When you are diagnosed with Emphysema there are some hard facts you have to face and accept.
Emphysema is a nasty disease. It kills you slowly and painfully. It steals your dignity and self esteem. It causes your loved ones almost as much anguish as it does you. It is not curable and it is going to get progressively worse as time goes by.
With that said, you can learn to live with this disease and enjoy your life.
When you first learn that you have Emphysema it is almost too painful to admit to yourself or anyone else. It takes a little time to adjust to what is ahead for you, even though at some level you already knew it.
I was still working when I was diagnosed and continued to work for a few more years. I finally did have to retire and would have had to leave sooner had it not been for the generosity of the people with whom I worked. They were more than kind to me. I will always be indebted to them. The entire crew did everything they could to be helpful to me. They saw to it that I never had to try to lift or carry anything and at the end of my employment when it was difficult for me to even walk very far, they waited on me even more. Everyone should have such good friends. By staying on those extra months I was able to take early retirement and have a comfortable income.
There is always the guilt that goes with knowing that you didn't take care of yourself as you should have. I started smoking as a teenager. It was my great rebellion. At that time no one even considered that it was a health hazard. Later, when the warnings began to come out smokers didn't want to believe what they were hearing. And, we were addicted. I had no idea the control the nicotine had over me until I tried to quit. That was an experience I don't care to repeat.
I try not to play the "what if" game but must admit to doing it once in a while. It's a waste of time but probably a pretty human thing to do. Now it's time to live in the present and do all that is possible to make life comfortable for yourself and your family.
In order to live with this disease as comfortably as possible you need to find a doctor who will treat you with compassion and listen to you. I have an excellent family physican who refers me if I need additional workup or for consultation. We work together to keep me going and comfortable. I trust his judgment and feel that he trusts me to keep him imformed of changes.
When I have a problem or a question about something I always try to find information to help me understand it better. I was appalled at the lack of information available on Emphysema. There was so little written for the lay person to help them deal with their disease.
I enlisted the help of my Doctor and he located a book for me which has been an incredible help. I ordered it from Consumer Guide but feel sure it's available from most book stores.
The title is Living Well with Chronic Asthma, Bronchitis, and Emphysema. It is written by Myra B. and Berton R. Shayevitz, M.D. The ISBN number is 0-89043-416-6. I read it from cover to cover when I got it and consult it often even now.
The links I have on this page also have helpful information. One is that of a man with the disease and I find it very interesting to listen to how he deals with it. He has many links listed which I will not duplicate.
Yes, people will stare. And, yes, it does bother me. But, you do get used to it and I've discovered that many times they are only interested in the equipment you're using. I've had so many people ask me about my walker. I'm always glad to give them the information on where I got it. If it helps someone else to not be housebound I'm pleased that they ask.
The nebulizer was a problem for me. I needed a place to be comfortable with it but didn't want it setting out for everyone to see. I am trying very hard not to have my house look like a hospital. So, Ralph came to the rescue. He built a small cabinet without a back to put it in. We slide it in from the back, there is a door on the front to open to use it. Makes a nice side table for the chair I have there (in the bedroom) when it's not in use. I can sit there and do my meds and watch TV and not feel so confined or put upon.
I also have a small portable nebulizer. It is battery operated and weighs less than one pound. You can take it anywhere with you. It makes practically no noise and would not be that noticeable if you needed to use it in a somewhat public place. It's easy to care for and use. Check with your pharmacy for brands and prices. They are available and if not in stock can be ordered.
One of the first things I learned when I became disabled was that all my clothing needed pockets. You learn to conserve energy. And to do that you carry things with you that you would ordinarily not have. You need extra kleenex. I keep my Proventil inhaler with me at all times. When my breathing closes down I want to be able to reach it immediately. I also keep a couple of cough drops or mints handy. The medications cause dry mouth and it helps to have something to pop in your mouth once in a while. A chap stick or something similar is good too. Again, due to dryness from the medications. I always have a glass of ice water close by. Fluids are important and water is best for you.
Another big problem for people with emphysema is perfumed products. The irritants can kick off an allergic reaction and cause real problems. They sometimes make me cough extremely hard and sometimes close off my breathing. We have learned to watch carefully for non-scented laundry products and paper products.
You may have to ask people not to wear perfumes in your home. For me they are just too risky. I've been embarrassed to have to make that request but it's also embarrassing and painful to have an asthma like attack and it can be avoided. Have learned to stay away from stores and shops with candles and other scented gifts.
Many of the women's magazines have perfumed inserts in them that can set off a terrible breathing episode. The perfume permeates the paper and you can' t get rid of it. You can get copies of most magazines without the inserts. Call the 800 number in the magazine about subscriptions or change of address. Tell them you need unperfumed copies. I've been able to do that with four of my magazines. I would have cancelled the subscriptions otherwise. They had to be tossed because of the allergic reaction.
I wonder sometimes if this over abundance of perfumed everything isn't part of the reason why so many of our children are suffering from asthma now. They are trapped and helpless to get away from it.
The weather will make a big difference in how you are able to function each day. Since we can't control the weather we have to control our activities during the times when weather conditions are unfavorable. When it's rainy and damp I know that I need to stay in and be more quiet. Breathing is much harder then. Stormy weather is very difficult. The barometer running up and down will affect your ability to breathe freely.
We have learned that keeping the temperature moderated in our home is most helpful. Not too hot and not too cold. For us the right level is at about 70 degrees. It might be different for someone else. Find the zone where you are most comfortable and breathe the easiest and adjust accordingly. You will find that you will be using air conditioning and possibly the furnace more than usual.
