THE ANATOMY OF A DAY WITH

EMPHYSEMA

F. O. "Bud" Ellis

Struggling for breath I awake from the not so deep sleep, my head feels very light and my brain is crying out for more oxygen as I realize that the cannula is no longer in my nose and the badly needed oxygen is not going to my nose where it is supposed to go, but somewhere on the sheets of the bed where I have been lying. Feeling around I find the small plastic tubing and run my hand along it until I find the end where it has the nose piece and I bring it up and place the small end pieces back into my nostrils where they belong. I feel the pure oxygen as it touches the inside of my nares and I inhale deeply through my nose to get the benefit of the oxygen into my lungs.

My mind is racing, I want to get more and more of the life-giving oxygen into my lungs and at the same time I try to remain calm, as I also know that I am likely to go into a panic attack if I rush too much and let myself get too excited. The lack of oxygen to my brain and the rest of my body is having its effects on me. I struggle each morning to get back to the normal way of feeling as I sit on the side of the bed and bow my head and thank God that I have awakened in time again to replace the oxygen before the lack of it has done too much more damage to me. If there was only some way to keep that thing in place without being so uncomfortable for me to get any sleep at all.

After about ten minutes of sitting on the side of the bed, calming myself down, I arise and walk the few steps to the bathroom. Sitting myself down on the commode, instead of standing like most men to urinate, I do my regular morning thing and while still sitting I reach over to the sink and turn on the hot water, letting it run until it is as hot as it will get then place the wash rag under the spigot and after it is thoroughly soaked I bring it to my face and hold it over my eyes letting the heat from the wet rag soak into my eyelids and face.

After finishing in the bathroom I walk slowly back through the bedroom and holding the oxygen tubing in one hand to keep it free, I go to the kitchen, turn on the hot water and fill a coffee cup with it and then place the cup in the microwave and heat it up enough so I can use my coffee singles and have a good cup of hot steaming coffee. While the microwave is doing its job, I lean on the counter top and breathe deeply, in through the nose and out through the mouth, making sure that I have enough oxygen in my body that I can walk back into the living room and sit down with my morning cup of coffee.

When I get to the couch with my fresh coffee, and sit down, I again say a short prayer of thanks that I made it and didn't go into the dreaded panic attack. I take a couple of sips of coffee and feel the warmth as the liquid slides down my "windpipe" and warms my lungs; then I reach over the end of the small couch and pick up the business end of my nebulizer, put the contents of a vial of albuterol sulfate into the container and screw the top of it on and then turn on the small air pump, place the mouthpiece into my lips and start sucking the mist into my lungs. I feel my lungs relaxing as the medicine opens up the air passages and I start to calm down, knowing that now I will be able to breathe freely for another four or five hours before I have to take another breathing treatment to open myself up again.

This is nothing new to me. I have been going through this ritual for more than three years now and it is getting to be routine, except when I have gone too long without the oxygen due to sleeping without the tubes in place, then is when just the walk from the bathroom to the kitchen is too much for me and I am prone to go into a panic attack. That is the time when I must forego the luxury of that first cup of coffee and must stop and take the breathing treatment first to open my lungs up so they can do their job of circulating the oxygen into my bloodstream throughout my body.

Every morning it is about the same, I sit on the couch, finish the ritual of the treatment and chastise myself for not quitting smoking back in 1989 when they told me that I was developing emphysema. Instead, being a wise ass, I rationalized that it had taken me close to 47 years to just have the beginning of emphysema, it would take at least another twenty for it to do much harm and then I could quit and all that stuff. Little did I know that what took 47 years to get started, would only take six years to bring me down.

After finishing the breathing treatment, I return to the bathroom and as I can now breathe easily, I again sit on the commode and let the hot water run into the sink. When the water gets as hot as it will get, I pull up the little knob that will close the sink and let the water accumulate in the sink, add my scentless liquid soap and watch the bubbles form on top of the water. Often wondered why soap powder and liquid soap makes so many bubbles.

