Living Well with a Bad Diagnosis - Lung Disease

Sunday, October 31, 2010

NieNie Dialogues

As I have mentioned before, I read several blog every morning. I have learned so much from each woman, whom I have never met. One of them is NieNie. She was in a plane crash and was horribly burned. You may have seen her on Oprah.

I was reading her October 22nd blog on her site - http://nieniedialogues.blogspot.com/

She wrote about her favorite hike up the Y. She is just becoming strong enough to begin to hike it once again. Her sister Page told her that she would go with her but at their different paces. She was not happy realizing that her pace would have to be slower. She is working hard to heal her skin grafts and to keep the skin flexible. Her knees are even beginning to bend.

So, here is what she wrote.
Tomorrow is yoga. I am so excited. I want to push it and work it as hard as I can, to be at the level I was before the crash-and even better. I have different knowledge this time around. I know that bodies are incredible no matter what they can do.
They can heal us if we truly listen and let them,
so I am going to listen and then beat Page up to the "Y".

I paused a moment after reading this. It is exactly how I feel. It is what drives me to work so hard in pulmonary rehab five days a week. I still feel my body is trying to heal itself even though I know that the damage to my lungs is permanent. Maybe if I work a bit harder or longer… It is the maybes that keep driving me forward.

Saturday, October 30, 2010

Ice Storms



We had our first rains of the season last night. Rain! Easy! Nothing was worst than an Illinois ice storm. The entire area came to a halt. Because ice would form on tree branches and power lines, eventually both would break due to the weight of the ice taking out the power. We would have no electricity or heat for many days.

I remember one particularly bad storm. We had been without power in the house for days and food was running low. We placed the last of it in a chest on the front porch to keep it from spoiling. We cooked hot dogs in the fireplace. We slept in layers of clothing under many blankets and comforters.

As a child, it was a big adventure. As an adult, it must have been terrifying wondering if a tree branch would come through the roof or if the water pipes would burst.

After a few days, the Witorts sent one of the kids around to the neighbors inviting everyone over. They had a generator. They had heat in one room. They had food.

I remember sitting in their front parlor, which we had never been allowed to even pause in front of on our way to the basement to play. It was warm. It was filled with kids and their parents. It was a kid’s dream. We had a blast playing together all day.

Eventually, it all ended when the power came on.

I loved my childhood but I am so happy not to have to live through another Chicago winter! Give me rain!

Friday, October 29, 2010

School Parents Sudden Reunions

I worked at the school where I got sick for almost 16 years. I knew a lot of kids during that period. I knew a lot of families. The past several days, I have run into several former parents from the school.

It was uncomfortable. They loved the school, as I did, and paid a huge amount of money there for their children’s education. They don’t really want to hear anything bad about it.

But, they asked how I am feeling.

What do I say?

So, I made it clear that I am very ill, that it is fatal and that I won a large settlement in the Workmen’s Comp lawsuit. They were shocked. They never knew what happened to me. There were rumors and one mom just told me that when people asked the Head about me, they were told that she could not discuss it.

One child said they were told I had cancer.

There was never a goodbye. There was no letter home to the families. I just disappeared.

It is just so odd that suddenly I am facing these parents for the first time who are still in contact with the other parents from the school. Maybe the truth of what happened to me will finally be exposed. If you are new to the blog, read the blogs posted in October 2009 for the full story. It is an amazing tale.

The school – Head and Board of Directors – should be ashamed of themselves.

Thursday, October 28, 2010

The New Rehab Center



Yesterday was my first day at the new rehab center where I will be working out on Mondays, Wednesdays and Fridays. An old building revamped. It was interesting, to say the least.

Parking: There is a small lot for approximately 20 cars with two disability spots. I am allowed to park in any of the spaces as long as I display my disability placard. There is a parking lot, which will be available beginning Friday, just a half of a block away. It really is fine. I was very surprised.

People: I arrived with a positive attitude but many of the people around me were not pleased with the changes. Many older people just do not adjust quickly to change and some were a bit confused. I kept reminding people that at least we have somewhere to work out.

Space: Small. About half of the size of the old rehab in the hospital. Here are some photos of the new space.

Employees:  I have heard that they are feeling like second-class citizens. The hospital is a “for profit” facility and there are not huge profits in the rehab department as in others departments like, for example, surgery. There is grumbling. As one PT put it: When they charge a premium price for rehab and the use of the gym even with its minimal space and no extras like a pool or the latest equipment, people will and did flee.

So now the new hospital will have no full rehab facilities on site. Just wrong.

Again, I am happy to have somewhere to work out where RN’s are on duty incase I suddenly need help. 

It is sad that the rehab facilities are not in the new hospital. I have seen the miracle that is rehab and have even experienced a bit of a miracle myself.
 
 Profits before health, I guess.