We also have several air cleaners in use. They help to eliminate odors in the house. Cooking odors can sometimes be as much a problem as perfumes. Particularly if something burns. We have one ozone generator which is very good at eliminating odors and take it with us when we travel. It helps to clean the air in motel rooms that have been sprayed with deodorizers. I have reached the point where it isn't likely that I'll be doing overnight travel anymore but that little machine allowed us to go and enjoy for a long time.
It is essential to plan for emergencies when you have emphysema. If you are oxygen dependant you must give thought to having enough O2 on hand to last a few hours during a power outage. Having it stored in a location that is easy to access and being familiar with the equipment is most important.
In cold weather, know where you can find a blanket quickly to keep warm during power outages. In hot weather you will need to plan for somewhere to go for cool air. Maybe to a mall, a public building like a library or just driving around in an air conditioned vehicle for a while will solve the problem.
You should register with your utility company as a handicapped person and they will make every effort to get your service up and going as soon as possible. They will ask you to have a form signed by your physician and will give you a number to call when outages occur.
With plans like these made ahead of time you can weather the storms with little fuss and bother. You won't have to be frightened if you have a plan.
This story is written by one of my cousins. It eeems we have some history with this disease. Looking back I know that my Dad had it too before he died. He had a massive heart attack that took him but the other symptoms were there for a long time. We just didn't recognize them. This uncle was very kind to me when my Dad died. I've always remembered with with a great deal of affection.
The human instinct for survival is a strong force. I can remember watching my father, John Williams, when in his seventies, struggling to breathe because of limitations inflicted by severe lung disease. Confined to his house in Iowa, attached to an oxygen concentrator by a length of plastic tubing, he would make his exhausting rounds from bed, to table, to easy chair by the front window. His years of suffering, mostly in stoic silence, had taught him to take each step cautiously, judging the effort needed to the energy available. A move made too quickly could deplete his oxygen level fast enough to cause him to collapse into a heap on the floor. On those occasions, his determination to get up and keep going collided with his knowledge that forcing himself to be patient was the only path to regaining his strength. The conflict between wanting to stand up quickly and needing to rest was evident in his expressions of impatience and embarrassment. He was impatient because he had many things he wanted to accomplish, and embarrassed because he was, after all, a grown man who should be able to care for himself.
The struggle became more difficult as the years went by, yet my father’s resolve to keep on breathing never wavered. He maintained a daily schedule of hygiene and diet, kept up a lively interest in politics, and regularly watched and commented on the local and national news. His Democratic Party views were unwavering in clarity and reasoned thought. His abundant correspondence included letters to family members and articles written for historical journals about his early years in southern Missouri. He remembered and recorded events about the deforestation of the Ozark pine forests that might otherwise not be part of history. His recollected sights and sounds and emotions parallel those of today’s efforts to save the redwoods and old growth forests. Generally cheerful and always appreciative of the help my mother generously provided, he found something every day for which to be grateful. Even though his frail body was wracked with disability, his mind was alert and his sense of humor never abandoned him.
I recall these memories of my father’s illness because I now find myself in the same condition. My physical abilities are severely limited, breathing is extremely difficult, and I, too, am attached to an oxygen supply with a length of plastic tubing. This condition gives me great insight into what my father must have felt, but couldn’t communicate; what he must have feared, but couldn’t overcome; what he must have hoped and prayed for, but had no expectations that those hopes and prayers would ever be realized.
I know why he could never tell a healthy person of the futility, at times, of trying to take a normal breath. I know of the hopelessness he must have felt when the usually simple act of breathing sometimes required more energy than it produced. I know he could never explain the feeling of helplessness one feels as vision blurs from oxygen starvation, or dims from the mere act of standing too quickly. And who would understand the moment of terrible insecurity felt on seeing his forlorn reflection in the privacy of a bathroom mirror, and wondering if this frightened countenance, this helpless old man, desperately clinging to the washbasin, was the last view he’d have of himself? Who could understand the embarrassment after recovering from a struggle to maintain consciousness? Who could recognize the inner turmoil as he tried to convince everyone that he’s all right, that he never felt better? Would anyone understand his considerable but humbling reliance on his thoughtful caregiver, as I do on mine?
From my own experience, I sometimes wonder if my father often had dreams of running. Not the kind of running one does when in a hurry, but the kind one does in joyful abandon, celebrating life and freedom the way boys do when school is out for the summer and a new-found forest needs exploring. I wonder how often he wished he could again do his own maintenance on his car and house. I wonder if he came to feel that his home, once happy and humming with his own activity, was not only a refuge from a world suddenly going too fast to keep up with, but also a gentle prison from which there would be little chance to escape.
Genetics plays an important part in my arriving at my father’s condition in life. Like him, I have maintained a strong sense of humor into my seventies, a lively interest in politics and current events, locally and worldwide. I read a lot, correspond regularly with several people, and write when I can.
Lately, I’ve been wondering just how strong the genetic influence is. After living for seventy seven years, my father died of a massive stroke in the midst of laughing at a joke my brother had told. It was twenty years - almost to the day - after his illness was diagnosed. I try not to think that in about three months, it will be twenty years since my illness was diagnosed. And lately, after laughing at a joke, I check to make sure I’m still here. I can’t tell you how grateful it makes me feel when I find that I am.
I plan to leave this page in progress so we can add any new information that looks helpful.
If you have other web sites you feel would be helpful please e-mail me at the address below and we will see if we can link to them.
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