Living Well with a Bad Diagnosis - Lung Disease

Friday, December 31, 2010

Christmas Aftermath and New Year's Eve

Stax. I must share my latest discovery. We were able to have a fire in our fireplace for the first time in many years. My lungs just could not take the smell of a real wood fire and even the old duraflame logs bothered me.

We tried Stax - found them at Orchard Supply - and we were thrilled that there was no smell. Nothing to bother my lungs or my breathing. We have since bought several cases and had a beautiful fire all day on Christmas. What a treat!

The house is quiet. Too quiet. William and Kimberly returned to their lives in Seattle on Tuesday. Too soon. I thought it was very brave of her to meet all of our family at one time and she handled it brilliantly. Fit right in. They drove home to Seattle through the snow and driving rain. He said it was scary and at one point, the cars around them were all swerving and hitting each other. Somehow, they escaped. He said that it felt good to get home at 2:30AM and fall into their own bed after the thirteen hour drive.

Several years ago, Michael kept putting off removing the outdoor Christmas lights until I finally had enough in July and took them down myself. Since then, we have made a pack to put all of Christmas away on New Years Day. No more Christmas lights in July! So soon, very soon, the house will be back to normal. Kind of sad.

But now I am jumping back into life. I went to rehab yesterday, bought all of our good food for the week and ran some errands including paying the bills.

We are both sleeping so well, though I think it might be a big of exhaustion. The plans for New Year's Eve have been cancelled which is rather a relief. We plan to stay home and have a quiet one. Together. In front of a roaring fire with a glass of good champagne. 

Enjoy ringing in the New Year!

Thursday, December 30, 2010

Creeping Fears

The fear factor is beginning to creep into my subconscious. It must be stopped!

I have been accepted into the liver clinic and have an appointment next week. My liver still is swollen and sore, though less so after the latest run of antibiotics. My worry is whether this is a blip that will be handled with medication or is this the beginning of a new chapter. The beginning of a house of cards falling – liver problems beget pancreas problems begets kidney problems etc.

It appears that the liver problem is probably caused by the long-term use of the immune-suppressant drugs that have kept me mostly stable these past six years. They are major drugs that have to do some damage somewhere. Guess they attacked my liver. Or, my liver is fighting back.

Am I going to be weaned from the drugs to give my liver a break, 
which will put my lungs into jeopardy? 

Will I need additional medication to help the liver process the drugs?

I am also worried that I seem to need more oxygen during the day. Is this just a blip or am I going to have to carry and wear oxygen with me everyday?

Am I going to have to again adjust and try to keep moving forward?

My goal has always been to not worry until I have cause to worry. Sometimes that is easier said than done. 

Wednesday, December 29, 2010

Progressive Christmas Dinner

One morning over coffee, we were talking about our favorite Christmas. Both of us agreed that it was during a time before William was born. My sister Lee was still married to her first husband Hal and they lived in the same town as his parents and very close to my parents. We were living in our first house here on the coast.

Each year, we would meet at noon for appetizers at one of our homes. For example, we would meet at Lee and Hal’s, see their tree, have cocktails and hearty appetizers, open all the presents from them, sing around the piano and, several hours later, drive to the next house.

We were next on the stop for soup and salad. And cocktails. And presents. And singing. Then several hours later, we all would drive to my parent’s house for dinner. And cocktails. And presents. Many hours later, we would drive to Hal’s parents for dessert. And presents. And cocktails. And coffee.

Christmas was an all day event. It was fresh and new every few hours and we never got home before midnight. No one had the burden of serving the huge group of people for an entire day. Everyone visited everyone’s house. It was so great.

We both remember a lot of laughing, singing and just having fun. Things changed when Lee and Hal bought a house many miles away then went through a divorce. But, for those few years, we really did have a lot of fun with our annual Progressive Christmas Dinner.

The best of times.

Tuesday, December 28, 2010

Weight Management Group

On Thursday, December 23rd, I was up at dawn to drive to my appointment with the Weight Management Group in the hospital where my dad died. Hate that hospital. Hate that drive. With the holidays though, the traffic was a piece of cake.

While I was in the city, William and Kimberly were picking up the Honeybaked ham, the Busche de Noel, a dozen petit d’fors, the lobster and meat for the Beef Bourguignon.  Michael spent the morning and into the afternoon driving the 100 miles out to pick up my mom and another 100 back to our house. At the same time, the housekeepers arrived to clean the house.

What a day!

So, I met with the nutritionist with the list of my medications, our family’s medical history, my cookbook I have been cooking out of for the past year, one of our paper plates to show the size of our plates and hope.