Wednesday, October 27, 2010

The Johnson's Horse

Writing about the times in Illinois has brought forward so many memories. We were so lucky to live in the country and have the opportunity to wander and feel independent. When mom and dad wanted us home, they would ring a cowbell, which could be heard for miles. It always worked. We always ran home.

There was a family who lived at the end of the street who boarded horses. We  were allowed to ride those horses – without saddles – when we asked politely. We would run them through the open land to the river. We loved crossing the river on a horse. We even rode them through the winter snows. I was always a bit afraid of them as they were so large but Lee and Mary Peterson were much braver.

We lived next door to the Johnson’s. We would secretly visit their horse. We had to make our way through a huge area of brush, cross a former county road and work our way to the back of their property to visit him. They never discovered our visits. We brought apples to him. We made our own bridle. We made plans to ride him.

We got brave one day. We made our way to the horse. He was just huge. Mary and Lee ducked into the paddock. They got the bridle on him. They carefully climbed onto his back. Well, he took off then reared up on his hind legs, which tossed them both off his back onto the hard ground. I was so frightened. Lee and Mary began to scramble. Suddenly, the horse began to dance. Yes, dance. It was almost like a routine buried deep in his brain. We all just stood still and watched in awe.

We later learn that he was a retired circus horse.

We never went near him again.

Tuesday, October 26, 2010

When to Call the Doctor

At the last ILD (Interstitial Lung Disease) meeting, I was rather surprised to see a man in a wheelchair who normally walks into the meetings. He mentioned that he had suddenly gone downhill. The leader of the group was more on the ball than I was as she immediately recognized that something might be seriously wrong for such a quick deterioration.

Quietly, she contacted the ILD staff and suddenly the co-head of that remarkable group appeared and wheeled him away.

Towards the end of the meeting, the leader of our group mentioned that we need to discuss when we should contact our doctors. She said that each of us needs to develop a plan when we begin to notice a change in our health or just not feeling well.

When do you call the doctor?
When do you go to an Emergency Room?
When do you call 911?

At the next ILD meeting in November, this topic will be included in the discussion.

I was always nervous to contact the doctor because it may be nothing and I didn’t want to bother her or be a pest. Bad decision. I have learned that it is wise to keep the doctor in the loop.

So, my plan is that when I realize that I am having a hard time breathing, catching a cold or there is any change, I send a FAX to Dr. K. It is quick and to the point. I always say that if I don’t improve in a day or two, I will contact her again.

Once when I had aspirated, I had not contacted her immediately. Within days, I developed a huge infection and felt horrible. I faxed Dr. K. who immediately phoned. She was concerned that I may have a pulmonary embolism and wanted a CT Scan of my lungs as soon as possible. Other times, she would phone to say that she had ordered antibiotics. I try to make it quick and easy for her.

In a past blog (December 4, 2009) I wrote about aspirating coffee one morning and how Michael did not know what to do. He had not even recognized that I was quickly losing air and ready to pass out. We now have a plan in place. I now know that we really should have called 911 immediately.

What is your plan?

Monday, October 25, 2010

The Weimer's Dogs


When watching ‘The Christmas Story" featuring Ralphie and his family, we all laughed so hard at the Bumpuses horrible hound dogs. In our neighborhood in Libertyville, Illinois, we had the Weimer’s dogs but no one was laughing.

The street we lived on had few houses on acreage on our side of the street while the other side had houses built on smaller plots of land. One of these houses was semi-finished and lived in by a German husband and wife, the Weimer’s. The house was really just a small shell with a flat roof with no electricity. The neighbors often wondered how they stayed warm and dry during the horrible winters. There was some gossip that they were somehow related to WWII and my grandmother was convinced that they were former Nazi’s.

They never had children. They had dogs. They had a pack of dogs. The neighbors were always scared when the dogs escaped their fenced yard. Many a time, I would scramble up a tree to escape their thrashing jaws trying to bite me. Everyone was afraid of them.

Mrs. Weimer had died years earlier when one of the neighbors realized that his curtains were not opened. Apparently, Mr. Weimer would open them every morning and they had not moved in days.

They called the police.

We arrived to the scene on our way home from school. I remember watching a police officer vomiting in their front yard. Mr. Weimer had died in his bed days earlier and the dogs had mauled and partially devoured him. They were all shot by the police as they turned to attack them.

The small plot of land was split between the neighbors on either side and the house was demolished. Erased. It was if they had never existed.

Sunday, October 24, 2010

Adjust and Keep Moving Forward

The other rehab has been on the 6th floor of a hospital with spectacular views out of most of the windows. Another view we have been watching is the building of the new hospital right next door. It is huge and gorgeous. A photo of the new hospital is below.

The bad news is that there will be no gym or cardiac rehab in the new hospital.
What?!?

Yes, dear reader, you read that correctly.

