Preface — I was going to shit can this post, but today (5/8/13) I found out I once again have pneumonia and pseudomonas. I also found out that a drug that is normally used to fights these illnesses’ is no longer effective in my body. The list of drugs which are effective continues to shorten. So having said that it seems this post has even more value than originally thought. Oh more great news, I will also have a pic line installed Friday, and after vacation most likely a medi-port. OH Joy!
Anyone that has followed my blog understands I have COPD, it is a terminal disease, I was “officially” diagnosed with COPD in 2006. and it’s the 4th leading killer of people worldwide. Like any other terminal disease it is not fun. (DUH!) Sometimes the worst part about it is that it takes such a damn long time to complete its’ mission, except at the very end when it races to the finish line. For those who don’t know COPD is the most common lung disease and is made up of a combination Emphysema and chronic bronchitis. COPD’s symptoms include a long-term cough with mucus, and shortness of breath or SOB. Eventually the outcome is the total destruction of the lungs. Gee, that sounds like fun already. If you hadn’t figured it out, I guess now is as good a time as any to warn you that this blog will be filled with my random morbid thoughts about this disease.
My recent pulmonary tests (4/13) revealed that my lung function is down to 41 percent, that’s like having a little over 3/4’s of one lung to use for all things breathing. It doesn’t mean I can run a half marathon. Any congestion, any irritant, overly spicy cooking, the smell of a single cigarette, a small brush fire a mile away, a hard breeze in my face, a mask which prevents the spreading of germs, even standing in the shower with the water in my face, trying to walk 50 yards without slowing down or stopping, all has a very real impact on my ability to breathe.
Like most COPD sufferers I can have a runny nose and cough on Monday and full-blown pneumonia by late Wednesday. I feel sometimes (but not all) that considering all my visits to the doctors I must be a hypochondriac. But the reality is I know I am not, and that these visits to the doctors help me in my fight against COPD. Yet even if I think I might be coming down with something my anxiety amps up, I fear the worst and my head plays mean games. But when I become sick, it is that much worst. The worst is the realization of another extended stay in the hospital.
For the last 2.5 years, it seems that, I have been going to the hospital every 6 months or so. Prior to the last visit, my average stay was about 7 days. But this last visit busted the curve with my 21 day stay. I truly hope that isn’t a new trend. I can eat only so much hospital meatloaf and egg noodles. But with each exacerbations and hospital stay, are generally followed a further diminishment of lung capability. Time is the enemy. Time always wins.
Speaking of fighting, (LOL a couple of paragraphs up) when does a person who is terminally ill have the right to stop fighting? How much anguish should a terminally ill person put their love ones and their friends thru? When does a terminally ill person stop making purchases for him or herself? When is it okay for the terminally ill person to start publicly feeling sorry for themselves? are these folks ever allowed to ask “my me?” We know we are a burden on our loved ones, but why does guilt sometimes have to come with it? Of course these and many questions I haven’t even added are all rhetorical. There aren’t any clear answers. The answers change from individual to individual. And the answers change with where a person is emotionally, mentally and the stage of the disease they are in.
Let me put you to rest, I have no intention of giving up or in to this fucking disease. I have no intention of laying down and dying, I have no intention of ever stopping my fight. And I will continue to do my very very best to aid and support other sufferers of this disease. I will continue to fight until I reach that day where I cannot breathe on my own. Then folks the fight is over and the disease has won.
To accommodate my illness I don’t travel anyplace that requires an airplane ride. Even with a FCC approved oxygen devices, many airlines will not accept you as a passenger. So for my wife and I to travel, it has to be car now or boat. But even going on a cruise requires a lot of advanced planning, so it would be extremely unlikely for me to take a last-minute trip. And we travel all the time.
Hell it has gotten to the point where I even attempt to schedule vacations around when I think I will be in the hospital, and how much time post hospitalization I will need to recover enough to travel. Even my wife looks at the calendar when we plans trips. It becomes second nature, and if you think about it, it even makes sense. But we make the plans and go.
I am about the most upbeat and perky person you would want to know. I am so upbeat I could drive you insane. I am a kidder, the class clown, a joker, someone who tries to smile a lot, and generally I hope I am someone who folks like to hang around. The best thing about me is I will not repeat will not just give up, I will not just lay down and die. Those are skills I just don’t have, nor will I learn them.
Folks I have gone on and on. I feel better writing this, and while it has some morbid stuff, I hope you understand I will not willing let COPD win. It will have to kick my ass.
As always your thoughts and comments are appreciated. Please take care, Bill