After I finish my sponge bath at the sink, I return to the side of the bed, sit down and retrieve my clothes from the floor where I let them drop last night. I decide that since I put them on clean yesterday that I can get another day's wear from them before changing into something else and I proceed to get dressed

Once the morning ritual of getting up, taking my morning breathing treatment, getting cleaned up and dressed is over; it is now time for me to fix breakfast, or in some cases when I feel like it, to go down to my favorite restaurant and eat breakfast. This morning I opt for fixing my own as I am hungry and do not feel like the drive down to the restaurant. So it is back through the living room, pick up my coffee cup and then into the small kitchen. This is not a long trip, as the small apartment I live in has been planned out and is really quite small. I can reach anywhere in the place with only a 24 feet long plastic oxygen hose. My breakfast this morning will consist of another cup of coffee, instant oatmeal, with peaches and cream flavoring, and two small pork chops which I will cook on the electric range.

While eating my breakfast I take my morning doses of medicine and watch the morning news on the television. My morning medicine as usual, is one 200 mg of Theo-dur, 1 5 mg. of prednisone, 20 mg. of pepcid, one half of a .25mg of xanax as I refuse to take a whole one and be sleepy for the rest of the day. My evening meds will consist of the same dosage as they have been structured this way over the last three years and do not change unless I come down with some kind of infection and need some other medications for a while, or a temporary increase in the prednisone or the Theo-dur.

Breakfast over, meds taken, I can now relax and seeing that there is nothing else on the TV that interests me, I go over to the computer touch the mouse, the screen-saver disappears and Windows 95 icons come up decorating my screen. I log on to my local ISP and go into the news groups to read the posts on a.s.s.s. As usual there are about 40 new ones that have came in overnight and I start browsing through them, skipping through the ones that are congratulatory from one to another, looking for something that will catch my eye and tell me that this one has something interesting for me to read that maybe I have not heard a hundred or so times before. Gosh!! isn't it strange how so many of us have had the very same experiences, tried the same methods of quitting smoking, and failed to quit for the very same reason. But here we are, still looking for the one thing that will work for us, searching desperately for some way we can quit smoking without having to go through all the pain and the suffering like the others. But that is not to be; it all boils down to the same thing. The addiction that has built up over many years of smoking will not go away overnight, in a week, or even a month. No it will take some time. Habits have to be changed, new ones learned and even some friends will be lost to us because they continue to smoke and we cannot stand to be around them as their smoking will lead us back to the cigarettes that we must avoid at all costs for the first few days, weeks, or in some cases, months.

Having read the news group for the morning and maybe posting a follow up to one or two, I log off the ISP and being my breakfast has had time to digest, I go over to the wheel-chair that is waiting in the corner for me, check out the portable oxygen tank that is in the case hung over the handles in back of the chair, make sure that it has enough oxygen to last me for about an hour, hook myself up to it and take off the long oxygen tube that has been trailing me all over the apartment. Time for me to take my morning walk downstairs on the ground floor of the building. I take the handles in back of the wheelchair and just as if someone was sitting in the chair, I push it over to the door and let myself out and into the hallway and down to the elevator. I try to hold my breath as I walk by the door of my next-door neighbor's apartment as the stench of cigarette smoke permeates the hallway as I go by his door. God!! I wish he would quit smoking so much. A very nice guy but he is another that I must avoid because of the cigarettes.

Once on the ground floor, I say my usual good morning to the desk- clerk and proceed around the corner to the mail box and slide the tab over to the right that lets the people who run the place know that I am up and all is well with me this morning. Then I proceed with my morning walk up and down the hallway, using the wheelchair for balance and just in case I get tired I can use it to sit in. This morning I am going for twenty minutes at least before I stop.

MID DAY EXERCISE AND COPING

Well, the morning walk was a good one and I tired myself out as usual then it is time for me to take me a nap. I return to the apartment, turn the TV on to one of the morning talk shows and lie on the couch and in just a few minutes I am asleep.

Usually I will only sleep for around an hour and after awakening I wash the sleep from my eyes and any other thing I need to do at the moment. Walk slowly back into the living room and after a quick look at the TV decide that it isn't worth watching. Two people on one of those talk shows, yelling at each other at the same time while some member of the audience tries to give her advice to them about their situation. Enough of that for me.

