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Greg-TX
Member

209 Posts

Posted - Jul 24 2017 :  8:55:04 PM  Show Profile  Reply with Quote
Hey Kids, haven't been on the forum in quite awhile. Just trying to stay out of trouble or I should say, keep my head above water.

Long story short, I'm stage four and have been since I was diagnosed about 5 yrs ago. However, over the last year my sats have dropped dramatically requiring me to be on oxygen 24/7. My SOB and energy level are zilch. I can't do anything without gasping for breath even with oxygen.

I know the typical answer is that everyone is different but what is the typical downward spiral one can expect before one is basically bed bound and at end stage?

My meds are the same and I haven't had any serious infections, so, what is the progression of this disease one can expect?

I read somewhere that once you were diagnosed at stage four, you had a 50% chance of living past five years. Does this disease just progressively keep getting worse or can you stabilize it?

My doctor just tells me not to worry about it, take my meds and don't smoke. Thanks a lot Doc; I haven't had a fag in fifteen years.


Greg-TX
"Alcohol"- because no great story ever started with someone eating a salad!

jmrommes
Contributing Member

1685 Posts

Posted - Jul 25 2017 :  09:22:30 AM  Show Profile  Reply with Quote
One of the most important things we do is exercise. As counter-intuitive as that sounds, it's one of the few things that actually can improve our breathing and make a lot of the things you're having trouble with get better. Is your doc a pulmonologist? If not, dump him for your lung problems and get yourself a good pulmonologist who is current on treatments and meds. If he is, I think I'd still dump him and find one who is current.

COPD is progressive in the sense that everyone loses lung function every year beginning at age 20 or so. Those of us with COPD tend to lose lung function faster than normal, so when we're diagnosed, we have an FEV1 that's some percentage of normal, usually less than 50% of normal. Once you've quit smoking, you stop losing lung function faster than normal, and usually lose it at the same rate as everyone else. The problem is that you started at 50%, so you're always going to be 50% of normal, and as you lose the normal rate of function, yours continues to go down, too.

At 50%, it's not all that noticeable for many people, but one you get below 25%, it gets very noticeable. So it is progressive, and that answers one of your questions.

What I think may have happened to you is one or both of two things. First, you do less because it's uncomfortable to do more, and the less you do the less you can do. That's where exercise comes in and can help you build up your strength and stamina. The second thing that might have happened, and we don't know why, is that a person's lung function just takes a dive. We don't know why or what leads to that or why it happens to some folks and not others: those are still questions we're hoping to get answered in research projects. But I think what you are experiencing is probably a combination of both those things.

A good pulmo will help you by recommending pulmonary rehab to get you started on what will be a life-long exercise habit. Get started!

Exercise not only lets me live, it enables me to have a life.
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PennyPA
Contributing Member

USA
5808 Posts

Posted - Jul 26 2017 :  10:12:24 AM  Show Profile  Reply with Quote
Greg, you stated, "I read somewhere that once you were diagnosed at stage four, you had a 50% chance of living past five years." That is a website you want to stay away from since that statement is a bunch of hooey as many on this board can attest to. I've been at Stage 4 for well over 10 years (except for a couple of months after my LVRS) and so have many others so don't let that statistic get you down. The rest of what I might say (but less eloquently) is basically echoing what Jeanne said. My only question is how old are you and have you been properly tested for LVRS (which, obviously, I swear by for those who meet the criteria).

****************************************************************
Do Not Regret Growing Older. It is a Privilege Denied to Many

You canít change the past but you can ruin the present worrying about the future.

The Bad News: Time flies as you get older.
The Good News: Youíre still the pilot.

Penny's Lung Volume Reduction Surgery

And Our Travel Blog After LVRS




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Greg-TX
Member

209 Posts

Posted - Jul 26 2017 :  11:10:06 AM  Show Profile  Reply with Quote
Hi Penny, thank you and the others for your replies.

I'm 67. I participated in a test study for the "Umbrella Valve", but wasn't selected for the procedure but was included in the observation group. The results of that study haven't been released yet, although the clinical doctor said that it helped some patients and didn't show much results in others.

I did read your memoir on your LVRS procedure. It was very helpful. I need to review it again. At the time, I was hoping I would have to result to that but now I'm not so sure or if I'll even qualify. I do know that the LVRS procedure is not available locally and I would have to travel to Houston or Dallas.

