Newbie Here with Severe Emphysema and on Oxygen for the First Time
Hi,
Please excuse me if this is too long and if in the future I ask too many questions!
Four years ago I ended up in the hospital and never really understood why I was there for 5 days. I know that sounds ridiculous. I was on oxygen the entire time I was there and was given breathing treatments. I met with my GP after my hospital stay and all he could tell me was that I had COPD. I didn't know what kind. I have researched COPD to the enth degree except for emphysema. My grandfather had it and I was nothing like him. I totally disregarded it. I bought a pulse oximeter after getting out of the hospital and watched it go down over the 4 years. My GP never suggested that I see a pulmonologist. On my last visit with him I asked for a referral. I got it and it took 2 months to see him. I saw the pulmonologist last Monday and I he told me I have severe emphysema and he made all of the arrangements for 24 hr oxgen and mobile oxygen. I was dumbfounded. He wants me to be evaluated for a lung transplant. I was absolutely shocked and I still am. I've been on 24 oxgen since last Wednesday afternoon (29 Oct),
I have 2 questions:
1) Because my blood oxygen level was low before my diagnosis and now after having been on the 24 hour oxygen, can I run to the grocery store for just a few items without using my mobile oxygen? It seems like such a pain in the ass! The portable unit was explained to me but I'm not sure I retained it all.
2) Are there any tips anyone has for a newbie
Thank you very much,
Debbie in San Antonio, TX
Hi Debbie (
), Welcome to the community! I'm glad you found us. You can never ask too many questions and don't worry about longer posts. Some things take more words to explain. We're here for you even if you post 20 times a day. 😀
I am so glad you advocated for yourself and insisted on seeing a pulmonologist. That might have saved your life. Shame on your general practitioner for not referring you sooner.
As scary as a lung transplant sounds, it can be absolutely lifechanging. The son of a family friend has cystic fibrosis. He is in his late 40s and recently had his third double lung transplant. He ran a marathon after his second one. He would not have lived past his early 20s without them. He is married with kids and lives a full and active life. I hope you qualify and that you are able to find a match.
Can you message your doctor about the oxygen issue? It probably isn't safe for anyone here to give you advice on that, but maybe they will share their own experiences. Here is an article about portable oxygen that might help you get started with one: https://copd.net/living/portable-oxygen-concentrator. Did your doctor also recommend exercise? Any kind of exercise can help your lungs become more effecient and bring you some relief.
I hope this helps and that others chime in here. Keep us posted.
Warmly, Lori (Team Member)Thank you very much for your feedback! I want to say that the pulmonary doctor didn't say anything about exercise but I must say that I was in a state of shock from everything he was telling me! I do keep reading about it though and know that I should get started. Thanks again!
DebbieHi, Debbie! Welcome! My heart goes out to you for how much you have had to absorb in such a short time. First, know that people can live for many years even with severe COPD. There is a lot you can do to increase your quality of life, and don't let anyone tell you that you are out of options or time.
Now for some info. 😀 COPD is a general term that includes emphysema. Some people use the terms interchangeably. Here's an article that explains the terminology a little better: https://copd.net/basics/damaged-lungsHow are you feeling with the oxygen so far? Do you feel like it's helping at all? Generally, if your doctor has prescribed for you to use it 24/7, that is what's best for you and your safety. You may find that you can go without it for short periods, but that can change quickly and without warning, so you should always have it within reach even if you're not using it for some reason. Think of your oxygen as like needing to wear glasses. It's frustrating, but it's what your body requires. If you don't feel 100% sure about your doctors recommendations, you can always get a 2nd (or 3rd, etc) opinion. That's your right, and having another perspective can really help you figure out what to do next. We have articles about lung transplant if you are interested in exploring that in the future. Let us know and we can pass them along if you're curious.
The best thing you can do is listen to your body. It may take some experimenting to see what your body can tolerate with chores, exercise, etc. And some days can be better than others, so it's important to pay attention to how you're feeling as you go about the day. Some people even do simple chair exercises from YouTube, and that's fantastic! Every bit helps. A healthy diet and regular sleep routine can make an impact, too.
You may want to talk to your doctor about pulmonary rehab. This is basically like physical therapy but with lots of breathing exercises added in. It can help you increase your lung function while developing an exercise routine that's safe for you.OK, I've given you plenty to consider for now ... we are here for you and you're not in this alone. Keep asking questions and advocating for yourself! -Melissa, team member
