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b9
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10 Jan 2019, 8:42 am

i have stage 3 emphysema, and it is a bastard of a disease.
i know i will not last much longer, but i so much want to live to see the future.

there is nothing worse than not being able to breathe.

painful cancers can be soothed with morphine and such, but not being able to breathe is the worst.
there is no drug that can lessen the suffering.


it is like being in a submarine where the oxygen has expired, and you claw at the walls to get a breath.
at some point, you may open the hatch and be inundated with death.

anyone who has asthma should definitely not smoke.



envirozentinel
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10 Jan 2019, 8:51 am

I'm so sorry B9. Hugs. :heart:

Is there nothing they can give intravenously that helps? Did you smoke when you were younger?

My paternal gran had emphysema, but I didn't see much of her during that time as I lived in a different part of the country.


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b9
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10 Jan 2019, 9:06 am

yes i did smoke. i have had asthma all my life and i was warned, but i paid no attention.

there is nothing that can lessen the suffering of severe breathlessness except for death i am afraid.

i am going to fight as hard as i can to see another day, even if it is an insufferable day.

i only have one life and i plan to live as long as my lungs will let me, even if i do not enjoy it.
i think i will live for about another 6 months.
but the end will be truly horrific.
as yul brenner said "whatever you do, just don't smoke"

you can not feel the damage as it occurs. you feel as if nothing is going wrong.
when you get to about 40, you feel a bit breathless, but not enough to worry you.
when you rest, you feel fine.
as time creeps on, you start to feel breathless at even mild excersize, and eventually, it is a major chore to do anything.
having a shower is a trial. it is very hard to do. i have to do it in small stages.
wash a bit and then place my hands on the wall and get my breath back.
it takes about 30 minutes to have a shower now.

anyway, whatever.
i will still be around for a while.



EzraS
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10 Jan 2019, 9:25 am

I feel bad for you. I have chronic respiratory problems and have experienced how dreadful it is to to fight for air. Nearly killed me a couple of times so far. Not something I would wish on anyone.



envirozentinel
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10 Jan 2019, 9:32 am

Wish there was more we could do, but know at least you're not alone, you have friends here and take each fresh day as it comes. I admire your stoicism; stay strong.


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b9
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10 Jan 2019, 9:38 am

EzraS wrote:
I feel bad for you. I have chronic respiratory problems and have experienced how dreadful it is to to fight for air. Nearly killed me a couple of times so far. Not something I would wish on anyone.

you are so young to have this ghastly condition.
please be careful. did you ever smoke?

this is a very scary video of a 58 year old man who looks like he is 70.
this is what it is like having no breath.
https://www.youtube.com/watch?v=n9Dc9orAsi8



EzraS
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10 Jan 2019, 11:24 am

Not emphysema. It's one of those complected names, but basically lung infections.



QuantumChemist
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10 Jan 2019, 11:56 am

I am so sorry to hear that you have emphysema, B9. It is a hard condition to live with. My father died from complications of COPD/emphysema over a decade ago. When he was first diagnosed, the medical doctor gave him a prognosis of about the same term of time. But, my father was a stubborn lot. He lived for seven more years passed that point. He started working to live, rather than the reverse.

My father was a two pack a day smoker for forty years. He started while in high school. He stopped that day and started exercising. He started eating heathy and stopped stressing about work. Those changes are what made the difference in living with only one third of lung capacity. It was not easy to do, but he wanted to live.

I just wish he would have lived long enough to see me graduate with my doctorate degree. This condition has killed many of my relatives (father, grandfather, uncles, aunts), so I never considered to ever try smoking. Unfortunately, my sister still smokes a pack a day, even knowing all of this. She will eventually follow in his footsteps in that aspect, as she does not listen to me.

I know it may look hopeless, but please do not give up the fight to live. There are new treatments for this medical condition that may greatly help you. The nebulizer medications have come a long way from when my dad was using them. I know that it is scary to face, but you can outlive what the medical doctors think you will in their diagnosis if you will it to be.



jimmy m
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10 Jan 2019, 12:15 pm

B9 -- I had severe asthma a few decades ago. My lung function was very restricted. It was one stage above death. But I made a few changes and I overcame the condition. Since your case was primarily caused by smoking, I do not know if what I will say will be of any help to you.

Around 20 years ago I found out I had asthma. I began using Albuterol as a rescue inhaler. The only problem was that I was taking several puffs several times a day.

I started taking a supplement. It was called Juvenon. It was available over the internet. I took one tablet a day which contained 1000 mg of Acetyl L-Carnitine HCL, and 400 mg of Alpha Lipoid Acid. This supplement helps to restore the mitochondria in your cells. Mitochondria are the oxygen transport mechanism in your cells. This supplement immediately helped me increase my peak flow by over 100 points on my peak flow meter. So together with the albuterol and the Juvenon I was achieving a peak flow of a 20 year old. This was rather good because I was 50 years old at the time.

