MDJunction - People Helping People
 

Why wear a ribbon?

 
"I am a survivor" (oneokbunny)

MDJunction to me

mpmom"MD Junction is my second home, Where my friends are always ready with advise , compassion and a kind word or two. Where I can always be myself never having to put on a brave face or smile if I don't feel like it.
Thank you MD Junction
" (mpmom)

more testimonials
Emphysema Support Group
A community of patients, family members and friends dedicated to dealing with Emphysema, together.
Join This Group
Group Home   Forums   Articles   Members (93)   Diaries   Videos   Leaders   Guidelines
Emphysema Group RSS Feed
Emphysema ForumsGeneral & SupportIs anybody interested if I share my experience?
05/10/2012 02:57 PM
ConstIva
Posts: 10
New Member

I am not sure if members of this group already know what I can tell with regard to how I manage to live with my severe emphysema (diagnosed end stage) and what "tricks" I found helpful to ease my breathing.

Just let me know if it does make sense to somebody.

Of course, I am not going to recommend anything; I can only share my experience, my knowledge, and my "inventions," so it will be up to anybody to decide, if it's worth any attention. Smile

Reply

05/10/2012 03:28 PM  Top
bluerabbit63
 
Posts: 54
Member

constiva welcome to the group, i for one would be welcoming to any tips you may have, as to ease your breathing, i'm sure there are many others in this group who would welcome any thing you can share, im still stage one but i will take any tips i can get, ...kimra

Previous discussions I participated in:
Stem Cell research for copd
spireva
hello !!!

05/10/2012 06:23 PM  Top
jokath
Posts: 36
New Member

I would be very interested.

Previous discussions I participated in:
New to forum but not emphysema
Let's post our Birthdays!

05/10/2012 08:55 PM  Top
ConstIva
Posts: 10
New Member

OK, I will start tomorrow, issue-by-issue.

Up front, I have to apologize if I post or reply in a wrong place, because I am not yet familiar enough with this site.

Hopefully, everything will be just fine.

I am going to tell about my findings on the following issues (I remind that what works - or seem to work - for me, may not necessarily work for others; one has to consult with a pulmonologist):

1. How to breath in general, and how to breath when you have a lungs-collapsing attack;

2. How to sleep;

3. How to walk;

4. How to eat;

5. How to "work out a truce" between diaphragm-lungs, on one side, and the stomach-intestines, on the other side.

6. How, when and what to nebulize;

7. How to possibly diminish problems related to nose secretion;

8. What oxygen appliance to prefer;

9. How to save money on disposable things;

10.How to adjust to inconvenient packing of liquid medicines for nebulazing.

If I recall something useful else, I will add to the above.

Thank you.


05/11/2012 07:04 AM  Top
auntdee
auntdee
 
Posts: 2543
Group Leader

Wow Kimra, i am very interested!!Smile Share it, girlfriend!WinkSmile I love how you have numbered your information. That helps me a lot. I am so sorry to hear you are end stage sweetheart. But it is sooo good to see you again. I am all ears and eyes for you. Thank you, ahead of time, for sharing, Kimra.

Gentle Hug,

Doris

I am not a Doctor. My advice is a product of my own experience and knowledge of it.:)

05/11/2012 09:32 AM  Top
ThomasHope
ThomasHope
 
Posts: 1915
Senior Member

I like your list! Please share anything you like here! We're not big on rules - we're here for each other in all kinds of weather!Grin I'm always looking for real experience information because let's face it - the Doctors don't have to live with this @#$% every day like we do!Whistling

298417 309395579075453 181805898501089 1461493 806422826 n

My advice is purely personal! I am not a medical professional and there is no substitute for getting Medical diagnosis and advice!

Previous discussions I participated in:
Good Day - Bad Day
New to forum but not emphysema
Day 1

05/11/2012 09:37 AM  Top
ConstIva
Posts: 10
New Member

Dear "auntdee,"

I am confused whom you responded to: your phrase "I love how you have numbered your information" may very well be referred to my post with numbered issues; but your addressing to "Kimra" and "girlfriend" have nothing to do with me.

Therefore, I still don't know if anybody is interested in the information I offered to share.


05/11/2012 10:16 AM  Top
auntdee
auntdee
 
Posts: 2543
Group Leader

Oh ConstIva, i am so sorry. I have almost done that a lot. This disease is making me confused at times. I wonder if anyone else gets confused like i do. I have to look, sometimes, 3 times to make sure who i am addressing. And i know how it feels to be addressed by someone else's name.

