Living Well with a Bad Diagnosis - Lung Disease

Thursday, December 31, 2009

New Year's Resolutions

Hold your breath.

Here it comes.

A new year is ahead and we can’t stop it! People always look forward but I look forward with a cynical eye. Can I survive another year? Can I have a year without a hospitalization for once?

2009 was a very good year. We began the year with two lawyers and ended it with none. Good riddance. I was in the hospital only once and no emergency room visits! It was a very healthy year.

Have you made your New Years’ resolutions? Shall we together?

  • This is the year I want to get under the needed BMI and make a decision whether to go ahead with the transplant process.
  • This is the year to reach out and enlarge the circle a bit.
  • This is the year I want to remember to appreciate every day and give thanks.

Happy New Year to you!!

Wednesday, December 30, 2009


At the rehab class, Dick had taken Beverly under his wing. Her husband died a year ago while he was going onto a major bridge. As the lanes converged, he said, “Oh, shit!” then died of a massive heart attack. She was in deep grief.

This year, her son was found dead in his bed. She did not come to rehab for a while but when she finally came back, Dick was ready. He had printed out funny things from the Internet, though most were a bit naughty. She began to giggle. It was a marvelous sound.

Since then, he would prepare a small packet for her to get her laughing before class. They were talking alcohol one day and she mentioned that she liked a little Bushmills once in awhile.

That was all Dick needed to hear. Before Christmas, he bought a bottle of Bushmills and a card. He signed our names to the card and he was ready. Beverly didn’t show up.

I was assigned to bring the bottle home and back again the following Tuesday. She didn’t come to rehab. I handed it off to Sherman to give to her on Thursday as I had a dentist appointment.

She didn’t come, much to Sherman’s relief.

Sherman handed it off to Dick the following class. She still had not come back to rehab.

The RN at the rehab class told us yesterday that Beverly has just passed away.

Rest in Peace my friend.

Tuesday, December 29, 2009

Good Groove

We are in a good groove.

The medical tests are improving. We enjoyed the holiday with our son and the rest of the family.

Processes are in place: oxygen, rehab, and diet.

Michael is healthy – thank the stars above. My mom is well – except for some recent back issues.

We are functioning.

We are living a good life.

Next: Years?

Monday, December 28, 2009

One Room Condo

Years ago, my dad phoned one evening to announce that they had purchased a one-room condo. I asked, “Where?”

“Lodi,” he replied

“Lodi?” I asked again because none of this made any sense.

“It is really nice. Just the right size.”

I asked, “One bedroom?”

“No, one room,” came the reply.

After a very confusing conversation, I began to put two and two together. It turns out that they had been out for a ride and came across a beautiful cemetery. They purchased a mausoleum spot for the two of them to be buried head to head. One very small room. Their one room condo.

They supervised the construction and went to visit it often. He loved the thought that theirs was next to a fountain where we could sit and just visit with them. It was completed maybe a year before he died.

We had hoped to visit him on our way to mom’s house after Christmas but we didn’t have to drive her home this year. We all miss him so much especially this time of year. He so loved Christmas.

Next: Good Groove

Sunday, December 27, 2009


Feeling better? All the presents put away? Now is the time to go to a movie, a short trip or just a hike in the woods. I am feeling housebound. I think I need a few more days to totally recover but I am definitely on the mend.

William has been here for nine days and is leaving tomorrow. It has been a very happy and satisfying Christmas. I love having him here.

As promised yesterday, the New Orleans Christmas day food included: A cocktail that William and Michael went crazy over. The recipe is above. It began with a very small amount of 90 proof liquor from New Orleans swirled in a glass. In a shaker, combine whiskey, super fine sugar, bitters and lemon rind, shaken with ice then poured into the glass. Michael kept saying that it was “dangerous!” I drove home!
Lunch was a classic New Orleans huge sandwich cut into serving slices called a muffuletta. It is made with specific cured meats, provolone cheese and chopped olives. Delicious!

Appetizers of hot prawns in cilantro oil and covered in a homemade salsa were served. Amazing combination of flavors. Also, crab cakes and andouille sausage. The first course was gumbo made with chicken andouille sausage and chicken thighs. Delicious! The main course was a beef filet stuffed with crab and good New Orleans red beans and rice. Perfect flavor. Took us right back to our trip in May. For dessert, we had apple pie with a whiskey cream sauce. I died. Others licked their plates. Others returned for seconds. It was a spectacular ending to a great Christmas with the family.

Next: One Room Condo

Saturday, December 26, 2009

Surviving Christmas?

Did you survive? I am well but exhausted. I am going to cool my jets for a few days because I just don’t want to get sick. Thinking of running to the other rehab for a good workout.

Oh, the food!

We had a ball at my sister’s house. She and her husband featured food from New Orleans this year. It was amazing. More about it tomorrow.

In past years, we served food that grandmas would cook from Greece, Germany and Hawaii. Last year we featured food from our little town. It had to be caught, grown or raised here.

My brother-in-law had researched and served food from Italy and Spain in past years. He is a great cook. When we run out of countries, we can choose a letter of the alphabet and cook all the food of that letter. I always need a challenge. Keeps the brain active!

Next: After Glow

Friday, December 25, 2009

Merry Christmas

I hope you have felt the spirit of the season creep into your soul and memories of previous Christmas’ flood your brain and make you warm all over.

We remember all our relatives who used to share the day with us but now are gone.

We talk about the magic of the season through our childhood eyes.

Love the ones around you. I know, some bother you or are clueless or smell. Love them for who they are. Learn from them. It will come back to you ten fold.

Look back from last year’s Christmas to see if you have grown, learned, forgiven, loved and helped.

Enjoy the loved ones around you. Drink in the day.

Next: Surviving Christmas?

Thursday, December 24, 2009

Christmas Eve

I will probably stop by our favorite church this morning while it is empty for a quiet moment after my morning work out at the other rehab.

In the evening, we are invited to a party hosted by really nice people. The setting is beautiful and I am really looking forward to it.

Tonight we will sit near the beautiful Christmas tree and talk about the past and the future. In the old days, William would go to bed so Santa would be sure to swing by. Now, I am usually the first person to head to bed.