The hope is that they will tweak my diet so I can lose weight. We eat so well. So cleanly. Such small portions. What am I doing wrong?

The nutritionist explained to me how my body is processing food compared to other people. He said that with most people, weight is a manner of physics – food in, energy expended equals weight loss or gain. Simple. Not so for me. Any kind of sugar or carb processes totally differently because of the prednisone. It goes right to fat. That drug also drives up blood sugar and he was shocked how my body has been able to manage it. I have no diabetes. Thinking that all the rehab exercise I do keeps it a bay, he said that was not so and that it really is my body managing it on its own.

We reviewed the food I had eaten the previous week and I learned that I have to let the whole grain pasta and bread to once again leave my diet. Also, goodbye to yogurt, starchy vegetables and all fruit. He said that with plenty of water, I will release a ton of fluid that my body is holding onto and should be 10+ pounds lighter when I see him again at the end of January. He set my  target calories at 1,200 per day.

He also wanted me to see a specific doctor to talk about a three-month diet of protein shakes and bars to get the weight off quickly to begin the process of lung transplants. It would have to be monitored very carefully due to some of the drugs. He said that I would lose 30-40 pounds within the three months then would graduate to a low carb diet.

I made an appointment to see him and his recommended doctor next month. When we were alone, Michael asked how the appointment went and I replied that for the first time, I felt hopeful.  

It was a good day.

Monday, December 27, 2010

Christmas Review

I hope everyone had a wonderful Christmas surrounded by loving family and friends. We had a great time. The house was full of people, tables were laden with food, champagne cocktail prepared everyone to sing together and Santa had left too many gifts.

The French Christmas was a true success. I could not have done it without William. We prepared the fifteen French luncheon items and presented them at noon after everyone arrived.  Later, the table was cleared to the clean tablecloth underneath the top one, reset for dinner along with the famous British crackers full of silly paper crowns and toys. The Beef Bourguignon was the best I had ever made – took 7 hours! – and was a success.

We all sat for a couple hours afterwards and just shared many family stories.

We visited Lori and Dave on the 26th and enjoyed the evening with them. Nice to have such good friends.  Kimberly and William will be here for the next day or so before returning to Seattle. It is going to be an empty quiet house soon.

It was a really good Christmas for us. I hope it was the same for you.

Sunday, December 26, 2010

Favorite Christmas Present

What was you’re the Christmas present that you will never forget? The thrill of Christmas that made you understand the magic of Santa and the season?

I asked Michael this question over coffee. His eyes lit up. When they were little, they had just moved out of the projects into a house behind where his mom worked. They were very little. Five kids. Single mom. No child support. No money. Christmas.

Their father’s parents in Illinois had sent new bikes for all five kids for Christmas. He said it was magic. A bike. A new bike. In those days, the bikes were like the ones Pee Wee Herman is known to ride. Michael’s was red.

Taking off on his new bike was his very first taste of real freedom. It could take him anywhere. And it did.

What was your favorite present ever?

Saturday, December 25, 2010

The Merriest



The most Merriest of Christmas to one and all.


Enjoy your family and friends.

My very best wishes to everyone.

Friday, December 24, 2010

No Room at Our Inn

Our son William is home. All is right with the world. Though he and Kimberly fought to drive through severe weather from Seattle, they are now safe and warm. And well fed.

I bought all the food for Christmas Wednesday morning and am hoping that the power remains on through the rainstorms!

Wednesday evening, we all went out to eat some fresh fish on the coast at an East Coast style Lobster Shack. We shared two roasted sardines, Ahi Poke, Clam Chowder, and Seafood Spaghetti in a spicy red sauce. Kimberly and William also shared a Beet Salad and the famous Lobster Roll with its 1.25 pounds of lobster in cased in a buttery roll.

They loved it.

We were able to just sit and talk without having to cook or clean up. Fun to get caught up to speed.

Thursday began the Christmas madness. While I was at the Weight Clinic in the morning, Michael went out to pick up my mom while William and Kimberly Christmas shopped in the city then picked up the meat, lobster, ham, and dessert for Christmas. We all arrived home to a clean house. Love the housekeepers.

Last night, we began to cook. The Beef Bourguignon took seven hours to complete and the majority of the cooking will happen today. All day. I will send Michael and William out this afternoon to buy five Dungeness crabs fresh off the boats in the harbor for dinner tonight. 

We are almost there. I hope your houses are filled with the sights and smells of the season!

Thursday, December 23, 2010

Levaquin

The super drug. The antibiotic I am taking for two weeks after the discovery during my visit to the Acute Care clinic that I still had an upper repertory infection despite a full run of another antibiotic.

