Living Well with a Bad Diagnosis - Lung Disease

Saturday, August 31, 2013

Still Coughing

Tough night. Feeling awful. I woke myself up by coughing so much that I moved to the reclining chair in the family room, which immediately stopped it. Slept sitting up all night! Thankfully, it continues to be in my throat and hasn't moved south into my lungs. I am going to move slowly this morning, do some banking then see if I feel strong enough to cut and blow and water the garden. A quick job. I promise. I know that we will be in the garden most of the day tomorrow so I want it to look nice....Our Anniversary.

I am not happy that I will be sick on our 40th. We had planned to go to Las Vegas until I realized that I didn't really want to be with a ton of people on Labor Day weekend in 100+ heat. Plan B was to stay home, hunt and gather what we wanted to eat and celebrate with champagne at home. A little sun would be a bonus.

When I was diagnosed in January of 2005, my goal was to live along enough to celebrate our 40th Anniversary. In my heart, I really didn't think I would make it but I thought I could die happy if we hit that goal. If I had a snapshot of our lives today, I would have been shocked, relieved, so less anxious about the future. I am functioning. I am only using supplemental oxygen during exertion and sleeping. We can travel. We can live our lives. My next goal? Our 50th Anniversary and somehow it does not seem so impossible.

But with this cold, it was hard to get through the day yesterday and I am so hoping not to share this bug with my mom. We were in a car together and I insisted on wiping the steering wheel and anything else I touched in her car with a disinfectant. Her eye appointment went well, except we showed up over an hour early....he took us anyway. After lunch at Mimi's, we did a Target run. Dangerous but I got out of there under $100.00! A rare event!

I just wanted to be home. By the time I began the 25 minute jaunt over the pass, I was almost too weak to drive. Once home, I found myself in the recliner, watching the wind play in the garden and drifted in and out of sleep. A nap with sunshine and a cool breeze entertaining me. I was able to make dinner and function until bedtime. Barely. This thing has taken a lot out of me. I would love for it to go away, please.

Friday, August 30, 2013

Liver Biopsy on Hold


I am feeling horrible. The cold has come to stay but is still settled in my throat. During the day, I feel okay but in the morning, the coughing to clear it from the night is not very attractive! Hopefully, it will just go away and decide not to visit my chest.

I wore my Ralph Lauren dress to give me confidence as I prepared to resist the upcoming liver biopsy at the appointment in the city yesterday. Dr. H. was lovely, we had a nice chat then the conversation began. We first reviewed a few tests. The sonogram revealed that my pancreas and liver were no longer enlarged. YES! But, my liver was still considered a "fatty liver." We reviewed a test that looked for fibrosis in the liver under the guise of a Hepatitis C blood test for people with Hep C (which I do not have). It showed that I had level 3 but he reminded me that this was just a guide to see if any fibrosis was present and they are not sure how reliable it is with someone with just a fatty liver. He also ordered the same test again in six months so these numbers can be compared. 

After hearing my concerns about the transjugular biopsy, he agreed to an assisted needle biopsy instead but also heard and agreed that there is no hurry. Why is he still so concerned? Apparently, if the fatty liver becomes fibrotic, it can also develop cancer, which he said is very treatable if caught early. It needs to be watched. He also said that since the recent discoveries of the deeper issues of a fatty liver, the industry is working on medications to stop or at least slow the fibrosis. 

By the way, all my numbers were fantastic: liver function, saturation rate, blood pressure, cholesterol, weight. 

Where do we stand for the next six-months? No hurry for the biopsy. More liver function tests. More Hep C tests. Biopsy is on the back burner.

From the city, I drove to mom's. She had phoned in the morning to ask if I could make an appointment with our dentist in town to fix one of her caps, which had fallen out while she was using her water pick. We ran a lot of errands for me, headed over the pass, ran a few more errands then settled in Starbucks for a nice chat before the appointment. It took just minutes to have the cap re-installed. Back at our house, we toured the gardens and played our favorite card game until Michael got home. After a dinner of fish tacos in town, we drove mom home. It was a nice, unplanned day with her. Today, we are together again for an appointment to get the shot in her eye to battle her Macular Degeneration. 

Thursday, August 29, 2013

Liver Biopsy Discussion

This morning is the appointment with Dr. H. in the liver clinic, which I have been so dreading. It is to discuss a possible transjugular biopsy of my poor over-medicated liver. As I have been worrying about this whole conversation, something my lung doctor, Dr. K said to me offered a little hope. I didn't catch it at the time but it came back to me yesterday. She said, after I asked her to review my liver blood tests and sonogram, that the only negative liver function level showed the bilirubin was a little high but the sonogram report DO NOT MENTION THAT THE LIVER WAS ENLARGED. That was the whole reason for the biopsy. An enlarged liver could mean the possibility it was turning fibrotic. Cirrhosis. Non-alcoholic cirrhosis.

So, I am going into this meeting to see how the doctor wants to proceed then offer, "Dr. K. asked me several questions that I was not able to answer." I then will ask what the hurry is for a biopsy and why now? What will be the changes in my treatment after the biopsy? Lose more weight? Be very careful of fats? (My current diet focuses on carb and calories.) Exercise even more? Why not do these things now and keep testing the liver? I may even ask for another referral to the Weight Management group to get down to 26 BMI. I am currently at 28 BMI and need to stay between 25-30 to be accepted into the lung transplant clinic, when needed.

It should be an interesting conversation.

Wednesday, August 28, 2013

Battle Plan for Fighting a Cold

I am in the "fighting cold" mode due to the first cold I have felt in almost two years. It began in the throat with a gentle tickle. On no. With only 48% lung capacity, a good cold developing into a lung infection could kick that down to 40%, which would require a visit to the lung transplant clinic. No, I do not want to go there.

So, I am in battle mode. Years ago, I found a drug that seemed to stop colds in its tracks, if taken soon enough. Aprodine, which I had to order from Rite-Aid. After the first evening dosage, I take an additional pill the next night and that usually is enough. The cold is gone. I have been doing this routine for years.

But, this one is stubborn. After two dosages, it was still persistent but not quite so overt. I brought out the big guns: Vick's Vapor Rub smeared on the bottom of my feet and on my chest. In the middle of the night on Monday, I was in a sweat and I felt so much better Tuesday morning. At the rehab class, my oxygen saturation numbers while working out were fantastic. The highest in many a month. I was shocked. Was it the Vick's that opened everything up? Was it the drug working overtime?

Last night, I took my final pill. I passed out. I slept almost 10 hours without moving. Today, I will haul my lungs into yoga hell to help open them up some more. I feel I am winning the battle.

