Reflections on a Year with COPD

[rduffy]

Hi All,

As the year 2016 draws to a close (and many of us in the States say good riddance to it!) I've been thinking a lot about my own personal experience with COPD this year. This past trip around the sun has been an eventful roller coaster for me, both physically and emotionally, but as I look back on it I realize I've learned some very important things about myself, and I'd like to share those in case others might find them helpful. Not that I'm all that interesting--that's not what I'm trying to say. What might be of interest to others is what I learned along the way as I became a full-fledged COPD patient this year. (Note I didn't use the word "sufferer." Don't like that word at all. That's part of what I've learned.)

In one sense it's funny to consider myself as having just acquired COPD this year, since I'm 61 and was diagnosed with bronchiectasis when I was 17. But that's really how it's been for me. I guess I've been fortunate in that my bronchiectasis has been little more than a nuisance most of my life. I don't know why, but I wasn't one of those folks who got sick all the time, in and out of hospitals, multiple pneumonias, etc. Maybe it was all that clean living all those years. (My friends and family know what a joke that is!) But whatever the reason, bronchiectasis just meant I had a lot of phlegm to cough up every day, so I did, and I got on with my life.

But over the last ten years I suppose the chronic infection finally started to take its toll, and my lung function slowly decreased until it really became an issue this year. Since June I've been on supplemental oxygen, I'm down to 25% lung capacity, and I'm currently on the slow track to get on the transplant list some day. Quite a change! And that change really threw me for a loop. So much so that I was having some real difficulty earlier this year dealing with it all. Anxiety and panic attacks, awful dark thoughts about what was going to happen to me as I aged--really ugly stuff. I was not a happy camper.

Fortunately I got some help. Started reading everything I could on anxiety and depression, and I started seeing a therapist. In my very first session she told me to listen to my body, and I thought, what, this ache in my back is supposed to be telling me something? Made no sense to me. But I understand now what she meant. I know now I was in complete denial about my condition. From all my years of not having to deal seriously with my bronchiectasis I had trained myself to think I didn't have any issues with my lungs. I remember I used to look at the other patients in the pulmonary clinic waiting room with their oxygen cannulas and I would recoil from them like they were lepers. Those people were sick; not me. I didn't belong in the same room with them. Classic hubris, as the Greeks liked to say. Sin of pride, as Christians would put it. Resistance to seeing what is, as Buddhists might describe it. (I'm sure Jews and Muslims have similar concepts in their traditions. I'd love to hear from folks who could describe those for me.) But whatever you call it, boy did life give me a smackdown for that!

I realize now that my inability to recognize and accept my COPD was making me way more miserable than the COPD itself. Sure, it's a pain in the ass to be tethered to this oxygen all the time, and it's no fun not being able to do things I like I used to, and it's really disconcerting to think I'm going to have to get a lot worse than I am now before I'll qualify to get on the transplant list, but I realize now I don't have any control over any of those things. Nothing I can do about those realities, so why make myself sick with worry about them? The one thing I can control is my reaction to them, and that reaction can actually cause more pain and misery than my physical condition. That's what was happening to me earlier this year, and that really sucked.

So that's the big lesson I learned. I'm slowly learning to love my cannula. (Well, maybe "love' might be too strong a word.) But I'm getting used to the SOB. And I'm learning to enjoy the perks that come with it. I can park pretty much anywhere I damn well please these days. (Unless other disabled folks get there first and grab all the spaces!) People get out of my way when they see me walking down the hall dragging my oxygen behind me. Dogs don't know what to make of the sound of my oxygen concentrator. People give me their seats on the bus. I didn't have to hang the Christmas lights on the house this year. What the hell, might as well enjoy it all while I can.

Sorry for the lengthy post but it's not required reading! Just some random thoughts I've been having. Hope everyone who takes the time to read this doing well!

[BgertieH]

Good for you! I'm 74, smoked for 43 years, quit 13 years ago. So, I have COPD. Also have methotrexate lung damage, 2 hip and 1 knee replacement, plus a couple of other surgeries. I volunteer 3 days a week, clean my own house, all the cooking, love my hubby, and believe that if I do it today, I can do it tomorrow, albeit somewhat slower as the years go by. I keep my sense of humor and do my best to manage my life. Balance is for tightrope walkers! I was impressed that you have learned how to manage you! Every day is a gift of sorts! Every day you will find that reserve of strength and that will prepare you for the many steps toward the new lung(s)! God bless and keep us posted! Thank you for sharing! You and I and am sure many others see a cloud and immediately seek the silver lining!

[LORBIC]

Rduffy, thank you for sharing your story. i can relate to some of what you are saying, I learned many years ago to listen to my body and from time to time I have used that to make doctor's listen to me. There is something about telling a doctor you know your body makes them pay attention. As for the cannula don't know that I will ever get used to it but at least I can now go out in public with it and not feel ashamed. If people want to look then that's okay, just don't give me that petty look. It's life.

For the panic attacks I do deep breathing and it's helping, I also have a therapist I see every week just to talk things through, for me this better then being on another drug.