There was outrage and finally it was announced that a new gym/rehab center would be in a small separate building an uphill block away – with no parking available. Interesting. It will be a huge challenge just getting there.

My final day in the old gym was last Wednesday. The old hospital will be torn down in a few months to make room for a new much needed parking structure. It is sad walking though it as all the sign and plaques have been removed. It is feeling ghostlike. Empty. Hallow. Sad.

I will visit the new rehab building for the first time next Wednesday. I hear many people are so upset about the new space that they have moved to other rehab programs in the area.

I am just grateful to have somewhere to workout with nurses in attendance in case I have problems.

So, once again I remind myself of my personal motto:  Adjust and keep moving forward – without whining!

Saturday, October 23, 2010

Childhood Friends



I think when you become ill, your mind takes you back to people and places from your childhood or old friendships. There sometimes may be an urge to try to find someone from the past. I was thinking the other day about my grade school friends in Illinois. When we moved in 1966, I never saw any of them again. I was twelve. So young. I didn’t know how to maintain friendships then.

My best friend was Martha. She would defend me when kids would call me “Freckle-face Strawberry!” As I have thousands of freckles, I hated when that drink came out. How cruel.

She and her family lived in a big old house in sort of a worn down area of town between the noodle and the needle factories. Her parents were lovely and she was very nice and stable. They just didn’t have much.

Her father suddenly died and her mother collected on a huge life insurance policy. They moved into a brand new house in a new pretty area of town. They even threw a surprise going away party for me before we moved to California.

I have tried to find her. Women with their married names are so much more difficult to find than men. I would love to speak with her as an adult. She was so smart and I am curious to know what she has done with her life.

She was such a good friend to a small freckle-faced kid.

Friday, October 22, 2010

Proudest



What are you proud of from your childhood?  What did you overcome? What decisions did you make well? When were you brave?

I think I am most proud that I was brave enough to learn a traditionally non-female instrument. I learned to haul my large string bass with my head held high ignoring all the stares and comments. I was the only girl bass player through high school and college. When I played with the larger orchestra as an adult, the first chair was a woman. There are just a very few of us.

I am also proud that I overcame a severe fear of public speaking as a senior in high school. I knew it was time. I forced it. I grew to love the power of giving a speech and the control over people’s emotions as I spoke. The sweetest success comes from overcoming the most difficult fear.

I forced myself to sing in public. Solo. Alone. Doing so allowed me to meet Michael.

I had a hard time with math as a young student but had an amazing teacher in high school, Mr. Kane. He made it seem so easy. I devoured it and loved it so much that I worked as his aid for two years. I am proud that I fought through the math haze to become a math junkie.

I made most of my clothes in high school. I had a babysitting job every Saturday, which allowed me to buy fabric every Sunday and wear a new outfit to school every Monday.  I felt very self-sufficient. I was proud of my clothes.

But now, I think I am proudest that my instincts told me to eat well and exercise when I got my fatal diagnosis. I am proud that I took control of my life and will not allow this disease to destroy me mentally and emotionally.

As an adult, I am proud that Michael and I worked for everything we own. I am proud of our relationship and that we are facing the future together. I am most proud of our son.

I really have had a wonderful life.

Thursday, October 21, 2010

Gardening with Lung Disease


No rock fountain yet but everything else in the garden is finished. The damage to the patio when the old posts were removed has been repaired. Michael is finishing his metal touches next weekend.

We are happy with how it all turned out. It feels like a bit of paradise.

The most remarkable change is the amount of time I have to spend working in the garden every week. On a normal Saturday, I would spend an average of six hours working on the maintenance, trimming, cutting, blowing and watering of the yards. Six hours!

The past several weeks, even with some trimming and weeding, I spent 1-1/2 to 3 hours. What a difference. I don’t even have to haul buckets of trim out of the back yard. There is nothing to trim!

The bottom line is that this change will allow me to continue working in the garden as my disease progresses. The huge bushes are gone. All the high maintenance issues in the yard have been removed. I will still look silly with my oxygen strapped on my back and long sleeves and a large hat because of the medications, a mask and earphones but I will be out there working. My garden. For as long as I am physically able.
 
We now walk through it together in wonderment. It really looks good. All the new plants are happy. But now suddenly the very front of the front yard looks a bit ragged. Oh no! I feel a new project coming in the Spring. Is a garden ever really finished?


Wednesday, October 20, 2010

Winnie and William


Winnie, my almost 4-year old friend, has never believed that I am a mother. “Whose mother are you?” she would ask.

After telling her about William, she would walk into his room and ask where he was hiding. When I explained that he was older and as tall as her father, she would give me a look that made it clear she did not believe he truly existed.

She finally was going to met him.

In the car on the way to our house, Natalie told her that William was visiting. She responded, “Oh, I have been wanting to meet him.”

