Please register to participate in our discussions with 2 million other members - it's free and quick! Some forums can only be seen by registered members. After you create your account, you'll be able to customize options and access all our 15,000 new posts/day with fewer ads.
I've been having breathing for the last year and a half. My PCP had a breathing test performed plus the normal chest x-rays. Turns out I have a moderate case of Restrictive Lung Disease. Doesn't sound too bad until I googled it. It is very progressive and has a major impact on longevity.
I'm 77, also have CHF, diabetes, etc, so I wasn't planning on living forever. Anybody on here have any insight into this new diagnosis??
It is very progressive and has a major impact on longevity.
I'm 77...
When you're already 77, how big an impact can it have?
Lung problems fall basically into two groups-- Obstructive (emphysema, bronchitis, asthma)- you can get air in but have trouble getting it back out, and restrictive (fibrosis- caused by exposure to dusts/minerals, chemicals or "idiopathic" (Greek for "who knows?"). Your lungs become bound & stiff- difficut to move air in or out. (Rib & muscle problems can have the same effect on air movement.)
Idiopathic pulmonary fibrosis is not rare, but not common. It's also less likely to first appear in an older pt....It's also more likely in general that a pt gets two symptoms from one disease rather than two different diseases....
....with a standing diagnosis of CHF, I'd be more concerned that new SOB represents a deterioration in the cardiac status. An annoying cough, particularly when you lay down at night, may be the first sign of increased fluid in the lung circulation- a subtle, first sign of heart failure.
If it's really a cardiac problem, treatment would deal with that-- more diuretic, more ACE inhibitor, checking for new, silent MI etc.
If it's pulm fibrosis, steroids are usually the first line of treatment. That won't "cure" it, but would hopefully slow it down enough that you'll succumb to old age, not disease.
My cardio guy is the one who suggested the I have the lung tests done. In fact, I just saw him again yesterday, and he believes my heart issues are under control. Will see him again in 4 months, and they will do a followup echo then. I am on a blood thinner, of course.
It seems my case is most likely IPF, although there is still some testing to be done. I worked my way thru college, and for a few years afterwards, working in a large steel castings foundry. Mostly made undercarriage parts for rail cars. It was loud and dirty. Air was full of sand and metal particles, clay dust, corn flour dust, etc. And we did not wear masks. It was the 70s and early 80s.
For now, being treated with Symbacort inhaler + an emergency inhaler. As for the impact, given that I'm 77, the data I see says that I have about a 1 in 5 chance of dying within the coming year, and a 1 in 2 chance of dying within 3 years. I'd say that is something to consider.
my doctor's office administered a 6 Minute Walking Test today. Mixed results. Blood pressure not an issue, and blood oxygen only went from 97% to 91%. But I was only able to over about 300 meters in the 6 minutes.
I'm going back to the doctor in a couple of days to ask for a referral to a pulmonologist. Hopefully he/she can give me some better guidance regarding my life expectancy.
I'm going back to the doctor in a couple of days to ask for a referral to a pulmonologist. Hopefully he/she can give me some better guidance regarding my life expectancy.
And I would hope, quality of life too. Life expectancy isn't everything
OP, what's your BMI? Usually people with CHF and restrictive lung disease have one underlying commonality: obesity.
Managing your diabetes and obesity could ameliorate your restrictive lung disease, add years to your life expectancy, and quality of life years. At 77 you're no spring chicken, but have many more years ahead of you if you take the first step and begin to trim your waistline, which can be done through diet. Ask yourself this everytime you eat, is this bite of food more important than an extra year or two or more of life.
OP, what's your BMI? Usually people with CHF and restrictive lung disease have one underlying commonality: obesity.
Managing your diabetes and obesity could ameliorate your restrictive lung disease, add years to your life expectancy, and quality of life years. At 77 you're no spring chicken, but have many more years ahead of you if you take the first step and begin to trim your waistline, which can be done through diet. Ask yourself this everytime you eat, is this bite of food more important than an extra year or two or more of life.