We are driving 100 miles to my sister’s home tomorrow morning. I am looking forward to being with my whole family.

Next: Merry Christmas

Wednesday, December 23, 2009

Rehab Luncheon

A few years ago, I arranged luncheons for all of the rehab class ladies at local restaurants. For some reason, we have not had a luncheon for over a year. Kathy, at rehab, suggested that we all get together before the holiday.
We also invited the boys of rehab.
Dick asked if I would wear a skirt. I told him I would wear a skirt if he wore shorts. We both did.
The luncheon was at an old diner that has been the same for 50 years: same wood paneling, same wooden chairs and tables and same menu. Why mess with success?
It is the kind of place that Guy from the Food Network would visit on Diners, Drive-Ins and Dives. The food was very inexpensive and a good Americana menu. Most ordered Swedish pancakes or eggs.
I, of course, had chili.
It was a lovely luncheon and great to talk with everyone outside the gym.
The funniest thing that happened was that one of the women made a comment with the assumption that Dick and I are MARRIED!! I will never live that down!! Dick laughed so hard and loved it. Instead of being called his adopted daughter, I am now the new wife!
My life will never be the same!!
I got off the elevator at the other rehab on Monday and there he was waiting for me. He makes the most amazing antipasti of olives and other vegetables and was dropping off a large jar as my present. He gave me the recipe years ago but it is very expensive to make. So sweet of him!
We laughed again about being his new wife!
Next: Christmas Eve

Tuesday, December 22, 2009

Weighty Issues

My weight has always been an issue. After William was born, I was the thinnest I had been in years. I loved the feeling but was eating the Beverly Hills Diet way: pineapple all day then potatoes all day then chicken all day then….It was not healthy. I lost most of my hair. The weight returned.

I weighed 129 pounds from 1987 to 1990. Then some really bad family stuff happened and the weight went back on very quickly.

I have been around the weight I am right now for many years.

Confession: I am a foodie. I love to cook. We love to go and try new and outrageous restaurants. I even read food blogs.

I simply need to lose 20 pounds to get under the BMI to begin the qualifying process for lung transplants. I am scared to lose 20 pounds to get under the BMI to begin the qualifying process for lung transplants.

I need to get over it.

As the year ends, I need to develop a plan to make it happen. I will keep you informed of my progress.

Next: Luncheon

Monday, December 21, 2009


When I realized that time is growing short, I began to distribute things to the people whom I thought should have certain items. I don’t want to leave that job to Michael.

Last Christmas, I began to give family heirlooms to my wonderful niece. Beautiful handmade clothes from Hong Kong and several furs from my mom and aunt were passed down through me.

This Thanksgiving, she took three large bags of framed photos of our family going back four generations. Some other family things were also packed into her little car.

I felt a great sense of relief, know that they will be taken care of and that she gets it. She knows the value of the items in terms of family history and will pass them along through her children.

They are in good hands.

Next: Weighty Issues

Sunday, December 20, 2009


It the midst of all the lawsuits, private investigators, bad medical news and so much more, I needed somewhere to just sit and feel that there was some hope. During the very worst times, I would drop in at the church where Michael and I met. No one would be there and I would just sit in the silence.

It was the only place where I found some peace.

I would gather my strength, feel like it was all going to somehow work out in the end and head back out into the world.

It doesn’t need to be a church. If you are struggling, I hope there is someplace that will bring a sense of peace into your soul.

Next: Heirlooms

Saturday, December 19, 2009

Blog about Blog

Crazy. When Dana talked to me about the possibility of blogging my experiences, I thought it might be helpful information for others and that maybe true, but it has been a life changing experience for me.

I thought I had everything that had happened settled in my body and mind. I was okay with it all and was moving on. What a shock when I began writing as it all just spewed out.

As it continued, I felt a huge weight lifted from my shoulders. It is like everything that has happened is placed somewhere instead of inside of me. It really has been a surprise.

If this blog has helped one person, that would make my heart sing.

Next: Church

Friday, December 18, 2009


Michael has a really good friend who has had us over to their house for dinner many times. He phoned from their house one beautiful summer afternoon to say he invited them to dinner.

Normally, no problem but I was in an energy saving mode to see our son work a concert the following evening. Michael knew that but really wanted these people to dinner and conveniently forgot I was ill. Worse, they had never been to the house so I felt the need to spiff it up.

He told me they were coming without even asking. I was not happy. I cut the grass and then ran to the store for food. They arrived. It was great. They were lovely. I was totally exhausted. I have never been angrier with Michael. He really wanted them to our house but he had no regard for my health.

The next night, we went to the concert. It was great but finished very late, long ride home and I became sick. It took weeks to recover. There are consequences to pretending.

Next: Blog about Blog

Thursday, December 17, 2009

Shaking My Head

It still amazes me what some people say to me.

We were so thrilled when we got the phone call about the approval for Social Security Disability. Again, it is very rare that a person of my age is approved on the first try especially without an attorney.

Upon hearing the news, one relative said, “Wow. You must really be sick!” This was in the summer of 2006, a year and a half after my diagnosis.

Another relative said she likes to talk with me because I understand her breathing problems. Her lung disease is one of a long, slow decline. It took many years of my explaining the differences for her to finally get it.

I feel like I had to constantly prove that I am ill.

We have not allowed anyone, other than my mom and William, to stay with us as it is exhausting for me. It was just recently that they began to realize that I am not well enough to host a visit. Pressure is on as some want to come and have even suggested that they will stay in a hotel.

Michael says it is fine with him but he worries that I will do too much getting everything ready and all the meals planned and prepared. I want the company but I really don’t want the work.

These are the things that you wish you could still do but have learned that you can no longer handle.


Next: Pretending

Wednesday, December 16, 2009

Back to Mom

My mom has had a medical issue the past two months. Three vertebrae have collapsed in her back and she has stenosis – a tightening of the spinal column. This causes immense pain.

She initially went to see her doctor who took an x-ray and told her that she had arthritis. He prescribed pain pill every six hours. She got through Thanksgiving but was watching the clock. She had called him to ask if she could increase the dosage. He mocked her by saying, “It’s only arthritis. I don’t want to increase the meds until after the MRI.” That was scheduled for November 30th. She was in horrible pain.