In other news: I received the highly edited final draft for my approval of my speech presented at the American Thoracic Society's convention in May of 2013. It was chosen to represent Hypersensitivity Pneumonitis in a book they are publishing to be used for a variety of purposes. I am honored to be included.

Tuesday, August 27, 2013

Just an Offer of Hope

After I blogged about Stephanie Nielson's book "Heaven Is Here" yesterday, I realized that her book had a profound effect on me. One thing I found is that I have often avoided any discussions of my conversations with God going through this process of learning to live with a bad diagnosis. But, especially in the beginning trying to understand my disease and its profound change to my life, my Catholic background suddenly became my support. It was my crutch to get through another day and it gave me the strength to gather information and try to move forward. In my soul, I had a feeling that there was a reason I got this disease and that I would probably never fully understand why. My daily prayer was for strength and guidance.

In first grade, the nun was telling us about guardian angels. It was an ah ha moment when I remember thinking, "So THAT'S what that is!" Even as a very young child, I have always felt protected and watched over. Many, many times, it has saved me from bad or even dangerous situations. I always have listened to my intuition. Throughout my life, I have found solace in empty churches. I never understood why people prayed to saints. Why not go directly to the top? My prayers are often just conversations. After I got sick, I prayed to be healed. Then, I prayed to understand what I missed and how I must not have listened to my intuition and gone so far off track that I got this dramatic cosmic slap of a fatal diagnosis. What did I do?

Looking back now, I get it. As I have blogged recently, I have become very grateful for my disease. http://livingwellwithabaddiagnosis.blogspot.com/2013/07/grateful-for-disease-ten-years-later.html

Like Stephanie, I feel as if I now have a responsibility to offer hope to others as they walk on this same path. It is not an easy path. It is filled with sorrow and grief and such emotional pain. But, as in every good story, there needs to be the bad in order to recognize and celebrate the good. The good is to wake every morning grateful for another day on this earth, our embrace on the front steps as Michael heads to work, the time I have been able to spend with my mom, the joy of being with our son, my relationships with my doctors, my relationships at rehab, being able to perform with an orchestra, hearing Michael's key in the lock and noticing my heart beating faster.

It has been a tough ten years through a baptism by fire, but now I realize that I am indeed living well with a bad diagnosis.

Monday, August 26, 2013

Stephanie Nielson's "Heaven Is Here"

This summer, Kathy from my rehab class was in the audience during an event sponsored by Glenn Beck in Salt Lake City. She and her husband paid extra to attend a smaller reception where they met Elizabeth Smart and Stephanie Nielson of the NieNie Dialogues. She is the writer of a blog I read everyday. They bought her book, which Stephanie and her husband Christian autographed. At the rehab class on Thursday, Kathy loaned the book to me, "Heaven Is Here."

If you are struggling with a bad diagnosis, buy it. Get it from the library. Buy it online. Whatever it takes, get it, read it. There is so much there. The good and the bad. It is beautifully written filled with the emotions of dying and choosing to return to a horribly scared body and a life filled with pain. The worst of all pain, burns. 

If you don't know the story, the Nielsons married young, had four children by the time they were 25-years old and were carving out a life filled with family and supported by their faith. They were together when a small plane crashed, killing the pilot, breaking Christian's back and he suffered burns, but it was Stephanie who suffered the worst burns as she was stuck in the back seat and unable to get the seat belt off. She had severe burns over 80% of her body, including her face and really should not have survived. This is their story of recovery. Together. It has been five years last week since the accident, she gave birth to another baby last year and they are living well. 

The waves of so many emotions we have all experienced as we are following the path of living with a bad diagnosis are written so eloquently and it is not all sunshine and hope. There are very dark times. She really didn't want to see her children or any photos of her former self or life. It was all just too difficult to deal with. In fact, it took her months to even be able to see herself in a mirror. When she finally saw her face, she could not imagine being out in the world ever again. A monster. How could her children love her? In fact, after a glimpse, one child could not look at her. Imagine the pain. 

I couldn't stop reading it. It carries many messages and, in the end, hope. Please, please read it.

Sunday, August 25, 2013

One Final Birthday Luncheon

What an unexpected day. I did get to mom's right on time, then we waited. And waited some more. Almost two hours later, her 93-year old friend and her two daughters arrived for lunch to celebrate mom's birthday. Mom had misunderstood their arrival time. After a tour of mom's complex and apartment, we drove to a little Italian restaurant we found last year that is never crowded, the owner is lovely, never rushes us and it is quiet. Perfect!

The food was delicious and we shared the cake that they brought with them at the end of the meal. It was an almost three-hour lunch. The surprise? Her younger daughter.

I had met the older daughter a few years ago and realized that there were some issues. Though she was very kind and nice, clearly there was something not quite right. I understand she had a tough childhood, health-wise, and that she was able to finish high school but she had spent many years highly medicated and under doctor's care. She lives with her mom, who is now almost blind. But, all these years, I have heard about the younger daughter. She had a fantastic job and had a son whom my mom adores but had made many bad decisions about men and money. I was braced for a difficult person.

We had a ball. We chatted non-stop. She was a major foodie, in the city for a couple of weeks for business, had hit all the right restaurants so far, she even had reservations for the place we took mom for her birthday dinner and had discovered fine bourbon but had never heard of the Bourbon Trail. I gave her the name of several different places to hit while she was still in the city. She has no problem eating alone. The hours flew by.

I didn't get home until 5:00! Michael and I chatted the evening away in the garden then hit the bed by 8:30. We both were still recovering from our wild week. This morning, we are watching the Formula 1 race from Spa, Belgium which is one of my favorite tracks. Lots of passing. Full pedal to the metal, which is rare in Formula 1 racing. And the rain. Always some rain during this race.

Saturday, August 24, 2013

Final Engagement

Today is the final social engagement to finish the last few weeks of company and nights out. Mom's 93-year old friend Peg is coming with her two daughters for lunch to celebrate mom's birthday. I have been invited. Peg was the woman who did more for my mom than anyone could after my dad died. Her husband had passed away just a year earlier so she really understood. They bonded. I have thanked her because she really did help mom adjust to her new life. She was a blessing.

After just a few hours of sleep, I stumbled through the day yesterday, had a fantastic breakfast date with my friend which always makes me feel energized and so happy, then met mom at her hairdresser's. She needed a small bite for lunch but we sat and talked for two hours as we hadn't seen each other since Monday. Lots to share. Non-stop!

Michael and I fell into bed early last night and slept ten hours. I think it will be the same tonight.

Friday, August 23, 2013

Dinner, Breakfast and a Nap

This is going to be quick as I have to hit the shower and be out of the house by 7:45 for a breakfast date with a friend. I have been so looking forward to seeing her.

