ask her to let them know that I can't be around anyone  who has been recently exposed to someone with a cold or flu or if they think they may be coming down with something.

Tonight, we are going to meet our friends Sue and Jim for a simple dinner together. Sue is a teacher who is in her final year of teaching before retirement. We have known them since William was in kindergarten with their son. Dear friends. Life got busy and we would see them on and off through the years. I have a feeling we will be seeing more of them as they settle into retirement.

Friday, November 18, 2016

Quiet Weekend

We left the house at 8:30AM, the traffic was a real challenge as we made our way deep into the city on the far university campus for my dermatology appointment yesterday. On a good day, it takes about 45-minutes. Yesterday, it was an hour and ten minutes by the time we arrived and parked. Thankfully, I always give myself two hours, just in case. The doctor was already running almost an hour late and when she arrived, she went right for my forehead. "How long has that been there?" I had never noticed two small red pimple-like specks. After looking at over a dozen other spots we circled in the morning, she burned then off. She also asked that if two of them didn't go completely away, she wanted to be contacted.

Biopsies were taken of the spots near my eyebrow and right in the middle of my forehead. She said they came out well and she didn't suspect cancer but she was also not 100% sure. Within a week, we will get the lab report. In the meantime, I have two bandages on my face through Thanksgiving! They must be changed daily.

We made our way across town to the Filson store, Michael spent his birthday money on a fantastic hoodie then we drove back and even a bit further to the second university campus for our board meeting. We had a couple of hours to kill so we sat in the library, looked at the glorious views and whispered to each other. The meeting was really interesting and I can't blog about it! We got home around 7:30 totally spent. Exhausted. I fell into bed and was out like a light.

Mom and I have lots of plans for today. Our dance card it full! After her financial appointment here in town, we will head out to dinner before driving her home later in the evening.

My stormy weekend plans? NOTHING. I am going to rest and regroup to repair for Thanksgiving.

Thursday, November 17, 2016


Yesterday, Michael dropped in to the coffee shop where our dear old friend still works at 70-years of age. Her daughter found us on Facebook last weekend and he told her that he would drop in this week. She was thrilled and they sat and relived many happy memories. Her life has been difficult. She was a kind person married to an alcoholic. She constantly tried to help and make life as easy as possible to a point that she hoped he wouldn't drink his beer. Retirement sent him into a downward spiral. Long story short is he now lives in another state in a convalescent home after having a heart attack and finding cirrhosis of the liver. He is Michael's age. After Thanksgiving, I am going to drop in to see her before my rehab class. She really wants to see me and we girls will talk about stuff a bit differently than the guys. I plan to do a lot of listening.

I was dying through the orchestra rehearsal last night. It was Beethoven. It was hard. There are only seven more rehearsals and I was sight reading a movement last night. Not feeling very confident! My brain hurt and I was physically tired. Michael hauled my bass into the house while I fell into bed and don't remember anything else.

We are moving quickly this morning as we are preparing the house for the housekeepers and then out the door to the city. My dermatology appointment is very deep in the city and traffic will be a challenge. But, I am not driving! Nice! It should be a nice day together.

Wednesday, November 16, 2016

Plans Changed

Within minutes of posting yesterday, all plans changed. No shopping. No meeting Michael for lunch. Instead, I talked him into going with me to Thursday's dermatology appointment, shopping at the new Filson store with his birthday money then we will drive back to the university campus for our late afternoon board meeting. Bingo!

So, now I had the day free. Rain was due by noon so I hurried into the gardens by 9AM, cut the grass and trimmed the back yard. The hydrangeas have been trimmed back. I finished near noon, came into the house, cleaned up and walked back to the front of the house to make lunch when I noticed it was raining! I had finished within a few minutes before the rains began!