She walked right up to him, looked him up and down then asked him why he is an adult. She thought he was going to be her age! 

She warmed right up to him and was her normal precocious self. She even sang a few songs for him. Quite cute and funny.

So, William and Winnie met. At long last.

Tuesday, October 19, 2010

Coalition for Pulmonary Fibrosis



















Several years ago, we were at a symposium about fibrosis and lung transplants. Michael and I shared a table with the women behind the Coalition for Pulmonary Fibrosis.

Since then, I have received their online newsletters and update information. They really push for more research and will do anything to bring the spotlight about fibrosis to the masses including the political arena. In my opinion, they are doing a great job.

These people know what they are doing. Here is their contact information and their web site:
http://www.coalitionforpf.org/

If you can support them, fantastic. Use the information they have gathered to continue your own education about your disease. If they can help find a breakthrough for the treatment for PF, that is the door for the rest of the ILDs to follow through.


From their web site:

CPF Accomplishments

  • Provide education, information, resources and hope for patients suffering from Pulmonary Fibrosis
  • Fund emerging research into new approaches to treat - and ultimately cure - Pulmonary Fibrosis
  • Serve as a national voice for patients and physicians by advocating on their behalf in Washington D.C.
  • Improve detection, diagnosis and treatment of PF in the medical community
  • Increase public awareness of Pulmonary Fibrosis


The CPF's nonprofit partners include the American Thoracic Society, the Anne Harroun Landgraf Foundation, the Caring Voice Coalition, the Genetic Alliance, the Mary D. Harris Memorial Foundation, the National Coalition of Autoimmune Patient Groups, the National Organization for Rare Disorders (NORD), the Pulmonary Paper, the Second Wind Lung Transplant Association, and more than 35 leading medical and research centers nationwide.

Monday, October 18, 2010

Quilting through Illness


Several Christmas’s ago, our son was not with us for the first time ever. It was such a hard Christmas for me. I was feeling horrible and was beginning to wonder if I would live to see another Christmas. 

Suddenly, I felt the strong urge to put things in order. I wrote a simple will. I created a system for my bills and important documents that would be easy enough for Michael to manage. I began telling him where certain things were, what documents from Medicare, Social Security and United Healthcare meant and what to do with everything.

One thing I felt compelled to do was to make something by my own hand to give to William. I wanted to make a small quilt to wrap himself in when I am gone. Like a hug. I wanted to make a quilt to wrap his babies in.

I had made many quilts of various patterns in the past. At one point, all the beds in our house had a handmade quilt on them. Once I began to work at the school, quilt making was put on hold. After I became ill, I returned to the art of quilting and I have made several small baby quilts since I was declared disabled.

A museum exhibit of quilts designed and made by a group of woman in rural Alabama had influenced me. Gees Bend, Alabama. They were superbly “not perfect” quilts. They ranged from quilts made from old overalls to polyester fabrics. They were glorious.

I chose a color combination they used – black and turquoise. Earth and sky. I made a rail fence pattern, sewed it in record time because I really didn’t feel up to it and shipped it off to William. It was very not perfect! I also sewed a little heart hidden in the pattern on the back in one corner.

His girlfriend at the time told me that he didn’t like it. It wasn’t him. I was sad that he didn’t get it. He didn’t understand.

While he was in Hawaii, I drove his car to the grocery store one morning. After shopping, I popped the trunk and there is was. Still in good shape. I was stunned. At least he still had it. I had often wondered if I he had thrown it away.

We have never spoken about it.

Sunday, October 17, 2010

Energy Conservation FAIL



I just want a week of pulmonary rehab and orchestra rehearsal. Nothing more. We have not had a simple week in months. September was crazy with tons of company and even a trip to Vegas. October has been no better. I am tired.

I want to feel good when I see Dr. K. in mid-November.

Friday night we were with Lori and Dave for just more than an hour before heading to the city for a birthday dinner with Don. Chez Papa Bistro. I brought more than half of my dinner home to enjoy for lunch today. They have a new chef who is presenting remarkable food. Loud. Hip. Fun. But, a late night.

William was supposed to join us for dinner but he was not flying in for the concert on Treasure Island until Saturday afternoon. The group he is working with is performing on Sunday afternoon. We won’t be able to see him this short trip.

I stayed home all day yesterday preparing for a visit today of two of Michael’s friends. We will meet at the Pumpkin Festival then head to our house for appetizers and cocktails. The house is clean. The yards are done. I even made a Fruit and Cheese Pizza – a fruit dessert served on a huge sugar cookie topped with sugared cream cheese then a beautiful array of strawberries, kiwi and bananas, which are glazed with apricot jam.

Monday – Rehab. Nap. Rest.

I hope!


Saturday, October 16, 2010

Surprising Blog Stats

It was a huge shock to me. The blog site I use updated their format, which now includes the number of hits from which countries from which URLs from which searches broken down by now, day, week, month, year and all time.

