How do you deal with knowing what it's going to do to you, when your times up.
I was told two and a half years ago that I had asthma, chronic bronchitis ,COPD , and in stage 3 emphysema, I didn't believe them. I partied, smoked ,drank and did so everyday. Until last year, my lungs got so bad that I had to go in and have surgery done, I was struggling to breathe, I couldn't walk without taking a few steps and had to set down before I passed out.I can't take steroids because I'm allergic to them, infact I'm allergic to a lot of the drugs that treat my conditions . With that being said; here lately it's been really hard to breathe, walking takes it out of me fast, I'm so wore out , I feel like I'm suffocating all the time.
I watched my grandmother and my aunt passed away of COPD and emphysema and in the end their death was awful. And it will be the same for me, and it makes this harder being alone, because watching them struggle to just get some air to breathe and it puts so much pressure on the heart too. That you want to just go ahead and give up. I don't want to put my loved ones through that, hell I don't want to go through that, I have my days where I want to end it, so I don't go out like that. Can someone tell me that there's hope, yes I know it's bad, but it's not like it used to be is it, where your suffering and miserable because you can't get the help that you need. there has to be more natural ways somewhere out there that will help me, since the medicine they use to heal us, I'm allergic to . I'm not sure where or what or even how I'm going to make it through this.
Hi
. Welcome to the community! My heart goes out to you. Steroids are such a key part of COPD treatment. It must be difficult to get by without them. You are not alone though. We have other members who can't use steriods for a variety of reasons. Your situation might feel hopeless right now, but it is not. We have members who were diagnosed at stage 4 and are still with us, living life as fully as possible, two decades later. Everyone is different and everyone's progression is different.
Anything you can do now to improve the functioning of your lungs and your body's efficiency in using oxygen will help. That means quitting smoking (if you haven't done so already) and getting as much exercise as you are able. Exercise is a big word, but it has different definitions for people with COPD than it does for people whose physical abilities are not comprimised. It basically means doing a little more than usual to challenge your vascular system. For you, that might mean walking to the mailbox and back once a day or doing arm rotations while sitting in a chair. Hopefully, you will find that you can do more over time.
Here is an article about natural COPD treatments: https://copd.net/treatment/natural-remedies-overview.I hope others chime in here with treatments and lifestyle changes that have been helpful for them as well.
You don't have to suffer the same fate as family members who suffered from COPD before you. Most people with COPD today will live long enough to die from other causes. You have a huge community of people here to support you on this journey. Please reach out whenever you need support or a place to vent. Wishing you the best. - Lori (Team Member)
We are all here for you! Lori gave you some great tips, and I also saw that gave you some mental health resources on your other post. I also wanted to contribute a few more ideas.
First, have you ever gone to pulmonary rehab? This is like going to a gym class but it's specifically designed to teach you how to manage your breathing better and strengthen your body. Everyone with COPD can benefit from this, and if it's new to you, I encourage you to ask your pulmonologist (or GP, if you don't have one) to refer you. I believe there are also pulmonary rehab programs that can be done online if you are homebound.
Do you have a flutter valve device? These are inexpensive, and they help you to bring up mucus while also helping to increase your lung strength. There are several different brands but they all do the same thing. This one is called Acappella:
https://www.amazon.com/Generic-Portex-Acapella-Choice/dp/B0CNBKJHTF/
Check with your doctor before you buy anything online -- they may want you to get something different, or they can write you a prescription so it can be covered by insurance.There's also this vibrating vest that is for people with severe COPD. You might be a candidate for this considering all the medicines you can't take. Here's more about it:
https://copd.net/living/vest-therapy
Finally, just a note about "when your time's up" ... all of us, whether we have COPD or not, will probably end up getting sick or needing help someday. It's not an easy thought. Talking to a therapist or chaplain who specializes in chronic illness could help you work through your thoughts about the future. My grandmother had COPD as well, and while the end was not easy for her, she was kept comfortable at home with the support of hospice. There are so many things they can do today to help minimize pain and anxiety at the end of life. Tell your loved ones and health care team often that this is important to you, so they can do everything possible to get you that support if you need it.
I know this is a lot of information. Take your time and go through it at your own pace. Life with COPD is different, but keep looking for things that make you smile ... you are not alone. -Melissa, team memberthank you so much some people don't understand what you're going through and trying to explain it to
they still don't understand it.
And having other diseases with it it really makes it hard
Thank you for the info I have all of these and a couple more. I appreciate you taking the time to do the things you found for me some either don't know they exist or can't afford them. I'm going to go look into a few things that you all have sent me and thank you for caring.
After having a heart attack in May this year. "Stemi". and large blood clot removed.
3 Stents and 2 months later the LAD stent. I kept on thinking Please Dear God. Let me live. Thank God the wife rushed me to the hospital. It is close. A compound problem with the stage 3-4 COPD i have. I have accepted my destiny. Just keep on thinking positive thoughts that a lot of times brings happiness to my being. Very true to the statement. People have no clue on the challenges of just breathing day to day for us that suffer.
, I hear how scary that must have been but it sounds like you are doing your best to keep a positive mindset and that is so important. We are here to offer you any support or even just an ear to listen whenever you need. All the best, Sam S. (COPD team).
I was previously a hospice nurse. When the time comes, hospice will be able to help you with physical, emotional, and even spiritual issues if you choose.