My doctors urged me to switch medicines for asthma because I was taking Albuterol (now ProAir) several times per day. So I switched to Advair Diskus 250/50. This worked much more efficiently than ProAir.

Then I had weight loss surgery five years ago. I was obese and through the surgery I was able to drop 120 pounds. Over the next few years I began weaning myself off the Adair. So for the past couple years I am not longer taking any prescription medicine for my asthma. I only take Juvenon, one tablet a day.



b9
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10 Jan 2019, 12:53 pm

EzraS wrote:
Not emphysema. It's one of those complected names, but basically lung infections.

i misunderstood you. sorry



Last edited by b9 on 10 Jan 2019, 4:39 pm, edited 1 time in total.

b9
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10 Jan 2019, 12:57 pm

envirozentinel wrote:
Wish there was more we could do, but know at least you're not alone, you have friends here and take each fresh day as it comes. I admire your stoicism; stay strong.

friends do not really help if all you can do is see their distorted faces from under water smiling at you.
but it's OK.



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10 Jan 2019, 1:03 pm

QuantumChemist wrote:
I am so sorry to hear that you have emphysema, B9. It is a hard condition to live with. My father died from complications of COPD/emphysema over a decade ago. When he was first diagnosed, the medical doctor gave him a prognosis of about the same term of time. But, my father was a stubborn lot. He lived for seven more years passed that point. He started working to live, rather than the reverse.

My father was a two pack a day smoker for forty years. He started while in high school. He stopped that day and started exercising. He started eating heathy and stopped stressing about work. Those changes are what made the difference in living with only one third of lung capacity. It was not easy to do, but he wanted to live.

I just wish he would have lived long enough to see me graduate with my doctorate degree. This condition has killed many of my relatives (father, grandfather, uncles, aunts), so I never considered to ever try smoking. Unfortunately, my sister still smokes a pack a day, even knowing all of this. She will eventually follow in his footsteps in that aspect, as she does not listen to me.

I know it may look hopeless, but please do not give up the fight to live. There are new treatments for this medical condition that may greatly help you. The nebulizer medications have come a long way from when my dad was using them. I know that it is scary to face, but you can outlive what the medical doctors think you will in their diagnosis if you will it to be.


well i was diagnosed 20 years ago, and i have been OK until the last 6 months. it is pretty inevitable at this point. i do not want sympathy however.
i will probably still be here in another year.
i am not saying i am going to die.
i am saying it is bloody hard to live.
i am strong and will live for a while.

i have a nebulizer and it is useless.

i can lie down and feel fine.
as soon as i get up though, it's on for young and old.
thanks for your encouragement.
sorry your dad did not see you graduate.



b9
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10 Jan 2019, 1:16 pm

jimmy m wrote:
B9 -- I had severe asthma a few decades ago. My lung function was very restricted. It was one stage above death. But I made a few changes and I overcame the condition. Since your case was primarily caused by smoking, I do not know if what I will say will be of any help to you.

Around 20 years ago I found out I had asthma. I began using Albuterol as a rescue inhaler. The only problem was that I was taking several puffs several times a day.

I started taking a supplement. It was called Juvenon. It was available over the internet. I took one tablet a day which contained 1000 mg of Acetyl L-Carnitine HCL, and 400 mg of Alpha Lipoid Acid. This supplement helps to restore the mitochondria in your cells. Mitochondria are the oxygen transport mechanism in your cells. This supplement immediately helped me increase my peak flow by over 100 points on my peak flow meter. So together with the albuterol and the Juvenon I was achieving a peak flow of a 20 year old. This was rather good because I was 50 years old at the time.

My doctors urged me to switch medicines for asthma because I was taking Albuterol (now ProAir) several times per day. So I switched to Advair Diskus 250/50. This worked much more efficiently than ProAir.

Then I had weight loss surgery five years ago. I was obese and through the surgery I was able to drop 120 pounds. Over the next few years I began weaning myself off the Adair. So for the past couple years I am not longer taking any prescription medicine for my asthma. I only take Juvenon, one tablet a day.

that is intriguing. i have never heard of those medications.
i take ventolin, atrovent and symbicort for my condition.



envirozentinel
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10 Jan 2019, 2:30 pm

Not sure which part of Australia you're in but was wondering if the climate where you are has a positive or negative effect on your condition? Places that are either too damp or too dry could exacerbate the symptoms?


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b9
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10 Jan 2019, 3:35 pm

envirozentinel wrote:
Not sure which part of Australia you're in but was wondering if the climate where you are has a positive or negative effect on your condition? Places that are either too damp or too dry could exacerbate the symptoms?

i am in the blue mountains at an elevation of 995 meters.
i live in wentworth falls NSW.
the humidity ranges from 10% to 95%.
there is not much i can do about it.
i have a reverse cycle air conditioner set at 22 degrees. it filters the air, so the air is always clean inside.
pollen wreaks havoc with me.
but the pollen season is coming to an end.
i will be OK for now.
it is 7:35 am at the moment here and i have to go to sleep.
thanks everyone. i really appreciate all your help.