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robertjr
@robertjr

Posts: 69
Joined: Jul 14, 2017

copd end stage.

Posted by @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.

REPLY

hI @robertjr. I’m sorry to read this post- it hit’s home. My Dad has COPD. You are right….63 is young. I wish I could say I hope things get easier but with COPD things don’t get easier.
The Mayo Clinic COPD Diagnosis and treatment web page (found here https://www.mayoclinic.org/diseases-conditions/copd/diagnosis-treatment/drc-20353685) mention seeking a support group. Do you belong to one? or do you find that the support on Connect is sufficient? what are your thoughts on this?
For the sake of future readers and if you don’t mind sharing- What things have you noticed that make the day easier? What things can family and friends offer someone with COPD for help? Have you had any treatment for COPD?

sending peace your way. 🙂 Jamie

@robertjr Just a couple quick ones. First, you should have two instruments. An O2 Finger gauge with a running graph of heartbeat and signal strength (Harbor Freight sells them), and a very good blood pressure gauge (wrist is good. Just remember to never touch it to your chest while it is reading AND always use it while seated.) Track your readings at least twice per day, EVERY day.

@jamienolson

hI @robertjr. I’m sorry to read this post- it hit’s home. My Dad has COPD. You are right….63 is young. I wish I could say I hope things get easier but with COPD things don’t get easier.
The Mayo Clinic COPD Diagnosis and treatment web page (found here https://www.mayoclinic.org/diseases-conditions/copd/diagnosis-treatment/drc-20353685) mention seeking a support group. Do you belong to one? or do you find that the support on Connect is sufficient? what are your thoughts on this?
For the sake of future readers and if you don’t mind sharing- What things have you noticed that make the day easier? What things can family and friends offer someone with COPD for help? Have you had any treatment for COPD?

sending peace your way. 🙂 Jamie

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Thanks Jamienolson in a small group,This year seems so bad,been in hospital 4 times for copd troubles and twice for grand mal seizures and after each time condition ended up staying worse,Use to talk about when i feel better but never happens now.

Thanks for info oldkarl ,Use to try and keep a positive attitude but thats getting hard now.

We had to replace our furnace. I looked into a multi stage unit, new AC, a ventilator, a air purifier, a web enabled control, and putting our house into four separate zones. The installation isn’t completed yet, waiting for the zone card. It is an all Bryant system (Evolution). and it is not cheap….. but if it saves one trip to the ER, it will be worth it. Too early to tell. I have a finger oximeter, that can record 24 hrs… then print out a report. I would also recommend joining the COPD foundation group… they have a great support group.

Your post gives me mixed emotions, happy that I can still move around w/o oxygen…. just uses it at night, BUT also is a wake up as to where I am headed.

@waterboy

Your post gives me mixed emotions, happy that I can still move around w/o oxygen…. just uses it at night, BUT also is a wake up as to where I am headed.

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Waterboy,i also own a house but cant do any work on it now,my son has helped a lot.Cant mow or even clean yard anymore,going to have to sell house and get a small retirement place,cant exspect mywife to do the work at home..Seeing what needs to be done and not able to do it really bothers me.Being told by doctors that theres not much they can do besides getting my ox level to normal range doesnt help.never realized how bad copd is.

@waterboy

We had to replace our furnace. I looked into a multi stage unit, new AC, a ventilator, a air purifier, a web enabled control, and putting our house into four separate zones. The installation isn’t completed yet, waiting for the zone card. It is an all Bryant system (Evolution). and it is not cheap….. but if it saves one trip to the ER, it will be worth it. Too early to tell. I have a finger oximeter, that can record 24 hrs… then print out a report. I would also recommend joining the COPD foundation group… they have a great support group.

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Thank you for the suggestions.

What do you two suggests as far as help from family? What can we do to help make things easier? My Dad isn’t on O2 yet…but should be. Sometimes his nose is purple- but he refuses to resort to oxygen just yet. He just retired this month. His weight effects him but how can you exercise with lungs that don’t allow you to move around?

@waterboy

We had to replace our furnace. I looked into a multi stage unit, new AC, a ventilator, a air purifier, a web enabled control, and putting our house into four separate zones. The installation isn’t completed yet, waiting for the zone card. It is an all Bryant system (Evolution). and it is not cheap….. but if it saves one trip to the ER, it will be worth it. Too early to tell. I have a finger oximeter, that can record 24 hrs… then print out a report. I would also recommend joining the COPD foundation group… they have a great support group.

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@jamienolson I’ll make this quick. I have been fighting copd for many years, use cpap and all that stuff. Exercise: sit in a chair and move your toes around in 2 foot diameter circles, one big toe at a time using your entire leg up to your hip joint. Right then left. Or Left and then right. do it 10 times each. Then more, if you wish. Eventually, after a few days, both at once. Standing, sitting or lying down, tense up your belly muscles and release,do it again and again. Convince your cat or dog or spouse to sleep on your tummy. Tense and release your shoulder muscles. Same with arms and back. and eyelids. Raise your eyebrows 50 times. Close your fists and raise and lower your fingers, one on each hand at a time. Do it 50 times. Same with your jaw. Eventually do all of these in increasing numbers.

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.

@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.

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ppeschke i feel for you.I was put on disability due to copd,after working my whole life..Ifeel i shouldnt havve to prove yo anyone imnot well,eople dont realize how bad copd is ,I get really down at times thanks to mywife and grown children things are alittle better.

@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

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

@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

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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.

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

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