Today's hair appointment was postponed to Monday so I have nothing on the calendar until orchestra rehearsal tonight. I have a list of things to do plus I have to get ready for the appointment tomorrow. Since I take azothioprine, I am not protected from the sun and must be check for pre-cancer spots every year. I have well over a dozen suspicious ones that need to be "frozen." In the morning, Michael will take a pen and circle the ones I can't reach and I will mark the rest of them. I don't want to forget to point any out to the doctor.

There is one of my left thumb that is concerning. It showed up two years ago, just after the yearly appointment then it was burned off last year. It is not really gone. I have a feeling the doctor is going to want to remove it for testing. Left thumb. That is the anchor thumb that works so hard finding the notes on the finger board of my string bass. If surgery is needed, I may not play for awhile. That's not good!

At Sunday's concert, the orchestra's flute player was wearing the coolest glasses. She told me she bought them online, they were very inexpensive and fun. Yesterday, I ordered a pair. They were so inexpensive that if they are awful, I'll just wear them around the house.

The sun is shining! I have the day ahead relatively free! It should be fun.

Tuesday, November 15, 2016


I have a hot date for lunch today. Michael and I are meeting for lunch at Nordstrom before he spends his birthday money from my mom at Macy's. He needs new Levi's, I have coupons so it should be fun. Today's scheduled rehearsal with my Irish Fiddling group was cancelled as Leslie has a nasty cold. Nope, I don't want to practice in her house!

Sleeping was difficult last night. Suddenly, I found myself awake at midnight and I just couldn't get back to sleep. I thought a change of venue would help and went out to the couch in the living room. There I was. Looking around. Changing channels. Sighing. No sleep. Finally, somewhere around 3:30, I fell asleep until 6AM. I'm going to be goofy from lack of sleep later today!

We have Christmas at our house this year and I have made a decision that the featured menu will be Norwegian foods. Mom is half Norwegian but her mom was Irish so she never experienced Norwegian food. She is so excited. I am doing research now, think I have some great ideas but will be pulling it all together soon. William, who has been to Norway many times, keeps telling me about Liver Paste and Shrimp Paste and sausages.

The other holiday, Thanksgiving, will be at my sister's house. Mom is making her famous cranberries and I need to contact Lee to learn what she wants me to bring. Pumpkin Rolls this year? Maybe. I have been having fun making them lately. So good with coffee.

I just can't believe that the year is almost over. A moment ago it was April. Suddenly, summer was gone, the smell in the air changed and it was Fall. Where did the year go?

Monday, November 14, 2016

It's a Monday

I did nothing yesterday. With only the best intentions, I did nothing. It was rather telling that last night, I slept the entire night without waking for the first time in weeks. I was exhausted and needed to just take it easy.

Today, mom has a dentist appointment in my town early this morning. It is predawn here and I have to be showered and out the door by 7:30AM. Early. I have a plan that after her appointment, we will drive up the coast so she can see the ocean and head to a northern shopping mall. Mom is a major shopper but only buys items on sale or with coupons or both!

We spoke with the dear old friend yesterday. Her daughter found me on Facebook, connected with us and bingo. Michael is going to drop in at her work this week. She is 70-years old and still a waitress doing the 5AM shift three days a week. Amazing. It was most interesting to hear that her son had a liver transplant several years ago. He had immune issues as a child and his liver finally failed. I am heartened to hear any success stories about organ transplants! She had a massive stroke with many side effects but had no rehab. Instead, she went back to work where she got her right arm to work again and she had to fight to regain her speech so she could take orders from her customers. One tough cookie.

For so many years, we never really talked with others about my health. "How is your wife?" they would ask Michael. "Doing well!" Fine. Good. People don't really want to hear the details. Lately, when asked how I am doing, I have been replying, "We began the lung transplant process last week." I have been surprised how people are so stunned. I guess we didn't lay any groundwork to this next phase and it is rather shocking to people. It is also my opportunity to educate people about the process, which I try to do in just a few sentences.

