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.

good morning i have just joined group as i have been diagnosed with stage 4 copd and they are reccomending a lung transplant
i guess i am on here looking for some thoughts on this as i am a 52 year old male whom this disease has hit really hard and out of nowhere
i woke up march of 2017 with a breathing issue and within this time have been told i need lungs
really hard yo swallow but i can tell you it has taken its toll on my health
i have lost my appetite losing 70 lbs and my activities have diminshed to other than work and rehab to watching tv i hope you all are well today and God Bless

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@bobp The only thing I have to offer is to insist that you get a second and a third dX from mds in completely unrelated clinics.

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I have just joined the group as well. I was diagnosed with CO in late 2013 and have not been able to work full time since. I don't seem to be as bad off as some of the other posts I have read. I can still get around somewhat. I can still do laundry and dishes but that's about it. I still drive. I have lost 40 pounds since 2013. Is this a symptom of COPD? No matter what I eat I can't put on any weight. I have been referred for evaluation for a double lung transplant to begin next week .I live in the same city where the transplant will be done. Will I be able to stay at home through the evaluation process? Thanks for listening. KTB.

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@ktb77799

I have just joined the group as well. I was diagnosed with CO in late 2013 and have not been able to work full time since. I don't seem to be as bad off as some of the other posts I have read. I can still get around somewhat. I can still do laundry and dishes but that's about it. I still drive. I have lost 40 pounds since 2013. Is this a symptom of COPD? No matter what I eat I can't put on any weight. I have been referred for evaluation for a double lung transplant to begin next week .I live in the same city where the transplant will be done. Will I be able to stay at home through the evaluation process? Thanks for listening. KTB.

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Hello KTB,
I am a dietitian who has severe asthma. Weight loss is common with COPD. You are using a lot of energy to breath and get through the day. Eating small nutrient rich meals/snacks 6 times per day is recommended. If you able to see a dietitian they can put together a meal plan for you to follow. You will really want to focus on your nutrition as you move into the transplant eval/prep.

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@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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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.

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@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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Jamie ,thank you for the wonderful message.Im in a support group,its so nice to talk topeop!e about it.Just seems like any problemturn into another step backwards.colds,pnemonia aflu,and this might sound unusual,i have had grand mal seizures sincei was 5 and since copd i get worse as far as copd aftereach seizure.Take so many things me and pharmicist and ox company onfirst name.basis.My wife and children are so helpful make things so much easier.

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@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,im lucky my wife and children understand,ive been on a ventilator at hospital 5 times and have had grand mall epilepsy since i was 5 so i hope they be?ieve me.Ido feel like im a burden sometimes, b ut idont have much choice.

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@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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thankyou so much.

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@robertjr

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

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Waterboy,i can handle small breakfast,or lunch thats it.

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bobp if you and doctors agree on transplant thats great.I was set to take coarse for lung transplant until cancer found,that stopped me from lung transplant.my age and condition ofcopd ruined my chance.

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@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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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.

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@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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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!

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