Folks when I write, I don’t write about cancer or kidney failure or tumors, or many other diseases, because I don’t have any real personal knowledge of them, I write about COPD because that is the evil I know, but even then I am not an expert, I don’t have all the right technical words, and I can’t quote the best meds. But I can and do write from the heart. You can argue about any factual claim I make, because I am not an expert, I am just someone who suffers from this disease. But what I do try to do is write for the folks that can’t or won’t. I am sure a lot of folks out there would like to be able to open up they’re soul and just yak about it, but have better sense than I do. There are tons of folks sicker than I am, further along than I am that could add volumes to what I have to say. And I wish they would, I would read every word. But I also know there are folks out there that have just been diagnosed, that don’t have a clue as to what is in store. And hopefully this helps. Yes parts are negative but much is positive. To them I can’t stress enough to get a doctor you trust, get a doctor you trust, get a doctor you trust and if necessary change your lifestyle to something that will best serve you in the future. You don’t have to make monumental changes slight changes can help you greatly.
In June 2012 I started this blog as a means for me to talk about the disease that was claiming my life. I wanted to spread the word, I wanted to talk about COPD, I wanted to share my feeling, and what I was physically feeling. In addition I wanted to talk about things that folks with terminal diseases usually don’t want to talk about, I wanted to share the emotional ups and downs of being terminally ill. For the first 20 or so posts I had remained true to that mission. Now in November 2013, I have posted 187 times. The significant portion of these posts don’t even mention COPD, they don’t tell the reader I have COPD, and if the reader doesn’t read any of the “How I feel today” posts the reader wouldn’t even know I was ill, hell if all you read were how I feel today, you would go “that’s not so bad” why is he bitching.
Let me take a moment to refresh you on what COPD is… A non-clinical description would be that the lungs are made up of thousands of little pockets that capture the oxygen from the air we breathe. These little pockets then transfer the oxygen from the air we breathe into the blood and everything is good. But these same pockets in a sufferer of COPD, begin to fill with crap, the more crap, the less air, the less air, the sufferer has shortness of breath, and an inability to complete tasks and life functions as they had in the pass. This gets progressively worst. When the pockets become filled they die, and can’t process the air into oxygen for our blood. As the disease continues there are less and less pockets to make this transfer. With each infection, with each exacerbation, more and more of these pockets become filled with crap and no longer function. There are a limited number of pockets available, the body doesn’t regenerate them, once they are gone, their gone! And as you can see, the more of these pockets that die off, one’s ability to breathe declines.
Here is a more clinical definition of COPD…. Chronic obstructive pulmonary disease (COPD) is an umbrella term for a group of respiratory tract diseases that is characterized by airflow obstruction or limitation. It can be caused by tobacco smoking, coal dust, and a wide variety of other stimuli. Individual can also be pre-disposed to having COPD, without ever smoking or living with a smoker. COPD is also known as CORD, COAD, COLD which respectively stand for chronic obstructive respiratory, airways, or lung disease. COPD has been referred to as CAL which stands for chronic airway limitation. COPD is a progressive disease. Obstructive changes in spirometry and decreases in diffusion capacity are typically seen before symptoms occur. Early signs and symptoms are shortness of breath on exertion, recurrent respiratory infections or a morning cough. As the disease continues, the symptoms are seen with increased frequency and severity. In the late stages, the patient often experiences severe cough, constant wheezing, and shortness of breath with minimal exertion or rest. At this late stage, progression to respiratory failure and death is common. It used to be thought that progression is typically caused by the patient’s continued exposure to tobacco smoke, but that simply isn’t true, once you have the disease it progresses, changes in behavior, in exercise, in eating habit, can all slow the progression, but the disease will continue. Although medications often decrease symptoms, it is not believed that they prevent the progression.
From time to time a person suffering from COPD will have an exacerbation, which in its’ simplest terms is a flare up of the disease. Sometimes these exacerbations are given the label “pneumonia”, and can put the individual into the hospital. Sometimes the exacerbation is such, that the individual is not hospitalized but treated at home with an intense drug therapy. One of the benchmarks for an exacerbation is when specific antibiotics and/or oral corticosteroids are prescribed to combat the illness, or if hospitalization is required. LOL in the clinical information I studied to create the above; one of the statements I read said no new exacerbation can start before the end of an existing exacerbation. To me this is a real DUH !!! moment, and strikes me in my funny bone every time I see it. Also something that struck me funny is that according to the stuff I read no exacerbation is over until the doctor says so. Clearly these are 2 “that ain’t no shit” statements. I guess its doctors putting on their lawyer hats. Apparently frequent exacerbations are those that happen more than 2 times in a year.
