How do I deal with this?
Hey all, first post here. I’ve been struggling with this for a couple days now and I thought posting in a community might help. I’m 36, my Dad, 69, was brought by ambulance on Tuesday with a copd event, diagnosed with pneumonia, then yesterday they told us his copd is now at end stage and for him to get his affairs in order. They told him he had maybe 1-2 years. Today they said with lifestyle changes and following the specialists plan he may have 3-5 years. Is that even possible with end stage copd?
I just can’t cope with this, I’m having such a hard time. My Dad is my rock, my everything. I keep imagining life without him and I feel so lost. I’m strong when I’m with him, for him. But alone I’m a mess. I just need to vent. If anyone has any kind of advice about how to just get through your days, id appreciate it so much.
Thank you ❤️
- Liz
Hi.
Welcome to our community. I'm truly sorry to hear about what you're going through. Your courage in sharing is appreciated. I've written an article on the term 'end stage COPD' that might provide some insights and comfort. I will post a link here (https://copd.net/living/hospital-questions) if you want to check it out. We are here to support each other. And your voice matters in our community. All the best. John. community moderator. Thank you so much John. I’m going to read that now.
Hi Elizabeth! Welcome. I'm glad you're here -- the people here are amazing and you as a loved one deserve support just like people with COPD do. 😀
I have to admit I'm a little frustrated by the way the hospital team talked to your dad about his COPD. As
mentioned in his article, "end stage" is a loaded term. We have people here on the site who have been in stage 4 or "end stage" COPD for decades. Generally, the four stages of COPD are simply divided into how well a person's lungs are functioning compared to that of a healthy person's. But it's important to note that even levels of function aren't an indicator of lifespan. Putting a timeline on anyone's life is not especially helpful.
Does your dad have a pulmonologist that he's seeing regularly? Is he on oxygen and/or taking medication for his COPD? It may be a good idea to talk with the doctor about how well his treatment routine is working, and if adjustments are a possibility. You may also want to see if pulmonary rehab is an option for him -- there are skills he can pick up from that regardless of how severe his symptoms are, and it can be a great tool for those recovering from a exacerbation or infection.We are here to answer any questions you have and even just to listen if you want to vent. Your dad is also welcome here, if he feels like meeting others with COPD might be useful. Sending hugs to you, please keep us posted on how you all are doing. Take it one day at a time! -Melissa, copd team
May i ask seems everyone ask are you on oxygen yet how does that effect your answer?
Good morning. And welcome to our COPD community. And good question. Not everyone with COPD will require home oxygen, as it effects each person in different ways. That said, if your oxygen levels are low, your doctor may prescribe home oxygen as a means to keep your oxygen levels in the safe range. I wrote a post a few years back about the benefits of wearing home oxygen. I will post it here if you want to check it out (https://copd.net/clinical/home-oxygen-benefits). Generally speaking, your doctor or nurse will check your oxygen levels (https://copd.net/clinical/interpreting-oxygen-levels) at each one of your doctor's appointments to make sure that your oxygen levels are at safe levels. The second link above should provide you with some basic information about what are safe oxygen levels and what doctors look for -- in case you are curious and want to check it out. And now a question for you if you do not mind: Do you use home oxygen? Is this something that has been discussed for you? John. community moderator. I see you answered my question in your other comment that you posted here (https://copd.net/stories/my-copd-life#comment-521652). John. community moderator.
Well hopefully I can help with your worries. I was diagnosed just over 2 yrs ago with Stage 4 COPD and here I am! I finally went on 24/7 Oxygen 6 months ago, yes taken by ambulance to the Hospital being diagnosed with Pneumonia, clasped lung and then with in 24 hrs Lung Cancer Stage 3a. Here I am today, writing to you, in remission, having had a new Pulmonary Function Test (PFT) showing my lung capacity / function remains as it was 2 years ago. Not bad and I plan on being around a long time. Yes, should your father get his affairs in order, of course, but so should you in my eyes, just how I have told my daughters who are 34 and 38 years of age. Why?, no body knows when something will happen to them, being an accident, illness or just being in the wrong place at the wrong time. It's all about taking care of yourself. Medical advancements are also showing up, so a positive attitude for the next new medication or procedure might be something really awesome.
As for how you could deal with this, live one day at a time, learning how to trust your own choices, building your self confidence. While making them you can think about "what dad would do or say" what was it that I did last time for this type of thing. Then if you wish, write it down, then call and see what dad thinks if you wish, thus learning to trust yourself for again no one knows how long any of us will be on this Earth, hopefully a long time. It makes me so happy when one of both of my daughters calls me and tells me that they handle something they normally would have called on to ask for my advice or tell them what to do. Learn about this disease so hopefully when or if your dad might need your help, you are ready to give it, thus keeps your mind busy and not on what will happen one day, just which day, no one knows. I wish your family well, it's a learning experience for all of us to say the least. As others have said, just come back if there is anything else that you wish to ask.