Decide that I could use a sandwich and a glass of milk. I walk back to the kitchen, open the refrigerator and select a piece of bologna, some mayo then reach for the loaf of wheat bread that is on top of the microwave, make me the sandwich, replace things to the refrigerator and return to the couch and sit down to enjoy my little repast. Most of the time I do not eat sandwiches but in this case it is just what the doctor ordered and I am well pleased with my choice.

When I have finished my sandwich I sit around for a few minutes debating on the computer or back downstairs to mess around a bit more before checking things our again. I finally decide on going back downstairs and just messing around for a while. There are some people who I need to see. So back down stairs I go pushing my wheelchair and into the rec room where several of the ladies and a couple of men are sitting around one of the tables, chatting away and enjoying a piece of cake that one of the men has baked. I sit down for a few minutes and join in the friendly banter that goes on between us. We are all over the age of 62 and some of the ladies are well into their eighties. One has lived in this building for over twenty five years. She was the second one to move in when the building was finished.

I get bored with this after about fifteen minutes, and sitting in my wheel chair, I wheel myself to the back door of the building and out into the sunshine. I place myself where the sun shines directly on my face, close my eyes and let the sun add some color to my skin. I worked outside most all my life and I miss the outdoors and the warmth of the sun on my skin. Right now tho, I have to watch how long I stay in the sun as the prednisone has made my skin real sensitive and too much sun is not good for me as I will burn easily and then when anything just barely rubs against me my skin will tear and peel back and start bleeding. I only allow myself short periods of time in the sun and then I come back inside and see if I can find other things to do.

It is about the middle of the afternoon and I start the afternoon session of exercise. I have my wheelchair with my oxygen tank inside the bag, hanging across the handles. I stand up, and start my walking up and down the hallway. I have walked this trip many many times. I once counted the tiles on the floor and it is 180 feet from the outside door on one end of the building to the outside door on the other end of the building. I have figured it out that 3.66 round trips will make a quarter of a mile, 7.33 will be a half, and 14.66 will be a mile, up and back. I also time myself along with the walking, I want to walk for at least 20 minutes, and sometimes more so I pace myself so I will not get overly winded as I make my rounds, up and back, up and back.

Occasionally I stop along the way to stop and deep breathe a minute or more to make sure that I do not over do myself. I have a little oximeter that fits over the end of one of my fingers that tells me the saturation level of the oxygen in my blood, and my heart rate. My doctor advised me to try to get the heart to around 130 beats per minute as I work out, so I do not mind the heart rate going up that high at all. It will come back down to a reasonable number in just a few minutes if I just back off and rest just a few minutes.

Usually after my thirty minutes of walking I sit around downstairs and chat some more with the other residents of the building as the mail usually comes in about 4 PM and I wait for it to be sorted and placed in our mailboxes.

After getting my mail I head back to the elevator and my apartment. If I have any mail worth keeping, I tend to it and then it is back on the computer, to the newsgroups to see how things are going on my favorite ones. After reading what I wish and posting a little, I go the the IRC internet relay chat) and to the #nosmokers chat channel. There are sometimes people there and some times I may have to just sit there and occupy the channel until someone comes around wanting to chat. It is a catch as catch can situation, but one where we all can understand that each of us are individuals in our quit and even tho we all are trying to rid ourselves of the smoking addiction, we are still much different in what we need to do in order to beat the addiction. We must just be patient and wait, and when we do get the chance to share with another, it is a very good way to find the relief of stress, from everyday life.

One thing about it, I do not need a reminder to tell me when I should take one of my "breathing treatments" When I feel myself struggling to get enough oxygen down into my lungs I know that it is time for me to head for the nebulizer, fill the little cup and get myself settled down for a 10 to 12 minute session of deep breathing the mist that comes from the albuterol sulfate I usually have to take at least three each day and sometimes I will go as high as five in one day if the weather is humid. I have learned to focus my mind on something else while inhaling the mist. I used to just sit and breathe, concentration of breathing using the diaphragm and exhaling through the pursed lips. That type of deep breathing has now become second nature to me and I can now concentrate on other things while getting the meds into my system.