After the MRI when we discovered it was so much more than arthritis, she had an appointment for an epidural, which was weeks away.

My mom is no wimp but I have never heard her in such pain. People would not allow their pets to be in this amount of pain but somehow it was okay for an 81-year old woman. I was not happy with the doctors.

Before the epidural, I talked her into going to Urgent Care. The doctor there told her to take the meds every 2 hours, if needed. He also gave her a shot in her back, which didn’t last through the night. The pain got worse. She was unable to drive. She lost her appetite. She was down to 110 pounds.

My sister told her to go to the emergency room. They had her waiting in a chair for 4.5 hours. Finally, a doctor saw her and gave her a series of small shots. This happened two days before the epidural.

We drove out the day before the epidural to see her and brought her some high calorie, high fat food. Lots of eggnog and cream soups! I was ready to knock some heads with the doctors for allowing her to be in such pain and not to be a bit concerned. But, the shots from the emergency room were beginning to kick in and she felt about 60% relief. Great news.

The epidural at 5:00AM the following morning went well. The next morning she was feeling so well, she went out to pick up her meds and just walk around. She sounded fantastic. I hoped, as the days go on, that the epidural would give her 100% relief from pain but that was not to be. She still is in a huge amount of pain and is talking with the doctor tomorrow about surgery.

This has been a huge wake-up call for me. I expected my mom to outlive me and suddenly, I realize that she is so vulnerable. At her age, every day that she is not able to move due to pain, she looses muscle and bone mass. She is also vulnerable to pneumonia, which could be a death sentence. We are all concerned about her weight as older people need some weight to sustain them through an illness. She has no backup at the moment.

I’m not ready to lose her.

Next: Shaking My Head

Tuesday, December 15, 2009


I hate whiners. Most of them will whine forever and never move from that position. Gives me a headache.

When I first began rehab, there was a notice on the bulletin board about a group that met once a week for people with breathing problems. I asked the head of the educational piece at rehab about the group and if I should look into joining it. “No!!” she said emphatically. “Not for you. They don’t do anything other than sit around and whine. You don’t need it. You’re not a whiner.”

I am proud of my no whining status.

In the rehab class, I am happy to prod anyone who is interested in joining me at the other rehab. Only one person has accepted my invitation. She is very overweight (260+) and has a genetic lung disorder. I was happy that she was going to workout with me two additional days a week. I liked her.

We met at the other rehab at the appointed time. I began to smell trouble when she would get angry when I talked with anyone else when we were together. We had to work out side by side. Conversations were a bit dull. She only watched the horrible TV shows that I would never watch and didn’t have much else to talk about except meeting men through the Internet. They were all losers and most were working a scam for money. She was always hopeful that “this is the one.”

She also wouldn’t go to the gym alone without me, which was also not a good sign.

I learned that she had been going to Weight Watchers for years and had yet to lose weight. She had a list of excuses. The fact that they go to Chili’s after the meetings wasn’t on that list.

She began to ask where I bought my workout outfits, tried to invite herself to my house for dinner, and wanted to spend time walking on the beach with me. I could feel her trying to suck all my energy from me. I have no problem encouraging someone to take control of their disease for the better but I did not want to be controlled and smothered.

She followed me to Trader Joe’s after working out one day. As she strolled right past the fresh fruit and vegetables, I stopped her. “Have you ever eaten an organic white peach?” She went right to the chips aisle and bought a bunch of crap food.

We worked out together for about a year. Excuses happened. We planned to met, I would rush to arrive at the agreed upon time then I would get a phone call. She slept in and wouldn’t make it. This happened four times in a row.

I’m done. I have offered support and put a lot of time and energy into her. The problem is, she wasn’t willing to put the time and energy into helping herself.

Next: Back to Mom

Monday, December 14, 2009

Adjusting for Christmas

Christmas can be frustrating and exhausting. It shouldn’t be. It should be a time to mark another year of health and a joyous time with friends and family.

Through the years, I have learned to adjust for my energy issues and to make Christmas healthy for all of us.

We had to give up a live tree. The possible molds or fungus as well as the aroma prodded us to purchase two fake trees. I hated them the first year. I have adjusted.

We haven’t been to a Mass in ages. That Christmas tradition is gone.

A side story: One of the women I met in the rehab class was a former nun. She is a hoot and hilarious. We were out together to a charity Christmas open house for a school when she mentioned that it was a First Friday. God, I hadn’t been to a First Friday Mass since elementary school. She asked if I would go with her after the open house. We arrived, sat away from anyone else and, as the Mass began, an older man sat in our pew with us. He constantly coughed and sneezed. I was not looking forward to the part when we all were expected to shake hands with each other. I just couldn’t. When the time came, I grabbed him by the shoulders and gave him a quick hug. He looked startled. I haven’t been to a Mass since then. Too many germs!

Christmas shopping has become a game that we play. We plan for it for weeks. Lists are made, stores are noted and on a Monday morning, we begin. It is an all day event with a stop at lunch for cocktails. It keeps Michael going. It is finished by dinner. If I have to grab little things, I do it before or after rehab. We learned that there are few people in the stores on Mondays. Perfect for me!

We used to have a Christmas Eve party every year. Forget it. I need to have enough energy to get through Christmas.

I used to cook a lot for the neighbors and friends and special treats throughout the month. No more.

Christmas has turned into a time where Michael and I appreciate our time together, our families and our dear friends. The other stuff is adjustable.

Next: Whining

Sunday, December 13, 2009

Mom Steps into the Spotlight

My dad was a very dynamic person and life swirled around him. My mom was happy to let him be in the center of it all.

When he died, she had to step into the spotlight.

These past twelve years have been a gift of getting to know my mom as a person. She has always been an amazing mom but I learned things about her life that I wouldn’t have know if dad had still alive.

I have learned many life lessons from her, too. She is one strong woman and I am thrilled to have those genes in me!

The most important thing I have learned is that you have to adjust and keep growing and learning. She had a choice after dad died. She could have fallen into depression and waited to join my dad. Instead, she created a new life.

She learned to play bridge and plays with three different groups. She studied and became a docent at a Victorian Mansion in her town. She continues to volunteer at the hospital. She made friends with many women but became buddies with three of them. They are her dear friends. They are her new life. I can never thank them enough as they continue to give her a reason for getting up in the morning.