We did have an amazing night last night. A once in a lifetime type food. Since the banning of foie gras in our lovely state about six months ago, it has not been offered in any restaurant. It was suddenly illegal to serve. Our friend bought a duck liver and froze it before the ban. Wednesday, he defrosted it and gave it to the chef of a restaurant where he cleaned it, seared it and served huge portions to us last night. It was delicious and very rich.

They also served Kobe beef tartar, escargot, bone marrow and beet salad. I had two escargot and two small pieces of the beet salad. It was excellent.

Then the main courses served with a slab of seared foie gras: I had fish in a ginger sauce, Michael had the short ribs, others had duck confit and steak. It was delicious but I took much of ours home with us. Dinner tonight!

Then, there were three desserts served to share.

Lots of conversation and laughs and we felt very grown up being out in the city on a Thursday night. We climbed into bed at 12:45 and up at 6:00. We are going to be dragging today. After the breakfast date, I am meeting mom for a hello and should be home early this afternoon. Early enough for a much needed nap.

Thursday, August 22, 2013

Stable, Thankfully

It was a good appointment with Dr. K. yesterday. She is the super excellent lung doctor who has led me through this whole process. I had a list prepared. Surprisingly, she was in a good mood. Maybe, actually funny. What a shock!

I was feeling pretty good and it proved to be a good omen. She mentioned that I was back to the same levels as a year ago, still bad but better. Lung capacity was the same but my DLCO was up 3% to 14.3. Nice.

We chatted but my liver issues and I asked for her opinion about having a transjugular biopsy. She reviewed my liver blood tests and sonogram and suggested asking the doctor why he is wanted to have a biopsy at this time. What would he change in my treatment? Why not just change that now? There is no medication so it would be lifestyle things like additional weight loss or watching fat content more closely. Kind of made sense to me. So, when I see him next week, I will ask. Kindly. Oh, she also mentioned that I am strong enough to be intubated so not to be worried about that.

I also shared the two cancer issues and she reminded me to have a cancer screening appointment with my new dermatologist because of my prolong use of imuran (azothioprine), which leaves a vulnerability to skin cancers. I already had made that appointment.

It was with relief that she said the required proof of supplemental oxygen needs for Medicare was not a 6-minute walk test but a bicycle test. Easy. I will also have a full run of PFTs during the same appointment! It will be a 2.5 - 3 hour appointment. Yikes!

Then, she reminded me to have a flu shot when the 2013/2014 version is released in September. She listened to my lungs, which were clear, then she sent me off for another six months.

Stable. I am in stability-land. All the company. All the nights out. All the stress and I didn't get sick. I want to stay here in stability-land so I have been working out extra hard. The two-hour power yoga class almost killed me yesterday then after a shower and the long drive to the city for the doctor appointment, I was very tired last night. I slept like the dead and that was so needed as tonight is going to be a late night. A naughty night. I will share the details tomorrow.

Wednesday, August 21, 2013

Visit with Dr. K. Today

Nervous. I am always a bit anxious about driving into the city and also to see Dr. K. I am feeling pretty good and sort of looking forward to quick lung capacity and DLCO tests. We will also be talking about my liver issues, two minor cancers and the required 6-minute walk test for Medicare, which needs to be arranged. But before I take the long drive, I am going to the yoga hell class this morning. There will just be enough time to take a quick shower afterwards.

I was surprised how good I felt last evening after doing time on the treadmill and all the weight machines at the other rehab before my rehab class. Nothing hurt. It felt rather good. I may do it again on Thursday.

Dreams. I have them then immediately forget them but lately, they have been haunting me! In real life, there is a bit of drama within the family and it has seeped into my dreams. I am fighting battles. I am standing up and making statements. In real life, I am not a person who confronts but rather someone who tries to solve the issues. That is why I was a good boss and administrator. It is very unsettling. I hate drama.

Tuesday, August 20, 2013

Recipes for the Week for Those of Us on Prednisone Therapy

I haven't passed along any menus for the week or recipes lately. For those of us on prednisone, it is important to eat a diet featuring non-starchy vegetables and lean protein, avoiding anything that processes into sugars (milk, yogurt, grains, squash, corn, etc.). As a cook, that has not been too limiting and I have found very satisfying foods. The goal is 1,400 calories a day to maintain or 1,200 calories if I need to lose a pound or two.

Hanger Steak with Shallots
Yesterday, I went by the butcher then took mom to the eye doctor, had lunch at Nordstroms then Trader Joe's. Well, I forgot the meat in mom's refrigerator, there was really no other food in the house so I phoned Michael to swing by after work to grab it for me. It worked but we ate dinner later than usual. It was worth it. There was moaning going on. I had everything ready to make the Hanger Steaks with Shallots once he hit the door with the meat. It made quite a mess but it was really good. I always cook enough for two dinners (3-4 ozs. per serving) and I made Michael some corn on the cob to go with it. He was one happy guy.

Hanger Steaks with Shallots:  I used two steaks instead of four and served one for both of us per night. Also, I did not use the butter and it was fine.
http://www.simplyrecipes.com/recipes/hanger_steak_with_shallots/

Chile Chicken Monterey: I will serve two chicken breast cut lengthwise, which will make 1/2 chicken breast per serving. Light cheese, or my mom used soy cheese, can be used.
http://www.genaw.com/lowcarb/chile_chicken_monterey.html

Five Spice Pork with Asian Slaw: It states it makes 2 servings but we use it for 4 servings. I use low fat mayonnaise.
http://www.seriouseats.com/recipes/2012/09/chinese-five-spice-pork-with-asian-slaw-recipe.html?ref=box_quick

Happy cooking!

Monday, August 19, 2013

Into the Week

It has been the strangest summer with endless days of cool fog, no morning sun, low temperatures throughout the region and now, thunderstorms are due today. California! We don't do thunderstorms! After having a very quiet day with Michael yesterday, mom and I will try to dodge raindrops for our visit to our favorite doctor after my rehab this morning.

I ate too much on her birthday. I will be doing extra time on the treadmill this morning before swinging by the butcher. After mom's appointment, we will hit Trader Joe's so there will be lots of good, healthful food in the house. The cupboards were pretty bare yesterday.

Mom had an ectropion - lower eye lid surgery - to help her tears to flow properly instead of down her face. It worked but the sides of her eyes have a slight downward tilt. No one else would ever notice it except for her. The doctor is our favorite and has told us he builds time into our appointment so we can chat. He has two little boys and I have been able to share with him some fun things to do with them in the area. He has newly moved from New York City, where he was raised and he deeply misses his family. It will be fun to see him and hear all about his adventures.

This week's focus is on Wednesday when I have my first visit in six months with my lung doctor, Dr. K. I am always a bit nervous before our visit. I am feeling pretty good, not coughing but tired. We will discuss the whole liver issue and maybe a change of drugs.

