Fast onset of COPD about a year ago

By Bert L

2 min read

May 2021 I woke up and couldn't breathe, just like most here it seems.

My story

I did have an emergency inhaler, so I hit it like mad and finally was able to breathe. Scared me to death, so much so that was the last of the cigarettes (41 years as a moderate smoker and was cutting back). Just quit cold turkey, it was hard but after 3 weeks got easier and now over a year I cant stand the smell of it. Amazing how fast it hit and continued to hit, 2 overnights in the ER in 2021, so many tests and found stage 3 COPD, moderate to severe emphysema, and Very severe sleep apnea (could have had that for several years) stopped breathing at night 135 times in an hour sometimes for 2 mins at a time. This I found was killing my ability to think, or basically giving me brain damage.

My treatments

I am now on Wixela, supposed to be using Spiriva (can't afford $500 a month), use a dual nebulizer 4x a day if I can, on supplemental oxygen during the day and on a BiPAP with oxygen at 2L all night. The BiPap has helped but not even close after 6 months of use to gaining back my mind. The fear of an attack is almost 24/7 and I check my o2 several times a day and won't go anywhere without o2 and my albuterol inhaler.

It's been tough

I own a landscaping business and I am failing hard to keep that going as I can't focus or do even the simplest physical thing, can in person get the crews going in the morning as I have to wait for all the meds to work. This has been tough, and tired of the people around me not understanding and thinking it is just a way to be lazy (including family, not all but..). Applied today for disability, but do they really think you can live on $1800 a month? I don't think I can find any job that can afford me to keep my house, and lifestyle. I'm scared.

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Jill.Brodie Community Admin
Hi <inline-mention username="Bert L" user-id="4750280"/> thank you for sharing your story with us. This must have been an extremely scary experience for you. I can't even imagine how awful and frightening this must have been. I am glad you have treatments that are helping you, but I can understand why you are still fearful. I can also hear how difficult it has been to keep up with work. I really wish you were getting more support. How did the disability process go? My heart goes out to you. I really hope you can get more financial and emotional support. Wishing you all the best. Jill, <a href='http://COPD.net' target='_blank'>COPD.net</a>, team member
white4938 Member
Bert L, thank you for sharing your story. I don't know if you are familiar with Canadian pharmacies but you may mail order branded and generic medicines for substantially less. I was on Spiriva at one point and used Northwest Pharmacy. Currently, their price for Spiriva <a href='http://2.5mcg' target='_blank' rel='noopener noreferrer ugc'>2.5mcg</a> (60 metered actuations) is 1 inhaler for $131.49 or 2 for $238.39. There are other Canadian pharmacies as well that you could research for the best prices for your prescriptions. I listed Northwest Pharmacy, as, and others I reccommeded them to have purchased from them with no issues. This might help breach the gap until you receive Medicare.
yorkie-al Member
Hi Bert L. Your diagnosis in COPD terms was fairly recent so I totally understand you being scared 24/7.... it is normal. I am in final stage and was originally diagnosed with sudden onset of severe emphysema and COPD back in 2017. I am 68 and smoked moderately most of my life. I had never heard of COPD and found this site to be an immense help. Here in Britain we do not have anything like it so to hear from other sufferers is the best support we can have. I am sad to hear your difficulty funding appropriate meds. You need to fight to ensure you have what you need. I am afraid people's understanding generally is limited. I was forced to stop working but here all my meds are free and thankfully I had a reasonable pension to live on. For you having to try to maintain your business must make it doubly difficult. I found at the beginning of my journey I was terrified every time I became short of breath. I thought I couldn't get enough oxygen. I would become increasingly anxious and agitated. My heart rate would race and on two occasions I finished up in hospital and my consultant told me I was very close to death. I was also suffering from increasing depression because I couldn't do the things I used to. My wife and family did not understand any of it and still arguably do not even now. I tell you all this in the hope you will glean what I am getting at. I was in an increasing spiral of despair. I had to help myself if nobody else could. So what did I do? 1/ I told myself I was not going to die for at least a few more years; 2/ I began to accept all the things I could not manage to do and learned to walk slow an d deliberate; 3/ I tried a short walk every day and attend a COPD gym circuit once weekly (exercise is important if we are to keep going no matter how limited. If i can't manage I sit and watch everybody else. I get the interaction and tell myself I will be ok next week!) 4/ If I begin to have more difficulty breathing I make a mental note. I accept the process rather than fight it. I sit down and begin my breathing exercises. I tell myself I will be fine and just need to stay calm. I only wear loose clothing and try to keep my environment cool which seems to help. The only other tips I can give is drink plenty of water and eat little and often. Bert it takes practice and time but it will help you and should help with your positivity. Best regards, Allan
Mac3rd Member
Bert, I too was a contractor, loosing manual abilities, exhausted. Knowing there is no cure, you should consider selling your successful business, while still successful, with possibilities of owner financing, to aid you disability income. Before that, consider a reverse mortgage, if over 62. I actually inherited enough to survive with my loss of income, otherwise I'd be in your same situation. Good luck

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