She is independent and the thought of living with her children is intolerable. She also will not allow a housekeeper in her house. It would bug her. Bugging her keeps her active. If the garden has a few leaves, it bugs her. She gets out there and works, whether she feels like it or not.

I am the same way.

All my life I thought that I was so much like my dad. I have learned in recent years that I am thrilled to be even a little bit like my mom. She is amazing.

Next: Adjusting for Christmas

Saturday, December 12, 2009

The Wonderful Dr. K.

I had an appointment with Dr. K. this week. Before I saw her, I did two Pulmonary Function Tests – Spirometry and DLCO. These numbers would be compared to the last tests in April. (I had the stomach surgery in February and the April tests showed that there was a problem.)

The Spirometry numbers did not change from previous tests but the DLCO in April had dropped to 10. Not at all good. Dr. K. felt that my esophagus issue after the surgery was causing the DLCO to drop.

So, the tests this week were the first ones since we fixed the esophagus problem. The DLCO went up almost 3 points! The highest it has ever been. I hit 13!! Amazing.

She also asked if I had the H1N1 vaccine. My county has been having problems getting their allotment, so within minutes I got one. She said that I should have it as I am on two immune suppressant drugs.

Also, for years I have seen Dr. K. every 4-6 weeks. Last year, she extended our appointments to every three months. At the end of the appointment this week, she looked at me and asked, “Do you think we should try for six months?” I said, “We have never been separated so long! Let’s give it a go.”

See you in June, Dr. K. I hope.

Next: Whining

Friday, December 11, 2009


As mentioned before, a cold can be dangerous especially if it moves into my lungs. I have not had a cold since 2003 but it has not been easy.

All friends and relatives know not to come to our house if there is even a hint of a cold coming on. Everyone washes their hands when they arrive.

When we go anywhere, we don’t touch anything. I bring my own pen to write checks, don’t hold handrails on escalators or open any door without fabric (scarves or a sleeve are great in a pinch). We use Purel whenever we return to the car then wash our hands when we get home.

It has worked.

If Michael feels a cold coming on, we sleep in separate rooms.

If I feel a cold coming on, I go into attack mode:

  • Take Airborne every 3 hours
  • Take Zicam every 3 hours
  • Take an antihistamine at nighttime
  • Rub Vick Vapor Rub on the bottom of my feet, wear old socks and go to bed.
  • The next morning, all the symptoms are gone. I continue the Airborne the next day then add everything else for night #2. I continue the Airborne on day #3 then I am done.

The cold is gone.

The trick is to jump on it immediately at first sneeze. Try it!

Next: Wonderful Dr. K.

Thursday, December 10, 2009

Fresh Meat in Rehab

I was not looking forward to showing up at the other rehab hospital for the first time. I looked weird with the oxygen backpack and I knew that I was going to be checked out.

I was nervous.

So, I had a plan: Totally ignore all the men and talk to every woman. It worked. They all asked what was wrong with me. No problem. After awhile, they introduced me to their husbands. After about three months, I began talking with some of the men and now have both male and female friends there.

During the first couple weeks, I was sitting on the recumbent bike when an older gentleman began his workout next to me. We began chatting. I always ask if someone has children because that usually puts them at ease. Turns out, I knew his son.

While we were still talking, an older woman stood between us listening to our conversation. I thought that she was his wife so I included her as we spoke.

Time’s up! Great to met you! I have to go to the arm bike. Bye!

Off I went and began the arm bike at the far side of the gym. Suddenly the same older woman was standing over me next to the arm bike.

She was not happy and quietly sneered, “I just want to you know that he is a new widow and there are a lot of women here who are interested.”

I swear.

Rehab has become the pick up place for the 80-year old set.

Next: Colds

Wednesday, December 9, 2009

Dying Well

I don’t want to die of this. Gasping for air would be a horrible, a hard, and a scary death. I don’t want to be on life support. We had to remove dad from it then watched him die. It was horrible. It was a hard death. It was scary.
I probably will die when the lack of oxygen in my blood can no longer clear the carbon dioxide from my system.
Michael has been told that if I am bed bound and on 10 liters of oxygen, that is not living. If I begin to get pneumonia, please don’t treat it and let me go. Pneumonia is an easy death.
I wish I had a choice.
Next: Fresh Meat in Rehab

Tuesday, December 8, 2009

Life Lesson

It was always sweet to go down the stairs from my bedroom to see my parents dancing together in the living room. Both said they are horrible dancers and would only dance with each other. They don’t want to break anyone else’s toes! They looked pretty good to me.

After stumbling into them one evening when I was about 13-years old, we had a nice talk. Dad told me that one day; all three of us would grow up and move away. He wanted to be sure that they still liked each other after we were gone.

He told me something else that made such sense to me that I have used it throughout my marriage. He told me that in a marriage, the two of you together are like the sun. Your children, family, work, friends are like the planets circling the sun.

If the sun is together and functioning properly, the planets circle perfectly and perform their function.

If the sun is in conflict, the planets wobble and can’t stay on their course. Nothing is working well.

In other words, if you make sure the relationship between you is good, everything else falls into place.
Tend the relationship.

One marriage vow promised “in sickness and in health.” If our relationship before the diagnosis was not good, we could not have gotten through this process. Having a sick spouse is very taxing. How we have treated each other throughout our marriage and our total commitment to each other has insured that we will walk together to the end.

Tend your relationship.

Next: Dying

Monday, December 7, 2009


It is amazing how many total strangers who learn that I am sick will very quietly tell me that they will pray for me. To name a few: a woman at the counter at the drug store, a checker at Safeway, a nurse at the clinic. The person that has touched me the most is a parking garage attendant at the university hospital.

My car is a rare automobile and he asked me about it the first time I went through his line. Later, after a tough appointment, he asked how I was and I told him the truth. “I will pray for you,” he said very quietly. He really meant it.

We have become friends. He even knows Michael now. He knew every time I was going to have surgery or was in the hospital and even told Michael that he was praying for me. Afterwards, when we saw each other again, he always asked for the latest updates.

This guy sees hundreds of people in cars everyday.

