Life expectancy

I was diagnosed with sarcoidosis in 2008, on my lungs & lymph nodes. Since then my breathing & tiredness has gradually got much worse. Have an advanced cataract in one eye, occasionally have a sharp pain in abdomen.

Calmly I'm also interested in the average life expectancy of this degree of sarcoidosis. I realise everyone is different etc, but there are generalities that can be drawn. You can send a personal message if you don't want to alarm people.

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Because this disease can go into levels of remission life expectancies are as unpredictable as well. No two cases are alike nor do they respond the same to treatments. I've not come across life expectancy statistics (and personally, I didn't come with an expiration date, even with heart disease!). Day by day ;-)

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Most people with sarcoidosis live a normal lifespan. Death as a result of sarcoidosis is rare.

Deaths which do occur are usually a result of endstage fibrosis, heart or neurosarcoidosis and these are rare.

I have/had everything you describe and more. Diagnosed in 2001. Around 2008 the granulomas in my lungs began to resolve. I am now in remission with no sign of granulomas or scarring in the lungs or lymphnodes. I have some other issues with my eyes and joints but they are under control at present.

You have every reason to be optimisitic.

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I'm dying faster than most!
I say it often as a joke, so when they see me, they know I've changed.
As for "D" day it is not worth worrying about. It serves no purpose.
Try as best as possible to be optimistic.
I hope you manage your symptoms and continue to enjoy life to its fullest.

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The official death statistic is 5% of people diagnosed with sarcoidosis will die from it. That figure comes from a study from Japan in the late 70's when the death certificates of everyone with sarcoidosis who died in a 2 year period were studied, and 5% of them had "sarcoidosis" written on the death certificate. As opposed to pneumonia, or any of the other organ failures sarc can induce. Hence the still popular magic statement of "the mortality rate is only 5%".

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Pulmonary involvement is responsible for the majority of morbidity and mortality in patients with sarcoidosis. The overall mortality rate is approximately 5%, with patients who present insidiously faring worse than those who present with an acute onset 1,3. Likelihood of resolution depends stage of disease at presentation 3:

•stage I : 60% resolution within 1-2 years
•stage II : 46%
•stage III : 12%
Complications
Complications are of course organ dependent. As pulmonary sarcoidosis is by far the most common manifestation, so are thoracic complications. They include 3:

•pulmonary fibrosis (stage IV)
•pulmonary arterial hypertension and cor pulmonale
•aspergillomas complicated by haemoptysis


http://radiopaedia.org/articles/sarcoidosis-1

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There are so many more things that will kill you before the sark.
You could get run over by a bus tomorrow or have an allergic reaction to strawberries today.
Try to relax and enjoy the ride --- however long it lasts.

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a rarity is not in ones vocabulary when one is part of others statistices. death i never fear.....it's how my death comes may be frightfull......if,to be blunt,i should die while in deep sleep,greatest, during sex,great,during anyother favorite activities,ok. but should i go by ANY of many possible organ shut downs & the death is blamed anywhere but to the rightfull cause (sarcs) just plain SUCKEROOOOS!!! bernie mack & reggie white,was sarcoidosis mentioned as cause of deaths? or lost in the background.by pnuemonia! sarcs attacks a heart somewhere.that heart suddenly stops,this person is announced dead by heart attack....really?!!! NO, it was a sarcs attack!!! every day now i wake to something new,the NEW,is never good. when will it end? not soon enough,either way,remission or death........sjs73 p.s. to inspire or to be supportive,i'll pray for all to have a great day.

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Hi Tskycloud,

I see you just joined so please let me welcome you to the world of sarkies – (some members are not comfortable with this term, but I am and you are free to choose.) You will find lots of support, compassion and education on this site.

You might want to view this 1 hour video of Dr. Iannuzzi giving a lecture about Sarcoidosis, to medical students. I found it to be the most comprehensive explanation of sarc. I will probably answer your question about life expectancy, and many other questions you haven't thought of yet.
http://louisville.edu/medschool/medicine/dom-gr10_11/michael-iannuzzi-lectu re

You might be able to make use of this Doctor locator www.sarcoidosisonlinesites.com has USA and international sarc doctors listed.

I also see that you have posted this to be shared with the public, and you need to know that not all members will respond to a public post. So the next time you post you might want to decide to make it members only. I do some of each, we just need to think about what we expect from other members, and who our audience is.

Please feel free to look at my profile for information on diet control and triggers. Trying a wheat free diet has greatly helped me and some other members.

Now for my answer to your question. I don't think there is an average. All that has been said the members above is true. This is the most unpredictable disease I have ever heard of. There are members who have lived with sarc for 40 years and I intend to be one of them. The operative word about living with the symptoms of sarc it to LIVE.

Please note that the stages of sarc that Truus refers to is only applied to diagnosis of the lungs. These are not progressive stages like in cancer, but the staging is used by medical professionals to discribe how the sarc is showing up in your lungs. It is more like a color label than good to poor grade.

So keep reading here, learn all you can so you can help your doctors make the best decisions for your health and keep living your life to the fullest.

God's speed
DJ - Calif sarkie

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Thank you all very much :)

Zelda, help! I have strawberries tonight!