But the thing I am looking forward to this week is Friday. I am meeting my dear friend for breakfast. It has been too long.

Saturday will find me in a restaurant with mom's 93-year old friend and her two daughters for a birthday luncheon in honor of mom. The celebrations continues!

Sunday, August 18, 2013

Mom's 85th Birthday

Mom's 85th birthday celebration went really well. She loved her lei, we drove into the city without too much traffic, my sister's family arrived early as well and all was right with the world! Cocktails all around. In fact, there were twelve cocktails through the 2.5 hours! Mom even had two! Shocking!

We went to Tyler Florence's famous Wayfare Tavern right in the heart of the financial district of SF. It was packed but it was perfect for us! We were seated in a leather covered, highly stuffed and comfortable booth with high backs so we were insulated from the sound. We shared appetizers of Devil's on Horseback (Medjool dated stuffed with blue cheese, wrapped in bacon on a bed of hazelnut pesto), Deviled Eggs (delivered in error so enjoyed for free), Grilled Octopus (with cannellini beans, chorizo, aioli and herbed breadcrumbs) and Poutine (oxtail gravy, English peas and mozzarella curd).

Then the main course arrived. Michael and I had the Kobi Burger (I did not eat the bun), others had:
The signature dish of Organic Fried Chicken in a buttermilk brine, roasted garlic and lemon
Seared Ahi Tuna with a carrot confit, carrot puree, soy caramel and crispy ginger
Chicken Paillard which as grilled chicken served with turnips grilled wild mushrooms, crispy shallots and arugula
Filet of Beef with shallot confit, bone marrow bordelaise and crispy onions

Desserts featured a peach pie, an obscene chocolate pie and chocolate hazelnut ice cream.

We were DONE!

It was wonderful to be together and have conversations without a holiday involved. Mom was happily surrounded by her children and one of her grandchildren. William had phoned her earlier to wish her a happy 85th. My brother sent lots of presents and missed being with us! He and Betty live so far away.

Awful traffic took some time to get onto the freeway, we drove mom home, they drove to the hotel near us and we all met back at our house for a couple of hours. We were in bed by 9:30. Not too bad. We are moving slowly this morning.

Saturday, August 17, 2013

Still Tired but Ready to Celebrate!

Today is mom's 85th birthday. We will be meeting my sister, her husband and daughter in the city for an early celebration dinner. As an additional treat, I bought a beautiful orchid lei for her to wear. Her gifts are gift cards to many from the places she shops.

The weather is supposed to be beautiful here on the coastside so that will bring all the tourists to town. We need to build in driving times to the schedule. This morning, we will run out to the bank, Safeway, lunch and to pick up the lei then shower, dress up and leave by 2:00 this afternoon. We plan to arrive to the restaurant early so we can buy a cocktail for my two drinking buddies (mom and Michael since I don't drink!). The rest of the family should arrive early as well. More tomorrow.

Yesterday, I did go back to bed and slept until 11:00 before working in the gardens. As I waited for Michael, I kept drifting off. I was one tired girl and slept over nine hours last night. Still a bit tired this morning. It is going to be a long day as my sister and her family are coming here for drinks and a bit of food after we drop mom off at her apartment over the hill.

Lots of coffee. Lots of smiles. I'll get through the day!

Friday, August 16, 2013

#2 Field Trip of the Week

What a treat. Mom and I met Barbara's day care kids at Elkus Ranch, which is a working ranch owned by UC Davis here on the coast, just south of town and down a long back road. Only groups of people are allowed onto the property and there is a reservation process. Barbara arranged everything before summer even began. It was so worth it.

It was a lovely setting surrounded by hills featuring gardens of vegetables, fruit and flowers and animals. The day began with the favorite activity of carefully catching chickens then sitting with them. The chickens decide when they have had enough by flapping their wings and the children were shown how to gently place them back on the ground. All but two of the children had been with us at the ranch last summer so mom and I had fun watching them throughout the day. The awe in the face of the youngest child while holding his first chicken was indescribable. It was just magic.

The docent never rushed anything and moved the group along at its pace, not hers. She was outstanding. Next, there was a summer camp of children coming up with ideas and trying to make their idea happen. The goal yesterday was to become a sort of transformer. As we went into a barn, they gave us a demonstration of the process of building wooden pieces with rollers on them strapped onto a body so they could just fall onto the rollers and take off! They were working on a braking system. A teacher and I spoke about the goal of the process rather than producing a perfectly finished product. The kids were learning to keep refining their ideas. It felt so good to be around kids again!

Llama named Ginger
We then went to another fenced area to meet the baby goats with their mommas all overseen by a huge llama. She was a spitter! We all stayed away from her! One baby goat fell in love with mom and tried to eat her shirt! The younger children were actually hugging the goats. We left the goats to meet the one ram who was not too attractive but he did his job. He made all the babies. The children then entered the bunny hatch and the smallest child was talking to the bunnies like he would a human baby. It was so very sweet.

They then entered the huge arena where there were donkeys and sheep and goats who all needed brushing. That area had a back door that opened to the large open area so the animals could come and go as they pleased.

Then we moved to the big barn where the large sheep were waiting for us. The kids were able to hand feed them. They loved being so close to them. The docent explained the process of sheep sheering, showed the kids a pre-washed whole sheep skin before demonstrating how to card freshly washed wool. They then took that carded wool, twirled it to make yarn to make bracelets for themselves all serenaded by the bleating sheep.

Washing up before lunch
With all new wool bracelets, we ate lunch together on the picnic tables which ended with homemade cupcakes! A set of grandparents had joined us on the tour and it was Grandma's birthday. Grandpa dad baked cupcakes for everyone and we all sang a hearty "Happy Birthday" to her. The kids also signed a birthday card to my mom for her birthday on Saturday. She was so touched.

After another visit with the chickens, we said our goodbyes. The time had just flown by. Mom and I headed home while the group stopped at one of the beaches on their way back across the bay. It was such a lovely day.

Thank you, Barbara!

Thursday, August 15, 2013

Day Between Field Trips

I am now officially tired. Yesterday, I was up at 5AM to shower and dress and was out the door by 6:30. Mom and I were on the road together for the 100+ drive into the valley. East. Before meeting her friends for lunch, we drove an additional 40-minutes north to visit my dad at a cemetery in Lodi. Mom was stunned someone had stolen the silk flowers from the vase on his crypt but happy that she brought some new ones with her. We cleaned his nameplate then drove to another section to clean a plaque in memory of her brother who died over Germany in WWII.

We quickly drove back to her former city to swing by her house. It looked good. She was happy. From there, we visited another friend for almost two hours before meeting other friends for lunch. It was rather sad to see her friend not looking too good. Mom and her two friends were born the same year but one was healthy as a horse, one seemed to be fading fast and mom looked like a young kid next to them. I did a lot of listening.

