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.

@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

If you have challenges before you depart MN. I encourage you to stop by St Mary’s Hospital ER, in Rochester where they have a great pulmonary team who could look at you in ER! They can further diagnosis and they may make an appointment for you at Mayo. They are all connected aren’t they?
Best

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

Boy you have that right! In short 50% of living is attitude and determination! After my lung cancer surgery I woke up and had great difficulty finding my next breath… with most of my left lung removed.
The stigma and blame was a shock that just made me fighting mad! Doctors and staff understand that there is a lot of lung disease that any body can get.
Awareness Education & Research are critical to saving lungs and quality of life.

Exercise does certainly help along with diets and mindfulness. Dr Amit Sood Paced Breathing (began as a research study ) has helped my become Resilient.

I have learned to pace my breathing, and run. Even 10k races! And speak up/out
to help support the work of amazing and dedicated doctors and staff to help save more lungs and lives and give victims of lung disease. Because we must be one voice to give families and communities a better quality of life! Lung disease disease is Expensive and we must help change the face of lung disease together!’
I love your neVer give up attitude!

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

We actually live in Minnesota. St. Cloud Hospital is where my husband is. I believe they would suggest Mayo if they thought it would help. But, I do appreciate you input and will keep this suggest in mind and talk to doctors.

REPLY

My husband was diagnosed with COP (BooP) having a biopsy of the lung. Cryptogenic Organizing Pneumonia. This is different the COPD. Antibiotics will not work, only steroids. My husban was on Finasteride and Tamsulosin for prostate problems.

REPLY

My husband is 60 and he has same story as you. I feel so bad. I can’t fix it. But he can’t walk to car without feeling like he’s going to pass out

REPLY

@kitkatkellykat @sneakerss . Im sorry about your loved ones.
My mother-inlaw suffered many years with COPD. Prior to her diagnosis with COPD she suffered a major stroke. She was paralyzed on the whole left side of her body. She spent the last 15 yrs of her life wheelchair bound, on oxygen. It is a very helpless feeling watching the struggles a loved one goes through with this disease. God bless them.

REPLY
@robertjr

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

Jump to this post

Do you ever feel like bric_brac just sitting there no energy or air to get up and move?

REPLY

I have a friend I have known since we were 3 yrs. old. We are both 68 now. She has COPD and I don't think she realizes how bad it is. She walks with a walker and can get around to bathroom to bed and to lift chair. I live in florida and she was in Indiana but I went to Indiana and brought her to live with me now. Guess I keep hoping she will get better and she has some but I wonder what to expect next. And how can I help her help herself more as I feel I have waited on her hand and foot but am thinking she should be able to do more on her own as far as making it to refrigerator for a snack or simple things. And from what I am learning she will only get worse. But she needs to be with me even if she ends up in assisted living since she has no family or friends in her home state. Am I dreaming thinking she will get better???

REPLY

Hi @jaynel77,

Before anything else, I want to applaud you on your dedication to your friend! I'm certain you've already made a difference just by letting her know how important she is to you. I'd like to introduce to other members on Connect talking about COPD and emphysema. Please meet @robertjr @oldkarl @waterboy @ppeschke @cognac @littleonefmohio @sneakerss @jo54 @crashnam @penlee @redsox. You can read more about them in these discussions:

– COPD/ Emphysema https://connect.mayoclinic.org/discussion/copd-emphysema/
– Just wanted to say hello. Have congestive heart failure & COPD https://connect.mayoclinic.org/discussion/just-wanted-to-say-helllo/
– Howdy fellow worriers: Questions about lung biopsy for COPD https://connect.mayoclinic.org/discussion/howdy-fellow-worriers-i-speak-mainly-for-myself-ive-got-a-bunch/

The Mayo Clinic COPD Diagnosis and treatment web page (found here https://www.mayoclinic.org/diseases-conditions/copd/diagnosis-treatment/drc-20353685) mentions seeking a support group. Is she part of a support group in Florida? Has she had any treatment for COPD?

REPLY
@robertjr

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.

Jump to this post

I Decided to keep my house. I have hired a gardener who comes weekly to cut the grass and will on request trim/clean flower beds in front and back. He also does snow removal if the winter. I think this is much cheaper than condo fees and still gives me the convenience of living in a house as apposed to a crowded high rise. I have been doing this for 3 years.

REPLY

@sews Good for you. That is a great way to remain independent.

REPLY

what is the name of the wire placement method used to help copd breath easier ?

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