Since I have started my blog many folks have asked me about the progression of my COPD, I have been asked; do you know what caused it, how long have I had COPD, when did it start or and how fast has it moved taking over my lungs. None of those questions do I have definitive answers. One of the easiest answers I do have is; my COPD didn’t start the day I was diagnosed.
My COPD started a long time ago. It may or may not have started with the first cigarette I smoked, or maybe the 1st time I came in contact with asbestos could have been the trigger, then again maybe it was that 1st bad cold or the 1st time I got bronchitis. My doctor tells me I was predisposed to COPD, like others are predisposed to heart disease, cancer or kidney disease. Even if I did everything right, lived in a bubble, exercised, ate correctly, and got plenty of rest I could/would have end up with the COPD. This post is about COPD because it is the disease of those I mentioned that I am the most familiar.
There are four stages of COPD; they are Mild, Moderate, Severe and Very Severe. Very Severe COPD is now starting to be referred to as “End Stage” and I like term better than Very Severe. This post is about how I have progressed thru the stages of COPD. I will to talk about it in hindsight, trying to pick up the clues of the disease, recalling bouts of chronic bronchitis, how often I was sick, the duration of the bout, what did I did to prevent future bouts, I will also share what if any medications I can remember. Hopefully this will show folks how slowly COPD takes over your lungs. Also I will describe circumstances that I feel are unique to me, which has expedited the disease thru my lungs. Which unfortunately for me has possible reduced my life span by as much as 10 to 15 years.
I suspect the reason that the COPD stages begin with MILD rather than some lesser descriptive word is that by the time you are diagnosed you are there, you’re not working your way towards COPD, you already have COPD. I began to suffer the leading edge signs of COPD about 30 years ago. This was about the time that I started having issues with bronchitis. During my mid 30’s I was having documented cases of bronchitis at least 2 times a year (where I actually when to a doctor and was prescribed medicine), in addition there were at least one or 2 more incidents a year that when undocumented (where I didn’t go to a doctor, or get medication, I just suffered thru it). Back then I could get over a case of bronchitis in 4 or 5 days. The Zpak was the most common form of medication used back then. Maybe amoxicillin if memory serves.
I was officially diagnosed with COPD ten or so years ago (around 2004). But please understand I had been suffering the symptoms and had been treated for chronic bronchitis for almost 20 years prior to the “official diagnoses.” The diagnoses came as a result of a breathing and sleep test, and at the time I was told I was in the Moderate (but tail end) stage of COPD. All the benchmark signs were there long before I was diagnosed; getting winded with heavy exertion, colds that became the flu, which later became bronchitis. When I was diagnosed with COPD I had already stopped smoking for over 10 years, and while I got some of my wind back after I quit, it all never came back! But also, I was not in good shape, I was extremely overweight (and still am), my diet sucked, I did not have an exercise program, and my exercises really consisted of meeting the needs of family and doing family related chores (cutting grass, weed wacking, building flower boxes and the like). Being honest I just didn’t take care of myself. Another indication that led to my diagnoses of COPD was a review of my medical history. At this point I was having at least 2 serious bouts of bronchitis a year, I was given a Zpak, I was advised to nebulize Albuterol 2 or 3 times a day, as needed, I was prescribed a rescue inhaler, and I was also treated with Amoxicillin for 10 to 14 days. I took all the pills as directed, but was extremely lax on using the nebulizer, and even more lax (if possible) with the rescue inhaler. Also the bouts of bronchitis were so bad that I was missing more and more time at work.
Two events happened over the next 4 years (2004-08) that rapidly moved me from Moderate to Severe and into Very Severe COPD. In July of 2006 I had a Bi-lateral Pulmonary Embolism, amazingly I only missed a couple weeks of work, but it took months to regain my strength. Also I did notice a significant difference in my ability to breath. Everything was more difficult, but it was still manageable and I was not on Oxygen 24/7. The second event took place in March 2008, I had heart bypass surgery. Two days after the surgery a hole developed in my left lung, right behind the heart. It was decided to see if the hole would heal itself (for 10 days), it didn’t, and about 14 days after heart surgery I was again on the operating table having the hole in my lung repaired. I am not going into all the details here, but I ended up spending over 100 days in the hospital, and came out of the hospital on oxygen 24/7/365 and in the END (Very Severe) stage of COPD. Once I was well enough to take a breathing test it clearly showed how rapidly my disease had progressed, and that I was now in fact in the End Stage of COPD. I do not for a moment believe this is the natural progression. I believe that between the bi-lateral pulmonary embolism and the surgery on my left lung to repair the damaged lung greatly spend up my deterioration. The result was I sped thru the Moderate and Severe stages of COPD right to “End Stage.” I truly believe that had I not suffered from the Pulmonary Embolism and the damage to my left lung that I would still be in, the (at worse) Severe stage of COPD. It is my opinion that these 2 incidents move me closer by (at least) 10 or so years closer to the end of retirement.
Another factor which played heavily in the deterioration of my lungs is an immune system deficiency. My immune system was in such a state that the system’s ability to fight infectious diseases such as Pneumonia, MRSA and Pneumonitis, (treated with Zyvox, Colistimethate, Doxycycline, Cefepime, Meropenem, TOBI and Cipro, to name a few, those drugs with lines drawn thru them no longer have an impact on the Pneumonitis or MRSA which has colonized in my left lung) was compromised or entirely absent when discovered just 2 years ago. Doc Infectious (who was called in by Doc Lungs), ran a series of blood tests that shows my immune system barely functioned. When discovered it was determined that my system not been running at any level of efficiency for years. Allowing the COPD diseases to have a far greater impact on my lungs than someone whose immune system wasn’t compromised. Doc Infectious began treating this with a monthly (for the last 20 months) 5 hour IV treatment of Privigen. My immune system now performs at the lowest level of normal, which I truly believe has played a significant role in my only having 2 hospital stays in the last 19 months.
All of this sounds very grim and to some it may sound crushing. But I have lived with COPD for over 30 years, and I am not done yet. Without complications such as; heart disease, the bi-lateral pulmonary embolism or the hole in my lung, I might not even be in the “End Stage” of COPD. During my progression thru my disease I have learned that exercise is a tremendous help, eating correctly, managing your weight, communications, stopping smoking, doing your best to remove irritants from your environment, gathering support when and where you can, and most importantly maintaining a great attitude all will play a momentous part in your longevity. Even if it doesn’t lengthen your stay, it will make your stay that much more pleasant for you and those you care for.
Folks this is my story, your story will be about you. This post talks about me, and it is but a snapshot, I realize I probably haven’t covered all I said I would, but like I said, it’s a snapshot. How you deal with the disease is your business. My blog shares how I have dealt with my COPD. Hopefully you don’t run into complications, maybe your COPD was caught at such a time and place where if you change some basic habits now, you will not only increase your stay, but your quality of life at the same time. Right now there is no cure for COPD, but that would have been said for a lot of diseases over the years. If you’re in the earliest stages, you have to imagine that the cure will be discovered during your life time. Smiling I have had COPD for over 30 years; I got COPD before it even had a name. And even though I am in “End Stage” I haven’t given up, all I would ask is that you don’t give up either.
Folks as always if you have any specific questions you want to ask or if you have comments or concerns you want to share, please feel free. Take care, Bill