My Journey so far with COPD

By JennieS

2 min read

My name is Jennie, I am 62 yrs old but was 61 when diagnosed. I have smoked since I was 14 and quit for the first time in my life on 1/17/2024. I went to the doctor for the first time on 1/16/2024 because my breathing was out of control and I was avoiding going anywhere. I told her when I got there that I refused to go to the hospital. First thing, she checked my pulse ox and basically had her nurse RUN to get an oxygen canister. To make a long story short, she prescribed me 4 liters of oxygen, but the place we went to get the oxygen set up told us it needed to be 6 liters and set it up. Needless to say, I went to the hospital the next day and didn't even know it because I basically had overdosed on oxygen. I ended up being in intensive care for about 4 days and then was moved to a regular room for 2. My body wasn't expelling the carbon dioxide. My husband said I was acting drunk for 3 days!

Multiple diagnoses

Since my stint in the hospital, I have had two CTs with contrast and one that was done a little differently so they can get a picture of my heart. I have, of course, been diagnosed with COPD, I also found during one of the CTs that I have a compression fracture of one of my vertebrae as well as an aneurysm of an artery or vein going to my spine. I also had a scan for osteoporosis, and I have that. My Thyroid is going crazy, and I also have 2 bulging discs in my lower back.

The emotional toll

My mental health sucks right now. I'm having panic attacks because I cannot breathe, and after reading some of the articles here, I'm so thankful that I'm not alone in some of the things happening.

Trying to figure everything out

Now, my big issue is, I am trying to get a handle on my mental health as well as my physical health. I work from home for a big-name company and have so many issues that I'm taking a leave of absence. My GP (who has been dealing with most of my COPD) thinks that I don't need any time off to absorb exactly what's going on in my life and the fact that I need to relearn everything I know in life in order to function. I'm starting Pulmunonary Rehab next week and I'm looking forward to it but having major anxiety because it's a big walk to the door. As for work, customers cuss us out (if they don't get their way) and it's never bothered me before but for some reason now, I have panic attacks and cry at the drop of a hat. I struggle and have panic attacks before work as well. I am starting to see a therapist on Tuesday so hopefully that will help.

Does anyone have any advice or on how to copy with the work situation?

Thank you all for listening and so sorry for the length.

Jen

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chipper42 Member
I could have written that post - just about exactly where you are. COPD for a few years - now with congestive heart failure - on oxygen 24/7 - unable to walk across the room without stopping to breath. A condition I would pray nobody has to experience. Definitely a life-changing journey. One day at a time, my friend. Bless You !!
Dupey00 Member
Hi Jen. Thank you for sharing your experience. My sis has Copd stage 4, smoked since was 14/15ish and has had breathing issues for years without a diagnosis. After 4 hospitalizations since Jan 24, she was diagnosed. Omg! Life changed in an instant. A 180 degree shift in everything that was to how it is now and going forward. She went, is going through denial, loss… all the stages of grief as she tries to wrap her head around this. We, her family, too. I pushed her into therapy. I immediately started to learn and shared this site and others to help her learn. I started group therapy, too as it impacts love ones deeply. I am so grateful to find this site and all your beautiful people. We are not alone. We can find our way through. 🥰
Dupey00 Member
Hi Jen! We, my sis and I, are going through a similar situation right now. My sister is stage 4, walking from bed to bath is such hard work with a recovery period built in. Her PCP thinks she should be working, especially since she works from home. But we all know, work requires specific things of us. My sis leads a financial department and team of many individuals in a highly corporate environment (although online.). She can’t speak for too long to lead the multiple daily meetings, and what if she needs the WC which takes it out of her, and takes at least 15-20 minutes to recover from the journey. Being responsible for financials and others work is a huge responsibility, and although her work ethic remains as steadfast as it always was, breathlessness leads to anxiety, anxiety leads to breathlessness and of course the brain fog, inability to focus and concentrate, limited sleep, bouts of incontinence, inability to care for basic personal needs, plus the emotional blues as she processes her condition…working a hard 40+hour week for others success has become less important to her regarding quality of life. In my opinion, the hardest part of COPD is every persons progression is individual. There is no one way this unfolds. When PCPs respond to us as if this is not a life altering diagnosis infuriates me. I expect empathy and sensitivity to be part of their skill set, but I guess not. In such, I guide my sister and we ignore the PCP most of the time. lol. 🫶🏼
Melissa.Arnold Community Admin
<inline-mention username="JennieS" user-id="9753722"/> Hi, Jen. My heart goes out to you for all you are trying to wrap your head around. It's not easy to manage even one health condition, let alone multiple conditions, along with the stressors that accompany everyday life. I hope you know that you are not alone in feeling this way, and that it doesn't mean you're weak or incapable. You're just human. It sounds like you are doing the best things possible to prioritize your wellbeing right now -- taking some leave time and finding a therapist would have been my suggestions if you hadn't mentioned them. By now, I imagine you'll have started therapy. How's it going? Feel free to share as much or as little as you want, I'm just checking in. And remember that if that person isn't a good match for whatever reason, it's okay to ask for a referral to someone else. That's normal for therapy; each person is different and you do best with someone that's a good fit. I would encourage you to consider this same concept with your GP. It concerns me that he doesn't feel like your leave of absence is necessary. He has a right to his own opinion, but ultimately, your doctor works for you. He should be on board with your goals and willing to support whatever decisions you make. If this isn't the case, it may be worth seeing if another doctor is better suited for you. You don't need unwelcome criticism from someone who is supposed to advocate for your health. As for the job, you may find the coping skills you learn in therapy help to lessen your anxiety. But you can also decide it's not right for you anymore. There are a variety of other remote work opportunities nowadays, maybe something else will strike your interest. Or maybe you'll want to consider disability benefits or retirement. It's totally up to you. Please know that we are all here to listen as you work this out. Be gentle with yourself and try to take things one day at a time, okay? Hugs and best wishes to you! -Melissa, team member