Greg-TX
"Alcohol"- because no great story ever started with someone eating a salad!
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PennyPA
Contributing Member

USA
5808 Posts

Posted - Jul 28 2017 :  10:20:10 AM  Show Profile  Reply with Quote
Greg, I traveled from PA to NC for my surgery (although I COULD have had it done at either Temple or University of PA...both about 2 hours from my "then" home). I would do it again.

****************************************************************
Do Not Regret Growing Older. It is a Privilege Denied to Many

You canít change the past but you can ruin the present worrying about the future.

The Bad News: Time flies as you get older.
The Good News: Youíre still the pilot.

Penny's Lung Volume Reduction Surgery

And Our Travel Blog After LVRS





Edited by - PennyPA on Jul 28 2017 10:22:11 AM
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Greg-TX
Member

209 Posts

Posted - Jul 28 2017 :  10:35:02 AM  Show Profile  Reply with Quote
Penny, are you still off Oxygen?

Greg-TX
"Alcohol"- because no great story ever started with someone eating a salad!
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PennyPA
Contributing Member

USA
5808 Posts

Posted - Aug 06 2017 :  4:08:31 PM  Show Profile  Reply with Quote
Greg, I am still off oxygen on a regular basis but I've found I do better if I wear it at altitudes like when we were driving the mountains in the north. I do still use it at night "just because". No one told me not to; no one told me to. So I do. :-)

****************************************************************
Do Not Regret Growing Older. It is a Privilege Denied to Many

You canít change the past but you can ruin the present worrying about the future.

The Bad News: Time flies as you get older.
The Good News: Youíre still the pilot.

Penny's Lung Volume Reduction Surgery

And Our Travel Blog After LVRS




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deb fla
Member

USA
36 Posts

Posted - Aug 06 2017 :  6:39:12 PM  Show Profile  Reply with Quote
Its only natural to read as many COPD sites at first. Once I was diagnosed with 4th stage, I was all over the internet, trying to find how long I have to live. Now I am end stage, on hospice, I still drive, shop, go to hairdressers,. all in smalll doses, 8 months after that diag, I am still here and have not been in hospital. They added anti anixity to my meds, which helped tremendously.

deborah brantley
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Greg-TX
Member

209 Posts

Posted - Aug 06 2017 :  7:20:21 PM  Show Profile  Reply with Quote
Penny, how did the surgery help you SOB compared to before and after and how long did it take to recoup? Thanks

Greg-TX
"Alcohol"- because no great story ever started with someone eating a salad!
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PennyPA
Contributing Member

USA
5808 Posts

Posted - Aug 08 2017 :  10:24:27 AM  Show Profile  Reply with Quote
Greg, how long did it take me to recoup from the surgery or from being sob? As far as the surgery goes, I was out of the hospital 7 days after the surgery. It was just a normal recuperation from surgery...maybe a couple of months or so before I didn't hurt at all. As far as recouping from being sob, that was the same day!! It got better as the pain abated (pain can cause sob) but I was still "emotionally attached" to my O2 and, even though the doc and nurses didn't want me using it, I still used O2 for a couple of days while in the hospital. I seldom got sob after the surgery (and after I was out of the hospital) except when hiking in the mountains above 3000 feet or driving above 5000 ft. The surgery did what I wanted it to...get rid of the sob so I could do stuff again. I just wish more people would get tested to see if they qualify for LVRS and not take their pulmo's word that they don't. My pulmo wanted me to get a TX because he said my E was pretty well dispersed throughout my lungs but I was too scared to do that...and I knew I'm not a good person when remembering to take meds...so I sent all my stuff to the U of Penn in Philly and asked them to see if I qualified. You can read more about the whole thing...and some other stories...in my LVRS blog below.

****************************************************************
Do Not Regret Growing Older. It is a Privilege Denied to Many

You canít change the past but you can ruin the present worrying about the future.

The Bad News: Time flies as you get older.
The Good News: Youíre still the pilot.