This should knock it out but it is not without costs. To read all the side effect is terrifying. The scariest one is a tendon problem. I can’t afford not to do my rehab workouts for several months recovering from a snapped tendon.

It is also very expensive.

Last week, I went to the rehab class and told them I was on the drugs. Alyson was not there and the other RN allowed me to workout. She also shared that how the tendon can be snapped is by doing something unusual. She said not to hop off of a curb or run up the driveway or do anything different and I would probably be fine.

When I returned on Tuesday, I knew I was going to be yelled at for working out with a lung infection and having Levaquin on board. The tendon problem can actually be a possibility well after using the drug. Am I supposed to not workout for months?

Well, Alyson did not mention anything though I plied her with a bag of Sugar Glazed Walnuts and a gift card for Christmas. That may have helped!

Wednesday, December 22, 2010

Bug Under Glass


Two years ago, we were wandering through Chinatown on our way to a Dim Sum lunch with William and my mom. She and I stopped to buy some great jewelry and we loved looking at all the exotic stuff in the windows.

Days afterward, William mentioned that he loved the large piece of resin where someone has artfully arranged a variety of weird bugs that were prominent in many of the windows. As we always have a hard time finding something for him at Christmas, I asked if he REALLY liked them. Yes, he said. Over a month later, we found ourselves retracing our steps to no avail. They were all gone or sold or whatever. They were nowhere to be found.

This year at the local Pumpkin Festival, there was a booth selling large bugs mounted under glass. We looked at each other. Michael said, “You have to buy one.”

And we did though it was not cheap. It was just over $100.00.

We bought him a Rhinoceros Beetle from Thailand. They are the strongest creatures on earth and can carry 800 times their own weight. Some think they had to become strong in order to dig through the heavy litter on the jungle floor to safety. Males have horns. This one is a male. With it’s wing span, he is approximately 5”x5”. Creepy.

He will love it.

Tuesday, December 21, 2010

Reminder Not to Whine


I was at the other rehab on Monday. It had been a hard day and it was only 8:30AM. My liver hurt so much that morning, the car was out of gas, my computer had just crashed, there was no food in the house, I had to call the liver clinic, I didn’t get some medication I had ordered through the mail and was running out, Michael was still not well, traffic was a mess, I had a long list of things that I had to get done including yard work and I was already tired.

A bad day.

While working out on the arm bike, I was chatting with a woman I had seen but never have really met before. Within minutes, another woman stopped by to chat. For conversation, I half-laughed and said I was having a hard day: no gas, computer crashed and my liver hurt!

They asked about my oxygen and gave them the short version of what is wrong with my lungs.

The second lady was very polite, we chatted a few more moments then she turned to her friend. She told her that her mother had died and her sister was just diagnosed with breast cancer.

And I was whining about a computer crashing.

I apologized to her about whining, offered my condolences, gave her a hug then headed to the recumbent bike.

It was a very clear reminder to me to quit whining. I am alive. I am upright.

I am still in the category of the living. 
Well. 
With a bad diagnosis.

Monday, December 20, 2010

Nutty Christmas

Need a quick and easy gift to give to friends, co-workers, neighbors, teachers or even parents? For over 25 years I have made the most amazing Sugar Glazed Walnuts, which I put into decorated cellophane bags and hand out as presents.

My mom is the first in line. She loves them and shares them with her friend Peg. It has become a tradition.

So, here is the recipe. Share it with others.

Sugar Glazed Walnuts

½ cup butter
1 cup brown sugar – packed
1-teaspoon cinnamon
1 pound of walnut halves

In a 1-1/2 quart casserole, melt the butter in the microwave for a minute or so. It should be bubbling. Stir in the brown sugar and cinnamon and microwave on high for 2 minutes. It should be bubbling. Add the nuts and stir to combine. Microwave on high 3-5 minutes stirring once. Spread on waxed paper to cool.


Sunday, December 19, 2010

Lab-Grown Lungs



I was in the eye doctor’s off last week with nothing to read. I picked up an old Time Magazine dated November 22, 2010. This issued featured “The 50 Best Inventions of the Year.” I was so surprised while flipping through this section to discover that one of their named inventions was “Lab-Grown Lungs.” Yes, lungs. There was even a photo - see above. A copy of the article is here: http://www.time.com/time/specials/packages/article/0,28804,2029497_2030617_2029715,00.html

We first discussed this possibility in my blog dated Monday, October 11, 2010 if you want further background information.

