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.

Interested in more discussions like this? Go to the COPD: Chronic obstructive pulmonary disease Support Group.

@waterboy

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

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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.

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@waterboy

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

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

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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

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@waterboy

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

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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.

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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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