Penny's Lung Volume Reduction Surgery

And Our Travel Blog After LVRS




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faybees
Member

USA
62 Posts

Posted - Aug 08 2017 :  11:01:49 AM  Show Profile  Reply with Quote
Penny, I did not realise that your doc said that your emphysema was too widely dispersed to have the treatment. Mine said the same thing but then said, ask them about it and see what they say. He said that even if they do not offer me anything it would be good to have other eyes on me and my treatment. I have to agree with that although he has got me level and I have been this way for a while now. I am on a good regimen of meds that are working for me, but the sob is a killer.
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Sokcap48
Senior Member

USA
804 Posts

Posted - Aug 08 2017 :  8:51:08 PM  Show Profile  Reply with Quote
Greg- I remember you posting some time back. I too was to dispensed to really be helped by LVRS. By all means look in to that but don't turn I blind eye to lung transplantation. Mine was 9-30-16. Off 02 the next day, walking halls the next day. Discharged in 10 days I had some horrible stomach problems but have always had a weird digestive system, was rough going for about 3 months. NO Prblems at all with lungs or incision at all. Took my first "hike" 1 1/2 miles in the Arizona deseret 75 days after transplant. Sure there are pills you will need to take. For the rest of your life but you are already doing that. I just hiked 5 miles at 8,000 ft elavation last Sat. And no abnormal sob and maintain as high 02 as my wife. Any questions shoot them at me and Penny can walk you thru the LVRS. LVRS changed her life and my transplant has changed mine. I feel like I have been reborn. Food for thought. Hope this helps

Paul-Ut
The Journey Continues.
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PennyPA
Contributing Member

USA
5808 Posts

Posted - Aug 09 2017 :  12:54:14 PM  Show Profile  Reply with Quote
One thing people need to remember when they're considering LVRS or TX is that when you have LVRS, you still have emphysema and the same crappy lungs you started out with, just less of them. With a TX, you don't have emphysema anymore and hopefully you get a good, new pair of lungs. On the other hand, with a TX, there is the concern of rejection (although there are meds to lessen that concern) but with LVRS, there is no rejection concern.

****************************************************************
Do Not Regret Growing Older. It is a Privilege Denied to Many

You canít change the past but you can ruin the present worrying about the future.

The Bad News: Time flies as you get older.
The Good News: Youíre still the pilot.

Penny's Lung Volume Reduction Surgery

And Our Travel Blog After LVRS





Edited by - PennyPA on Aug 09 2017 12:54:55 PM
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faybees
Member

USA
62 Posts

Posted - Aug 10 2017 :  11:48:30 AM  Show Profile  Reply with Quote
It is the whole rejection thing that terrifies me. If they get rejected I guess it is good night...........right? With my old crappy lungs I can go along until they pretty much give up and that could be years yet. The thought of LVRS appeals to me I must say. I guess I just need to ask some questions if I ever get up to penn and have the chance to ask.
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PennyPA
Contributing Member

USA
5808 Posts

Posted - Aug 10 2017 :  1:21:07 PM  Show Profile  Reply with Quote
But they (the docs) can prescribe meds that usually handle the rejection thing. In fact, I think that's becoming more and more rare.

****************************************************************
Do Not Regret Growing Older. It is a Privilege Denied to Many

You canít change the past but you can ruin the present worrying about the future.

The Bad News: Time flies as you get older.
The Good News: Youíre still the pilot.

Penny's Lung Volume Reduction Surgery

And Our Travel Blog After LVRS




Go to Top of Page

jmrommes
Contributing Member

1685 Posts

Posted - Aug 10 2017 :  2:22:21 PM  Show Profile  Reply with Quote
Most people who have TXs have issues with rejection that can usually be resolved; sometimes not, but usually the rejection can be halted and the situation improved. Go talk with people who actually treat folks who've had TXs and talk with the people who've had the TXs from the center you're considering. Until you understand the process and the expectations and hear other people's experiences, you're just getting what we think, and not hearing what's directly from the source. At least go talk with them. You aren't committing to anything if you talk with them, but if you don't talk with them you won't ever know for sure what's what.

