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robertjr (@robertjr)

COPD end stage: Anyone else?

Lung Health | Last Active: 1 day ago | Replies (109)

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@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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Replies to "@robertjr I wonder if you and @ppeschke happen to have more than simple COPD? I have..."

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.

Prayers for you Robertjr. I also have COPD and I am 57. My mother had it also. I will pray for your body to heal. God Bless.

thankyou so much.

The biggest problem to get over is understanding the difference between life and living. Being alive is just mechanically advancing the calendar from one day to the next. We, as humans, need a reason to living… to watch our offspring grow and welcome new ones into this world, ECT. I have found a new one, volunteering for clinical trials concerning COPD. Maybe some of my data can be used to help some other COPD victim. I volunteer at Mayo clinic Rochester.. what a great group of people in a wonderful setting. In the first study it was about exercise at home.. tai chi style. Learned you don't have to sweat to get benefits. Give yourself a reason to live is the best medicine… and the cheapest.

Great words of encouragement! Trying to get to Mayo Rochester Pulmonology but the are not accepting any new referrals 🙁 > We moved from TN to MN in Dec 2015 and are now heading back and I was hoping to see a doc(s) in the best hospital in the world but I may not get the opportunity. I agree waterboy it is all outlook. I too will be looking at in home exercise i have to believe strengthening muscles will make breathing a little easier have a lower need for o2. Have breath easy day!

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?

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!

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.

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