The drive home was uneventful but it was interesting to leave Modesto where it was 98 degrees, to drop mom at her house where it was 68 degrees and to come home here to the coast where it was RAINING because the fog was so thick and 62 degrees. It actually felt fantastic after being in the oppressive heat.

But, it was a lot of driving and a lot of talking and I am a lot of tired. Today, we are going on a field trip with Barbara and her day care kids at a ranch here on the coast and after driving mom home, I am going to sleep. I knew this week was going to be tough but I am really feeling it. It has been almost three weeks since Michael's mom's visit and two weeks since the weekend outings with William so I think I escaped becoming sick from those events. I just need to make sure I don't get sick from this week and the upcoming weekend activities in celebration of mom's 85th birthday.  Doing so is going to require some downtime. I am going to do a bit of yard work tomorrow then not much else. I really want to be energized and feeling well for my appointment next Wednesday with my lung doctor, Dr. K.

Wednesday, August 14, 2013

#1 Field Trip this Week


This is the county's historical museum mom and I went to tour yesterday with Barbara and her day care kids. It is housed in the old courthouse built in 1910. I had been there years ago while taking a real estate appraisal class from the county tax assessor. His offices were in the building.

It was stunning. It was filled with white marble, glass windows, a huge dome, inlaid small tiles and several rooms filled with so much local history. The exhibits were extremely well presented with lots of hands on stuff for the children. The docent was extraordinary and clearly knew what interests children and kept them totally engaged. There was one room of early California, Ohlone Indians, the Spanish rancheros, the missions and discovering the bay. 

Another room focused on the largest group of immigrants early into the county enticed by the Gold Rush: Irish, Japanese, Chinese, Portuguese, Mexican and Italy. Those simple exhibits were lovely. The guide even had the children make Chinese helmets using origami. So patient.

There was a room filled with exact replicas of ships from 500 – WWII. Another room was dedicated to entrepreneurs. It was rather interesting that I knew several of them, as they were parents at the school where I got sick.

The highlight for the children was the old courtroom. The docent simply placed the children and they quickly enacted a trial. After looking at several other exhibits, they asked to return to the courtroom. They loved playing another trial. Sadly, the jury of mom, Barbara and I called it guilty because “he just looked guilty.” The pretend judge sentenced him to 25 years and the bailiff took him away. They really were play-acting. It was wonderful to watch.

Afterwards, we sat in the courtyard and had lunch together. Mom and I will see them all again on Thursday when we meet at the University of California in Davis owned Elkus Ranch. Lots of chickens, goats, sheep and fun watching them play with the children. I think we may even have to stop at the beach on the way home. 

Tuesday, August 13, 2013

Scared Me

I tried to phone mom in the morning before getting dressed to workout at the other rehab. Since we are going to be together today, Wednesday, Thursday and Saturday, we decided not to be together on Monday.

Her phone was busy. I got dressed. Called. Busy.

Driving over the hill, I tried again. Busy.

I arrived at the other rehab 30-minutes later, worked out for an hour then tried to phone her again.

Busy.

Something was wrong. I hoped the phone was just off the hook but I do have to admit that I had visions of her on the floor reaching for the phone. I was now really worried.

I drove to her apartment and saw her car in its parking slot. She was home. I knocked loudly at the door. Nothing. My heart was beating fast. I used my key to open the door and loudly announced my arrival. Nothing. She was not in the livingroom. I turned into the bedroom. She wasn't there. I suddenly heard water running and my heart stopped thinking she had a problem in the bathtub!

As I completely turned the corner, there she was, with headphones on listening to her portable radio just buttoning her jeans. She hadn't heard me. I scared the heck out of her!

Her livingroom phone was off the hook. We sat and talked for almost two hours, went to Carl's for lunch (Cod Sandwich - no bread for me), we did a quick run through Trader Joe's for after dinner food for my sister and family after mom's early birthday dinner on Saturday and I got home around 2:30. A normal Monday for us.

Today, we are going on a private tour to the county historical museum with Barbara and her day care kids. We both love to be around the kids, they are so well behaved and interested in everything. We'll have a picnic lunch together afterwards. A special day.

Monday, August 12, 2013

Home

We messaged each other on our iPhones his entire trip home. Michael, from the back seat, kept me informed as he got closer and closer to home. I checked 511.org and found out that there was a huge accident on the Bay Bridge, which was causing a massive backup onto the connecting freeway. It would take them at least an additional hour to make their way across the bridge. So, I encouraged them to take two other freeways and a different bridge to avoid it all. They did and it was so surprisingly fast that they were dropping the twin off just on the other side of the pass before I knew it.

Then suddenly, the door opened and he was home. Home. It finally felt like home when we stood in the kitchen and just hugged. I had asked in a message if he was hungry, not knowing if they had eaten a large lunch. Well, he had eaten a large breakfast but nothing else so he was one hungry man. I quickly made and cooked meatballs which were ready and waiting for him, we sat and ate and talked then we went outside to the garden swing and talked some more.

He had a great time. It was so good for him to get away and to just enjoy himself. I am always invited, which I have to decline because of the altitude, but I think it is good trip for him to go with this group of friends. He slept like a baby last night.

Life returns to our normal routines today. Mom and I have a packed week ahead so I am not going to be with her today so I am going to go over the pass to the other rehab and have a good workout.

Sunday, August 11, 2013

Reflective Time


My few days without Michael has made one thing very clear: I don't get enough sleep. The last two nights, I have gone to bed at 8:00 and each morning, I wake up around 7:30. Being up by 6AM to spend an hour with Michael in the mornings before he takes off for work then trying to stay awake later than 8PM to spend more time with him after work is not working for me.

I am not sure what to do about it all. I really want to spend as much time as possible with him each day. Maybe I need to make sure I get a nap in everyday but many days are so busy....

This time alone has been good for me. It has been a very reflective time. Meditative. I haven't felt the need to phone anyone, to talk with anyone, to reach out. As the fog clears this morning, I am going into the gardens which is always my zen place. Nothing with me except my own thoughts.

I find myself watching the clock already this morning, counting the hours until I hear the key in the door and the sweet voice saying, "Hello" in a way that is only his alone. My heart always beats a bit faster. I feel whole again.

Saturday, August 10, 2013

Burning Hours Until He Returns

Yesterday's liver scan went off without a hitch. The technician was fantastic and quick! They are not supposed to comment on what they are viewing but...we bonded. She said my liver looked really good. I took that to mean that there were no cysts or bumps or thicknesses that looked suspicious. That alone made me sleep better last night.

