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 Lung Health group.

I'm so sorry Robert. I pray there is something the docs can do to lessen your suffering.I know, through my job, morphine is used for end stage COPD and it helps , at least with mood.

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@joangma can you tell us more about the wire insertion treatment? I think you might be referring to Lung Volume Reduction Coil Treatment for Patients With Severe Emphysema. Here's video about a study being done in France.

Mayo Clinic is also doing clinical trials with coil treatment. What have you heard about it?

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@ethanmcconkey

@joangma can you tell us more about the wire insertion treatment? I think you might be referring to Lung Volume Reduction Coil Treatment for Patients With Severe Emphysema. Here's video about a study being done in France.

Mayo Clinic is also doing clinical trials with coil treatment. What have you heard about it?

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Ethan McConkey , @joangma– Good morning. Boyohboy does this look promising! I had not heard of this. Here is more info:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5937153/
Has anyone on this thread received this treatment?

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I have applied to join this trial at Mayo Clinic Jacksonville as l come here every month. On the surface according to the company's website I qualify.
But the great news is that my pulmonologist at Mayo is one of doctors involved with this trial.
After my bronchoscopy yesterday we had a long talk about it and will be visiting the subject during my stay in the hospital this next week as I recover from a pneumothorax.
As I learn more l will share.

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@djallan

I have applied to join this trial at Mayo Clinic Jacksonville as l come here every month. On the surface according to the company's website I qualify.
But the great news is that my pulmonologist at Mayo is one of doctors involved with this trial.
After my bronchoscopy yesterday we had a long talk about it and will be visiting the subject during my stay in the hospital this next week as I recover from a pneumothorax.
As I learn more l will share.

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@djallan oh no,,, pneumothorax, how did that happen? I have to read about this coil treatment, I've never heard about this.

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I am 57. Quit smoking 21 years ago when throat cancer was found. Thanks to Mayo Clinic clinical research trial, I am cancer free….but: I have had dysphagia probably this whole time and did not know until 3yr ago. Have had trouble swallowing since. 7yrs ago was diagnosed with copd, at some point add brochiactasis. I am so very thankful for those 21 years and overall stay fairly positive, many days this is not easy. I have every tool I can find in my toolbox in order to live the best life I can. I have never met anyone else young{ as I think I am} with a similar problem. Have you ever used an airway clearance therapy vest? Mine helps me a lot, still been hospitalized 6 x this year but not long stays.

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@bobp

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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Not being eligible for a transplant at 50, when I was diagnosed, I would give anything to have the opportunity

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@lauriesmartin

I am 57. Quit smoking 21 years ago when throat cancer was found. Thanks to Mayo Clinic clinical research trial, I am cancer free….but: I have had dysphagia probably this whole time and did not know until 3yr ago. Have had trouble swallowing since. 7yrs ago was diagnosed with copd, at some point add brochiactasis. I am so very thankful for those 21 years and overall stay fairly positive, many days this is not easy. I have every tool I can find in my toolbox in order to live the best life I can. I have never met anyone else young{ as I think I am} with a similar problem. Have you ever used an airway clearance therapy vest? Mine helps me a lot, still been hospitalized 6 x this year but not long stays.

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Hi. I’m 54 with Bronchiectasis, asthma, COPD, sleep apnea, and now paralyzed right diaphragm. I pretty much stay indoors. I don’t have a vest, but use my flutter valve. I’m not in a good place right now.

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@dberrios

Hi. I’m 54 with Bronchiectasis, asthma, COPD, sleep apnea, and now paralyzed right diaphragm. I pretty much stay indoors. I don’t have a vest, but use my flutter valve. I’m not in a good place right now.

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@dberrios– Good morning. It's good to meet you. I'm sorry to hear that you are having a tough time right now Can you tell me more?

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@lauriesmartin

Not being eligible for a transplant at 50, when I was diagnosed, I would give anything to have the opportunity

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@lauriesmartin– Good morning Laurie, it's nice to meet you. I can't imagine how devastating this news must be for you. May I ask how old you are now and how you are feeling now?

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@merpreb

@lauriesmartin– Good morning Laurie, it's nice to meet you. I can't imagine how devastating this news must be for you. May I ask how old you are now and how you are feeling now?

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I am 57 now, feel pretty good about 70% of the time. I am a make lemonade kind of person, so I have figured out how to stay as active as I can dragging along whichever oxygen source best fits the situation.

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@dberrios

Hi. I’m 54 with Bronchiectasis, asthma, COPD, sleep apnea, and now paralyzed right diaphragm. I pretty much stay indoors. I don’t have a vest, but use my flutter valve. I’m not in a good place right now.

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I had severe sleep apnea until I had my teeth pulled to get dentures, due to dental issues. As long as I do not sleep with my dentures in I seem to be apnea free with my supplemental oxygen. A blessing in disguise?! I am sorry to hear of your situation. I hope I am able to help in some way, at the very least I can be a good listener.

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