I have just spent the last 300 or more words defining COPD and Exacerbations, and what it does to the body. But I haven’t said a single word on what the disease does to the human.
I haven’t talked at all about physical limitations; the need to sometimes stretch one’s neck out to feel they can eat, or having to take smaller bites, and allowing that food to clear the passage way before the next bite. I haven’t spoken about having to grab a counter top to get from one side of a room to the other side. I haven’t spoken about how difficult it is sometimes to take a shower. I haven’t talked about how it severely hinders one’s sex life. I haven’t talked about getting dizzy walking to the mailbox and back without the supplemental oxygen. Nor have I spoke to the thousands of other things COPD makes it almost impossible to do, the keyword is almost. But I will try in this post (well not all of the impossible things), but thru out this post I will add specifics to the short list above. Also I haven’t spoken about the stress it puts on a relationship, or how COPD plays games with and in your head. But I will try in this post.
I have used this example in the past, and it still is the most representative of how difficult it is to breath with COPD. Take a small straw (a coffee stirrer) cut it in half and put each half in one of your nostrils, close your mouth and breathe thru the straws. Heck, get a regular size straw for that matter and try that, if you’re using a regular straw that is approximately how an individual in the early stages of COPD feels, every second, every minute, every hour, every day, 24/7/365. If you found a smaller straw, that’s how it is for me generally, but I will admit to having good days, and some not so good days.
If you catch COPD early with a great Doctor, a great diet and a great exercise program, and you watch everything you touch, you can keep COPD at bay for a long time. And by at bay I really mean you can extend your time without a lot of lifestyle changes. If you lucky, something other than COPD will kill you first. But folks, I have never heard of anyone dying of old age that had COPD. I am not making light of COPD or dying, I am not trying to make jokes about it. I have caught hell from other COPD sufferers for being so outspoken, or maybe flippant about the terminal nature of the disease. For not being a Pollyanna, but folks the truth is COPD IS TERMINAL, it is the 3rd leading cause of death in the US, and soon will be the leading cause of death in this country.
That folks in the nutshell is the physical aspect of the disease.
But let’s not forget, COPD gets into an individual’s head. It does so the moment the doctor says, “You have COPD and it is terminal”. I remember the 1st time I heard it, my wife and I were at my pulmonary Doctor’s office. We had the last appointment of the day. Steph came with me to hear 1st hand what the doctor had to say. In my case Doc Lungs said “Bill, you have COPD, in your condition you have a 50/50 chance to live 3 to 5 years.” I don’t remember the date, but I remember those words clearly. We asked all the right questions, what can we do to get the max amount of time, what drugs are available, can I get a lung transplant, what will happen if I change my diet, and lose a bunch of weight, and on and on. Doc Lungs answered each question in depth, and he didn’t sugar coat the answers, which I appreciated greatly, Steph was in tears for a part of the appointment, but she paid close attention to Doc Lungs, took notes, and left the appointment bound and determined. Folks that appointment was 6 years ago, I have changed my diet somewhat, I have exercised somewhat, I have lost some weight somewhat, and it has all helped. Because I am still here and earlier this year Doc Lungs again said I had a 50 pct chance to make it another 3 to 5 years. He is doing the best he can and I know it, that’s why I take his word on face value, and move on. I have never look at a calendar and said there’s my end date. Each year I buy a calendar 4 months before the old one expires. And let me say I like calendars that expire before me.