I am so touched that he remembers me and cares. I’ll take all prayers I can get!

Next: The Planets Aligned

Sunday, December 6, 2009

Trouble with the Surgery

After the surgery, I faced a 3-month recovery period and actually needed the entire time to fully recover. Liquids were allowed for the first week then soft foods for several weeks. I added other foods very carefully then returned to rehab after a month for a shorter and less intensive workout.
My quantity of food was greatly reduced and since the surgery, I have no sensation of being hungry. I can eat a very small breakfast and get home from rehab and food shopping by 1:30 with no hunger pains. I get a bit weak, but no hunger.
I am not a patient person but I did not want to do anything to hurt the surgery site. All was well for about two months. Suddenly, the acid reflux was back. I went back on the reflux drugs but it was still bothersome.
Tests were ordered. These are gruesome tests with tubes down the throat for 24 hours to test the acid levels and barium swallows to watch the esophagus, the surgery site and to check pressure levels.
I also began having a hard time with food just backing up in my esophagus. No food or water would go down.
After many tests, it was determined that the top of my stomach was wrapped too tightly around the esophagus and food was just backing up in my esophagus. It was not actually acid that was causing my problems but backed up food.
So, after much discussion, I was instructed to cut my food into little pieces, no liquids during meals and to eat very slowly. If I can give the food time to clear the surgery site, it won’t back up. It has worked. I have no more problems swallowing; I just have to eat very little food at one time and very slowly.
The doctors looked at me rather surprised when I said, “So, no surgery and no new medicines. I just need to change my behavior? That is great news. I can do it.” I guess that is not a patient’s usual response.
As I cooled my jets during the three months of recovery, I sat and planned our escape. Since the WC lawsuit was settled, we could now do needed maintenance in our house and we desperately needed to have the inside painted. The fumes would not be good for me so we planned a three-week road trip during the painting.
It worked. On the three-month anniversary of the surgery and with approval from Dr. K., we took an amazing 6,000-mile road trip. We visited many friends and relatives, ate Southern food, several different types of BBQ, went to the Grand Ole Opry and sipped whisky in Kentucky. We even spent two days in New Orleans. We didn’t want to come home.
We love traveling together. This was our 4th cross-country road trip. We laugh and say that before anyone gets married, they should spend two weeks in a car together. Survive that as a couple, you can survive anything!
Next: Prayers

Saturday, December 5, 2009

Nissen Fundoplication Part 2

I was so surprised when the surgeon told me what the surgery would entail. The plan was to wrap the top part of my stomach around my esophagus to prevent the valve from opening. Food would fall by gravity. No acid reflux or fumes could flow back into my lungs causing the disease to flair.

It was to be done laparoscopicly. Five punctures wounds were to be cut in a circular fashion around the belly from just under the breast to the belly button. Air would be pumped in so the organs would be assessable. The stomach would be wrapped around the esophagus. The end.

Well, not quite. I was very nervous to have general anesthesia and was to be on a ventilator during the surgery, the doctor told me that I would spend some time in ICU afterwards as well. This was major surgery.

I went for the pre-op the day before the surgery. The woman collecting the information found my case interesting and took her time with me. She actually heard how nervous I was and brought an anesthesiologist to speak with me. She said that she would note that this was a difficult case and that would kick in a notice to assign a seasoned anesthesiologist. THANK YOU!

The day arrived. They were running late. The IV was started. We waited. The anesthesiologist arrived and was perfect for me. He really read my history, asked me many questions and reminded me that I would wake up intubated, as it would take more time than the surgery for the anesthesia to clear my blood. The hope was to transfer me to ICU with enough drugs on board so I wouldn’t remember being intubated.

That didn’t work. ICU was booked so I woke up in the pre-op room still intubated. They untied my hands. Lying in bed with a tube down my throat felt like I was being suffocated. Awful feeling. He said that they were going to remove the tube in a few minutes and knocked me out. I remember violently gagging as it was removed.

Later, he asked me questions and said, “Damn, I didn’t give you enough drugs. You shouldn’t remember that.” As they went to move me to ICU many hours later, the moving of the bed caused me to be nauseous. No way was I allowed to retch, as it would pull the new stitches. IV meds helped within minutes.

If you have never spent some time in ICU, let me share that it is not a place for rest. I never slept. The ratio is one nurse to one patient and I was monitored constantly. I was in quite a bit of pain and the night male nurse and I bonded. He was marvelous and we hugged goodbye after his 12-hour shift.

The new nurse arrived and asked if I could get out of bed into a chair. Thanks to the muscles I have developed in rehab, I hopped out of bed. My stomach muscles were really tender so I had to use just my arm and leg muscles. “That’s it! You are too well to stay in ICU,” she said. It took ten hours before they had a room for me.

They almost let me go home from ICU after the first day until they realized that I had not had water or food. They needed to check the plumbing before I was allowed to leave.

The nurse took Michael aside and asked that he get some dinner then gave him my new room number. This would allow the new nurse on the floor to get me settled in.

As they wheeled me into the new room, my eyes grew wide. The bathroom looked like a spa, the window from the 13th floor look out on a world famous view but the real kicker grabbed my attention immediately.

I started to laugh! I told the intake nurse, “When my husband sees that 42” HD TV, he is never going home!” It was magnificent.

Michael walked into the room, took one look at the TV then noticed that the chair pulled out into a bed. “Hmmm, I could stay all night!” He stayed until around 10:00 then headed home so he could head back to spring me from the place in the morning.

One thing that Michael has always done on every discharge day is to bring fresh bakery cookies to the nurse’s station and personally thanks them for taking care of me. I love that he does that.