It is amazing to see a photo of a rat’s lung that has been grown in the lab. The hope is that one day a person will have lung cells removed, new lungs will be grown in a lab using those cells then those new lungs will be transplanted back into the same person. There would be no need for anti-rejection drugs because the cells are not from a foreign body.

Simply brilliant!

How soon will we see this in humans? If all the trials go well and the technology and the science holds up, maybe in our children’s lifetime. Or their children. In any event, it is forward movement to new science frontier.

Saturday, December 18, 2010

Decorated for Christmas



We are finished. We have decorated both trees, put out all the decorations and the outside lights and filled the house with poinsettias. We are ready. Well, almost.

It took a bit of work last Sunday. As we are both not well, we would do a bit of work then take a rest to gather our strength. There was a lot of moaning and coughing going on.

I think our biggest Christmas wish is that we both feel better for the holiday. But there is still much to do.

Every year mom gives each of us some money, we buy what we want, wrap everything up and put it under the tree. On Christmas, we open everything and exclaim, “It is just what I wanted!” Well, we had not finished that shopping yet. We went to the big mall after dinner on Thursday. Michael had not even begun to spend his money. Before hitting the store, we stopped at Max's and he had a cocktail to help him enjoy the event even more. I swear we were actually in the store for less than 30-minutes. Done! He is quick!

The countdown to the holiday has begun. We are limping to the finish line!

Friday, December 17, 2010

The Salvation Army

This time of year, we never pass the Salvation Army's red bucket without dropping a large bill into the pot.

First, when Michael was little and living in the projects, they were the people who made sure there was food in the house. They are the people who came by to be sure the children had clothing.

In fact, because of them, Michael was first exposed to life outside of the projects. They arranged for a group of kids from the projects to go to a Christmas party hosted by a sorority at Long Beach State. He remembers being in a large room with a Christmas tree, Santa Claus and a present for each kid. But what changed him forever was that these people were different. The room was so different from anything he had ever seen. He realized that there was something else “out there” that he wanted to be part of. That is what was the impetus for him to escape to northern California many years later where he immediately met me.

He said that in the projects, he had been surrounded by three generations of families living on the welfare system. After his family moved out, he only knew people who worked for public agencies. He never met a small businessperson. He never met a person who had an idea and created anything. He never knew people who worked with their hands. They all worked for public entities.

He loved the idea that he could work hard and become anything. No one had ever told him that. Ever.

Secondly, after we sold our first house, we lived with the twin and his first wife for a month while our current house closed escrow. There was a horrific rainstorm, the creek overflowed its banks and flooded the town. We were evacuated at 11:00 at night by the fire department. During the recovery period, the Red Cross set up in a school away from the fray. They did nothing. The people with the Salvation Army knocked on doors, handed out cleaning supplies for the flood damage, brought by free lunches and refused payment of any kind.

They are in the trenches. They are making a difference. They made a huge difference in one little boy's life.

Please, put a little something in the bucket. 

Thursday, December 16, 2010

Christmas Menu


Christmas 
Featuring Food From France
December 25, 2010

Hors D’Oeuvres and Charcuterie

Anchoiade – Anchovy Paste on Baguette

Andouille Sausages

Artisan Salumi

Brie with Grapes and Water Biscuits

Camembert and Walnut Pate on Baguette

Crudites a la Rouille – Vegetables with Red Pepper and Garlic Mayonnaise

Escargots a la bourguignonne

Garlic Prawns

Mushrooms a la Grecque

Pate de Fois Gras on water Biscuits

Quiche Lorraine

Salmon and Avocado Terrine

Seafood (Lobster, Crab, Scallops, Prawns) Poached with Herb Aioli

Snails in Garlic Butter

Tapenade on Toasted Baguette


Supper

Boeuf Bourguignon

French Bread

Dessert

Bushe de Noel


Our French Christmas is coming together. William and I have been in contact with each other to discuss the various menu items. We have put together a menu for the day.

Again, our family researches and makes food from different countries or areas for Christmas each year. It makes it more interesting. In the past, we have had wonderful grandma-style food from Germany, Greece, Spain and food from New Orleans and Hawaii just to name a few. It has been fun.

This year, it is France. So with the help of an authentic cookbook, we are serving a buffet/appetizers at noon on Christmas, a supper around 6:00 and breakfast the next morning for nine people.

This is going to be a lot of work. I could not do it all without the help of William. He is a really good cook and knows his way around a kitchen. We work well together.

We are buying a Honeybaked Ham for dinner on December 23rd with my mom, William and his girlfriend Kimberly. What a treat. It will also be served fried with some eggs for breakfast the day after Christmas before everyone heads home. We are also buying Dungeness crabs on Christmas Eve for a massive, messy crab feed while waiting for Santa. Everyone else comes on Christmas Day.

