COPD end stage: Anyone else?

Posted by robertjr @robertjr, Dec 16, 2017

Sorry havent been spending much time writing lately.Been going to hospital few times for breathing lately..Had a few discussions with pulmonologist,fev was 16 ,going to needa wheel chair.Right now cant even walk out to the car.Even room toroom getting hard..I realize copd doesnt get better but im only 63 not that old.

Interested in more discussions like this? Go to the COPD: Chronic obstructive pulmonary disease Support Group.

@ronap

Yes this absolutely makes sense and very heartfelt and encouraging words. In comparison I feel weak compared to your strength.
Sometimes these trials make us strong in him

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Please don't feel that way. I've had years to come to terms with certain things, and as you know, feelings are never a constant. With cancer the roller coaster, after time, just takes longer to go up and down.

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@merpreb

Please don't feel that way. I've had years to come to terms with certain things, and as you know, feelings are never a constant. With cancer the roller coaster, after time, just takes longer to go up and down.

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@ronap- It's been a while since our last conversation. I'm writing to see how things are with you. I hope that you are feeling a little less "down" than the last time we wrote?

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Are you using oxygen something like an inogen machine. If not that may be worth a try. I never ever thought I would find myself in this kind of situation basically Dead Man walking. That doesn't mean I have given up or will give up I know when the Lord calls me home I will go with no resistance. If you do not find yourself to be into a spiritual persuasion you may want to give that some thought. And yes I'm trying to get my affairs in order.

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My one worry was at my last hour would I grasp for air & the Doctors assured me that NO I would not and that was medicine enough . I have some really bad days but I give thanks for what I do have and my Oxygen has give me the most comfort . I am on it 24 but do break for a few hours if the weather is nice . This winter has been my worse so I am ready for spring . I have had my very first panic attack in a local store but escaped to an area where I got myself together . I could not get home fast enough swearing I would never leave home again but I have and I made the second visit ok . Reading all of your stories and fears, good & bad are so helpful . I appreciate each of you & lets keep on fighting . p.s. I do believe in God & yes my faith & prayers are part of my journey thru Copd .

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@gregoryz

My one worry was at my last hour would I grasp for air & the Doctors assured me that NO I would not and that was medicine enough . I have some really bad days but I give thanks for what I do have and my Oxygen has give me the most comfort . I am on it 24 but do break for a few hours if the weather is nice . This winter has been my worse so I am ready for spring . I have had my very first panic attack in a local store but escaped to an area where I got myself together . I could not get home fast enough swearing I would never leave home again but I have and I made the second visit ok . Reading all of your stories and fears, good & bad are so helpful . I appreciate each of you & lets keep on fighting . p.s. I do believe in God & yes my faith & prayers are part of my journey thru Copd .

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Hi Gregory you post really got my attention particularly the reliance on Your faith and prayer and just wanted to stop and say Thanks. I'm not end stage yet my COPD is pretty well managed at the moment, But my area was Heart arrhythmia and when your in a bad one it feels like you can't breath so that also is my worse fear, not so much dying but the process of that last hour prior. Thanks for your comment of what your doctor said. I now have a transplanted Heart but I still have copd with emphysema from years of smoking and it seems I've recovered some from that after being 10 years of no smoking so just want to stop by and make that comment. And as I like to say to fellow Christians it never goodbye but see you here there or in the Air, God Bless

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@danab

Hi Gregory you post really got my attention particularly the reliance on Your faith and prayer and just wanted to stop and say Thanks. I'm not end stage yet my COPD is pretty well managed at the moment, But my area was Heart arrhythmia and when your in a bad one it feels like you can't breath so that also is my worse fear, not so much dying but the process of that last hour prior. Thanks for your comment of what your doctor said. I now have a transplanted Heart but I still have copd with emphysema from years of smoking and it seems I've recovered some from that after being 10 years of no smoking so just want to stop by and make that comment. And as I like to say to fellow Christians it never goodbye but see you here there or in the Air, God Bless