The thing that worries me the most is that if I have a serious problem with my liver (due to the medications), will I still be able to receive lungs when I really need them? Or will I be excluded from the process all together? Those are the questions.

Yesterday was so busy that I fell into bed early last night and slept ten hours. After saying goodbye to Michael in the morning, I met Natalie at a house they are thinking of buying. It was built years ago by our friend Randy during his first marriage. It was so much larger than I remembered and Natalie did a jig when we walked into a "bonus room." It was a huge space on the first floor, perfect for a kid's playroom. There was even a hot tub! The only problem they may have is having to buy enough furniture to fill the spaces! She is showing the house to the kids and Ethan this afternoon. Finger's crossed that the stars align for them.

After seeing the house, I flew over the hill to drive mom to her eye doctor appointment. We had a great chat with the doctor and I even told her the Big Freedia story (opening act at William's concert two weeks ago). Love Big Freedia. From there I drove the long drive north to my liver scan appointment.

Today, I am going to rent some movies - something we have not done in years - and have my toe nails painted. Besides ironing Michael's shirts, today's agenda includes ordering medications, cooking dinner, maybe cutting the grass later in the day if it is dry enough and organizing paperwork. A quiet day.

Michael is due home tomorrow afternoon. Thankfully.

Friday, August 9, 2013

Three Days Alone

Do you know when you wake up just knowing something is not right? It was confirmed yesterday when the doctor said I had a screaming blood and pus filled urine sample which proved a bladder infection. I never had them as a young woman and only have been suffering with them after menopause. Why? Has to do with flexibility of tissue. Sooooo, I am beginning a two week run of a hormone cream with an ongoing weekly dosage. We will see if it helps with dryness and reduction in the number of bladder infections. I also began a two day run of antibiotics to clear up the latest infection. Feeling better already!

Early this morning, I am going to meet Natalie at a house they are considering buying. Michael is leaving for three days in Reno just after I take off so I will be coming home to an empty house this evening. Yes, I will be gone all day to a doctor's appointment with mom then the liver scan in the city. A long day.

It is so foggy this morning that it is like a light rain. I am so wishing for some sunshine this weekend. A little bit, please.

Thursday, August 8, 2013

Day of Driving and Frustrations

So it didn't go very well yesterday. All day. I did a whole lot of driving but never moved forward.

In anticipation of the liver sonogram, I set the alarm for 5:30AM so I could eat and take all my morning pills before the required six hours prior to the test. After a shower, I went to the bank to get money for gas and parking, pumped my own gas, drove to my primary doctor's office in town to make an appointment for today (need a Hep B vaccine double dose booster and check for bladder infection) then drove into the city for the test.

I ran into the liver doctor in the hallways, we hugged and I asked about his new house...love having a nice relationship with my doctors. Finally, I checked in for the test. What? Today? There is no appointment today. You must have changed the appointment. WHAT? Checking back, it never showed my noted appointment of yesterday at 12:45. Ever. I didn't just make it up. There was a big screw up somewhere. She said that the appointment is actually Friday at 2:30. I would NEVER make an appointment on a Friday because we put all of mom's appointments on Mondays and Fridays. I was so angry. I was not polite. I finally told the woman I would keep the appointment on Friday after I take my mom to her doctor appointment at the other end of the peninsula and that I would bring my smile with me.

Driving home, I had nothing but problems. I also was very hungry as now it was 1:30. I stopped to buy something for Winnie and Oliver, who I was seeing later, and a quick lite lunch. I tried to go to the organic market and could not find a parking place - it was being freshly oiled. After 20 minutes at home, I drove up to the harbor to Winnie's gymnastic class and waited for them to arrive. No one was there. I sat for 10 minutes and read before I realized that the class was actually 4:00...back home I went.  Back again at 3:40, I finally got a big kiss from Batman in full costume. I brought along Pop Rocks and Jelly Belly's. Winnie was fun to watch going all sorts of gymnastic stuff. Natalie and her family live in a two bedroom, 1100 sq. ft. townhouse which was fine with just Winnie but now Oliver is 3-years old. They are bursting at the seams. Ironically, they are looking at a house to buy which was built by the woman's husband who I had lunch with on Wednesday. It is at the end of a road at the top of a hill with ocean views. It is four bedrooms, 2,400 square feet and empty. It would be perfect for them.

But yesterday, I felt I spent the day in the car. I was tired and frustrated and ready for the day to end.

Today? Rehab. It is also the final night with Michael. He leaves in the morning for three nights at Hot August Nights in Reno.

Wednesday, August 7, 2013

Encouragement vs Inspirational

I must report to you, dear reader, that the word "inspirational" was never uttered during lunch yesterday, much to my relief! Instead, I was deeply touched by a very thoughtful note and small gift of a beaded silver bracelet with one of my favorite words imprinted into the silver disc: Earth Abides. That was the title of a book I read a long time ago about a virus killing most of the people in the world and the struggles to begin again. It is also a quote from the bible: Generations come and generations go but the earth abides. Mother nature always wins. Life continues.

Sue is the wife of a dear friend we have known since he was 16-years old. He is now retired! She has been struggling with lupus for eight years though she thinks she showed symptoms as early as 10-years old. About a year ago, she was tired. Tired of all the pain meds that were fogging her brain. Tired of the weight she had gained laying in bed and with the prednisone. Tired of not being a part of her family's life. Just tired of if all.

She took control, at long last. She started by reducing her pain medications. Then reducing them so more. She began to watch what she ate. She found that if she made the bed each morning, she would not fall back into it. She put makeup on and got dressed and stayed downstairs with the rest of the family during the days. Since she was off most of the pain medications, she was allowed to finally drive! She became independent again. She has lost 90 pounds so far.

Apparently, while she was struggling with all of this and through the past years, I said the right things at the right time. But I wonder if it was that she actually heard what I was saying. I give her full credit. She is still in so much pain but refuses to fall to the medications. I find that remarkable. Pain is a whole other ballgame.

We shared lunch, our recent struggles and stories of our children and our husbands. It was lovely.

I must share part of her note to me:
"You always seemed to know just what to say to bring me back up, to keep me fighting! You helped me see the good in the bad. You have been my light shining at the tunnels end, encouraging me to keep taking baby steps if that's all I could, I'd still reach my goal. You have been such a blessing in my life."

And that, dear reader is what I wish this blog does of anyone who reads it. I hope it offers encouragement to get up, live life regardless of the disease, be present and move forward. Life is good.