Another thing that has become second nature to me, is to hold a portion of the 24' plastic hose in my hand as I walk slowly from place to place in the apartment, and at the same time I have learned to practice the deep-breathing as I move around. Slowly in through the nose and with my lips pursed out through the mouth. This not only keeps my lungs supplied with the life giving oxygen, by exhaling through my pursed lips, it helps them to expel the carbon dioxide inside my lungs and make a little more space for the oxygen. Sometimes I do not even have to think about the way I am having to breathe nowadays, over the last few years it has become second-nature to me to breathe in this fashion. They say that we can become accustomed to just about anything in our lives and in a way I believe them.

COPING IN THE EVENING TIMES

After finishing my supper, and taking the meds, I again return to the computer and go through the routine of checking the e-mail and the newsgroups. After that it is to the Irc to see if anyone is online and wanting to talk, sometimes there are, sometimes no one is on and I kinda piddle around waiting for someone to come around that is interested in talking about stopping smoking.

The Irc has taken up a lot of my time lately and I have made countless friends there. Many of them know that I have emphysema and we are open with how we feel and talk about it when we feel like it. I do not ask for pity from them, nor do I get it. When my days are bad and I don't feel like talk I may just lurk and not say anything. Other times I will be very active and talk their heads off. One way of getting instant support is on the chat channel and I for one am grateful to be able to chat with people who have been through the same things that I am going through.

Some evening I may sit at the computer for hours on end, chatting with first this one and then another on the channel. Sometimes there are as many as fifteen to twenty people on the channel at the same time and that is when it is fast paced and I have to be very alert and keep my eyes on the computer screen. We discuss a wide variety of subjects there, from just quitting smoking and the techniques we used,, to our health before and after the quit, and as some of us may be in the midst of some personal problems, we ask the advice and counseling of others. If we have some problem that is not for the whole group, we go on a private chat where we are only talking to one chosen person and no one else can see what we are saying to each other.

There have been many times that I have taken someone into the private chat, and just by talking to them and letting them know that I have had a problem that was, or is, just about the same as their's they will listen and in a few minutes they may be calmed down and are again able to bear up under the stress of quitting smoking. Again, thank God for the technology of today.

Living alone like I do, I do not keep any regular hours of going to bed and getting up.. The only times I need to be up at a certain time of the morning is when the aide from Neighborly Senior Services is due to come in and I try to be up, dressed and at least had my breathing treatment and my first cup of coffee. Most of the nights I am up until around 2 or 3 o'clock in the morning and awaken somewhere around 8 A.M.

I have found that the nights and early morning are the best breathing times for me and that is one of the reasons that I stay up so late and am on the computer. I think much better when I do not have to concentrate on my breathing techniques. During the middle part of the day, I am up and around and it is hard for me to move about and keep the oxygen saturation up in my blood stream. I have been informed by my pulmonary doctor that the percentage should be kept over 90% as it is dangerous to my heart when it is below that as the heart has to work harder to find the oxygen and therefore overworks the heart and in time it will become enlarged and therefore increase the chances of a heart attack. I have enough to worry about besides that. Maybe if I am lucky, I will be able to avoid that.

MARCH, 1998

Folks, a lot has happened since I wrote the previous article and posted it on the newsgroup alt.support.stop-smoking newsgroup. There has been so many changes in my life that it will take me quite some time to tell you about it. I do want everyone to know that I have remained quit smoking throughout this time and now have over two years of no smoking under my belt and the improvements to not only my physical well being but to the mental state of mind has been so profound that it is really hard to understand why I kept on smoking throughout the years when deep down inside I knew that I should quit, but I just kept on believing that I could not quit and therefore kept on ruining my health.

I entered re-hab therapy in February of 1996 and at that time I had to be wheeled into the hospital, up one long hallway, and down another to get to the gym where we worked out on the machines. I could hardly walk over twenty feet without the aid of something to hold on to and so the volunteer who drove the little golf cart that transported me from the out-patient parking lot to the re-hab center, would get a wheel chair and help me get to the classes, and when I got ready to go, he would again help me to the cart and then transport me to my car so I really only had to move just a few feet to get into and out of my car.

