Save Your Lungs, So The Music Can Always Be Played
By Lori Palermo
On December 26, 2003 at 7:30 AM, my dad Wayne A. Litzenberger passed away at Easton Hospital, Easton, PA from COPD/Emphysema, he was 71 years old. My family experienced a very emotional and traumatic event that will impact our lives forever.
Dad was diagnosed with Emphysema in 1991. He had been a smoker since his early teenage years. Smoking as much as 1 ˝ to 2 packs a day. Upon hearing the diagnosis, he immediately quit smoking. However, for my dad, it was too late the damage from smoking had already been done. As the years went by, dad was frequently rushed to the hospital with a respiratory infection or double pneumonia, each time destroying more of his lung elasticity and taking more of his breathing capacity from him. Emphysema is a slow debilitating disease damaging the lungs in a way that only the patient may really realize. Dad was a very proud man and did not want to admit to any of us that doing simple chores were becoming harder and harder to accomplish. So, there were many times that dad’s anxiety and frustration with his difficulty in breathing would put him into respiratory distress, and again, dad would be taken by ambulance to the hospital. Once he would be in the hospital and they would give him oxygen and get him stabilized, he would feel safe again. Dad was always a fighter and each time would bounce back to a partially normal life.
Dad was a very gifted musician. He was a wonderful trumpet player, starting out playing in the school bands and in his later years was involved in many Swing Bands.
The title of my story “Save your lungs, so the music can always be played”, is my way of saying, as the years went by and dads breathing became worse, he did not have that air in his lungs any longer to play the trumpet. Emphysema took that precious air from him.
Dad had taught my son to play the trumpet. And now my nephew has also acquired dad’s talent. He was an excellent piano and organ player, and made sure my sister and I took lessons also learning to play these instruments.
My dad was a very family oriented man trying to give us the best life that he could.
He cherished and loved his wife dearly; he would do anything in the world for his two daughters, my sister and I, and was a very proud grandfather to three wonderful grandsons. He truly was the #1 DAD.
I have many wonderful memories of my dad. That I will hold on to for the rest of my life. Dad was a very traditional man, his favorite holiday was Christmas. And every year, he made the Christmas season the best ever for my sister and I. He loved Florida. Faithfully, every year we would take our annual trip to Florida, sight-seeing, going to Disney World (where he acted like a little boy again!), swimming in the gulf and our very favorite pass time, collecting seashells. These Florida vacations were very special to him…. to all of us. Dad also left us with boxes and boxes of pictures that he took through the years. He always had that camera around his neck. Serious and embarrassing pictures, dad took them all! Although it has been a year and a-half since dad’s passing, we still have not been able to go back and look at those pictures. I am sure it will just take time.
It always seemed that dad would get sick in December, but he never failed to make it home for Christmas. One time that is very vivid in my mind is when he had double pneumonia, and the first time they had to put him on the ventilator. It was truly heartbreaking seeing him lying there with the tube down his throat, not being able to talk, but only look at us with such fright in his eyes. We were terrified we were going to lose him. But, dad pulled through again. We would tease him and say he was like a cat with “nine lives”.
It still did not occur to me consciously that my dad’s lungs were truly failing. But, when I look back, I believe that with the faith that I have, god was telling me things that I did not actually want to believe. The Christmas before dad passed away, I took many family pictures with each of us posing with him. I started driving the hour to Mom and Dad’s house over the weekends and spending more time with him. We spent our time watching the family slides together. Those memories meant so much. On his last birthday, August 28, 2003, again, I took several family pictures. These are the last pictures we have of him.
In October, a few months before he passed away, I started researching Emphysema on the internet, and showed dad the information. We were even looking into a hospital to have him evaluated for Lung Volume Reduction Surgery. Unfortunately it was too late dads’ emphysema was already in the severe stages. His shortness of breath was becoming more noticeable, even with him trying to hide it. After he would use his nebulizer, my dad still had shortness of breath, and when I would ask him about it, he would just say, “Oh, it takes a little while to kick in”. Dad’s quality of life began getting worse and the fight he had in him was beginning to fade. I couldn’t help but notice that he was sitting much more, he became out of breath more while talking or eating.
On October 28th, I went with him and my mom to his doctor’s appointment to actually find out how bad he really was. The doctor told us he was in the “severe stages” of Emphysema, but, if he took care of himself, he could have a few more years of life.
His next appointment was scheduled for December 16th, but dad never made it.
Ten days before Christmas 2003, Dad was rushed to the hospital with another lung infection. Using the standard oxygen mask and the nasal cannula were not only uncomfortable for dad, but they were not giving him enough oxygen that he needed. So we were told the only other option was to put him on a ventilator and keep him comfortable until the infection was cleared up. We knew that dad was sick, but never expected that this time he would not be coming back home. This last infection was too much for his lungs to handle. He could not breathe without the ventilator and even then, he was suffering horribly.
On December 26th at 2:30 in the morning, I received that terrible call. I had to get down to the hospital immediately. My mom, my sister and I had to make the hardest decision of our lives. “What would dad have wanted us to do?” We could not imagine letting Dad go, but the decision we made ultimately resulted in dad’s death. That was the saddest day of my life, the day we had to take my dad off the ventilator and watch him slowly pass away. My dad, my friend, the man who I thought had eternal life was gone. The only comfort I have, is knowing, that dad can now breathe again without struggling. He is in heaven where there is all the air he will ever need.
