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.

Alive is a condition, living is mental. Sometimes I wonder if being alive is worth not living?

REPLY
@oldkarl

@robertjr I wonder if you and @ppeschke happen to have more than simple COPD? I have this, but in my case it is part of my Amyloidosis/LiteChain hATTRwt. My lungs are filled with nodules and lesions and other growths. Some clinics also call it Mixed Connective Tissue Protein Deposit Disease, or some variant. Most of the material notes that COPD is an early and continuing stage of several mutations of Amyloidosis. The best early tests are the SERUM FreeLiteChain (sFLC) and the 24 hour urine collection and protein test. If the sFLC returns high light chain >1.6 mb/dL and/or Heavy chain protein >1.9 mg/dL, the mis-folded protein is a problem. This disease can be treated now with Patisiran and some other just released meds. But the most important thing I can say is “Don’t give up. I am at the point I can not go up to the third step of my step ladder, but I can still celebrate being alive. https://bit.Ly/1w7j4j8

Jump to this post

Im sure its copd,had plenty of test through the years.Seems like things dont change for awhile then things go down sofast.Once things get bad never seem to return to full health.Start to feel like not worth doing anything too hard getting breath back.,start to wonder whatsgoing tohappen next time iget sick.

REPLY

waterboy,with copd im alive but thats about it most of the time.

REPLY
@robertjr

waterboy,with copd im alive but thats about it most of the time.

Jump to this post

Robert… I am on the high end of the moderate stage, I am also a Alpha1 (MW)……. have you ever been tested? You can get it done for free. Some days just standing at the counter helping the wife make a meal is a stretch.

REPLY
@ppeschke

Robertjr I understand you saying that every day chores and activities have gotten to be too much. I am single and love alone so I have nobody to help get groceries or run errands or anything. My only support person is my sister but she has a very hectic life. You’re not alone!
I am wondering how can you get someone to understand your fatigue and some days just feeling sick? I feel her getting frustrated with me. I have declined rather quickly and I feel terrible having to ask her for help sometimes & I just feel a little like she thinks I’m just faking it at times.

Jump to this post

@ppeschke, I understand how you feel and how frustrating it is for you. I, too, live alone. Unfortunately I have no family. I’ve started looking for someone to help me that I can afford before things get too bad. Good luck.

REPLY
@waterboy

Alive is a condition, living is mental. Sometimes I wonder if being alive is worth not living?

Jump to this post

I have family but I think we are alone as the disease progresses. We have no outward signs of being ill. Family thinks I should walk more. I can’t breathe after a few steps. I have always loved to read and I can’t settle enough to get involved in a book. I seem to stare at the wall a lot. I get upset with me and my lack of drive. I am thankful for what I have. I do agree with each bout the illness progresses. Am now coming off one. I will be better tomorrow. We are all different but so alike. There is always someone who feels worse than we do. Pray for each other as we are never completely alone. God loves us and cares for us.

REPLY
@waterboy

Alive is a condition, living is mental. Sometimes I wonder if being alive is worth not living?

Jump to this post

@jo54 You are right. You are never alone. Lots of times I cannot breathe and I am short of oxygen while on the CPAP in my bed at night or in my big comfy chair. My family thinks I am nuts. So do most doctors.

REPLY
@waterboy

Alive is a condition, living is mental. Sometimes I wonder if being alive is worth not living?

Jump to this post

You are not Nuts and I am willing to bet your family is so scared they do not know what to do.
Perhaps learning how to breath with a relaxation tape or assistance will help you? It helped save my life!
Dr Amit Sood has a lot of helpful suggestions in a book Stress Free Living.
linda

REPLY
@waterboy

Alive is a condition, living is mental. Sometimes I wonder if being alive is worth not living?

Jump to this post

Jo54, your post has heart and wisdom. You (we) are never alone and God is ever faithful to be with us. It must be difficult for family to watch the activity changes and we still look the same. Praying for all my PF brothers and sisters that you will find a place within yourself of comfort and peace. You are loved.

REPLY
@waterboy

Alive is a condition, living is mental. Sometimes I wonder if being alive is worth not living?

Jump to this post

@penlee, thank you for reminding me I’m (we’re) not alone. It really helped me especially tonight. God bless you.

REPLY

My life passion for the past 10 years as a lung cancer survivor, with all of the challenges to breathe through so much, is to help research save lungs and lives. My heart aches for everyone with lung disease. This is why I respect the opportunity CONNECT gives to all of us.

We must ban together and fight for each other and share our feelings of fear and loneliness. Each of your messages are so important. If we can encourage others to join our voices, I believe we can become one voice to help raise awareness. With awareness we can educate the world. With education and research we can save lungs and lives.

Thank you for having the courage to share your true feelings. You all are amazing and I care about each one of you so much. There are many ways we can raise awareness about these horrible lung diseases together we can help Mayo Clinic lung researcher’s find a cure. We are all in this together. Cyber hugs to patient, moderator and mentor.
linda

REPLY
@waterboy

Alive is a condition, living is mental. Sometimes I wonder if being alive is worth not living?

Jump to this post

cognac,were not alone thereare times i feel useless ,get frustrated not doing what i know i should be able to do.But my wiife and kids
are there to help me.and there are so many people willing tohelp once they realize you have trouble breathing.

REPLY
Please sign in or register to post a reply.
  Request Appointment