Yes ConstIva, i would be honored if you shared your tips and experiences with us. And like Thomas said, we are not full of rules, so it is relaxed in here. Thank you, again, ahead of time for sharing.Wink

Hugs,

Doris xoxoxoxox

I am not a Doctor. My advice is a product of my own experience and knowledge of it.:)

05/11/2012 10:18 AM  Top
auntdee
auntdee
 
Posts: 2543
Group Leader

Thomas, you are a major *sweetheart*!!! Thank you for saying that.
I am not a Doctor. My advice is a product of my own experience and knowledge of it.:)

05/11/2012 12:19 PM  Top
ConstIva
Posts: 10
New Member

Well, anyway, let's get started.

Again and again: you don't have to apply my experience to yourself unless you speak to your doctor and get approved, because your condition and age may be quite different.

I am 70, I am 24/7 on oxygen, and last few months am afraid to go outside.

The first topic I promised is this:

1. How to breath in general, and how to breath when you have a lungs-collapsing attack.

Step-by-step, after many tests I ran by myself and had to go through in hospitals, I found that two things help me in different situations:

a) When and if I am in relatively "normal" condition:

In general, I have to accustom myself to an infrequent, but deep breathing.

These are important details:

I have to exhale as much as possible so that I feel how my bronchi and my belly muscles are straining. This helps not only to exhale CO2(carbon dioxide)from lungs, but also to "hitch" mucus from the depth of bronchi and trachea toward the throat.

After I exhale, I make a pause before inhaling.

When I inhale, I try to force the air go to the very depth of my lungs by straining my belly muscles so that they strain the diaphragm. When I succeed, I feel that the air reached to bottom of my lungs. Then the same cycle starts again.

(Sorry, if my terminology is laughable; your doctor will certainly clarify to you my description.)

b) When I have a temporary increased, acute breathing problem that can be overcome personally, without emergency hospitalization:

I usually experience such a moment in two "versions" - 1) caused by mucus clogging (occlusion); 2) caused by anything else - excessive movement, nervousness or a nervous stress, or even something unknown.

When I feel such a mucus-occlusion moment may come soon, but not started yet, I use a pocket inhaler with Albuterol: it may suspend or even completely prevent (at least temporary) the attack.

But if the attack already started, I do this:

a) I stand and lean on a low table or my walker or anything else so that I stay slant (preferably with my head as low as possible), easing the mucus move.

b) I try to breath as superficial and as rare as I possibly can;

c) I slap by my palm and flap by my fist on my breast (chest) as strong as I can stand;

d) If there is somebody - relatives or friends - around, I ask that person to do the same on my back (official home-aids are usually not allowed to do so, mostly because the provider agencies care much more about avoiding any possible responsibilities than about the life-threatening condition of their patient.)

e) Between flapping, I try to cough out the mucus by a very special kind of coughing:

It's like pumping up a bicycle tire with a hand pump: sharp and short movements from the bottom of my lungs.

When eventually the mucus approaches the throat, it's very important to breath through nose so that the mucus isn't pushed back.

Such moments are usually very scary, so I try to force myself not to panic; I even use at these moments to calm myself down, "hypnotizing" myself by repeating in my mind's eye: "it's OK if I die, it's OK if I die..."

But it's very important to keep doing what I just described.

I know I have to be very strong to overcome the moment when the mucus is ALMOST in the throat, but still inside and clogging the airways. "Keep the cool head, don't lose pluckiness," I command myself.

Eventually, the mucus clot jumps out of my mouth, and I get relieved.

Then I try to return to my "normal" breathing that I described earlier.

Please let me know if you want me to continue.

And sorry for my clumsy English.

Post edited by: ConstIva, at: 05/11/2012 12:25 PM

Reply

Health Topics: Sharing experience
Share this discussion with your friends:
Members who viewed this page also read:
<< Start < Prev 1 2 3 Next > End >>

EmphysemaEmphysema ForumsGeneral & SupportIs anybody interested if I share my experience?

Disclaimer: The information provided in MDJunction is not a replacement for medical diagnosis, treatment, or professional medical advice.
In case of EMERGENCY call 911 or 1.800.273.TALK (8255) to the National Suicide Prevention Lifeline. Read more.
Contact Us | Bookmark Us | FAQ | Awareness Ribbons
About Us | Terms & Conditions | Privacy | Spread the Word | MDJ Advocates | Advertise
Copyright (c) 2006-2013 MDJunction.com All Rights Reserved