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07/06/2010 12:43 AM

COPD & PAH

Denny1

Good day to y'all. My name is Denny, I live way, way, way down south in South Africa, am staring at 63 in the eye and have Stage 4 Emphysema.

Oh yes, I quit smoking 2 months ago after 40+ yrs at 3 pks/day! Hooboy, what a rough ride its been and if it weren't for the wonderful support I received from the COPD group, I doubt I would have managed as well as I have done.

They're a real great bunch of friends and luv them to bits, but it's time to think outside of the box and learn as much as possible about PAH from your group. The two seem so closely related that it's natural to embrace life with both arms.

Looking forward to hearing from you.

Bye for now & take care!

Denny Silly

Post edited by: Denny1, at: 07/06/2010 06:21 AM

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07/06/2010 10:21 AM
cicero28374
cicero28374  
Posts: 451
Member
I'm an Advocate

Denny, congratulations for no more smoking. What a wonderful present to give your self and all your love ones. Sorry about COPD, but it could be so much worse.

Secondary PAH is definitely loosely associated with COPD but not tied to it. Since you do not yet have Cancer, maybe SPAH will hold off also.

I am 74 and have had emphysema for some 10+ years but it is stage I or early S II.

My idiopathic PAH is devastating. I am on 6-15 lpm of O2 depending whether sitting or trying to do a little, like shop for groceries with an electric buggy. I still believe that I also have something else but they say no.

Smoked for 45+- years from 1-4 packs per day depending upon the year and the job and the length of the day.

So I think it wise to stay attuned for the possibility of SPAH, but not to worry about it and go on with living. Worrying won't prevent it nor cure it, so its of no use.

Let us hear from you from time to time and enjoy your cooler weather.

CiceroCool

Not a medical practitioner just an old Physis educated guy and now most everything I learned is no longer the latest or even true so just uneducated.


07/07/2010 01:01 AM
Denny1

Hi there, Cicero. Many thanks for responding to my post. Hooboy, there's a lot going on, hey?

Hows this for a giggle: I Googled SPAH and got "Society for the Preservation and Advancement of the Harmonica" W00t Oh dear, please tell me, what is SPAH & SII? Not that I'm going to get neurotic about it, but it's good to be informed. That's the problem I have with most doctors - they don't talk straight and I often leave their rooms with a sense that none of my questions have been answered! Angry

Anyway, the word "Idiopathic PAH" certainly deceived my eyes - I swear I saw "pathetic idiot" in the text! Tongue Lordie, sorry about that - must be those subliminal messages popping out of the computer screen again! Please tell me what this term means? I appreciate that you are not at liberty to give medical advice, but I'm sure you could tell me whether common hypertension has a bearing on PAH? On my first visit to the pulmo my BP was 220/100, but had dropped to 160/100 a month later after taking the 50mg tabs he's prescribed. Still too high, hey? I'm also taking Simvastatin & Ecotrin to help curb cholesterol & thick blood. Mmmm, just wondering whether all this has anything to do with the horrendous Charley Horses that literally cripple me! Oh yeah, did I mention that I'm also on O2 (4 lps) for 18 hrs/day?

Heehee, I've got an egg-timer here to limit the time I spend in MDJ and the blasted thing has just buzzed! lol. Guess I'll say cheers for now but would like to chat again later.

Keep yourself safe, well & smiling.

Denny Silly

Post edited by: Denny1, at: 07/07/2010 01:29 AM


07/09/2010 08:30 AM
Denny1

Don't bother to respond - obviously I don't belong. Bye and God be with you all.

Denny


07/24/2010 04:32 PM
bev2000
 
Posts: 4
New Member

i am new to this site. This disease makes you feel alone and that is part of the problem. It is a rare disease and it is hard to find someone to reach out to. I dont know of anyone near me with this and this is the only connection i have to anyone who would remotely know. Give this site a chance. I just started and you know because you have ph that you dont feel like sitting at the computer all day. Heck for that matter doing really anything. I have had this disease for almost 3 years and i have a 10 year old son who is trying to deal with why mom sleeps so much, why mom cant play basketball with me, and who just admitted to me he was ashamed of me. I love him and I dont understand this thing so I cant expect others to. I just hold tight to my beliefs and know GOD will get me through it. Please dont give up!

08/27/2010 04:34 PM
mizzchola16
Posts: 4
New Member

I agree with Bev Denny don't give up hang in there it's scary were all in the same boat and together it's not as frightning knowing others are going through the same thing and that it is possible to support and learn from one another.

08/27/2010 05:05 PM
cicero28374
cicero28374  
Posts: 451
Member
I'm an Advocate

Denny, SPAH Is Secondary Pulmonary Arterial Hypertension. Means there is a reason you have it, not Idiopathic.

I do like your "Pathetic idiot". Sounds better than reality.

The odds are highly in your favor of never having PAH based upon what we know now.

Start exercising, get regular sleep and a good diet. May not prevent anything but with the quit smoking may negate weight gain, helps with depression and makes disease, of any kind, less likely. So do it right and be a hero in your house.

Regards

God have mery on us all

CiceroTongue


09/11/2010 10:10 AM
bev2000
 
Posts: 4
New Member

Don't think that no one here doesn't care or isn't reading your posts. People with this disease don't just sit at the computer all day. I know I don't. I'm too busy sleeping, going to the doctor, or just catching my breath. It takes people like us all day to do things that it takes most people 30 minutes to do. I try to do housework and all I get done between resting is doing dishes and maybe washing a couple loads of laundry. These people on here do care. I'm not responded to a lot but it helps just to write it out. People do read this. People do pray for one another. I have learned this is no death sentence. My doctor told me to think of it like diabetes. There is no cure for diabetes, but you can control it through medication, diet and lifestyle. It's not easy that's for sure, but giving up is your only death sentence not the pulmonary hypertension. There are so many promising drugs out there. Please don't give up. Know we are all wanting to get better, but we all need to stick together and not isolate because there is no knowledge in that. GOD bless.

09/11/2010 01:55 PM
cicero28374
cicero28374  
Posts: 451
Member
I'm an Advocate

Yeah Bev, I S&S more than anything else when working. Sit and Suck O2. I do try to look at every new post as I have them sent to my email. There are not enough that I cannot look at every one and see if I can add anything. See if the local hospital sponsors a Pulmonary Therapy session, exercise with specific breathing objectives and personalized for each, and if so get signed up for that. Its a killer but it will get your body to the best point it can be and keep disease at bay. Also gives you others to talk to that have breathing problems.

Cicero

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