So my days have been busy buying the needed tablecloths, cookware for the snails, gathering and shipping presents to faraway family, setting the buffet table, doing research on the champagne cocktails, finding the French wines to be served with dinner and making lists. Lots of lists. Everything is broken down to food shopping lists, lists of what is to be prepared on certain days leading up to Christmas, lists of what needs to be picked up when, lists of presents to be bought and lists of lists. Just kidding about the last one.

I hope we are able to get healthy before it all begins. I still have a cough along with the swollen liver and Michael is barely upright. The two trees are trimmed, the outside lights are up and the dozen poinsettias are placed around the house.

We’ll make it to Christmas. Slowly but surely.

Wednesday, December 15, 2010

Haunting Death

Last week, a coroner in California contacted Michael’s niece Valarie, who we visited in Knoxville during our cross-country trip in May of ‘08. Her father had died. She had been searching for him the past two years. He had lung cancer, diabetes, high blood pressure and a few other problems. He was 57 years old.

Steve was living in a boarding house across the country from her. He had lost everything. He would be somewhat stable for years even with drug and alcohol abuse but still was somehow able to keep a job. Smoking dope everyday for decades does nothing to help ones health – physically or mentally. He liked to get stoned and watch porn. Not the best of men. Not the best dads. The older he got, the harder it was to maintain a job. Finally, he was fired and his condo was foreclosed upon and sold. The final downward spiral began.

This so explains the horrible childhood Valarie had with both parents involved in such a negative life-style until she had a baby and moved away. She found a group of people in Knoxville who gave her the stability she had never experienced before. She grew up quickly and became a hard working mom. Her son is amazing. After awhile, she invited her mother (Michael’s sister) to join her. They have cobbled a healthy lifestyle together and are very happy.

After he lost his job, Steve decided to visit them before his car was repossessed. He tried to move in and use them. He tried to bring drugs and porn into their house. They stood up to him and threw him out. That was Valarie’s last contact with her dad.

She is so struggling now because there will never be any settling of her relationship with him. He is gone.

My hope is that he is able to find the peace in death that he was never able to find in life. 

Tuesday, December 14, 2010

Just a Little White Lie


I did it. I lied to William.

He and Kimberly are coming to stay with us a week at Christmas and I had a brilliant idea. I wanted to buy him an iPad as his present and blow him away. The problem is I didn’t know if he wanted one or already had bought one.

The con was on. I phoned and told him I needed advice. Said I was thinking about buying an iPad for his dad. What did he think of them?

I learned that he had never touched one though he said the woman he was on tour with had one that never left her side. He mentioned that he would not get the 3G and was thinking of buying one before the big tour with the big group in March. He said he would mostly use it for movies or books.

YEAH! He wanted one. I told him not to buy one until he played with his dad’s on Christmas.

So, I think he was telling me is that he was going to wait for the new ones coming out in February. Heading to the Apple Store, I bought the black folder for the iPad. For his present, we will slip the money in cash into the folder with a note to buy the one he wants now or wait until the new model comes out next year. His choice.

Ha! Won’t he be surprised when he opens it up on Christmas Day and realizes that his old mother can still surprise him!

Monday, December 13, 2010

Misdiagnosis of Lung Disease

I have learned so much talking with other people with lung diseases. I have learned so much about the more rare lung diseases like Idiopathic Pulmonary Fibrosis (IPF) and other Interstitial Lung Diseases (ILD). What is common in these conversations is the misdiagnosis of these rare lung diseases. This can be deadly as people with IPF have a live expectancy of less than 3 years after contracting the disease. Some may never be diagnosed properly and die without knowing the cause.

Since the most common lung diseases are asthma and emphysema that is what the family doctors are accustomed to seeing. The average doctor will never see one of the rare lung diseases during their entire career.

I was misdiagnosed as having exercise-induced asthma for five months and, if I had not taken charge, would be dead because of it.

My family doctor at the local clinic decided with little thought that I had exercise induced asthma after learning my symptoms and reading my chest x-ray. My symptoms were not being able to inhale, being short of breath and coughing on exertion. He did mention that I had very small lungs in the x-ray and he even had a pulmonologist read them.

He prescribed an inhaler to be used just before exercise. There was no improvement. I went back to see him. He said to use the inhaler twice a day. Nothing. I returned again two weeks later. He said to use the inhaler three times a day. No improvement. Added another inhaler along with the first inhaler. Nothing. In fact, I was actually getting worse. Three months went by.