Sunday, November 13, 2016

A Blast from the Past

I got a notice on Facebook from a person from our past. Just before we were married, we rented a house in a nearby town and a nice couple moved in across the street. They were older than us and the woman brought two kids with her into her second marriage. We all became friends, hung out together, made Saturday night dinners we shared and all was well until we moved to our current town. She did not like the road along the ocean as it was too scary. We never saw them here but, for a few years, we would drop in on occasion. It has been years. The daughter was with her mom the other day and found me on Facebook. She is now grown and a grandmother (!) and she shared that her mom and step-dad had recently separated. Memories! We will be phoning her mom this morning to get caught up. Thank you, Facebook!

It was a great concert yesterday afternoon. Every seat was filled, which surprised me greatly. It was a gorgeous day, tourist traffic was horrendous and I expected most people would be elsewhere. There were people there I hadn't seen in years. Our group ended the program and I didn't get home until 5:30PM. It was a long day but I so enjoyed listening to four other small ensembles perform at an extremely high level. Just filled my soul.

Michael greeted me at the door with British Don's Torchon of Foie Gras he made for my birthday. I think it was pure fat. Delicious and just melted in my mouth. Then, we had leftovers of Thai Chicken Lettuce Wraps with a homemade peanut sauce. I must admit I was in bed by 7:30 and asleep within minutes.

My goal today is to cut back the hydrangeas, the growth coming over our back fence and the Meyer's lemon bush. I haven't worked in the gardens in several weeks as Michael has been cutting the grass and watering the pots for me. My fingers are itching to get back to work.

Next week: lots of rehearsals (3), a doctor appointment (dermatology), a Board Meeting at my university hospital (1), a dentist appointment in town for mom (1) and a late Friday financial appointment here in town also for mom. Instead of fighting Friday night traffic, we will stay here on the coast, take mom to dinner at a cool place just up the street and drive her home later. She doesn't know our plans yet.

Friday, November 11, 2016

Keep Exercising

I swear, it is all about exercising. My numbers have been down, oxygen stats stunk and I was feeling awful. Ever since the rehab class on Tuesday, my breathing is better, I am feeling more energetic and my numbers in rehab yesterday were huge! Treadmill - 95%. Bike - 96%! (On 2 liters of O2.)

From rehab to Trader Joe's to buy groceries for the week, I still had energy! Michael haul everything into the house for me and surprised me by doing all the yard work AND even vacuumed the rugs in the family and living rooms. Amazing man. What a gift.

I didn't even pause before making Michael's "Eggs a Different Way" for the next several breakfasts and the Pumpkin Rolls for tonight's party at Lisa and Mike's across the street. By the time it was all done and the kitchen was cleaned up, I was exhausted. It took time to catch my breath and I fell into bed at 8:00.

Today, mom and I have a toe nail appointment here in town. We always have fish tacos afterwards and show off our new, fancy polish to the staff. They know us well!

My sister's family is cooking Thanksgiving this year. We will have a bit of a drive but it should be fun. Since my sister retired last month, they have been purging and cleaning and organizing. They are having fun and adjusting well to this new phase of life!

Thursday, November 10, 2016

Birthday Wrap-up

I am looking forward to working out in the rehab class today. After Tuesdays class, I felt so much better, my energy was up and my breathing was so much better. After the class, I will do some food shopping and make the most delicious Pumpkin Rolls to take with us to Lisa and Mike's early Thanksgiving dinner on Friday night. About 22 people will be there. Oh my. We don't want to stay for dinner as I don't do well in crowds - always worried someone is sick or getting sick. We are planning to enjoy some appetizers and conversations before walking home.

We had a lovely day together for my birthday yesterday. Nothing fancy or special to eat as it was all about a beautiful drive along the ocean and spending time together. And we had fun at the casino. We only stayed for a couple of hours then headed back home. The weather was warm and we didn't hit any traffic. I was in bed by 7PM.

