Sarcoidosis for 31 yrs and still alive.

Posted , 6 users are following.

I was diagnosed with Sarcoid in 1986 by the Chief of Pulmonary at the University of Kentucky.  He saved my life.  I was in for a knee operation and they always do a chest X-ray before surgery.  He just happened to walk by my X-ray the Dr. was looking at and told him to get me in for a CT Scan.  He saw enlarged lymph nodes all over the place.  He ruled out the normal diseases Tuberculosis and others and said I was 1 in a million to have Sarcoidosis.  They did a bronchoscopy and verified it was what he expected.  The put me on prednisone and a slew of other meds..  It got into my eyes and I had 4 detached retinas over a 2 year period.  It was in my lungs, spleen, eyes, skin and eventually in my heart.  I have had lymph nodes removed from my neck twice.  about the size of a ping pong ball.  23 Surgeries in all so far.  A second opinion, the Dr. gave me 5 yrs. to live.  Here I am still kickin'.  I can see pretty well with glasses.  I have cataracts that will be repaired when they get worse.  My Dr. says he can put a pacemaker in when the sarcoid stops my heart from working.  It interferes with the electrical impulses that pump the heart.  I've been on Prednisone, Placquanil, Methotrexate over the last 30 yrs..  I'm on Pred. now.  The worst part of the sarcoid is my lungs.  I am on Oxygen 24/7.  Can't breathe at all.  My biggest scare is suffocating.  33% of my lungs are scarred (honeycombed) as they call it.  Can't have a lung transplant.  The new lung would get sarcoid.  Defeats the purpose.  Don't get freaked out when they tell you about your sarcoid.  Some people defeat the disease.  Others, live with it and it doesn't get worse.  Have faith and deal with what they tell you.  You can be strong and faithful.  I always have a positive attitude and comedy really helps.  My family has stood with me during all of this.  That helps too.  I am not alone on this chapter of my life.  You aren't either.  Take care and good luck!

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  • Posted

    Hi Dave, I am so sorry to hear you have had such a challenging life. I too have many symptoms and some damage, have had sarcoidosis for 21 years. I was diagnosed then anyway but had it really for 37 years. Glad yo know you have good support and good medics. I am not so fortunate in Scotland my GP ignores all my complications, even when I have many symptoms so its a constant battle/no treatment even when part of my lung collapsed. I admire your strength of mind. My daughter is a huge help, it's good to know that someone understands is'nt it. Take care and best wishes Helen

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    • Posted

      I'm sorry about your health.  It sounds like you have alot more organs involved.  Right now my COPD is the worse part of the Sarcoid.  I hope you can breathe good and enjoy every day.  You need to find a specialist that will take care of you.  Surely there is someone in Scotland that can at least pay some needed attention to your needs.  The steroids can subdue alot of the flare ups.  There are alot more of the Sarcoidians out there.  Hopefully there will be more research on this terrible disease.  I have given my body (once I die) to science to be studied by some hospital that will research Sarcoid.  Maybe if we all bequeathed our bodies, they can find a cure.  Sounds morbid but it's all we can do.  You are in my prayers.  Hang tough.  Dave

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  • Posted

    Hi thank you for your message, has your sarcide gone and come or has it always been there? I didn't realise it could affect you for so long, I have good an bad days but I carnt tell if it's my sarcide or fibromyalgia, at the moment I don't know which type of sarcide I've got as I've not been back to see my doctor yet are you on permanent steroids. It's nice to be able to have all this information about sarcide and peoples experiences. All the best x

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    • Posted

      It is always there but never in remission in my case.  The doctors keep it in check with Steroids.  It flares up ever so often and they increase the steroids.  I am checked every 6 months for any increase in organ involvement.  I have CT Scans, MRI's, and bloodwork.  Ace level tells alot when it comes to flare-ups.  It is in my heart so I also have heart echoes done.  Just had all of that this past 3 weeks.  I am getting worse.  First bad report in 2 years.  I'm 64 and had a decent life.  Can't complain.  You will be in my prayers.  Take care,  Dave

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  • Posted

    Hi Dave,

    Thank you for taking the time to write this for all of us out here. Sounds like you've had a long run with sarcoidosis but I sure love your positive attitude. I was diagnosed in 1998 and was sick for a few years prior. Some days I can sure get down but I fight to find that Faith and my strength and like you, I refuse to let this disease win. I have sarc in my lungs, lymph nodes, abdomen, spine, hypothalamus, bone marrow/bone from head to toe, muscles and joints. I have mild pulmonary hypertension, I have steatosis of the liver, and I fight chronic fatigue and severe pain .. all compliments of the sarcoidosis. Because of my hypothalamic sarcoidosis, I have adrenal insufficiency which is causing me tons of interesting days (not) and my local ER staff knows me well now. Also, thanks to this hypothalamic sarc, I now have hypothyroidism. I have several other issues too but you know what, every day is a new day and every day I'm happy to be here!

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  • Posted

    Hi Dave, you are an inspiration to many and I'm pleased you are keeping such a positive attitude. 

    I was diagnosed 2 years ago and am now turning 57years, Like you I was going to let this be a death sentence. I have had it in the Lungs, Lympth Nodes, Heart, and Pherial Nuropathy. I have been treated with Predisone, Phaximal, Methotrexate, then Mycophenalate, till finially I had Infliximab infusions which does appear to have to stopped it in it's tracks. The last Pet Scan showed no active Sarcoidosis. Very pleased but also feel for you and my fellow suffers who have not been as lucky. Stay positive and continue to fight this with everything you have Take Care

    David  

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    • Posted

      David,  thanks for your comment.  I have never had Infliximab infusions brought up to me.  I will ask my Dr. about it and maybe will some luck and faith, it will help me and others out.  So glad for your results!  I have noticed more people being diagnosed with Sarcoidosis in the past few years.  Hopefully more research will be done.  Thanks again,  Dave
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  • Posted

    Jeez, Dave! Clearly you had it far worse than I...

    Hello all, I'm new to this forum & simply wish to share my experience with sarcoid.

    1992 I was diagnosed with it when I was 21. It was in my lungs & almost killed me before they finally diagnosed it!

    Immediately started me on prednisone, which saved my life & made it miserable all at once! After a year & a half I was completely off steroids & symptom free. Seems to be no permanent damage, physically.

    I've had no further problems with it at all. I've no idea how I escaped unscathed!

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