FIRST CLUE: People with fibrosis or ILD have lungs that get smaller as the scars in the lungs form scabs making them stiff.
SECOND CLUE: People with and ILD have difficulty inhaling. People with COPD or one of the more common lung diseases have difficulty exhaling.
THIRD CLUE:  People with an ILD have no relief or improvement using inhalers.

The doctor missed all the clues.

Finally, I called my endocrinologist who was a parent at the school where I got sick. He wrote the letter for me to be seen at the chest clinic two months later and the rest is history. I do need to mention once again that when I finally saw the wonderful doctors at the clinic, my first DLCO in the Pulmonary Function Test was 7.7. They transplant when it falls to 7. I also was functioning with no supplemental oxygen and was extremely ill though still working full time. I am so surprised that I survived all.

Had I continued on much longer, I would not be here now.

Sunday, December 12, 2010

Winnie at Four

My friend Winnie turned 4-years old this week. I just can’t believe it. I left the school where I got sick before Natalie was pregnant with her and suddenly she is so old! The years have flown by.

When I am really struggling with some bad health news, I need a visit from Winnie to put my fears back into perspective. She reminds me of the goodness and the joy of life. She is a gift.

We met at a restaurant the day before her birthday because Michael was so sick at home. She made sure that I understood that her birthday was not for another day but she was still willing to open her presents early. The hit of all the gifts was the card.

Winnie loves Superman. She has seen all the movies. She quotes the dialogue. Michael found a Superman card that, when opened, plays the theme. She was entranced. She looked at me and said, “That is really good.”

Made my day.

What was so sweet was that an older woman next to us was having a birthday luncheon with her adult grandchildren. When the cake and candles arrived, Winnie joined in the singing. Afterwards, she told the woman that her birthday was the next day. The lady chatted with her for a bit then it was time for us to go. Winnie stopped by her table and said with great sincerity, “Happy Birthday.” I thought the lady was going to cry she was so touched.

I would love to think that I will be alive long enough to see what this little girl does with her life. It is sure to be as spectacular as she is already.

Saturday, December 11, 2010

Pain, Tests and Doctors

I spent the entire afternoon and into the evening yesterday at my university hospital. It was not fun. I had been having pain just under my right ribs. It had become more swollen and the pain moved slightly to the right.

I noticed it a week ago while pulling some weeds in the garden. Something was there. Yesterday while I was working out at the other rehab, I had to cut back on my time on the treadmill because of the pain. I cannot afford to neglect any of the rehab. On the way home, I hit a small pothole and said, “Ouch!” out loud. Clearly it was time for someone to look at this.

So, I headed to the acute care walk-in clinic at the university hospital.

The intake nurse did not listen to me and sent me up for an x-ray. While there, I was able to have the tech take an x-ray lower and to the side where the pain was, not just my lungs.  When I returned to the clinic, the doctor examined me and told me that I had a swollen liver.

Liver?!? What?!?!

  1. I never smoked and I have a lung disease.
  2. I never did cocaine and I have a disc in my nose because my disease has a sinus component that was exacerbated by the cannula for supplemental oxygen use.
  3. And now I have a liver problem and I don’t drink. I have never liked alcohol and felt that it just didn’t agree with me.

Life is not fair!

First, I went to have blood tests. Then, off I went on a shuttle to another hospital where I had an ultrasound then caught another shuttle back to the hospital where Michael was there to greet me. He had gotten a ride up to be with me.

I am the luckiest woman in the world to have the love of this one special man.

After all the tests, the doctor thinks it may be swollen from the recent infection or one of the medications. Funny, my non-drinking brother had just been told that he, too, had a fatty liver. My doctor also thinks there might be a gall bladder issue but there was no proof today. Gallstones don’t always reveal themselves in an ultrasound. My dad, mom, brother and grandma all have/had gall bladder problems. She also mentioned that all of my blood tests looked normal. For a sick person, my numbers were great.

Also, being overweight does not help and if I lose weight it will actually help the liver to settle down. So I am happy that I have my appointment with the Weight Management group just before Christmas.

She also said to avoid dairy – I only eat yogurt, which I will now stop – and Betty just told me that vitamin B12 is also supposed to help a fatty liver. Couldn’t hurt.

So, no medication. No help for the pain. But I did get a referral to the liver gurus who will do further tests. She also said that I would probably be put on more medication….Whoopee. Just what I need. More drugs.

Friday, December 10, 2010

Sudden Caretaker

My role changed last week. I became the caretaker of Michael as he suffered through the flu. I was really worried about him as he was the sickest I have ever seen him. The six days of fever and the horrible cough seems to be running its course according to the doctor. Nothing else they can do for him.