In scary news, William texted last night that he was very close to major shootings in Seattle but wanted to let us know he was okay. I was already asleep but when I saw the shootings on the news this mornings, I was concerned but happy when I checked my phone. Deep breath. No matter how old they get, I guess we parents still worry.

Wednesday, November 9, 2016

Another One Down

It's my birthday today and it is still surprising to me that I am alive to celebrate it. So many years ago, I was told that I had just a few years to live. Birthdays were difficult but Christmas' were even harder. Was this my last Christmas? It wasn't until we celebrated our 40th Anniversary and my 60th birthday three years ago that i began to rejoice instead of dread these markers.

We are jumping in the new/old car for a nice drive up through Marin County to a fancy casino. We probably won't stay too long as it is the drive that we cherish. Later, we'll have a light dinner and I am sure I will be talking on the phone a lot today.

William sent the most beautiful arrangement of flowers with the sweetest note attached. White hydrangeas and tulips. Stunning. He is going to phone later today.

A quiet birthday. A celebration of survival.

Tuesday, November 8, 2016


Yesterday, Mom and I ran errands and I bought a new purse at DSW for my birthday. It's tomorrow. We talked about what we should do to celebrate it and, since I didn't want a big fancy dinner, Michael came up with a trip to a huge Indian casino north of us. My mom will be very jealous. It is well over an hour away and Michael has never been there. I love it as it feels like Las Vegas and the inside air is amazing, even if someone is smoking nearby, it clears quickly.

It will be a nice drive up together and a fun day gambling.

Last night, the dress rehearsal for the fund-raising concert on Saturday went really well. It sounded great and I so enjoyed playing the piece by Elgar. While I was there, the Irish Fiddling group was having their rehearsal. The good news is that I have no other rehearsals all week!

I'm still not feeling 100% but I hope working out at the rehab class today will get everything moving. It will be good to see Sherman.

Monday, November 7, 2016

Feeling Better

I am feeling so much better after taking the entire weekend off. Thursday's fun going through the pre-transplant testing and all of last week really wiped me out. Michael has been so thoughtful and kind taking such good care of me. But today, my life is back to my regular schedule.

This evening is my only rehearsal for the week. It is a dress rehearsal for the fund-raising concert where all contributions are awarded as scholarships to music student. I am happy to be a part of the concert this Sunday afternoon.

Mom and I have nothing on the schedule for today, except for lunch. It should be fun just hanging out and chatting.

Last Friday, I sent an email to William with all the details about Thursday's adventure to give him time to absorb the information, instead of just throwing it at him on the phone. He phoned on Sunday wanting more information and details, which was great. I think I was able to give him all the facts with a positive spin moving forward. I know he worries. We are so looking forward to seeing him at Christmas.

Michael's shoulder is better due to icing it down every couple of hours. He is trying not to use it or pick up anything of any weight. Now, fully recovered from our colds, we are going to begin our walks in the morning again this week. It's good for both us.

Saturday, November 5, 2016

Lung Transplant Testing, Part 2

The Echocardiogram was next up on the list of appointments. The tech had a charming Irish lilt in her voice and fun to work with. I have had four echocardiograms throughout the years, all looking for Pulmonary Hypertension. High pressure in the lungs. I don't want it, thanks.

Knowing the drill helped move the test along quickly - gown for easy access to the heart, gel for the sonogram, lying on the left side, holding my breath for short periods. I watched the screen as she captured every working area of my heart including the valves. At one point, she called in an RN to put an IV in my arm (third poke of the morning) and saline was plunged into the vein while the tech took photos of a ton of tiny bubbles suddenly appearing then moving through my heart. We waited for them all to clear then did it again. We all watched it work through the heart again then repeated it one final time. It was rather fascinating to watch but, I was beginning to get nervous. My appointment for the pulmonary function tests was within minutes and I needed to be across the street in the main hospital and all the way up to the 13th floor. I was going to be late! The IV was removed, the gel was wiped off, clothes were quickly pulled back on and I flew out the door.

