My Emphysema Journey

By viveggen

2 min read

I began this journey nine years ago at 72 when I was in the hospital for a compression fracture of T12. Obviously, I had emphysema long before then without knowing.

The start of my journey

The doctor set me on my journey with oxygen at night, a daily inhaler, and a stint at pulmonary rehab. I worked hard to eat healthy, exercise, and learn all I could about living with emphysema.

With my Inogen G4, I managed to live a relatively normal, active life up until a year ago. I started needing more oxygen when walking or exercising, so I graduated to the heavier G5. But shortness of breath became a familiar symptom unless I was at rest. In addition, I couldn't maintain my O2 saturation in the 90’s without connection to a concentrator. This was a definite change that caused me some concern.

Exacerbation or decline?

I wondered if this was the beginning of an exacerbation or just the natural progression of my disease. I worried and I waited. The next available appointment with my doctor was months away, so I sent him a message to give my data. His said I should go to the ER or an urgent care if I was concerned. Well, that didn’t answer my question.

Instead, I caught a mild case of CORONAVIRUS 19 after four years of successfully avoiding it. It was just a bad cold, but ever since then my emphysema symptoms have gotten worse.

Last year the test showed I needed 4 liters when walking and 2-3 when at rest. Now I get short of breath walking with 5 liters and my saturation drops into the low 80’s and sometimes into the 70’s.

Life changes

I started sending out my laundry a couple of weeks ago, and my cleaning lady now changes the sheets on my bed. And I have become a total couch potato. Even taking my daily shower is a long process as I must stop and catch my breath. Next I will have to wear my oxygen as I shower less often.

I’m still plagued by the question: is this the natural progression or am I working toward an exacerbation? It probably doesn't matter other than is this the new normal? Will I ever be able to go for my walks without SOB?

I wonder, should I go back to continuous flow tanks rather than the pulse feed G5? Should I just ride my mobility scooter more often? Should I just stay connected even through a dinner out with friends?

I have been so fortunate these past nine years, so perhaps I just need to adapt to this new progression.

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Dupey00 Member
Your post really hit home. You have a similar story to my sister. Thank you for sharing. 🙏
1. Melissa.Arnold Community Admin
 <inline-mention username="viveggen" user-id="4167049"/> Hi! Thanks a lot for sharing your story here. I wanted to reach out in response to some of those rhetorical questions you asked at the end -- what should you do now? Honestly, it's about what makes you feel the most comfortable and gives you the best quality of life. It's not as though you are giving in or failing by using oxygen ... you're just doing what you need to do to take good care of your body. To put it another way, if someone is having trouble seeing, walking around without glasses isn't going to make them see better or struggle less. Our patient leader Jackie wrote a great article about embracing life with oxygen: https://copd.net/living/oxygen-dependence So, maybe you can experiment and see what you like. If you feel depleted but want to get out, try the scooter. See how different tanks make you feel. There is no right/wrong answer here, and ultimately we support you in whatever you choose to do. Also, I'm frustrated at the doctor's lack of response to your concerns. It's worth talking this over at your next appointment, if not sooner -- you deserve to have a provider who is willing to listen and give you time, whether you're on the schedule or not. Don't be afraid to seek out someone else if you're not on the same page. I'll be thinking of you. Keep us posted if you can! -Melissa, team member
Dupey00 Member
My sister is dealing with the same kinds of struggles with daily functioning. Showers are a huge ordeal. With her o2 on at 5, she is still struggling. So showers are infrequent. Just getting from bed to bathroom can drop o2 to 70s. We laugh (cause we have to) that she needs a catheter! She drinks water to keep hydrated, but then must pee a lot! But bathroom trips are big ordeal… it’s a frustrating cycle. Keep your chin up. Thinking of you… ☺️
John Bottrell, RRT Moderator & Contributor
Hi. Again. <inline-mention username="Dupey00" user-id="9763499"/> Your sister is very fortunate to have you as her caregiver, and as her friend. It's good that you can laugh about such things, as this can make it less stressful. We've had many discussions over the years on the topic of showering with COPD, such as you can see here (<a href='https://copd.net/forums/do-you-have-advice-for-bathing-or-showering' target='_blank'>https://copd.net/forums/do-you-have-advice-for-bathing-or-showering</a>). Likewise, contributors living with COPD have written about their experience/ tips with showering, such as this one (<a href='https://copd.net/living/showering-tips' target='_blank'>https://copd.net/living/showering-tips</a>). I hope you find these links helpful. Wishing you all the best. John. community moderator.