In my mind, I thought that this blog was probably being followed by a handful of people on a daily basis and another few who would check in on occasion. Imagine my shock when I discovered this:
  • From June when they began to post the stats until today, there have been almost 2,000 hits to this blog. 2,000! I know that is nothing for some blogs but it was a huge surprise to me. 
  • The most read blog is the February 18, 2010 one regarding DLCO. 
  • Readers of the blog are from the US, Canada, Netherlands, Belgium, Luxembourg, China, Australia, UK, Japan and India. WOW! So unexpected.

So, thanks to those who follow my saga but also thanks to those who just want to read specific blogs. Maybe, just maybe you may be enticed to read more.

Friday, October 15, 2010

Cellcept, Shingles and Boils, Oh My!



I had a breakout of thrush and shingles when I started Cellcept – the bone marrow drug – about three years ago. It was the third time in my life to experience the joys of shingles. Oh my.

The first time, I was around 10-years old and was suffering with the blisters on the right side of my body, front to back. I was in the bathtub when my mom peaked in and was shock to see them. I had not said anything.

I was awfully young to get shingles. It was the most painful of all three experiences. I remember not being able to even inhale, as breathing was painful. It took so long to recover but I continued to go to school. I still carry the physical scars from that episode.

The second time, William was six months old. I knew what they were but thought I could get something to help lessen the pain and discomfort. I went to an emergency room and they asked if I had been under a lot of stress. I had a baby! That was stressful! Amazingly, I really don’t remember too much pain and it seemed to pass quickly.

But boils, did I ever have boils. I still get them when I am under a lot of stress. As a child, I would get them on my arms and my legs. When I matured, I got them on the trunk of my body. One bad episode was during a vacation in Minnesota and we had to go to a doctor. I had broken out with several on all four limbs. They gave me a sucker, held me down and cauterized them, one by one. It was horrible. I still have those scars, too! Because I had opened wounds, I could not go swimming in the lake. I was not happy.

I know that to get my lung disease, there must be a genetic predisposition. I am beginning to wonder if these boils and shingles were signs that I did not have the best immune system.  It is rather amazing that I was an extremely healthy adult who never missed a day of work because of an illness. 

Thursday, October 14, 2010

Living Well with a Fatal Diagnosis



If you are a person who has been diagnosed with a fatal disease and you are trying to get your head around it, this is the blog for you. Welcome. I have a fatal illness and am determined to live well and die well with dignity and grace.

I have been thinking about changing the title of this blog. As I reviewed the searches and hits the blog registered, people are looking for information regarding a misdiagnosis. What I had meant by a bad diagnosis is actually a fatal diagnosis.

If you are a person who is dealing with a misdiagnosis, you still might find this blog interesting. I, too, was misdiagnosed for several months.

For both groups, please begin at the beginning of the blog. The introduction. It will flow. There is a ton of information within this blog that may help you on your journey.

My best to you all.

Wednesday, October 13, 2010

Shortness of Breath Discussed at ILD Meeting

I had missed the last two ILD (Interstitial Lung Disease) meetings at my university hospital for various reasons. I really regreted missing last month’s as it was on the process of lung transplantation - before and afterwards. Tuesday’s meeting featured Ginger Carreiri-Kohlman, RN, PhD who is an expert in dyspnea – shortness of breath - which is a huge daily struggle with people living with lung disease. She has conducted many studies in the field.

To meet Ginger was something else. She was a very hip 70 years old and had devoted herself to teaching and research with a special focus of shortness of breath in people with emphysema. Shortness of breath is a perception. It cannot be measured in a lab except for the Borg scale which is measured by the patient's perception of being short of breath. What is very short of breath to me may be just a minor inconvenience to you.

I found these interesting facts about Shortness of Breath (SOB) on Wikipedia: People with SOB make up about 7% of people who present to the emergency department in the United States. Of these approximately 51% are admitted to hospital and 13% are dead within a year.[17] Some studies have suggested that up to 27% of people suffer from dyspnea,[18] while in dying patients 75% will experience it.[12] Acute shortness of breath is the most common reason people who are palliative visit an emergency department.[3]

As a good researcher, she asked us a lot of questions. She asked if leaning forward offered us relief as it does with people who have emphysema. No. Actually, leaning back to open up the chest gives ILD people the best relief. She asked how we have changed our lives to adjust to being short of breath. Everything from my blog about what I learned in rehab was discussed, including the use of paper plates! She had never heard of that one!

There seems to be a huge correlation between being short of breath and depression. This is a link recently being researched. 

She is a huge advocate of fans. She says they are the cheapest thing a person can do to relieve the symptoms of shortness of breath. Air movement. On the face. Try it.

Yoga is the latest thing that is being studied to see if it helps with shortness of breath. 