Down five floors, across the busy street and into the hospital. The main elevators are incredibly slow but somehow, magic happened. The doors opened and I was alone. It flew all the way to the 13th floor without stopping. Very, very rare. Hello Pulmonary Function Lab!

I have known the head of the lab since 2004. Lisa wanted to do my tests, which I thought was very nice as we work well together. It began with measuring my height and weight then the two tests began. Spirometry and Diffusion. My Forced Vital Capacity improved from 47% to 50%! Wow. What a surprise. But, it was my DLCO that was the numeral proof that I am on a downhill path. For the first time, I was in the 40%. It was only 41% of expected and once that number hits the 30s, I will be needing supplemental oxygen 24/7. It will probably happen sooner rather than later.

After these two tests, Lisa did an arterial punch to get my blood gas numbers. She focused where the pulse was in my wrist and plunged the needle in. (My fourth poke of the morning.) It was very, very painful. After several deep breaths, it was time for the 6-minute walk. With oxygen on 2 liters and the saturation meter on my forehead, we walked the hallway as fast as possible for 6 minutes. I was totally exhausted afterwords. As I sat recovering, I noticed that I was now late for the appointment with the transplant doctor. It was then that Lisa told me that now that I was in the pre-transplant group, the appointment times are very loose as they know my day was jammed with appointments. Not to worry.

Back down the 13 floors - we stopped on every floor - and I walked back across the street and up to the 5th floor again. While waiting in the lobby of the clinic, the head of the pre-transplant program came out to say hello and we had a good chat. We have bumped into each other near my mom's house and I have met her children. She has challenging children. Very bright. We usually talk kids. Finally, I was called in by the nurse. It turned out he was one of my favorite in the Chest Faculty Clinic and had been moved to transplants. We hugged and he said, "I am so surprised to see you here!" We talked while he took my vitals then I waited for the doctor.

She walked through the door and we both said, "I know you." I realized that she was the doctor I saw at our first, very scary visit to the transplant clinic about seven years ago. She had time so she reviewed my file, everything from medications to surgeries to family history. She then looked at all the test results of the day and I was THRILLED to learn that every function of my heart was NORMAL. All the years of working out six days a week had paid off. She also told me that my blood type - A - was the easiest to match with a donor.

So, it was about 1:30 when I left the clinic, exhausted, starving and now having to drive home. I stopped along the way to get a bit of lunch to eat in the car as I continued south. Michael was waiting for me, we both napped for an hour before climbing into nice clothes for dinner out with our neighbors Lisa and Mike. It actually was lovely to be out and well fed and normal conversation after such a grueling day. I fell into bed and don't remember much until I had to be up at 5:30 to get mom to her final PT appointment.

I am taking it easy today.

Friday, November 4, 2016

Lung Transplant Testing, Part 1

This is going to have to be a two-part blog. Mom has an early morning PT appointment and I don't have a lot of time. So much happened yesterday that it is going to take two blogs to get it all in.

I was so nervous about the testing and getting to the university hospital in the city on time that I woke up at 2:30AM and couldn't get back to sleep. Finally, at 3:30AM, we both threw in the towel and we got up. Michael's shoulder had been bothering him (doing so much better after icing and some balm) so he was not able to sleep well either. I had everything ready to go so all I had to do was to get dressed and kiss Michael goodbye as I got into the car at 5:50AM.

Great drive, little traffic, easy parking and I arrived to the lab with my large jug of urine and my stood sample 10-minutes before they handed out numbers for the blood draw. I saw so many people I have known through the years as they walked by on their way to their clinics. Former and new doctors, clinic staff and everyone waved to me. Even Dr. K. said a hello!