Next: Trouble with the Surgery

Friday, December 4, 2009

Nissen Fundoplication Part 1

A year ago September, I was having a cup of coffee and reading the Sunday paper. I really don’t know how it happened but I inhaled a sip of coffee into my lung. I fell off the couch, onto the floor choking and gasping for air. The pain in my upper left lung just under the collarbone was tremendous.
Michael was tapping my back to help the coughing. I was not able to inhale, was running out of air and he didn’t really realize what was happening. Within seconds, I was going to pass out. I looked up at him and whispered, “Oxygen.”
He ran to the garage where the oxygen tank lives, came back and asked, “How high should I turn it up?” I just stared and used my thumb pointed to the ceiling to indicate ALL THE WAY!
It took about twenty minutes for my breathing to return to normal. I asked him if he realized that I almost passed out and asked what he would have done. He answered that he hadn’t had a clue and probably would have panicked. We now have a plan in place if something like that happens again.
Just over a week later, I began to be very out of breath, totally exhausted and just felt sick. I contacted Dr. K. who told me to get to the hospital immediately for a CT scan. She thought that I might have a pulmonary embolism, which can be deadly.
I saw her in her office the next day. All looked the same on the CT scan. She listened to my lungs. One of the reasons that I was not diagnosed correctly is that my lungs sound normal. No crackling. She said for the first time right at the site where I had the pain from the coffee incident, there was crackling. It has continued to today. Permanent damage.
I had a nasty infection brewing. My PFT’s were horrible. Up went the prednisone levels along with a very strong antibiotic. It was a scary time. Eventually I recovered and everything returned to normal.
Thanksgiving was at my sister’s house last year. They live 100 miles away, have a large home and invited us to stay that night. We had a lovely dinner and I went to bed around 9:00 – late for me. What I didn’t take into consideration is that we had eaten several hours later than our usual 5:00 dinnertime. There was no time for the three hours between the time I had food and the time I went to bed. Due to the drugs, I had been battling acid reflux for a few years. I was on Protonix but still had some symptoms.
At 2:00 AM, I awaken choking and gasping for air again. The acid reflux had come up and into my lungs. I was coughing out white pieces of vomit tasting glop. I was in tears. I knew this time that I had to get some antibiotics immediately. We thought about sneaking out of the house and heading to my hospital. We waited until morning, drove my mom home, got home and called the lung clinic hot line. A resident returned my call.
I am so used to Dr. K. trusting me and believing what I say that I was a bit taken aback when the resident questioned how I knew I had aspirated. I told him that I needed antibiotics immediately. He said no and to just keep an eye on it. He also mentioned that he was going on rounds with Dr. K. later that afternoon. (I had planned to phone the clinic in the morning to ask for antibiotics.)
At 4:00 the phone rang. It was the resident who asked where to phone in a prescription for antibiotics. He also said Dr. K. wanted to see me ASAP.
She was not happy. “This is the second time in a short period that you have aspirated. You must have the surgery!” Surgery? What surgery?
She set up an appointment with the head gastoentologist surgeon for a Nissen Fundoplication on February 5, 2009.
Next: Nissen Fundoplication Part 2

Thursday, December 3, 2009

Chili and Root Beer, Please

Before interstate freeways and fast food joints, we traveled from northern Illinois to Lake Mille Lacs in Minnesota for a two-week vacation every year. My grandparents had a summer place on the lake and a winter place in Arizona. On the current interstate system, it is about 500 miles.

We would be packed, ready to go and in the car by 3:00 or 4:00 in the morning. My parents thought it would be easier to travel with young children if they slept for the first several hours. So as we three kids shared the back seat, dad would turn on some cool jazz very low on the radio and we would drift off to the smell of both parents smoking.

Finally, it was time to stop for breakfast around 6:00. We always ate at a diner-type restaurant, as that was the only thing available in the late 1950’s. The archetypical waitress would take our breakfast order.

My sister, who sat in the middle of the back seat, always got carsick so she ordered tea and toast. My brother ordered cereal then she would turn to me. “A bowl of chili and a root beer, please.” An eyebrow was raised as she looked over to my dad for confirmation.

“She wants a bowl of chili and a root beer,” dad said with a shrug of his shoulders.

She left shaking her head. Even at different diners, this happened every year.

Whenever I am under extreme stress, all I want is a bowl of chili and a root beer. It is my comfort food.

Much to Michael’s dismay, I want chili and root beer to be served following my memorial service. He suggests my second favorite food: smoked salmon.

No. I want chili and root beer, please.

Next: Nissen Fundoplication

Wednesday, December 2, 2009

Money and Relatives

Lesson #1: Money and relatives do not mix!

Michael and I have never talked about our financial situation to anyone throughout our marriage. If things were not great, no one else ever knew. Not even our son. We would talk, create a plan and worked things out together.

Mostly, things were fine, bills were covered, money was in the bank and investments were made. We lived well within our means.

Why is it that people think everyone else is doing fine and only they have money problems? Announcement: We all struggle financially during our lifetime.

Some relatives assume that we are rich. They forget that we loss my income and that I can never work again. They don’t consider the expenses of being ill. It costs a lot of money to keep me in rehab, meds, medical tests and hospital bills. They must think that we don’t complain therefore we must be rich.

When we settled with the Workmen’s Comp insurance company, we kept it a secret for almost a year.

A relative asked about the lawsuit. I told them that we settled but was mostly for future medical with a small amount of money. That’s is not possible, they said. You should have gotten millions, they continued. They think I am not telling the truth. That is just not the reality of WC in this state.

Within days, a relative called to let me know their need for some money.

Michael and I talked about it and have a plan in place. He is waiting for the next phone call. He will tell them that he does not have any extra money; he may in the future, but not right now. All the extra money is in my name and he doesn’t feel right giving my money away.

This was a really tough blog to write.

Next: Chili and Root Beer, Please

Tuesday, December 1, 2009

My Lowest Point

Funny, the lowest point of this entire process was not with the illness but with the finances.

For two years, State Disability Insurance paid 2/3 of my income and my sick pay covered the difference. The long-term disability insurance policy was to kick in during year three. As written in a previous blog, that didn’t happen.

My monthly long-term disability insurance check arrived on November 1, 2007. On November 15th, we were told that it would be our last check. No more income.

Michael had left a job when it became a problem taking me to doctor’s appointments and staying with me in the hospital for the various surgeries and emergency room visits. In the meantime, he was trying to open a small shop where he could generate some income and come and go without the threat of being fired.

We had no income.

That was my lowest point. It was the second time I cried during this whole process. It was such a hopeless feeling.

Earlier that year, my aunt had been under hospice care suffering with Parkinson’s disease. At one point, I mentioned the concern of her hiding drugs to commit suicide. The wonderful hospice nurse told me that if a patient commits suicide, it most often happens when they realize the impact of their illness – financially and emotionally – on their relatives. It is earlier in the process of the illness.