She also said that one should not be afraid of being out of breath. Kick up the oxygen or slow down or adjust but for heaven's sake, keep moving. She was also very impressed that almost everyone in the room was enrolled in a pulmonary rehab program. She is a huge advocate as they have done studies on how the body is less likely to show the symptoms of being short of breath if there is hard consistent exercise. Rehab. Magic.

Tuesday, October 12, 2010

Cussing


I can’t believe how people speak these days. The improper use of the English language drives me crazy. (I am beginning to sound like my grandmother!) Just an hour of watching “Judge Judy” is enough to make me question what we are teaching our children in school. “Me and my friends.” “He don’t care.” One young lady repeatedly used the word “tooken” on a recent show. Tooken?!?

There never was any cussing in our house when I was growing up and Michael and I never used foul language in our home. I felt it demonstrated a lack of vocabulary skills.

On the street, in music, movies and TV today, people are loudly using foul language liberally sprinkled throughout sentences without a flinch. There is no sense of propriety.

When William became a teenager, I warned him about cussing. If he was to use it with his friends, he might slip and embarrass himself. It is best not to get into that habit.

When he was here recently, I noticed that when he tells a story or is talking with someone else, he spoke so well. He spoke properly and he didn't use foul language in front of me!

As we were growing up, my parents constantly corrected our use of the language. Because of that, I am convinced that I would not have had some amazing opportunities offered to me. I sounded like I was intelligent! I spoke like I was highly educated! Neither was true!

As parents, it is one of the important gifts we can give to our kids. Speaking well opens doors.

Monday, October 11, 2010

Latest Lung Research

Lois at the other rehab was a biologist working for several drug companies before her bad diagnosis. Whenever I am prescribed a new drug, I ask her about it. I have learned terms like receptors and pathways. As a person who has never understood science, she has given me the information in a way that I can understand their function. She is brilliant.

On Friday, she gave me two articles, which appeared in the July 30, 2010 Science Magazine:  “Reconstructing the Lung” and “Tissue-Engineered Lungs for in Vivo Implantation.”

One was very technical and very difficult for me to totally understand while the other was like a recap. In essence:  There has been a successful tissue-engineering of seeding autologous cells in rats. It was an in vivo process to regenerate cells to reconstruct function in the lungs.

The more technical article begins, “Lung diseases account for some 400,000 deaths annually in the United States. Human lungs do not generally repair or regenerate beyond the microscopic, cellular level. Currently, the only way to replace lung tissue is to perform lung transplantation, which is an expensive procedure that achieves only 10 -20% survival at 10 years and one that is hampered by a severe shortage of donor organs. Recently, techniques have been developed to quantitatively decellularize complex organs such as heart, liver, and kidneys. Acelluar matrices can provide attractive scaffolds for repopulation with lung-specific cells for lung engineering…”

In the future, a patient can be supported with artificial lungs while the cells are “grown” then transplanted back into their lungs. There would be no need for anti-rejection drugs as the cells are from the patient. Therefore, the prognosis and quality of life are so much better for lung patients. 

To quote the article, "Lung tissue was successfully regenerated that mimicked native tissue in appearance and would facilitate gas exchange in vitro and when grafted to rodents.” Yahoo!

But, as the article states, there are countless problems to overcome. Deciding which cell sources to take from the patient, having a good blood-gas barrier and how to test if it is working well in the patient are still just a few stumbling blocks. There are many more.

So, it is a beginning. There is a long road ahead. We have to stay healthy and live as long as we can as science begins to make advancements towards the repair of damaged lungs.

The articles are available for a fee on line or you may find them at your local library. There are found in the 30 July 2010 Vol. 329 Science Magazine Pages 520 and 538.

Here is a summary of one of the articles:http://www.sciencemag.org/cgi/content/summary/329/5991/520

Sunday, October 10, 2010

Love and Life Lessons

It is rather shocking to children to discover that their parents had other dates and relationships before marrying. I had my first date at the age of 13 (almost 14) with Tom who was three years older than I was. It was a blind date that Lee turned down. We went to the movies to see “Planet of the Apes.” Yes, it was that long ago!

He came from a very dysfunctional family who lived in a very fancy house on a very fancy street in the fanciest city in the area. His dad was a doctor and his mom sold real estate.

His parents liked me and took me with them on several trips. We once went to a convention in Reno. Tom and I would take off to explore the area during the day. One evening, his VW bus (it was the late 60’s, after all) broke down in Tahoe and we had to hitchhike back to Reno. It was my first and last hitchhiking experience. Scary. I have never been more frightened in my life and wondered if they would ever find my body?!? A nice guy rescued us by droving us all the way to the hotel.

I also remember from that trip the most beautiful sunset on a balmy evening from a park right on the shore of Lake Tahoe. Stunningly beautiful.

