A few questions.....
Hi Everyone - I've only just put a post - I'm so sorry to post another. Being recently diagnosed, I have so many questions, and I have a 4 - 6 wait for my respiratory specialist.
I have other health issues as well, which [I think] are under control. I have liver cirrhosis [which I'm managing/accepted/doing everything I'm supposed to], mild pulmonary hypertension [which has has gone from mild - moderate down to mild], my lung sarcoidosis [which is not active - has left scarring though], and of course my [moderate] COPD.
One of the reasons I post so often is that I love my son so much, and to think I brought all of this on myself - he doesn't deserve this. I'm 55 and want to live to see his children. I know that I've halted my cirrhosis - there's a strong possibility that I can still live a full life with this. I'm seeing the Respiratory Specialist for the Pulmonary Hypertension and COPD in a few weeks. I start Pulmonary Rehab this week. I've also lined up some counselling sessions.
I'm doing everything I can to halt these conditions - I know I can halt the cirrhosis [and I know I'm on the way to doing this], yet COPD is a Progressive Disease. Yet I read of people, through sheer hard work, bring their FEV1 down a stage or two. eg/ moderate to mild. Does this mean it will still progress eventually, and we'll all end up on oxygen? Or can we keep it stable and live a full life and die of something else?
I'm so, so sorry for my constant posts - I've also called various helplines, who have been very good, but to tell you the truth, I get the most support from caring, giving people who have these conditions. Thank you from the bottom of my heart.
Hi.
No need to apologize for multiple posts—you're in the right place to ask questions. Let's tackle your concerns one by one. While COPD is considered a progressive disease, there are several ways to slow its progression, sometimes significantly. Based on what you've shared, you're already doing a great job by seeking care, starting pulmonary rehab, and focusing on your overall health. I actually wrote a post about how to slow the progression of COPD, and you can find it here🙁https://copd.net/living/slowing-progression). I've also shared more tips in this article: (https://copd.net/living/6-things-new-diagnosis).
COPD progression is different for everyone. While some people may eventually require oxygen, many do not, and by staying proactive—like you're doing—you can improve your chances of maintaining good quality of life. I’ve personally seen people stabilize their COPD and live long, fulfilling lives, even after being diagnosed with severe stages.
You're already on the right path, and I'm glad you're here. Keep reaching out—this community is here to support you! Wishing you all the best. John. community moderator.
my goodness, you have a lot going on. With you cirrhosis, did they test you for Alpha 1? I hate to ask or even through that into the mix but with all that going on it sounds like what you could have going on. That is what I have. Its a genetic liver disease that can cause lung and/or liver problems. No everyone with COPD ends up on oxygen. Like you have stated, you're doing what you need to to try to stay healthy. You're right about the cirrhosis as well, you can live many years with this. I have stage 1 fibrosis so Im not going through the cirrhosis point yet but have
many friends who have been living with it for many years. That goes with COPD. I know many who have been at stage 4 COPD for over 20 years. You've got this and we are here to help you. 🥰
Feel free to message me. For more info about Alpha 1 you can read this article htt, you can read this article.
Best, Jackie (Moderator)Let me ads that having oxygen is not the end of the line. I have oxygen at night only although I did not feel it was necessary. What I have learned is that oxygen can help your other bodily functions and me to other problems at bay. I know think of it just like for with sleep apnea using cpap machines delivering oxygen at night. Anyway, dont be afraid should that become a recommendation.
And I will add that auto-junk(correction, word guess, spelling) on my phone and tiny keyboard with arthritic fingers as well as my failure to proof makes for lots of mistakes in my post and I apologize 🤪. Hope message was not last. Best of luck!
