Introducing my COPD journey

By George B

1 min read

First time post. March 2023 I had picked up some kind of bug which led to a full blown exacerbation that landed me in the emergency room. Doctors wanted to admit me, but I refused because I knew I wouldn't be able to smoke for those days. I know...pretty stupid. I'll be turning 68 this year, and have been smoking for 55 years. Started as a punk kid of 13. Still smoking, and oddly enough still enjoy it.

Receiving a diagnosis

Primary care doctor referred me to have a Pulmonary Function Test and recommended a Pulmonologist. Stage 4 COPD diagnosis. On Trelegy, Albuteral Inhalers, and have a nebulizer. Both home oxygen concentrator and portable. Life changed quickly.

What led me to this website was one of those days where I was feeling down. COPD quickly reduces you to being totally useless. Even the simplest task becomes overwhelming. I've been avoiding showering for 3 days now, knowing how breathless I become, even while wearing my oxygen. I currently have a cold which makes things worse. Having to wear my oxygen fulltime. Does anyone else experience what I can best describe as mini-exacerbations? Admittedly, I get that panic feeling that the next breath won't come or I'll just drop to the floor dead.

Trouble is, I realize things will only get worse.

Apologize for such a pitiful introduction. It's just I've always been proud that I could accomplish anything I set my mind to. It's difficult adjusting to the fact that now I can't accomplish anything without assistance from my wife and kids. In future posts, I'll try to be more upbeat... I promise. :)