That made no sense to me. Why would one commit suicide and miss the final years with the people they loved?

After we receive notification that there would be no more income, this conversation re-played in my brain. Don’t worry, dear reader, I cannot commit suicide. I have just enough Catholic religion in me to fear the afterlife following suicide.

But I got it.

I got what the hospice nurse said. It made sense to ‘exit stage left’ at that point, not cause any more stress to Michael, not make us spend copious dollars on long lists of medicines that we could not afford, or not waste any more of the doctors time. It is a fatal illness. Why prolong the agony?

It was a really bad few days. I re-arranged some retirement funds (who’s going to live to retirement anyway?) and we were covered within a few weeks.

That was my lowest point.

Next: Money and Relatives

Monday, November 30, 2009

Blood Money

When I got the Workmen’s Comp insurance check, we sat down for a conversation. I explained to Michael that I considered it blood money. It represented the illness, which will cost me my life. I wanted nothing to do with it.

It sits in a bank.

What is your life worth? My life is worth $145,000. Sad, isn’t it? It is considered a large settlement. Ha! What a bad joke.

I also wanted Michael’s approval of my other plan. If he remarries after I die and then he dies, this money will go to his new wife’s children.

The money should go to our son. He agreed.

The money is in my name only but has William’s name as beneficiary and will flow right to him. Use it well, my son.

Next: My Lowest Point

Sunday, November 29, 2009

After I Die

Michael is a very handsome and an extremely charming person. I tell him that he will be married again within minutes of my death. Some woman will grab him and he won’t know what hit him! He swears he will never marry again.

We talk about what he should do afterwards. I had him promise me that he will not move for a year. People tend to make bad decisions based on emotions after a death. His support system is here. He has a large group of amazing friends and they will help him through the grieving process.

He says that he wants to sell the house after the first year and buy a small camper. The house holds too many memories. He thinks he wants to stay a few months in our son’s and my brother’s driveways. He also wants to just wander. I think he will end up somewhere in the desert as he has always been drawn to it.

Every few months, his group of friends gets together for “boys night out.” Their night out does not include strip clubs or bars. They meet at a Mexican restaurant and go to Starbucks afterwards. He is usually home by 8:30. These are good guys.

I was recovering from a surgery when his friend phoned. During the conversation, I learned that they were having a “boys night out” that evening but Michael told them that he was not going to attend. He had been taking care of me and was so worried he wouldn’t leave my side.

I told his friend to swing by and pick him up as he was going out with them. He needed it. One of the guys in the group is recovering from the death of his wife from breast cancer and another is the one whose wife has lupus. They understand.

When Michael got home from work, I told him he had twenty minutes to get cleaned up and ready to go. He tried to refuse but I was adamant. He needed a few hours of normalcy and laughter.

They will support him afterwards. I am leaving him in good hands.

Next: Blood Money

Saturday, November 28, 2009

The Circle Closes

When I left the school, began to focus on rehab and as we adjusted our life for the disease, we closed the circle around us. I am sure that some people felt left out of the informational loop but we really needed to concentrate on the illness.

As I have mentioned, the school never has addressed my departure and I have heard lots of rumors including that I have cancer. Their compassion and response has been very disappointing. There was no emotional support, no updated information regarding the illness, no dinner sign-up sheet, no nothing. I just disappeared in the eyes of the community.

I thought they would treat me with the same compassion that they teach to the students. I was wrong.

Many of the faculty members are still in contact with me. One told me that the Head announced in a faculty meeting that I had a genetic disease! God knows what she was saying privately to the parents.

A few of the parents and students did seek me out. One in particular would not back away. She moved forward with comforting e-mails, lunches, normal conversation and she had the ability to say all the right things at the right time.

I began to open up more. It is so hard as a very private person to talk about the huge emotional toll of a fatal disease with non- family. She has become family. She had gotten me though some bad times with elegance and grace. She is the kindest person I know.

The music faculty members were in touch for a while but I didn’t want to undermine the new Head of the program, so I backed away from them as well.

We did remove people from our life who were either too much drama or sucked positive energy from us. The circle is small at this point with just family and a few very dear friends who never need an explanation of where I am with the disease, as they have been walking through this process with us.

Next: Afterwards

Friday, November 27, 2009

Conversations While Carrying Oxygen

When I have to wear my large liquid oxygen tank – it is a Helios Marathon for lung people readers – it is enclosed in its custom-made backpack, which came with the Marathon. As I exercise or work in the garden, it allows my hands to be free and I don’t have to drag a cart behind me.

It is also a conversation starter.

While in the gym at the hospital, a woman approached me and asked me about my oxygen system. That conversation developed and by the end of it, I gave her names, phone numbers and resources for her husband who was struggling with a lung disease. She followed through and he is now in my rehab class.

A conversation that I will remember forever was at the county fair. Friend’s sons were showing some animals and we went to see them. Because we were going to do a lot of walking, I wore my oxygen.

Entering through the turnstile, a woman who was the ticket taker asked about my oxygen system. We began to talk and I was so surprised to learn that her husband had been diagnosed with Hypersensitivity Pneumonitis. I had only met one other person who had been diagnosed with HP. She was shocked that I was moving and active.

She said her husband was not doing well. The diagnosis had sucked the life out of him and he was totally depressed. She was working the fair for a second income as he was out of work and in bed all day. She was trying to help him but needed to support them financially.

As she told her story through tears, I learned that he had been treated at a small hospital and they really were not treating the disease well. When I told her all the tests and how my hospital deals with me, her eyes got huge. I encouraged her to get him into the university hospital lung clinic.

I also learned that they had not applied to state disability, Social Security Disability, or began the search to discover what caused the disease. She looked utterly relieved when we talked about possible income and future Medicare. We also talked about pulmonary rehab.

She was smiling and hopeful as we hugged goodbye.

Next: The Circle Closes

Thursday, November 26, 2009

Give Thanks

Happy Thanksgiving. There is so much to be thankful for this year. I am so thankful to have my family and friends in my life. I am so thankful that I am as healthy as I am. I am so thankful that Michael is healthy. I am so thankful that my mom is with is this year. I am so happy that our son is making plans and moving forward.

