Anyone else stage 4 trying to stay at home?
After close to 3 years of struggle, it’s finally been determined that I’m an unsuitable candidate for any surgical interventions. I’m told that remaining on the transplant list will not delay somebody who has a better chance of success, so I’m happy for that. I’m finally getting some palliative care and it’s allowing me to function a little. I use the breathing techniques which can be learned here, (they’re quite helpful when combined with an optimal stable medication regimen), and I have nurse visits and electronic monitoring. I’m experimenting with arranging the kitchen so I can put together simple meals without being too fatigued to eat by the time it’s done. I’d like to hear from others how you’re managing, ideas are welcome. (I’m only 50 years old so in some ways I’m still more durable than most people at this late stage) Thanks and nice to meet yall
Yes, Yes and Yes again. I am not going outside my property lines, but I do go out for air. Fresh air is one of my favorite feeling. I will sit out in my wheelchair, just to feel the air. Keep breathing, that is my motto,
Hi again, jdh - that sounds like a good idea. Discussing this with your specialist might help to shed some light on this interesting concern. It is puzzling for me, too!
Please do check back and let us know how this conversation turns out for you going forward.
I will wish you 'good luck!', and look forward to continued conversations together here.
Warmly,
Leon (site moderator COPD.net)
, I'm not sure what conversation you are referring to but I do know that our advocate is our resident Alpha-1 expert so if there is anyone to talk to about it-it's her! All the best, Sam S. (COPD.net, team member).
Hello there, I am also stage 4, it has become most limiting, particularly this year, as has been for everybody. I read a lot, and enjoy researching anything and everything. The internet is great for this, love listening to the birds, basically all the free things in life. I also have a little dog who has been my constant companion for the past nine years, he has kept me from going too deep into depression, have had a struggle with the loss of what my life used to be. We have a bit a journey through this quagmire, special thoughts to you all
your story sounds much like mine. I enjoy looking out my window and watching the birds, butterflies, rabbits and squirrels. I cant go outside or open my windows during the summer due to humidity.
I love little dogs and wish I had a little companion as I live alone, but I wouldnt be able to care for it or walk it outside.
I'm 74, single, live in a bubble and much like you love doing research, reading books, handling my business by phone, etc.
I used to love to cook and socialize, however i dont even go outside my house anymore.
I can also relate to your grieving the loss of who you "were" before lung disease. What follows the grief is acceptance and adaptation of what is. Sounds like you've pretty much reached that stage, knowing your limitations, loving and being loved by your pup.
Depression may come and go, just try not getting "stuck" in it when it rears its ugly head.
In my bubble, never realized before how beautiful the chirping of the birds were. Funny, how gratitude for the little things we appreciate bring us such joy.
Hang in there...
Hi jdh, and thanks for lending your own support and encouragement here. We also appreciate you sharing your own personal experiences managing this disease with the community.
if there is anything we can do to assist you, please let me or any other moderator / team member know. You are always welcome here!
All the best,
Leon (site moderator COPD.net)
Have you heard of Zephyr? It has been approved by FDA. It is in the AARP magazine, on page 53.
Susie Sheppard
Hi, After the procedure, there was no pain, just a slight sore throat that day. there was no recovery, and I was only in the hospital for a couple days because it was such a new thing at the time. It was amazing to see how fast my breathing improved! I was truly blessed in having a doctor who wanted to do this. I went back for a recheck this week, and he said I am holding my own. The Pulmonary Function Tests I had two months ago showed no deterioration from a year ago.
Hi whirledpeas, and thanks for sharing this with the community. I know you have been a big proponent of this procedure since it worked so well for you.
That really is great news - the recheck of your PFT's shows a steady state from a year ago! That is a real indication of just how well the valves are working for you.
I am so glad to hear it, too!
Warmly, Leon (site moderator COPD.net)
I wrote an hr long message to you and lost it bc my phone rang and wiped out the msg. I will get back to it, in a few hrs. I've taken pix of how i arrange and organize food, planning my menu, etc. Will post later...let me just say I can relate. thanks so much for sharing what type of diet has worked for you! I'm glad you have found something that works. All the best, Sam S. (COPD.net, team member). 
... I feel your frustration...I found this conversation, randomly while looking for who I was messaging at the time my phone rang, and got dropped.. I lost my place...and it was rather lengthy!! anyway just thought I'd share that as I was passing by, gotta be good for a short giggle! God bless...