In losing my dad to this debilitating disease, I regret that I did not start learning about COPD/Emphysema years ago. My family knew nothing about the disease. We heard the name Emphysema and thought, how bad could that be… I now believe there was so much more we could have done for dad and possibly given him those extra years, if we would have researched COPD/Emphysema in the early stages, learning more about this disease and how to live with it. If dad would have taken better care of himself, helping to fight off infections, using his oxygen as he was told to and going to pulmonary rehabilitation to keep up with his exercises. Dad was a very proud man he worked so hard to cover up his inability to breath, instead of facing it with our help. I believe he did not want to hurt us by letting us know just how bad his illness was getting. He kept it all inside, dealing with it through his anxiety and depression.
But, I imagine these are all questions that we will never really know the answers to.
Months after dad passed away, mom began telling my sister and I the struggles dad went through on a daily basis. Again, dad’s ego was bigger than life and he would not use his oxygen as he was told and definitely not go out in public with his oxygen. He would drive mom to the store, but would sit in the car while she shopped. He was scared to death to try to walk into the store afraid of becoming so out of breath that he would end up in respiratory distress. He would actually have to climb the steps into the house on his hands and knees, again, not being able to get the air into his lungs to walk up the steps. Mom would also have to help dad dress and undress. Lifting his arms over his head was literally impossible for him to do, totally taking his breath away. And his chest had become barrel shaped. His sleeping at night was also becoming more and more of a problem. He tried using the nasal cannula. Some nights it would help him get a few hours of sleep, but other nights, he would become so disgusted with it, he would just take it off. His doctor prescribed sleeping pills, but they did not help at all.
With dad realizing that he was losing his “Quality of Life”, he became depressed. He would tell my mom he honestly could not live like this any longer. He “did not” want to live like this any longer.
Since dads’ death I immediately became involved with the American Lung Association of PA www.lungusa.org – Ms Donna Reifler (email@example.com). In 2004 they sponsored their first “Breath of Life” Walk. I was honored when they picked me as the Family Team Chairperson. The Walk was “In Memory” of my dad. This was the most beautiful tribute to my dad that anyone could ever ask for. I had a team of 45 walkers called “The Knights of Melody” which was a Swing Band that dad had been in years ago. My team raised $3800.00 for the American Lung Association. Many of my friends and businesses in the area donated to this very worthwhile cause.
Since that time, I am involved and have had stories about my dad’s struggle with COPD/Emphysema published in: BBLW Site (Breathing Better, Living Well) www.breathingbetterlivingwell.com - Ms Jane Martin (firstname.lastname@example.org), EFFORTS Site (Emphysema Foundation for Our Right to Survive) www.emphysema.net – Mr. Gary Bain, COPD-International Site www.copd-international.com – Mr. Chip Gatchell, The Pulmonary Paper www.pulmonarypaper.org - Ms Celeste Belyea (email@example.com), Emphysema/COPD The Journal of Patient Centered Care – COPD as a Paradigm for Chronic Disease (firstname.lastname@example.org) - Ms. Vickie Scott, and St. Luke’s Hospital, Maumee, Ohio - Better Breathers Club (email@example.com) - Ms Debbie Matthews. I am also involved in several other internet Lung Disease Organizations. I have made many new and wonderful friends through these sites. I have taken the Freedom from Smoking Training Class, and am planning to start my own Smoking Cessation Class. I am on the committee for this year’s “Breath of Life” Walk at Nay Aug Park, Scranton, PA on Saturday, October 1, 2005 at 9:00 am.
As last years Family Team Chairperson for the American Lung Association’s “Breath of Life” Walk, I am asking that you consider helping in one of two ways. Please let me know if you will join my team, “The Knights of Melody” or if you are unable to walk with us perhaps you will consider sending a donation to our walk team effort. You may write a tax deductible check addressed to the American Lung Association and mail it to Lori Palermo RR#1, Box 1220, Gouldsboro, PA 18424. (570)842-6148 or e-mail me at firstname.lastname@example.org.
I have researched and learned so much about lung disease, not only from the sites that I have found on the internet, but also by contacting patients and their caregivers and listening to their stories of how they cope with their day to day accomplishments and struggles. They have all been such an inspiration to me. I have learned the causes, the symptoms and how to care for a person with COPD/Emphysema. Also how exercise, nutrition, and the use of oxygen helps keep the overall muscle tone of the body and the heart functioning stronger. I have learned that anxiety, depression and sleepless nights are all very common in Emphysema patients. And most importantly what COPD/Emphysema actually does to your lungs and your body.
My goals in becoming involved with these organizations is to learn all that I can about Lung Disease and to help families and their loved ones struggling with this disease know that there is information and help available to them – to let them know that they are not alone in this effort to fight for the “Breath of Life”. My other important goal that I have is to get the message out to adolescents and adults and inform them of the risks and dangers of cigarette smoking. And to fight for the Smoke-Free Workplace throughout the United States.
Losing my dad the way we did has left an emptiness in my heart that I feel will never heal. It doesn’t have to be that way for you, please get involved. If I can help just one family – even just one person – understand that there is hope, all the work that I am doing will be worth it.
I have also designed and am selling a “Lung Disease Awareness – Breathing is Life” Magnet. These magnets are $5.00 each. A portion of the proceeds will go to several organizations that I am involved with.
The day my dad was buried December 29th 2003, was a cold and dreary day. My heart was shattered as I realized that I had lost my father, the man who was “Unforgettable” in
My eyes. But as the service at the cemetery went on, the heavy clouds seemed to open up and the warm rays of the sun shone down on us. I lifted my face to the sky and felt the comfort of the suns’ warmth. I knew then it was my dad looking down on us as our
“Angel”, helping us to realize that we could…. and we must – go on and that he will always be with us in spirit.
“WHEN YOU CAN’T BREATHE, NOTHING ELSE MATTERS”
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