It just gets down to the basics, doesn’t it? Family. Friends.

With the economy, I wish a good job for everyone. Wealth.

But most of all, I wish you good Health.

Best wishes to you.

Wednesday, November 25, 2009

A Love Story - Not What You Think

You can imagine how thrilled my parents were that I was marrying Michael.

He was not at all what they had envisioned for me. Mom asked, “Are you really sure?” Much later, she asked how I knew the handsome; smart, confident, kind person was underneath the quiet, long-haired child they met so long ago.

Dad told me years later that they decided instead of not accepting Michael – which would ruin their relationship with me – they put a loving arm around him and brought him into the fold.

In our house, Sunday dinner was always a nice roast with all the goodies. As Michael began to join us, these dinners would last for hours, as we would talk about politics, financial matters, stories my dad would hear during the week, jokes and just conversation. During those conversations, dad also was able to slip in stories about goal setting, money management, proper use of credit, how to treat and manage other people. He had the heart of a teacher. Michael listened and learned. He loved being with my parents.

We would invite them over for the day or, after they retired 100 miles away, for a few days. The TV was never on during these visits. We talked, laughed, played music and wicked card games. I always cooked big dinners and we would sit for hours talking afterwards.

As Michael worked hard to provide money for our first home then worked even harder so I could stay home nine years with our son, they really respected and admired him. They also liked him a lot. He is very likable! And did I mention cute?

I think my dad saw himself in Michael as they had very similar childhoods. Kindred spirits, so to speak.

My dad loved nothing more than a good Manhattan. It is a cocktail of bourbon and sweet vermouth, which is then shaken with ice and poured through a screen into a stemmed cocktail glass. He had tried for years to get Michael to try one but he would only take a sip and say, “No, thanks!” YUCK!

Well, one Christmas Eve when our son was quite young, dad suggested to Michael, “Why don’t we have a Manhattan?” For some reason, Michael agreed. The process began: shot glasses were used for measuring, it was shaken and delivered it a beautiful stemmed glass.

Michael took a sip and somehow, for the first time, it tasted delicious. They sat together in the living room near the Christmas tree with Christmas music playing in the background just enjoying them. They went back to the kitchen together. I heard shaking. Round 2. I think there may have even been a Round 3!

Dad and Michael were getting sillier and laughing. At one point, I looked over at them to see Michael’s head on my dad’s shoulder. He gazed up at my dad and asked, “Are we bonding now?” It has become a classic story in our family. It was the beginning of their love story. They adored each other.

Dad was in ICU for a month before he died and during that time his brother flew in from Tennessee. He stayed with us along with my mom. My uncle, mom and I drove into the city everyday to be with dad. Michael would drive up during his lunchtime to sit with him while we would go out to get some air and lunch. He would then go back to work.

We would come home from the hospital completely spent and emotionally exhausted. Michael would have cocktails ready for them and dinner for all of us.

In my extended family, it was whispered that I “didn’t marry well.” My uncle and I were driving home from the hospital one night when he mentioned how shocked he was that Michael would extend himself so much even though he was not related to my dad. He didn’t understand that Michael and my dad were very close and that he looked to my dad as a friend and mentor. He loved him deeply.

I saw my opportunity and said, “I married pretty well, didn’t I?”

“You married darn well and besides, I don’t think another man would put up with you!” he said with a laugh.

In the month my uncle was with us, he and Michael developed an amazing relationship, which continued until his death just a year ago. They would phone each other often and I would hear laughter from this end of the phone.

So many memories. On the first anniversary of my dad’s death, we brought all the supplies with us to make Manhattans at his mausoleum. We toasted him then sprinkled some on the marble.

Make a Manhattan and join Michael in a toast in memory of my dad tonight. Today is his birthday. He would have been 87-years old.

Tuesday, November 24, 2009

Motivational Speaker?!?

When I told Michael that I was thinking about writing a blog about our experiences over the last five years along with putting it into context, he gave me the go ahead.

We have handled it together based on what we have built as a couple. To understand how we are getting through this with our attitude, I was going to have to write about our beginnings and our life.

It is scary to put it all out there.

He does not read the blog but we talk about the topics. If I can’t remember a detail, he often will fill in the blank.

He says that what I really need to do is to be a motivational speaker. Yikes!! I don’t know if I have the energy though it is interesting for me to think about.

Who knows? Maybe. One day.

Next: A Love Story

Monday, November 23, 2009

Issue #1 - Energy Conservation

One of my biggest challenges every week is to manage my energy needs. Every Sunday, I review the upcoming week. If it is clear, a rare event, I go to rehab everyday, run errands, do more yard work, clean closets or other projects.
If I have a doctor’s appointment, I prepare by going to rehab the day before but nothing else. I do not go to rehab on the day of a doctor’s appointment and I need a day to recover afterwards by only going to rehab and nothing else. Michael will also make dinner those nights.
The hardest times to manage are holidays and company. My mom and son are currently the only people we allow to stay with us. I just can’t manage it without getting sick.
My mom lives 100 miles away. She used to drive herself in and back home again. Now that she is 81-years old, Michael thinks that we should not expect her to make the trek. She usually comes in one day, stays two more days then we take her home the next morning. Just enough. She and I are usually hoarse by then from talking the entire time!
With experience, we discovered that I do best by having Michael drive out to pick her up by himself while I go to rehab. I will not be exhausted by the drive and will have much more energy in which to enjoy her visit.
The last two visits, Michael had appointments so I had to drive her home. The first time, I got sick. It was just too much. The last time was just a few days ago. That evening. I told Michael that I was so tired that I felt ill then slept for 10 hours. I did not go to rehab the next day and tried to take it easy. It may take another day to recover.
Sometimes the schedule, like this week for Thanksgiving, is just so packed that I take a pretty good hit. I try not to panic, go to rehab and fit the rest in somehow. I do end up paying for it for days afterwards and will spend weekends never leaving the house. It is how it is.
I think energy conservation will be the constant struggle as we go forward. I need to constantly adjust to stay as active as possible. Staying active, my friends, is the secret to living well with a bad diagnosis.
Next: Motivational Speaker?!?