Tom was cheap. Not frugal. Cheap. If I wanted to go to a movie or get something for dinner, he expected me to pay for my half or even buy his ticket or dinner. I grew to hate cheap men. Frugal is fine. Cheap is well, cheap.

He was the only guy to take me to a prom. After going to one, I hated them and never wanted to go to another one.

We were together until I was sixteen. I felt smothered. He began to want to control everything in my life as I think he felt me slipping away from him. I was maturing. I was changing and growing up. I wanted to hang out with my girlfriends. I wanted a normal high school life.

He would constantly put down my parents and tell me that they were trying to control me. He even was pressuring me to move into a house on his parent’s property. I adored my home and my parents. I looked at his situation in comparison to mine and knew that it was not what I wanted. I broke up with him and made it clear that it was final. I didn’t want to see him again. One day, I opened a box sent in the mail, which contained everything I had ever given to him. It was really over.

As we were breaking up, he began to mountain climb and flip real estate.

Years later and engaged to Michael, I was at the mall and ran into him. He was getting married in a few weeks and invited us to his wedding. We went. We left quickly. It was too weird. That marriage was later dissolved.

We invited him to our wedding the following year and I remember seeing him sitting on the groom’s side of the aisle. Odd. Thankfully, I have never seen him since.

But, I am grateful for all of the life lessons he taught to me. I learned that sometimes it is more important to be clear about what you don’t want rather than a long laundry list of everything you want in a spouse. He prepared me to appreciate my very generous and loving Michael.

For that alone, I will always be grateful to him.

Saturday, October 9, 2010

Back from Hawaii

Tuesday evening, William and Kimberley returned from their 17-day vacation in Hawaii. It must have been a shock to their systems to leaving the tropical breezes and arrive here to lots of cool fog. They looked so rested and happy. They had many adventures and made themselves amazing food bought at Farmer’s Markets and local stores. No resorts for them! They stayed in small cottages with hammocks on the patios. They also discovered off roading which has shockingly become a passion.

I made a welcome home carrot cake with a lighter, less dense frosting. He had mentioned it before their trip so it was a nice surprise. Here is the recipe:  http://www.foodandwine.com/recipes/classic-carrot-cake-with-fluffy-cream-cheese-frosting

While they were here, they were able to see the progress of the Mustang he and Michael are building together. So much had been added since his last visit: the motor, the exhaust system, new convertible top, new “Rat Fink” on the back panel and so much more.

William drove Kimberly past his old elementary school in the mountains then back to the coast through the redwoods. We had many homemade dinners, conversations and I was even able to go to an orchestra rehearsal. We met Jill, Wayne and the kids at their home for a visit while Michael and Wayne watched the first game of the Giant’s playoffs. The rest of us chatted around the table. 

They left for home yesterday to get settled before Kimberly’s new job begins on Monday morning. 

It was a very relaxing, calm visit. It was great to have them both here but there were no sad goodbyes. William has a concert in the city next weekend so we have plans to meet on Friday night for dinner with Don at our favorite restaurant - Chez Papa. It has been a good year for this mom. I have seen our son more frequently than in most years. Nice.

Friday, October 8, 2010

DLCO and the Single Breath Test

One Pulmonary Function Test (PFT) follows the forward march of my Interstitial Lung Disease. It is called the Single Breath Test.

Here is the definition from a medical dictionary:
nitrogen washout test, single breath  the patient inhales a vital capacity's volume of pure oxygen and then slowly exhales. The nitrogen content of the exhalation is measured over the entire breath and a curve is generated; different parts of the curve represent nitrogen concentrations of gas in different components of the total lung capacity, and can be analyzed for irregularities. Called also single breath test.

Sounds simple, doesn’t it? It starts with taking in a huge breath then exhaling slowly until there is no air left in the lungs.

Here are my Single Breath Test numbers:
  1. 6/05 – 41%
  2. 10/05 – 54%
  3. 6/06 – 51%
  4. 9/07 – 51%
  5. 1/08 – 49%

A steady march downward. The difference between June and October of 05 is due to Prednisone. It really made a difference.

Here are my Lung Capacity (VC) numbers for the same time period:
  1. N/A
  2. 63%
  3. 67%
  4. 57%
  5. 61%

Here are the all-important DLCO numbers also for the same time period:
  1. 10.8 or 41%
  2. 12 or 45%
  3. 12.8 or 49%
  4. 11.6 or 44%
  5. 13.4 or 51%

I still shiver when I see the DLCO numbers. My first PFT in November of 2004 was 7.7. They transplant at 7. Again, any number under 35 is considered severe. I can understand how the doctors are amazed that I am able to function so well. Sheer will, I guess.

Thursday, October 7, 2010

My Giants


One thing I have not mentioned is my love of baseball. It began when dad took me alone to a Chicago Cubs game at Wrigley Field when I was well under 5-years old. I loved the sounds. I loved the smells. I didn’t understand the game but I was with my dad. Just the two of us.