My job was to try to get some food into him. He just couldn’t eat. So, I made pots of soup and scrambled lots of eggs. That is about all he would eat.

After a few days, I encouraged him to come into the family room and sit up for a couple of hours a day. While there, I would fluff the bed and freshen it up a bit. He would moan climbing back into it because it felt so good.

When his fever broke after six days and another few days of recovery, I was finally able to sleep in my own bed. I moaned!

Now he seems to be on the mend. Maybe. I am worried that he will jump back into life too soon and the fever will return. He is leaving the house for the first time today. 

I feel compelled to comment here that he decided not to get a flu shot this year as:
1. He has never had the flu.
2. His friend got the flu from the vaccine.

Even after I explained that his friend may have had some symptoms of the flu for two days after the vaccine, he did not have the flu. I told him that he is putting my health at risk as I would probably not survive the flu. He didn't find the time to get a vaccine. So, it has been a scary time. I have tried to be very careful but I think, so far, the vaccine has prevented me from being infected. Thank goodness. 

Also, during every phone call while he was feverish, he told every person to get a flu shot and that he would never miss another one. Ever. Lesson learned.

As the sudden caretaker, I am thrilled that he is well enough to remove me from that role. It has given me insight to the responsibilities he feels about my health. It is a tough role. 

I am so grateful that he is on the mend.

Thursday, December 9, 2010

Coalition for Pulmonary Fibrosis - Year of the Lung 2010


I have written in the past about this organization – Coalition for Pulmonary Fibrosis - who are a very focused and smart group working to bring awareness and funding for research of lung diseases to the forefront. They do a spectacular job.

They are now working on House Resolution 1122 which is before Congress right now. It is to make 2010 the Year of the Lung. It calls for the increase of awareness of all lung diseases including COPD and fibrosis.

They ask that everyone contact their representatives. Here is the suggested dialogue from their e-mail to me:

Please contact your Representative by calling 202-224-3121. Ask for your House Representative's office or give your 9-digit home zip code if you do not know their name. When you get through to the office, ask for the Health Legislative Assistant.  The following is a sample message:
“I thank Rep. _____ for his support of lung disease health and research issues.  The ATS and the Forum of International Respiratory Societies are celebrating 2010 as the Year of the Lung. I would like to ask Rep. ____ to cosponsor the Year of the Lung Resolution, H.Res. 1122, sponsored by Reps. Lewis (D-GA) and Stearns (R-FL).  As a ____ [patient/family member/caregiver], I understand the impact lung disease has on a patient and family. The resolution simply seeks to raise awareness about lung diseases such as Pulmonary Fibrosis, COPD, asthma, and tuberculosis and calls for more research funding into these diseases. Thank you very much for your consideration.”

If you or family members are struggling with a lung disease, this organization is a major resource. It you can financially offer your support, that would be wonderful. Here is their website:

Here is the resolution:
RESOLUTION 
Supporting the goals and ideals of the Year of the Lung 2010.
Whereas millions of people around the world struggle each year for life and breath due to lung diseases, including tuberculosis, asthma, pneumonia, influenza, lung cancer and chronic obstructive pulmonary disease (COPD), pulmonary fibrosis, and more than 8,100,000 die each year;
Whereas lung diseases afflict people in every country and every socioeconomic group, but take the heaviest toll on the poor, children, the elderly, and the weak;
Whereas lung disease is a serious public health problem in the United States that affects adults and children of every age and race;
Whereas lower respiratory diseases are the fourth leading cause of death in the United States;
Whereas the economic cost of lung diseases is expected to be $177,000,000,000 in 2009, including $114,000,000,000 in direct health expenditures and $64,000,000,000 in indirect morbidity and mortality costs;
Whereas nearly half of the world's population lives in or near areas with poor air quality, which significantly increases the incidence of lung diseases such as asthma and COPD, and more than 2,000,000 people die prematurely due to indoor and outdoor air pollution;
Whereas tuberculosis, an airborne infection that attacks the lungs and other major organs, is a leading global infectious disease;
Whereas no new drugs have been developed for tuberculosis in more than 5 decades and the only vaccine is nearly a century old, yet there were 9,400,000 new cases in 2008, and this curable disease kills 1,800,000 each year;
Whereas an estimated 12,000,000 adults in the United States, are diagnosed with COPD, and another 12,000,000 have the disease but don't know it;
Whereas COPD kills an estimated 126,000 people in the United States each year, is currently the fourth leading cause of death in the Nation, is the only one of the 4 major causes that is still increasing in prevalence, and is expected to rise to become the third leading cause of death in the United States;
Whereas lung cancer is the second most common cancer in the United States and the most common cause of cancer deaths;
Whereas the leading cause of lung cancer is long-term exposure to tobacco smoke;
Whereas about 23,400,000 people in the United States have asthma, a prevalence which has risen by over 150 percent since 1980;
Whereas asthma is the most common chronic disorder found in children, with 7,000,000 affected;
Whereas flu and pneumonia together are the eighth leading cause of death in the United States;
Whereas about 190,000 people in the United States are affected by acute respiratory distress syndrome (ARDS) each year, a critical illness that results in sudden respiratory system failure, which is fatal in up to 30 percent of cases;
Whereas about 75,000 people in the United States die as a result of acute lung injury, a disease that can be triggered by infection, drowning, traumatic accident, burn injuries, blood transfusions, and inhalation of toxic substances, which kills approximately the same number of people each year as die from breast cancer, colon cancer, and prostate cancer combined;
Whereas of the 10 leading causes of infant mortality in the United States, 4 are lung diseases or have a lung disease component;
Whereas pulmonary fibrosis (PF) is a relentlessly progressive, ultimately fatal disease with a median survival rate of 2.8 years that has no life-saving therapy or cure;
Whereas more than 120,000 people are living with PF in the United States, 48,000 are diagnosed with it each year, and as many as 40,000 die annually, the same as die from breast cancer;
Whereas the cause of sarcoidosis, an inflammatory disease that occurs most often in the lungs and has its highest incidence among young people aged 20 to 29, is unknown;
Whereas 15 years ago, people with pulmonary hypertension lived on average less than 3 years after diagnosis;
Whereas new treatments have improved survival rates and quality of life for those living with this condition, but it remains a severe and often fatal illness;
Whereas Lymphangioleiomyomatosis (LAM), a rare lung disease that affects women exclusively and is also associated with tuberous sclerosis, has no treatment protocol or cure and is often misdiagnosed as asthma or emphysema;
Whereas Hermansky-Pudlak Syndrome, a genetic metabolic disorder which causes albinism, visual impairment, and serious bleeding due to platelet dysfunction, has no cure and no standard of treatment;
Whereas children's interstitial lung disease, a group of rare lung diseases, has many different forms, including surfactant protein deficiency, chronic bronchiolitis, and connective tissue lung disease, and is thus difficult to diagnose and treat;
Whereas the Centers for Disease Control and Prevention estimates that 50,000,000 to 70,000,000 adults in the United States suffer from disorders of sleep and wakefulness;
Whereas insufficient sleep is associated with a number of chronic diseases and conditions, including diabetes, cardiovascular disease, obesity, and depression;
Whereas the average cost of treating severe COPD is 5 times higher than treating mild COPD;
Whereas the appropriate medication and disease management of asthma can reduce health care costs, including hospitalization, emergency room visits, and physician visits, by half;
Whereas the flu vaccine can prevent 60 percent of hospitalizations and 80 percent of deaths from flu-related complications among the elderly;
Whereas advances in medical research have significantly improved the capacity to fight lung disease by providing greater knowledge about its causes, innovative diagnostic tools to detect the disease, and new and improved treatments that help people survive and recover from this disease;
Whereas there is no cure for major lung diseases including asthma, COPD, and lung cancer;
Whereas chronic lung diseases are a leading cause of death and yet the quality of palliative and end-of-life care for patients with chronic lung disease is significantly worse than patients with other terminal illnesses;
Whereas the National Institutes of Health, through its many institutes and centers, through basic, clinical, and translational research, plays a pivotal role in advancing the prevention, detection, treatment, and cure of lung disease;
Whereas the Department of Veterans Affairs is actively engaged in research in respiratory diseases that impact the Nation's veterans;
Whereas the Environmental Protection Agency establishes air quality standard and enforcement programs to ensure the quality of the air we breathe;
Whereas the Centers for Medicare and Medicaid Services, provides essential health insurance benefits for millions of patients with respiratory disorders;
Whereas the Centers for Disease Control and Prevention, through its many centers and programs, provides valuable prevention and surveillance programs on diseases of the lung;
Whereas an international collaboration of medical professional and scientific societies is working to enhance the general public's understanding of respiratory diseases, their causes, prevention, treatment, and impact respiratory disease play in human health; and
Whereas the initiative, The Year of the Lung, seeks to raise awareness about lung health among the public, initiate action in communities worldwide, and advocate for resources to combat lung disease including resources for research and research training programs worldwide: Now, therefore, be it

Resolved, That the House of Representatives supports the goals and ideals of the Year of the Lung.