Help me understand COPD stages
Desperate here for some help understanding.
My mom has COPD for last 5 years, end stage. (27 percent lung capacity and when diagnosed and it’s basically stayed the same since then until now)
She has managed fine, just doesn’t walk far. Started wearing oxegyn at night just this spring (should’ve been sooner though) and got a portable oxegyn machine as well. I could hear her getting more out of breath from smaller tasks like walking around the store or a short walk, etc.
she got covid in the fall and although her first day required her wearing her portable all day, she actually got better after that she was back to “normal”, which her normal is not wearing oxygen except for at night and getting easily winded.
Well, a few weeks after covid, she started having a lot of trouble. She said she gets winded from getting dressed, walking to the bathroom, basic task. She got on a steroid and it helped A LOT. When the steroid was finished, her breathing went right back to the bad state. She got on a different steroid and it didn’t help at all. She started to wonder if she had an infection.
She went to urgent care and they said she has strep. She’s been on an antibiotic for strep now for 4 days and zero improvement in her breathing.
She is now wearing her portable oxegyn all day, even while sitting. It doesn’t seem to help her much, she’s still insanely out of breath from walking to one room to another. I guess I don’t know if the oxegyn is even working if it doesn’t help her walk any further than she can without it?
My questions are this…
is this just her new normal? Is she now basically stuck at home even though a few weeks ago she was out and about everywhere? Will this flare up go away eventually and she will be able to at least walk with oxegyn and
Not feel like she can’t breathe!? How come a few weeks ago she only wore it at night and now she can’t function without it!? I feel like it professed so quickly. I’m really anxious about it and sad. Will she learn to get around more again or will can this disease progress insanely quickly like that? Does this mean the end is near?
Sorry I didn’t give many specifics about her levels or anything, all that stuff confuses me. She is in 60s. I’m terrified for her. I want her to at least get back to her baseline but maybe this is her new baseline. She does meet with her pulmonologist tomorrow. Hoping he can help.
Also sorry for all the typos. It’s late and I wrote this quickly!
Hi. <3 Welcome to the community. Your mom is the same age as mine -- I hope you know that being here with us shows what a caring and concerned child you are! So, first, we can't provide medical diagnosis or advice here for your mom's safety. To get the clearest picture of her individual situation, you'll have to talk with her care team. That said, I can help address some general things!
Staging is based on the percentage of lung function she has compared to an average person. It's important to know that while COPD progresses for everyone, you can remain in any stage -- even end stage -- for many years in some cases.
https://copd.net/basics/copd-stages/stages-explained
Flares can take a big toll on stamina and function, and it can take an extended period of time to recover. This is especially true when it's been difficult to find the right treatment.
I am curious to know what the pulmonologist says. Has she ever been to pulmonary rehab? It's specially designed to help preserve and increase functioning, especially after a flare. End-stage people can benefit, too -- it's about working with what she has and trying to build on it for greater quality of life.
For now, trust the doctor to tell you when it's time to think about end of life. You can also feel free to ask directly -- it's a normal question and nothing to be ashamed of. If you think Mom will have a hard time with that conversation, you can always contact the doctor privately if your mom has given consent (and if she hasn't, it's a good idea to talk with her about selecting people that can come to appointments and help her make health-related decisions.)
I hear how much you are going through! Try to take things one day at a time and do your best to care for yourself as well! Keep eating and sleeping well and don't be afraid to take time for you. That's so important for every caregiver, no matter what their loved one's situation is.
We are here for you every step of the way. Stop by whenever you want! Wishing you both well. -Melissa, copd.net team
Thank you for reaching out! I really appreciate it! 😀
She has been to some rehab I believe. I remember her talking about going and wearing oxegyn while walking on the treadmill there.
So I was only texting with her about her pulmonologist apt so I don’t have the full picture, but he didn’t give her a steroid because he said it’s just a result of covid. He does want her to get labs done and if “some levels” (her words) are high he wants to do a CT scan to check for a blood clot.
She also told me she had some SLIGHT improvements today, she made eggs at the stove (without oxegyn of course) and her oxegyn held she said (89-92).thanks for the reply! I have 2 little boys I homeschool so it’s not ideal for me to go with her to apts but I would like for her to be more detailed with me when she gets information! The doctor said it’s from covid and it can take awhile to get better, unless she has long covid. Hopefully she clears this infection and can at least get Higher o2 when resting! She just walked up the stairs from the car to the house with oxegyn on and it was 76-78! She turned up the oxegyn all the way up and got it to 99 so then she turned it back down a bit. Jeez. This disease is a whirlwind. 
Hi again, Lostcause, and thank you for this further explanation. Taking care of 2 little boys at home (and homeschooling, too!), puts a whole different spin on this, I understand.
A possible alternative (to take some of the pressure off Mom), might be to have Mom call you while she is with the doctor. That way, you could listen in (and even engage), with the doctor during the appointment as necessary. I find this is very helpful (for me), when I go to my various doctor appointments and my wife is on the phone. The doctors are all very comfortable with it as well.
Do you think this might be of benefit for you and Mom?
Leon (site moderator COPD.net)
I don’t want to speak too soon, but my mom had a good evening. Her portable oxygen battery’s was dying so she moved to plug it in. I went over there a few mins later and told her her oxegyn wasn’t on. (It turns off when you plug it in I guess) so then she took her oxegyn and it was 92. She sat a while and it stayed up. She then walked to the bathroom and came back without it and it had dropped to 86 but went back up to 92. (Slowly but it did it). This is the first time in days she’s been able to not wear it (besides yesterday making eggs). A small win, but a win nonetheless