Tuesday, August 6, 2013

Inspirational - Twitch, Twitch


I am going into the day with a bit of trepidation. An hour ride over a bridge, a lunch and a conversation.  Most of us are uncomfortable when labeled and I am really uncomfortable when someone says I am "inspirational." Makes me itch and twitch. I am just trying to keep going, live a good life and enjoy the last years with my family. But today, I have been invited to lunch so I can be given something by someone who says I am her "inspiration." (twitch, twitch)

I am touched that anyone would go out of their way to think of me or honor me in anyway but I don't feel worthy of the attention or even the label. It will be good to see this woman as we haven't seen each other in many years and have a good chat. Expect a report tomorrow.

But my real trepidation is saved for tomorrow. I am having a liver sonogram. I got a report back from a blood test that I really don't understand but it looked terrifying to my untrained eye. It may explain why I am so tired and not feeling full of vim and vigor. It will all become clear when I meet with the liver doctor in September.

Mom's 85th birthday is coming up in almost 10 days. Jill had a lei made for Ian to wear at the graduation ceremonies and I thought it would be a nice touch to have one made for mom. After lunch today, I am going to order one that is appropriate for her small stature and not so huge and overwhelming. What else does she need? She has three closets full of clothing (she is obsessed) and she really doesn't have the space or need for much. So, we are giving her Maeve Binchy's final book along with gift cards for her beloved Starbucks (tall, extra-hot, non-fat Chai with sprinkles), McDonald's (hamburger with catsup and onions after volunteering at the local library every Wednesday) and Home Depot (where she spends a lot of time and money each week). Lee, Jeff and Shelley are driving down from the Sacramento area to have an early dinner in the city to celebrate the event.

Monday, August 5, 2013

IPF Improved Survival Rate with Possible Ties to Proton Pump Inhibitors

It is so interesting that the researchers are at the very beginnings of discovering a possible connection and a higher survival rate for idiopathic pulmonary fibrosis (IPF) if treatment includes proton pump inhibitors (PPIs), usually the treatment for GERD. This includes patients who had no symptoms of GERD. It may be tied to microaspiration. 

Background information on microaspirations  http://livingwellwithabaddiagnosis.blogspot.com/2012/06/gerd-and-lung-disease-day-3.html

Much more research needs to be done but it is interesting.

Thanks to Susan at the ILD Support Group, I received the below which was presented at the 2013 American Thoracic Society Conference:

Reflux Medicine Boosts Survival in Lung Disease
Published: May 24, 2013 | Updated: May 24, 2013

Action Points


  • Note that this study was published as an abstract and presented at a conference. These data and conclusions should be considered to be preliminary until published in a peer-reviewed journal.
  • A retrospective review indicates that patients with idiopathic pulmonary fibrosis who were taking proton pump inhibitors had increased survival whether or not symptoms of gastroesophageal reflux were present.
PHILADELPHIA -- Survival in idiopathic pulmonary fibrosis (IPF) improved significantly in patients treated with proton pump inhibitors (PPIs), adding to a body of literature supporting PPI benefits in IPF, investigators in a retrospective review concluded.
Patients treated with PPIs had a mean transplant-free survival of 3.4 years compared with 1.4 years in a group of patients who did not receive the drugs. Patients with no history of gastroesophageal reflux (GER) or history of PPI use derived even greater benefit from the antireflux therapy.
Subsequent laboratory studies suggested a mechanism for the benefit, beyond antireflux effects: inhibition of dimethylarginine dimethylaminohydrolase (DDAH), which regulates nitric oxide synthetase in fibroblasts from IPF.
"Our study confirmed previous literature that suppression of gastroesophageal reflux is an independent predictor of improved survival in IPF," Lawrence Ho, MD, of Stanford University, said here at the American Thoracic Society International Conference. "We found that PPIs improved survival in IPF patients without GER symptoms or history of PPI use."
"DDAH and inducible nitric oxide synthetase are increased in lung epithelium and fibroblastic foci in IPF, and we found that proton pump inhibitors inhibit DDAH."
"These findings suggest a novel antifibrotic and pro-survival mechanism for PPIs in IPF patients," he added.
For reasons that remain unclear, patients with IPF have a high prevalence of GER. Reflux has been hypothesized to contribute to IPF etiology by induction of chronic microaspiration.
In one small clinical study 24-hour esophageal pH monitoring showed that two thirds of patients with IPF had abnormal acid exposure despite treatment for GER (Eur Respir J2006;27:136-142).
Several studies have shown that treatment of GER is associated with improved prognosis in IPF, including lower radiographic fibrosis scores, improved survival, and stabilization or improvement in pulmonary function.
"The survival benefit was present in patients with GER symptoms and GER diagnosis, which would lead us to believe that the medications were used for GER," said Ho.
However, some evidence has demonstrated a survival benefit in patients with IPF, irrespective of GER status, suggesting a non-reflux mechanistic explanation for the benefit, he added.
To add to the clinical database and explore potential mechanisms for GER medications' benefits in IPF, Ho and colleagues searched Stanford medical records for patients with IPF diagnoses during 2003 to 2007 and with 5-year follow-up data (or until a primary outcome of lung transplantation or death). They excluded patients who had an FEV1/FVC ratio ¡Ü0.70 or who received PPIs for less than a year for reasons other than transplantation or death.
The search identified 131 patients, 85 of whom received PPIs and 46 who did not. Clinical and demographic characteristics did not differ significantly between the PPI and non-PPI groups. However, transplant-free survival did differ significantly between the groups and favored PPI treatment (P=0.018).
An analysis of 5-year survival showed that almost 60% of the PPI users were alive at 5 years versus about 35% of patients who did not receive antireflux therapy (P=0.013). When the analysis was limited to patients with no history of GER or use of PPIs, the survival benefit persisted as more than 60% of PPI users remained alive at 5 years (P=0.013).
The observation that PPI treatment benefited patients irrespective of GERD status and PPI history led Ho and colleagues to examine alternative explanations to suppression of acid secretion as the reason for the benefit. Recent preclinical studies showed high levels of DDAH and iNOS in lung epithelium and fibroblastic foci. Inhibitors of iNOS and DDAH attenuated many of the features of IPF in a mouse model (Sci Transl Med 2011;3:87ra53, J Pathol 2013;229:242-249).
DDAH drives the metabolism of asymmetric dimethylarginine (ADMA), an endogenous inhibitor of iNOS. Under normal conditions, L-arginine undergoes nitrosative stress mediated by iNOS to generate reactive nitrogen species (RNS) and reactive oxygen species (ROS). ADMA brakes iNOS activity via competitive binding of NOS, said Ho.
In IPF, increased DDAH activity impairs ADMA-mediated control of iNOS, leading to increased generation of RNS and ROS.
"Radicals produced by iNOS exacerbate an already dysfunctional pulmonary milieu by modifying cell signaling pathways in a manner that promotes local inflammation, increases aberrant cell proliferation, and accelerates matrix degradation," said Ho.
A comparison of tissue from donor and IPF lungs showed localization of DDAH to fibroblasts in IPF, and levels of both DDAH and iNOS were three times higher in the IPF tissue compared with the donor tissue, he added.
In a mouse model of IPF, treatment with a selective inhibitor of DDAH led to decreased enzymatic activity in lung lysates. The fibrosis score decreased significantly and lung function improved, as determined by lung compliance.
Using a high-throughput drug screening system, Ho and colleagues confirmed that PPIs are potent inhibitors of DDAH and found that lansoprazole was the most active inhibitor of DDAH in the PPI class. Mice treated with lansoprazole for 5 weeks had persistent 20% to 30% increases in plasma ADMA compared with a vehicle-treated animals.
The studies also showed that PPI inhibition of DDAH eliminated aberrant signaling in the transforming growth factor-beta pathway, which inhibits collagen production.
In the discussion that followed the presentation, an unidentified member of the audience said, "I have a little issue with the statement that PPIs improve survival. I don't think that's what you've shown. I think you've shown a relationship between PPI use and outcomes. I would be interested to know about confounders that might account for this relationship. For example, things that drive PI use, such as obesity, nonsteroidal anti-inflammatory use, concomitant disease, and so on."
*************************************************************
Dr. Joyce Lee, UCSF pulmonologist, critical care specialist, and the director of the Interstitial Lung Disease (ILD) Clinic, provided comment on the article:
There is increasing evidence to suggest that treatment (both medical and surgical) of gastroesophageal reflux disease may benefit patients with idiopathic pulmonary fibrosis (IPF). The data by Ho and colleagues are intriguing and suggests that proton pump inhibitors might have effects outside of reducing the acidity of the reflux and microaspirate. However, these data are preliminary and do not provide information on the effect of PPI on DDAH in either mouse models of fibrosis or in humans. There is little data at this time to suggest a non-reflux mediated benefit of proton pump inhibitor therapy in IPF. More research needs to be done in this area, including a randomized controlled trial of medical therapy for gastroesophageal reflux in order to determine the actual efficacy of proton pump inhibitors in patients with IPF. Until such a trial is performed, the benefit of proton pump inhibitors in IPF will remain uncertain.