Through the years, we attended many games together. He was a second-generation St. Louis Cardinals fan and my brother continues that tradition today. In fact, he traveled from New Mexico to St. Louis to attend the first game in the new stadium..He is a true fan.

Slowly I became a SF Giants fan or, as dad would call me, a traitor. It remained a competition between us for years, with me usually on the losing end. At the time, St. Louis was very strong when the Giant were very week.

Michael was not a baseball fan for a long time. When William was younger, I would buy the best seats I could get and he and I would go together. We didn’t stay for an entire game for a couple years. I wanted him to get the smell of the ballpark into this veins while he was young.

The Giants clenched their division this week. It is going to be an interesting baseball post-season, which begins tonight. St. Louis was six games back of their division so there will be no post-season for them.

So, watching the Panda, Buster Posey and all the fantastic pitchers, we are looking forward to the playoffs.

Here we go. October. My favorite time of year!

Wednesday, October 6, 2010

Blogging Topics

Barbara’s mother has written many stories about her childhood, her memories of the grandchildren when they were younger and many life lessons she has learned along the way. They were bound in a binder along with photos and were given to her children. Barbara shared it with me. It was interesting and fun to read.

I have been nudging Barbara to do something similar for her children and yet-to-be-born grandchildren. Last week, she ran across a book full of topics to write about for future generations to enjoy. She sent the list along to me as possible topics for this blog.

I was so happy to discover, when reviewing the list, that I had already written about almost all the topics. I did miss a few, which I will address in the next few blogs: favorite teams, hangouts, first boyfriend, childhood friends, cussing, childhood illnesses, sneaky events.

Consider writing about your life for your future generations. Your life. In your words. From your perspective. Your voice.

Do it sooner rather than later.

Tuesday, October 5, 2010

Traveling with a Lung Disease

The recent trip was fun but I thought I would share with you, dear reader, what it entails to travel for even a short visit.

Oxygen: I have a large top loading liquid oxygen tank in the garage at home. It weighs over 250 pounds, is on wheels and is filled once every two weeks. Before we left, I had to remind myself to wheel it outside under the eves so it could be refilled on the day we were driving home. Also, I filled my portable system to bring with us, in case I needed it but it is good for about six hours.

Unfortunately, I could not order a top loading liquid oxygen to be at my room upon arrival in Vegas. Therefore, I would not be able to refill my portable system and would not have any supplemental oxygen outside of our hotel room. This is potentially a huge problem in the future as I continue to deteriorate.

The reason the oxygen company could not deliver a top-loading refillable tank to my room is that Homeland Security believes it may be used as a bomb. So, I had to order a concentrator. It was a big very loud concentrator that plugged into the wall and made the oxygen at the rate I needed during sleep.

At night, we plugged it in and left it in the bathroom with the door shut. We had a long tube extending from it to our bed, which I continued to trip over throughout our stay.

Breathing: The casinos are full of smoke. I had a mask with me but there were so few people in the casinos, I really did not need it. If someone lit up next to me, I just cashed in and moved on.

It was a struggle walking between casinos in the heat especially up a long ramp. I did my special breathing and was able to recover quickly.

Also, I did not to eat a large portion of food as it makes me breathless.

Washing my hands: Imperative to staying healthy. There are so many viruses and germs in an environment fill with people from throughout the world. I had to keep my hands away from my face, especially my eyes which really bothered me because of the air conditioning.

Support Hose: If I stand too long or sit too long, my ankles swell a lot. A whole lot. Grossly. It takes almost a week to get them back to their normal size. It is also not healthy to let them get that big. I wear expensive support hose I bought at a medical supply store. I put them on the morning we left and removed them the evening we arrived back home. I wore them every moment of this trip.

Medications: Always a challenge. I had several medication being delivered before our trip and they had not arrived before we left. I did have just enough to get me through. I have one medication for glaucoma that turns to water in high temperatures so I had to leave it in the refrig at home and not use it. We went on our long trip over a year ago, I had to plan for over 6 months to have all the medications I needed.

Sleep: I try to stay at my same schedule as at home – bed by 8:00. This didn’t work this trip and I arrived home totally exhausted, which can cause me to get really sick. I tried to be careful but really did not get enough rest. It was too exciting. It was too much fun to be with everyone. I have been home now for four days and I am still sleeping 12 hours at night and a nap or two during the day. Bad. This one is going to take a long to recover from all the fun.

Hotel Rooms: The rooms are full of germs. We always bring wipes and sterilize every thing in the room and bathroom. We always begin with the TV clicker, as I believe it is the dirtiest thing in the room. We wiped everything from light switches to the telephone.

So, it does take much planning when traveling, even for a short trip.