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Yes , I know it is like my Grandfather would say "see ya at the house " I never liked drama and long going on endings in life so I pray my last hours are calm . I will never forget the moment I realized I would leave this earth and it was a little scary thinking of slipping out into a new world and not being around familiar people and things as I make my way to the gates lol. I think it has been the most wonderful gift because I now look around me with greater appreciation and true concern for others . I have a whole new respect for everything and for that I feel blessed even if it took me being diagnosed with COPD I see this life on earth as a pretty neat place now lol I enjoy the little things so much more . I love that see you there or in the air . God Bless you friend

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I am end stage, COPD, and 79, I wasn’t diagnosed until I finally found the right Doctor, who saved me from “flare up”, that had put me in ICU!! I am on the Trilogy sleep system, I retain CO2,and it has saved my life, I also have severe sleep apnea. My Dr. Has been upfront with me, I’m well aware there is no cure. I swear by my Trilogy, I have avoided hospital stays, by using it every night, and if I need a nap, I’ll use it, in the afternoon. I hope I haven’t bored you.

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@kathleenshank68

I am end stage, COPD, and 79, I wasn’t diagnosed until I finally found the right Doctor, who saved me from “flare up”, that had put me in ICU!! I am on the Trilogy sleep system, I retain CO2,and it has saved my life, I also have severe sleep apnea. My Dr. Has been upfront with me, I’m well aware there is no cure. I swear by my Trilogy, I have avoided hospital stays, by using it every night, and if I need a nap, I’ll use it, in the afternoon. I hope I haven’t bored you.

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I am so sorry for your present struggles... and certainly not boring! You are still in the battle! I'm so pleased you have confidence in your'right doctor' .
I am intrigued by your "Trilogy Sleep System"; could you explain what that is ? Breathing and sleep are a grumpy combination!
Thank you.

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Many years ago, a dear patient said,"Growing old ain't for sissies!": the same can be said for these diseases that don't quit.
Finding adequate assistance is so necessary, yet can be so problematic. Hiring homehelp is expensive, and even then can be of poor quality, and using friends and family brings some prickly dilemmas.
I have found that if the health challenge has an end point, then help seems to be abundant and free flowing, but with these illnesses, it is a long haul without the desired outcome!
These folks have a frightening dilemma, they may want to help, but can get exhausted from all the effort and from the ever increasing need; all the while dealing with, and watching the disease slowly gain the upper hand. Their discomfort and their own grieving take a toll, and require attention too.
Having open communication is vital, not just to communicate needs, but also to support each other as you all are going through the losses that this brings. Grieving together is painful but bonding too, as well as very healthy.
In practical terms, when using friends and family as your helper/supporters, using several people is best. Then you do not over burden one person, until they quit out of exhaustion and frustration!
But more importantly, we individually are the persons who have the 'main role', and yes, we have the greatest burden of loss.... but, we also have the responsibility of caring for those we love by being mindful of the burden we bring to our relationships.
Showing your concern for their needs and how they are fairing in this struggle, is a gift we can give them.
Despite the sorrow, we are still building memories for them to remember.
How they remember us, is something we do have control of!
This is neither simple nor easy, and the practical issues are only the surface.
We need wisdom and courage for the rest.
Wishing each of us God's help in our individual journey.

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@kathleenshank68

I am end stage, COPD, and 79, I wasn’t diagnosed until I finally found the right Doctor, who saved me from “flare up”, that had put me in ICU!! I am on the Trilogy sleep system, I retain CO2,and it has saved my life, I also have severe sleep apnea. My Dr. Has been upfront with me, I’m well aware there is no cure. I swear by my Trilogy, I have avoided hospital stays, by using it every night, and if I need a nap, I’ll use it, in the afternoon. I hope I haven’t bored you.

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Hi. I’m happy to hear you have found something that helps you. My seeet Dad has severe COPD and much trouble sleeping. Nothing seems to help him get a good night’s sleep. What is the Trilogy sleep system? Thank you.🙏🙏🙏

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