Sunday, August 4, 2013

Thoughts of Dying

Michael and I gave my blog information to someone we know. It is not something we often do as it is so personal and so very honest. But, this woman has been dealing with breast cancer and also has a husband who adores her. Dealing with a bad diagnosis seems always harder on the spouses. They have no control over anything and just can't fix it. They can only watch. And emotionally support.

When I open myself to someone I know, I like to go back to read the first year of blogs. I try to read them with a different eye. A new eye. Yesterday afternoon, I reread so many of the first blogs and it was then that I had a realization:

I probably won't die of the lung disease.

Sounds weird, I know. It occurred to me yesterday that I had a deep skin cancer and a premalignant colon cancer removed this year. My stamina is not great. I don't "feel well" and I think that my body is beginning to break down. It has gone through 10 years of a lung disease, 8 years of prednisone, 7 years of Imuran, my liver is enlarged, I have high pressure in my eyes, I have the beginnings of pulmonary hypertension and so many other smaller issues.

Infections, pneumonia, a problem during a procedure or other issues may bring the grim reaper to my door. I worry that something will happen that will not allow me to proceed with lung transplants when I really need them.

So, what do I do with this new-found realization? Keep exercising, eating well and taking care of myself. But, I now realize that this may not play out as I have been anticipating. It should be interesting ride. Come along.

Saturday, August 3, 2013

Night for Racing

August 17. Barstow to Vegas. Across the dessert. Dirt bikes. One of the most well known races in the country.

Last night, we were invited to a fund raiser for a team who are, once again, taking on the desert. A couple of years ago, they put a "rag-tag team" together and, to everyone's surprise, WON. It is a race that demands a lot of preparation, supplies and money. Last night, they offered food, chances to win door prizes and a pie was auctioned off for $400.00! We hope the team does well!

This weekend is going to be a quiet one to help in recovering from the past two weeks. I'm going to fertilize some plants in the garden, do some banking but not much else. Down time. So hard for me to schedule. Just not in my nature but I have learned the hard way that if I don't, I will get a cold which always goes into a lung infection. Not good.

Friday, August 2, 2013

Updates - Oxygen, Medicare, After Party, Mom

Oxygen update: I now have two tanks of liquid oxygen in my garage. Both small. Both individually not large enough to get me through two weeks. Where did my large blue-topped tank go? I want it back!

Medicare news: It is once again time to prove to Medicare that I need oxygen. This will include four 6-minute walks. Two without any oxygen and two with oxygen with a 10-minute break between each walk. It is a long grueling process which I HATE and I HATE that my medical records are not good enough to prove I still need supplemental oxygen. I crawl home and am exhausted for days afterwards. There is paperwork included that my doctor needs to address so I will arrange it all when I see Dr. K. in September.

Afterwards:  I have found that after I have been crazy busy - like the last two weeks - the time I get sick is the week to ten days afterwards. When my body lets down. Now is that time and I am trying to take it easy, exercise, eat well and get enough sleep. But tonight, we have been invited to fund raiser at the restaurant on the ocean as guests of the owner. We will arrive late and leave early. We are both still recovering from Mary's visit and William's time with us.

Mom: Today, we are going to an eye doctor appointment together then get some lunch before her hair appointment. We were together yesterday before my rehab class and got some Starbucks before a quick run through Home Depot. Rehab went well.

Thursday, August 1, 2013

Need Oxygen

I've been having problems with my oxygen supplier. They changed out my old tank to a sleek smaller one several months ago. The problem was it was too small as I was running out of liquid oxygen before the normal delivery in my area every two weeks. Not good. They would drop off another tank - now there were two tanks! Finally, after many, many weeks, they delivered one tank that, if I was very careful and did nothing extra, would last the two weeks.

The phone rang last evening. It was them. They wanted to come to top off my tank today even though they were here last Thursday. Fine. Okay. I promised to haul it outside to the side of the house. (They usually come when I am at rehab and the tank lives in the garage during the week. I run a long hose through the hose each evening.)

He asked if I liked the current tank. No, I want my other larger tank back. He promised he would bring it. I am certain that the one he will bring will be the smaller version of my old tank. It is not going to last the two weeks. But, I still have hope that maybe, just maybe, a larger tank will appear.

Tune in tomorrow.

I got lots of hugs and conversations with my two favorite kids yesterday. It was so much fun to watch Winnie in her gymnastic class and enjoy Oliver while talking with Natalie. Fills my soul. Also yesterday, I baked the two chocolate cakes frosted with ganache then covered in pralines for the young woman at Michael's work. A birthday surprise. Along with the yoga class and a hair cut, it was a very busy day. I slept well last night!