Good luck.
Thank you for your concern. I am overweight but not obese. And at 77, expecting any major life style/dietary changes is highly unlikely. Loss of appetite is often a part of the physical decline, and weight loss would follow. We'll see.
The average life expectancy for RLD (IPF) is 3-5 years (some say 2-5), and my advanced age reduces those numbers. There is an online GAP test that predicts life expectancy based on Gender/Age/Physiology, and based on that, there's a ~75% likelihood that I have 3 or less years to go. And considering that the current treatments, at best, slow down the progression, I'll eat the cookie.
And I would hope, quality of life too. Life expectancy isn't everything
From what I've read, it isn't pretty. Once I need supplemental oxygen, its pretty much down hill from there, and it was suggested I plan on up to 6 months in Hospice, and will be essentially bedridden.
I watched my first wife die from ALS, and my second wife die from small cell carcinoma. I think they both had it tougher than what I have to deal with. They were both very strong women. God Bless them both.
The average life expectancy for RLD (IPF) is 3-5 years (some say 2-5), and my advanced age reduces those numbers. There is an online GAP test that predicts life expectancy based on Gender/Age/Physiology, and based on that, there's a ~75% likelihood that I have 3 or less years to go. And considering that the current treatments, at best, slow down the progression, I'll eat the cookie.
You seem resigned to it. But I will state this even if you choose not to listen to me, as I want you to live more than 3-5 years OP
Idiopathic is just a fancy way of saying the cause is not known/has many causes. 3-5 years is just an average, it's not set in stone. For those too stubborn to change, yes it may become 3-5 years. For those who have the courage to change, it could be a lot longer. Nothing in life is guaranteed.
Besides dietary changes so you can lose weight (since you said you have diabetes, should you be eating cookies? ), there are certain medications that can be making your RLD worse, like beta-blockers. Check with your doctor, and go through all your medication you're taking, and ask him to justify everyone and ask him if those medications could be making your RLD worse and if there are other options.
Another thing you can do is breathing exercises.
Anyways OP, good luck, and long life.
PS goes without saying. If you're a smoker, now is the time to quit.
You seem resigned to it. But I will state this even if you choose not to listen to me, as I want you to live more than 3-5 years OP
Idiopathic is just a fancy way of saying the cause is not known/has many causes. 3-5 years is just an average, it's not set in stone. For those too stubborn to change, yes it may become 3-5 years. For those who have the courage to change, it could be a lot longer. Nothing in life is guaranteed.
Besides dietary changes so you can lose weight (since you said you have diabetes, should you be eating cookies? ), there are certain medications that can be making your RLD worse, like beta-blockers. Check with your doctor, and go through all your medication you're taking, and ask him to justify everyone and ask him if those medications could be making your RLD worse and if there are other options.
Another thing you can do is breathing exercises.
Anyways OP, good luck, and long life.
PS goes without saying. If you're a smoker, now is the time to quit.
Sorry, but it's not a question of courage. Or of being stubborn. Certain diseases are gonna run their course, and sometimes they can be slowed down a little, sometimes not. And based on the existing science, at my age and the current levels of progression, the numbers are what they are, and a life of purity will not change that. So yes I am resigned to it. Having outlived both my wives and both my children, my own death has no sting.
Thanks for your concern.
Please register to post and access all features of our very popular forum. It is free and quick. Over $68,000 in prizes has already been given out to active posters on our forum. Additional giveaways are planned.
Detailed information about all U.S. cities, counties, and zip codes on our site: City-data.com.
Please register to participate in our discussions with 2 million other members - it's free and quick! Some forums can only be seen by registered members. After you create your account, you'll be able to customize options and access all our 15,000 new posts/day with fewer ads.
), there are certain medications that can be making your RLD worse, like beta-blockers. Check with your doctor, and go through all your medication you're taking, and ask him to justify everyone and ask him if those medications could be making your RLD worse and if there are other options. 