I waited for the lab registration, got my blood draw number then waited as those employees to arrived. One of them was my very favorite. She was the one from Africa, we began our friendship when she told me she comes to our little town to buy goat meat long ago and I always hope I get her. My number was finally called and she was the one to do my blood draw! We hugged! We laughed and it was marvelous to do that so early in the morning. Suddenly, it all changed.

Her computer would not print out the labels to be put on the vials. She said I might have to go up to the clinic, get them to enter the orders again, I would have to begin the process all over again, the waiting room was packed at this point and I was worried that I was going to miss my echocardiogram appointment plus I had not eaten since the testing required fasting. OH NO!!! I worried. She took off to try to print them from the computer in the room next to ours. Minutes later, she arrived with a long strip of labels.

It was then that I watched as she began to gather the vials that I realized how big this was. I showed her my secret vein, she began and filled all but three vials from that vein. She was shocked. It was a REALLY good vein. Did I mention she FILLED 40 VIALS! Yes, forty.

We hugged goodbye, I had 45-minutes to run across the street to the cafeteria to get a light breakfast and COFFEE and to take my morning medication before running back across the street and up to the Transplant Clinic for my Echocardiogram appointment.

And that is where the story will continue tomorrow. Echocardiogram! Transplant Coordinator! PFTs! Arterial Punch! 6-Minute Walk! So much to share with you.

Wednesday, November 2, 2016

Begin Testing for Lung Transplants

My fun project for today - to collect 24-hours of urine. Yes, lots of fun. I am staying home all day so I don't miss a drop. Even more strange is that is has to be stored in the refrigerator. Guess what will be totally cleaned on Thursday afternoon!

While home today, I will be paying some bills, writing a letter, preparing the house for the housekeepers in the morning, cutting the grass and writing a list of things to do before I leave the house at 6AM tomorrow when the long drive into the city begins. Here is my schedule for the morning:

7:30 -  I need to be in the lab to drop off my "samples" and have a fasting blood test.
I have been instructed to eat a light meal after the blood test.
9:00 - Echocardiogram with Bubble Study
10:00 - Spirometry with Diffusing Capacity, Arterial Blood Gas, & 6-Minute Walk
11:45 - Pre-Lung Transplant Follow Up with Pulmonologist

I will crawl home and probably sleep. Our lovely neighbors, Lisa and Mike have invited us to an early dinner to our favorite dive in the little town down the coast. That is going to be my mental Zen place for the day as I am going through all the tests. Something to look forward to.

Since I have such a limited time to get out of here in the morning, I won't blog tomorrow but will let you know how it all went. It was tough in rehab class yesterday so I am expecting my numbers to be below my norms. A bit nervous about it all but, apparently, they will have me jump through these hoops every six months so I am sure it will become just another routine.

Tuesday, November 1, 2016

Halloween Family

Natalie's family arrived on time and we had an hour together before they headed out to trick-or-treat. They were caught in a bit of rain but, with umbrellas, that didn't deter them. It was so marvelous to spend time with the kids and all their energy. The food was a hit, Oliver ate five of the hot dogs and we even got some fruit into him. Winnie had a private gymnastic lesson before they arrived so she was tired by the end of the day.

Approximately 40 kids came to our door and, at one point while we were talking with their parents, I realized that Winnie and Oliver had heard the knock on the door and was handing out candy. It was fun to watch the interactions between little kids to little kids.

Natalie's husband's new job is right on the cusp of new technology in the Virtual Reality world. So very relevant. He is loving every moment. Natalie finally has help teaching her music program. She is finding it so refreshing to have another teacher pulling half the load. She can breathe this year.

It was also so sweet when "Dad" arrived at the door from work, both kids went running to him. Natalie stood and waited. After he greeted the kids, he walked to her and gave her a huge hug and kiss. It was so great to see. This is a loving, working family.

As they were climbing into their cars to head home filled with candy and Halloween happiness, Winnie yelled out to me standing on the front porch, "Love you!!!" My heart just filled up. I am one lucky person.