I don't fear the end, just curious!

T

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There are quite a few older folks around here, that gives me hope. I'm stage four.

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I think it's natural curiousity when you are diagnosed with a disease to want to know if it will shorten your life, but I'm like a few others around here, I'm not going to sit around and see if sarcoidosis could kill me!

Several times a week (I wish it was every day!) I swim in a river with alligators, and I do it with my 9 year old son, and one of them *could* attack us! But I don't think about that when I'm enjoying the 72 degree water, and the natural beauty of the river, the otters, the blue herons, the turtles, and the many fish!

I drive my car up and down a very busy state highway every day, that takes someone's life many times a year, but I don't think about that as I buckle up to go to work, drive my son to school, or run an errand!

When I get in the shower, or plug in the vacuum, I don't think about the statistics of home accidents and how many people die at home each year.

I think it's great to be informed and know the statistics, and I have heard the 5%, and I have neurosarc, so for me, I think that the mortality rate is higher. And, I guess overall higher for those with systemic sarc, those with very poorly functioning lungs, and cardiac involvement, and those who have some organ involvement like kidney, liver, etc.

But, I live in FL where lightning strikes are so common that it's easier to die being hit by lightning than win the lottery! So, I just don't worry about my odds of dying by sarc anymore. I was scared in the beginning, but if my life is going to be short, I'm going to make the most of what I have!

I urge you to do the same. I am so inspired by the friends I made on here, much wiser than me, who struggle with more than I do, and do it better, and speak about it more eloquently. This really informed my early struggle with the "statistics" when I was so sick, and kept my hope alive that I would recover to live a more "normal" life again.

heather

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dwmom2008,and that is what kind of logic? i guess if i go camping in high populations of bear,then frying up bacon & what ever else, and heck i'll leave out the dirty dishes and extra foods until morning,what the heck?

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Hi skycloud,

So I hope we have satisfied your curosity with our helpful answers.

DJ

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Hi Heather,

Your "normal" life is sure different than my "normal" life. I don't swim in rivers - period - let alone one with alligators.

However like you and skycloud I wondered at first what my chances are, and how long I might live. When I got on this site I learned that so many have lived with this disease for 20 to 30 years that I said hey I can do that. So at my age (70) thirty more years will be just fine. And even 10 or 20 more years will make me older than many who die of much worse, or much less.

I thank God every day for the great members on this site who take the title "INSPIRE" to heart and truly do inspire new members to live every day to the fullest and best that they can.

Thank you for your inspiration - adventure Mom.

God's speed
DJ

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DJ,

Stage IV pulmonary fibrosis is representative of fibrosis. It is most definitely worse than the other three stages. The symptoms may be no worse (but usually are) or better than someone else but the prognosis for recovery is not favorable in this situation.

Pulmonary fibrosis is the formation or development of excess fibrous connective tissue (fibrosis) in the lungs. It is also described as "scarring of the lung"

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I guess it sounds like I am swimming right alongside the gators, and nothing could be further from the truth!

The river is home to gators, but, we don't swim at night when they are active, or dusk and dawn, when they feed. We avoid the areas where they nest during the day.

My point was is that all of life is about risk. Even getting in a car can be risky, but we do that daily, most of us, without thinking about it.

heather

ps, I go camping and there's bears here in FL too. But I would never leave the dirty dishes out :)

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DJ,

I didn't try to make it sound that dangerous, it's just that in FL, that's where the gators live and we share the river! Believe me, it's safer than it sounds, I guess! If you swim in the ocean, you're sharing it with sharks, right?

and the swimming is good exercise when it's so hot that walking just seems to wear me out so much more quickly...

heather

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dw,

I'm from Florida and know what you are talking about.

Thing about gators, they are actually quite shy and want to avoid us as much we want to avoid them unless people have been stupid enough to feed 'em so that they associate people with food. Pretty much the same with any wild 'critters' and Florida certainly has its share.

Basically, if you respect and listen to Mother Nature she'll respect you as well.

I also agree that life is a bit of a crap shoot. If you spend all your time worrying about how you might die you will never have time to live.

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Heather,

I like the way you think :) I get so wrapped up in the illness and what I can and can't do, that I forget to just live and enjoy life, gators and all :)

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Hi Heather,

Yes I do understand the generality of swimming with gators or sharks, or what ever. That is why I only swim in pools, and now that I have sarc, only indoor pools.

I don't like the idea of swimming with fish or any other of natures wild critters. Not because I am afraid of them but it just gives me the creeps. I have been like this most of my adult life. I don't like a circus, and not even too fond of zoos. It is just quirky me. I do however love little dogs.

I do get the point and I hope all others do too. That you can't stop living because of there being some chance of dying, or then you are self fulfilling your fears, buy really not living at all.

Life is a crap shoot.

So God please keep us out of the line of fire for as long as possible.

DJ

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Sarcoidosis and the Body
Sarcoidosis is a "multiorgan" disease - meaning it almost always involves more than one organ. It's unpredictable and affects different people in different ways.

You can learn about the ways in which sarcoidosis affects the body in FSR's Sarcoidosis and the Body brochure.

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