Exercise not only lets me live, it enables me to have a life.
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Sokcap48
Senior Member

USA
804 Posts

Posted - Aug 10 2017 :  6:39:26 PM  Show Profile  Reply with Quote
Faybees- most centers do a "mini evaluation" they want their own PFT, 6MWT,ABG,health history from you. Make a list of any ?'s you have--at the end of the interview they will ask you if you have any questions and they will sit and answer any and all you have--they want you to be as knowledgeable about transplantation as possible--it makes you a better patient. You are on immunosuppressant drugs from minutes before your transplant on. Yes it is possible to have a rejection but the drugs are getting better and better. If caught fast enough they can stop it before damage is done. And no it is not necessarily "curtains" I personally know a lady that rejected after 3 years and they were able to control her rejection to a point (but there was lung damage) until they found another set of lungs. She is 2 years out and doing great. I spoke with her in March. And to another point if I died tomorrow I would still be forever grateful to my donor for giving me this last year withOUT- COPD or the need for 02. Did so well last time hiking we are going to the South Rim again this weekend for some more hiking and camping. The benefits out weight all of the risks in my opinion.

Paul-Ut
The Journey Continues.
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deb fla
Member

USA
36 Posts

Posted - Aug 11 2017 :  08:51:39 AM  Show Profile  Reply with Quote
quote:
Originally posted by PennyPA

Greg, you stated, "I read somewhere that once you were diagnosed at stage four, you had a 50% chance of living past five years." That is a website you want to stay away from since that statement is a bunch of hooey as many on this board can attest to. I've been at Stage 4 for well over 10 years (except for a couple of months after my LVRS) and so have many others so don't let that statistic get you down. The rest of what I might say (but less eloquently) is basically echoing what Jeanne said. My only question is how old are you and have you been properly tested for LVRS (which, obviously, I swear by for those who meet the criteria).


deborah brantley
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deb fla
Member

USA
36 Posts

Posted - Aug 11 2017 :  08:52:59 AM  Show Profile  Reply with Quote
Penny, LVR's meeting criteria?

deborah brantley
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PennyPA
Contributing Member

USA
5808 Posts

Posted - Aug 11 2017 :  3:04:18 PM  Show Profile  Reply with Quote
Deborah, primarily upper lobe damage although mine was also rather diffused as shown by the results of my VQ test. My upper right, middle and lower lobes were working at 4.90%, 23.60% and 35.90% which, when looking at my left lung, (3.20%, 10.80% and 21.60%) was pretty good! I think, as Paul had stressed, attitude had a lot to do with it. Any co-morbidities would also be taken into account.

****************************************************************
Do Not Regret Growing Older. It is a Privilege Denied to Many

You canít change the past but you can ruin the present worrying about the future.

The Bad News: Time flies as you get older.
The Good News: Youíre still the pilot.

Penny's Lung Volume Reduction Surgery

And Our Travel Blog After LVRS




Go to Top of Page

Greg-TX
Member

209 Posts

Posted - Aug 11 2017 :  5:13:43 PM  Show Profile  Reply with Quote
I believe someone asked how old I am. I'm 67. Paul and Penny, how old were you when you had your surgeries?

Greg-TX
"Alcohol"- because no great story ever started with someone eating a salad!
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PennyPA
Contributing Member

USA
5808 Posts

Posted - Aug 11 2017 :  8:48:09 PM  Show Profile  Reply with Quote
I was 67.

****************************************************************
Do Not Regret Growing Older. It is a Privilege Denied to Many

You canít change the past but you can ruin the present worrying about the future.

The Bad News: Time flies as you get older.
The Good News: Youíre still the pilot.

Penny's Lung Volume Reduction Surgery

And Our Travel Blog After LVRS




Go to Top of Page

deb fla
Member

USA
36 Posts

Posted - Aug 12 2017 :  12:24:18 AM  Show Profile  Reply with Quote
I am 65 and have end stage COPD, the Dr said it was to late for LVRS.

deborah brantley
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PennyPA
Contributing Member

USA
5808 Posts

Posted - Aug 12 2017 :  09:20:27 AM  Show Profile  Reply with Quote
I was at 21% FEV1 when I had my LVRS. Maybe he means it's too late for LVRS and the copd is evenly spaced throughout your lungs? Ask him why he said that.

****************************************************************
Do Not Regret Growing Older. It is a Privilege Denied to Many

You canít change the past but you can ruin the present worrying about the future.

The Bad News: Time flies as you get older.
The Good News: Youíre still the pilot.

Penny's Lung Volume Reduction Surgery

And Our Travel Blog After LVRS




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