The first few times that I attended the re-hab classes I could only stay on the treadmill for about 3 to 5 minutes at a time with the speed turned to around 1 mile per hour. Each week I was encouraged to stay on it longer and would you believe that after about six weeks of trying I was able to stay on it for twenty minutes at over one mile per hour. Now I can stay on the treadmill for over an hour if I desire to at a speed of 1.5 mph. The usual time for me to walk is around 30 minutes as that leaves me energy enough to ride the stationary bike, and to get on one of the upper body machines and work with my arms and shoulders.

They also have taught me the proper way of using my diaphragm while breathing and therefore getting the full benefit of what lung functions that I have left after all those years of smoking. Therapy has gotten me completely out of the wheel chair, and now I get around very well without using anything if I want to. But I do have a three wheeled walker that I use , mostly to carry the portable oxygen tank instead of having to carry it as a shoulder bag. Life is getting better and I can now see that I might at some time be able to get off the oxygen if things keep on improving the way they are. It has taken close to two years of therapy to do this but it is well worth it.

I have applied to be one of the subjects in a Lung Volume Reduction Surgery study that is going on and I am waiting for my call from one of the research centers that is going to be involved in the study. I do not know if I will be one of the ones chosen for the operation or not and there is a 50/50 chance that I will either get the operation, or I will be one of the ones who will only get more rehabilitation. I can only hope and pray that I will be one of the more fortunate ones that gets the surgery. Medicare will not now pay for this surgery, so the only way I can afford it is to be one of the volunteers. Wish me luck on that.

Two years ago when I quit smoking I weighed around 140 pounds. Today I weigh somewhere around 165 and feel great most of the time. I still get short of breath if I overdo things as my lungs were too far gone to recover from all the abuse that I dealt them. I am however getting better, slowly but surely I am going to get even better one way or the other. With all the new medications that are coming on the market, someone will come up with something that will be of help to people like me, and we will be able to be helped. Right now all we can do is to maintain what we have and learn to use what we have in the best way possible.

Quitting smoking is the one most important thing a person can do for their health. For those who are putting off quitting smoking for one reason or the other; there is never a "right" time to quit smoking, there is never an ideal time, the sooner you quit the easier it will be to quit and the less damage you will do to your health. Remember this....At this time there is not anything that will help your lungs recover from the ravages of emphysema, there is no cure for it and your lungs will not heal once the damage is done. Quitting now is the best way to prevent more damage and the sooner you do that, the better off you will be.

For any of you that are interested in seeing just how much the emphysema will affect your lungs take a look at my web page: http://geocities.datacellar.net/Heartland/Ranch/6100. There is a link there to many pictures of diseased lungs and the first one that comes up is the lungs of a person who passed on due to smoking related causes. When I look at that picture, I feel like I am really looking inside myself at my own lungs. That alone is enough to make me never want to even see another cigarette in my life. Now I wonder what made me continue to smoke, knowing the dangers of the addiction like I did. I have asked myself many times just why would I do such a thing after all the misery that it was causing me. Call it a "death wish" I suppose, but when it came down to the time when it was quit or die, I chose to live and quit smoking.

That choice does not have to be your's, If you have been a smoker for only a few short years, then your health may or may not be compromised. You may think that just because you do not feel like it has bothered you that you don't have to quit. But, the disease that smoking can and does cause is Emphysema, and it is a sneaky type of ailment. You can have it for years and never realize that you have it. You just automatically adjust your life around the slow changes that come to you and your body. If you find that you are getting a little short of breath when you walk up a flight of stairs, you start waiting on an elevator, if a couple of blocks walk down to your favorite convenience store is getting too much for you; you send someone for what you want or you drive down there to get what you want. We compensate for those things and go on believing that there is nothing wrong with us, we are just "out-of-shape" . There are many other signs that we are going to have problems in breathing should we continue smoking.

If you are a smoker, and you have been one for a period of time over 5 to 10 years, you can pretty well bet that your health has been compromised to a point. I truly believe that in that case one should get a chest x-ray, and a pulmonary function test to find out if there is damage to the lungs and if there is not damage, you can consider yourself lucky and quitting now will help to assure you that your life can be long and much fuller because you have chosen to be a non smoker...

F. O. "Bud" Ellis

Clearwater, Fl. Click here to return to main page

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