Stay as well as you can

[rduffy in reply to LORBIC]

I completely agree about talk therapy being better than drugs. Lord knows we take enough of those already. (And if I get that transplant I'll be doing more drugs than a Grateful Dead concert audience in 1972! They won't be as much fun, however...)

I work in an office with about 200 people, so when I got my cannula I sat down and wrote an e-mail to the entire organization explaining that people were going to start seeing me with this disturbing-looking tubing on my face and explaining why I needed it now and all that. Writing that e-mail and sending it out was one of the hardest things I've ever done, I've always been very private about my health. But it turned out to be the most wonderful, liberating experience. Literally overnight I no longer cared who saw me with the cannula (even people outside the office). And I was overwhelmed by all the expressions of concern and support I got from my co-workers. One woman even stopped by my office to offer to donate blood for me. That's something you don't hear every day. You're right--it's part of my life now. At least it's not an ugly tattoo that'll never come off!

[Bugabuga]

Wow u really touched me. I am so depressed all the time. Bad thoughts of knot seeing my grandchildren and great grandchildren grow up or even play with them. Always in pain from other medical problems. Just tired of dealing with this

[rduffy in reply to Bugabuga]

I sympathize with what you're feeling. Sounds like me several months ago. It's hard to deal with pain and with bad thoughts like you've been having. As a suggestion, try to remember you might not be able to do anything about the pain but the thoughts are entirely under your control. It took me a while to realize that. It doesn't happen overnight. I had to work at it. I was agonizing over wondering what I was going to be like 20 years from now. Would I be dying some ugly, horrible death, drowning in my own phlegm, gasping to breathe? (Gee, wonder why thoughts like that made me feel bad?) I finally realized I have no idea what I'm going to be like in 20 years. I could die tomorrow in a car crash. (There's a cheery thought for you--but still.) The point is I realized that every time in my life I visualized what the future was going to hold for me it turned out to be wrong. Every time. (Especially last Nov 7!) Think about that. Sometimes things turned out worse (like last Nov 7) but sometimes they turned out better. The bottom line is, I had no idea. I'm a lousy clairvoyant. We all are. Save your money at the fortune-teller's booth. The only thing I do know is what's happening to me today, so that's where I keep my focus now. Good luck to you. If you're lucky enough to have grandkids now, enjoy playing with them today instead of worrying about not playing with them tomorrow. And if you have great-grandchildren, wow, my hat's off to you!

[rubyred777]

Hi rduffy , I was surprised to hear of you speak of a lung transplant. Thought they didn't do over 60yrs. old. Good news if they do😁😁 Ruby🌹.

[rduffy in reply to rubyred777]

Hi Ruby,

My doctors told me that your 60's are actually optimal years for having a transplant. If you figure the best case scenario is you live another 20 years before chronic rejection gets you (and I guess apparently it eventually does) then that gets you into your 80's and I suppose we can't complain about that! Of course not everybody makes it 20 years post transplant and I know the overall numbers aren't as good as other organ transplants, but what the hell, we all gotta die of something anyway so I figure it's still worth a shot. And who knows what medical research might come up with in the next decades? That's even more worth the risk. But one step at a time. I'm still not even on the transplant list yet. The doctors are pretty confident I'll get to that point before I "age out" of the optimal age window. And when and if it happens I'll settle for any time I can get without these phlegm-soaked pus bags that I currently call lungs. (I just wish I could get them stuffed and mounted as trophies afterwards but I doubt the doctors will let me do that. They tend to not appreciate dark humor as much as I do.)

[Mimibx3]

Bless you....continue with what your doing!! The joy is in the moment and that's all we ever have..it takes work but it works and it's a more peaceful way to live. 2016 started out not so good for me first shingles, then diagnosed with a menangioma brain tumor, then on a trip back east I'm not sure what happened to me but I ended up on a ventilator and was told in the ER I was overmedicated and stopped breathing. Since then my breathing got worse and finally saw Pulmonary doc I also have low OSL. I'm a former smoker I quit 14 years ago but I was told I have asthma too.

Through the year (2016) I asked for peace and acceptance for the most part I feel peaceful of course I lose it at times but it returns.

Love to all and blessings!

mimi

[rduffy in reply to Mimibx3]

Best of luck to you too! I've learned to look at this whole thing as one big adventure. No telling what's going to happen next. True, some things aren't so pleasant, but other things are. That's kinda life in general, isn't it? It's true for everybody. I've always liked the old Yiddish proverb: A man should stay alive, if only out of curiosity. I try to maintain that attitude as I navigate my own pulmonary adventure. I try to stay curious about what's going to happen next instead of fearing it. Whatever is going to happen is going to happen anyway, so I might as well try to be entertained by it. That might sound strange, but it's really worked for me. Once I embraced that attitude I find things are a lot less scary and I can even find occasional humor in my situation. There's a lot of absurdity to be found in losing lung function and wearing an oxygen cannula. You just got to be open to seeing it--and laughing at it!

[1john420]

Amen shalom my oh my testify