But for 6 years the debilitating effects of COPD have had their impact, on my body and my head. Six years ago I played golf every week sometimes 4 or 5 rounds in a week, I played poorly but I played, I can’t play anymore, and trust me I have tried. During my heyday, I could drive the ball 240 + yards regularly, when I stopped playing I could hit a 3 wood maybe 135 yds, I didn’t have a club in the bag that I could carry 140 yards. When I 1st went on oxygen, I could play a shot without supplemental oxygen, I could walk 30 or 40 yards to the green, stand around putt, and walk back with the group. Before I stopped I tried dragging my portable concentrator to the green but that extra 13 lbs got to me. I stopped having fun, so earlier this year I gave up my golf clubs (they had sat unused for 2 years). Up until this season, I have bowled in a winter league for the last 25 years. I gave it up this season. When I go grocery shopping the 1st thing I look for is a cart to put my oxygen machine it, because it is easier to push a cart than pull the 13 pound portable oxygen concentrator. Imagine when you bend over to tie your shoes you become out of breath. Walking 40 yards without the supplemental oxygen leaves you breathless, almost to the point of hyperventilating. The simple act of peeling a pound of shrimp makes you physically stop to gather yourself. Carrying the grocery’s from the car to the kitchen, makes you stop and pant for a minute to gather yourself. But these are physical acts, if you have COPD you learn to adjust. You learn to give yourself more time; you learn to accept the help of the grocery store in loading the car. You ensure that you have something in your path to grab onto if you become real short of breath. The physical limitations as tough as they are, if you have COPD you learn to adjust to them. You don’t have to stop making love, but you do adjust for your condition. You can go to the grocery store, but take your time, and don’t try and carry 9 bags at the same time. Have a cart handy to help you move stuff. Check with neighbors to see whose teens some extra spending money. There isn’t a single thing I can’t do today that I could do 6 years ago. Some things I have made a conscious decision to stop doing, but if I were willing I could. And I believe that includes golf. The disease forces you to change habits and to recognize limitations. But it doesn’t keep you from life. But folks as hard as it is to adjust to the physical limitations, and these change constantly as well, it is the mental adjustment one has to make which is so much more difficult, in my opinion.
I don’t and I won’t be sexist about this because COPD is not gender specific, it kicks males and females alike, equally hard. But being a guy I am clearly more comfortable talking about it from the guy perspective. Mentally it kicks me in the balls! It robes me of manhood. It makes me think less of myself. It embarrasses me; it makes me feel less manly. Folks, I hide my condition to the best of my ability. I truly do, and only a select few know just how hard it is for me. Thank God I have an outgoing personality that allows me to use words and smiles and stupid ham tricks to build and maintain a positive image. But folks I am constantly embarrassed by the need to use the handicapped parking, I have a roll-a-bout which I only use if I have to walk any distance over 50 yards without support, and using it embarrasses me, it makes me feel years older than I am. I think less of myself for not being able to do manly chores around the house, or to not be able to fix and repair things like I once could. Sometimes I need to use the grab bars in the bathroom to take a shower, or if I am recently recovering from an exacerbation I have a stool to sit upon as I shower. Having said all that I think I am finally over having to wear the cannula all the time. I am a member of a discussion group that focuses on COPD, and without that group I don’t know where I would really be, soft smile, there is strength in numbers, and my group gives me the numbers. We all suffer, some (not me) suffer quietly, some hide, some ache, but thru the group we all gain strength. We encourage each other, we support each other, and we share with each other the things that trouble us, the things that get us down and the things that make us smile.
Folks the process of dying isn’t fun. I have rambled on and on, and I don’t know if I have said all I wanted to, but for those of us suffering from a terminal disease, one of the battles we constantly wage war against is depression. But I must say this now and a million more times, depression is not a disease that focuses on the terminally ill. Depression is not a disease that is age sensitive. Depression is not gender specific, it can and does touch everyone, every age, every sex, every sexual orientation, every occupation, strong or weak, depression can find you and take you over. I don’t have a pill that cures you or me (but some pills can help), I don’t have something to read that changes things and makes it all good (but volumes and volumes of words can lift your spirits), I don’t have a special song that suddenly lifts my spirits (but I have many that do, but I also have many songs that will make me cry in a second). For the most part I do know when I begin to slip towards depression. I also need to say that I believe there are degrees of depression, and that not all forms are critical. I don’t know all of the things that trigger it (but I know a couple of my triggers), and trust me I don’t recognize immediately when I am about to slip into the various types of depression. But I know pretty quickly when I am feeling down.
My blog is about COPD, and from time to time I feel the need to ramble on about it. The rambling helps my head, it lightens the load I carry, and it makes the real issues less burdensome. For some it opens their eyes, for others it makes them want to bury their head in the sands. Some find my words, words they want to scream out. I just hope that it helps someone some small bit to either understand what might be going on with a loved one, or opens a door of understanding for them.
I am going to stop now; this has gone on and on. I asked a very good friend if she would edit this post, because I felt it was going to be my version of “War and Peace.” But she said no, she said get it all out, spill your guts, actually she called it “verbal vomit.” And I thought I used earthy words LOL. But I respect her greatly, so folks you have been subjected to my “verbal vomit.” If you have any questions, concerns or thoughts please feel free to add them. Thank you for taking the time and expending the energy to get thru this.