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Leon Lebowitz, RRT Member
Hi <inline-mention username="George B" user-id="8852735"/> and welcome! I am glad that you found our online community here at <a href='https://copd.net' target='_blank'>COPD.net</a>. We are pleased to have you as a new member. We hear you!! Living with COPD certainly has its challenges and you have clearly shared yours with the rest of us here! We value your candor. Please don't be overly concerned with the present 'mood' in your first post here in our 'stories' section. A large part of what our community is all about is listening, supporting, and sharing information. Please know you are always welcome here. I will look forward to continued conversations with you going forward. Wishing you the best, Leon L (author/moderator)
1. Craigar Member
 <inline-mention username="George B" user-id="8852735"/> I HAD the same problem until I started exhaling the symbicort inhaler's puff slowly through my nose! A few weeks ago I learned that they sell over the counter nasal sprays with many of the same exact glutocortioid/steriod that our inhalers have - before this when I exhaled a puff I let it out through my mouth as written in the instructions, so I started exhaling the symbicort inhaler's puff slowly through my nose and within a day or so my sinuses and my ears opened up ! If I ran out of air from holding the puff for 5 seconds I exhaled it into my nose than pinched my nose (to keep some in my nose) and breathe through my mouth. We should ask our doctors if this is OK, even though I haven't had any problems. 
2. Craigar Member
 <inline-mention username="Craigar" user-id="9887526"/> I only hold my nose pinched for about 5~10 seconds
Ian Wick Member
hello George B I too have stage 4 copd U. S rating here in Canada we have 3 stages mild moderate severe mine is severe [ 42 % lungs left ] not on oxygen yet did smoke 4, 50 yrs, but do not regret my past life. I too have trouble with bathing I can not shower all that water in my face [shudders] no thanks. and thanks to the folks here I have found ways to lessen the dread, tried a shower stool [ not for me as still the water issue in face with hand held shower] but I did learn to turn down the temperature of bath water, run a bit get in [ takes time as is hard to lower into tub] then fill tub with warm not hot water, use a long handle bath brush to reach, have a terry cloth full robe for drying when done, I just put on an sit on toilet seat while it absorbs the water, [works grt8] n I catch my breath while sitting. first of feb this yr I replaced the hot water tank old one died with a 50 gal one wow what a diff lots of hot n I mean real hot water, be4 I would get perhaps a 1/4 tub [soaker tub] of water now i get it full with lots to spare, I got too comfy and ran lots hot while in tub [ find I get cold easy in house] n felt wonderful till had major problems breathing, took forever to resume norm for me... now point is I used to dread the bath for same fears breathing panic etc , now I look 4ward to a 'warm full tub' nice n slow makes a world of difference and enjoy it once more, so lil details but dang what a diff it makes, I also wear hearing aides so when bathing the stay on counter so deaf in a tub an panic set to hit any time not grt8, silence gives the brain too much time to think.... with full tub warm water just lay back relax, get warm n clean n mind wanders on pleasant things,,, shower should work same if you set all your tools, brush robe chair etc up prior takes time but at our age we have lots time, Hope this helps you buddy just know you are not alone an always herd on here. regardless of tone or mood, 
1. George B Member
 <inline-mention username="Ian Wick" user-id="5492408"/> Hi Ian. Thank you for the input. Lots of good suggestions here that I'll try to adopt to make things easier when showering (never been much of a bath person). Gone are the days of 5-minute showers, and now plan on about 45-minutes to an hour for to get through the whole process. I break it down to small steps with lots of breaks in between to catch my breath again. Life's full of adjustments. Some better than others...
CommunityMember2441dc Member
I just got out of the hospital as well. I guess I'm lucky because I don't need to smoke. I like to smoke, but it's the hand movement that I miss. I've managed to cut down to 3 - 5 cigs a day, sometimes I don't even have one. It is a bugger of a disease. Chin up.
1. Lori.Foster Community Admin
 Hi <inline-mention username="CommunityMember2441dc" user-id="8860007"/>. I am glad you have improved and that you are out of the hospital. How are you feeling overall? For so many people, that hand motion is a habit that is hard to break. Have you tried replacing it with something else? Some people keep chew kits on hand, filled with things like toothpicks, sugar-free gum or altoids. Carrying and sipping from a water bottle is another good alternative, provided you have a strong bladder. Wishing you the best. - Lori (Team Member)
George B Member
 Thought maybe I should post an update here. Over the cold and doing so much better. These last few days have been a fantastic relief! O2 levels consistently in the 96% to 98% range. Normally the best I would get to is 94%. Still have some brief bouts with shortness of breath, but hoping for the best that this continues. I joke with my wife that maybe I've been cured. Don't worry...I'm not delusional. Had an appointment with my wonderful Pulmonologist recently. Had a serious conversation with her of the benefits if I were to attempt to stop smoking. I prefaced the conversation by pointing out how I trusted that she is very straight forward and knew she wouldn't give the canned medical response that "Smoking is BAD". She cautiously offered that I could possibly see a 10% improvement in my condition, but there was no guarantee. She actually advised that knowing how hard it is, she doesn't recommend to her patients to attempt the cold turkey approach. She suggested it would be better if I could slowly attempt to cut back a little. Cut out one to three cigarettes at a time. I'm currently still smoking between a pack and a half to two packs per day. I did request to start pulmonary therapy of which she gladly concurred, and felt there would be some benefit. Hopefully, this post was a little more upbeat. I did want to point out I do appreciate the supportive comments here. It does make a difference knowing you're not on this journey alone. 
1. Melissa.Arnold Community Admin
 <inline-mention username="CommunityMember7d3f64" user-id="8665284"/> This makes perfect sense to me! Smoking becomes such a big part of the daily routine, and a lot of people smoke as they transition from one activity to another. Finding those big "transition times" for you and trying not to smoke then disrupts the schedule in a positive way. And here you are, after 60 years of smoking, now living a healthier life! I'm proud of you. Your story shows all of us that it is never too late to quit. Wishing you continued success! Thanks for sharing. -Melissa, copd team
2. CommunityMember7d3f64 Member
 <inline-mention username="Melissa.Arnold" user-id="4698523"/> Thanky! Adios THOMAS
CommunityMember5e11d1 Member
Hello e eryone!I am Pam from Michigan. I was just diagnosed in October so this is all new to me. 
1. SamanthaSarube Community Admin
 <inline-mention username="CommunityMember5e11d1" user-id="8871649"/>, Hi Pam, thanks so much for joining our community! We know being newly diagnosed with COPD can be really overwhelming and we are here to offer you any support we can! Here is an article you might find helpful: <a href='https://copd.net/living/just-diagnosed-tips' target='_blank'>https://copd.net/living/just-diagnosed-tips</a> All the best, Sam S. (COPD team).
2. John Bottrell, RRT Moderator & Contributor
 <inline-mention username="CommunityMember5e11d1" user-id="8871649"/> Hi. Pam. I am also from Michigan -- enjoying the early spring weather how about you? If there is anything specific you need to know about COPD -- or even if you just need support -- please do let us know anytime. Wishing you all the best. John .community moderator.
CommunityMemberfd59cf Member
Hi this is the second time I'm leaving the hospital I'm gone four times these last three times I've hurt myself pretty bad I have hypoxia on top of it broke my nose just happens is I walk or I use my Walker I'll walk over to my kitchen cabinet and I just dropped I you know I drop and I hit my face and I've been in the hospital now I'm on hospice can't be alone I'm going to try a new kind of medicine that other sending me it starts with an o I think it's spelled o p t i n c e t I'm not sure but it's coming in the mail and we're hoping that that will open up the blood vessels in my lungs were I'll be able to breathe a little bit deeper thank you for listening I really really appreciate it cuz I need someone that knows what it's like to have a bad flare up up it's really bad ones and I'm telling you thank you
1. Melissa.Arnold Community Admin
 <inline-mention username="CommunityMemberfd59cf" user-id="8874441"/> Hey there. I'm sorry to hear you've gone through so much. It's not easy to walk when you feel unsafe and have trouble breathing. Do you think using a different mobility aid, like a scooter or a wheelchair, could help prevent these falls and injuries? It's important to take good care of yourself, especially if you need a lot of physical support. You might want to talk to your hospice nurses about how to prevent falling, or any other issues you're struggling with. We want the best for you. Please keep us posted, we will always be here to listen and support you. Take care! -Melissa, copd team
2. CommunityMember7d3f64 Member
 <inline-mention username="CommunityMemberfd59cf" user-id="8874441"/> Are you using the two wheeled walker? A four wheeled walker will be much safer. Adios, THOMAS