Sarcoidosis of the heart

My husband passed away three weeks ago after a 4 yr battle with Sarcoidosis of the heart. He was 55.The disease caused acute heart failure. He was on a concoction of steroids for over a year. He and we (myself and our 15 yr old son) had always assumed he would get better, particularly after the ablation surgery he had 9 wks ago. We are absolutely devastated and still none the wiser as to how he contracted the disease or why he couldn't be cured. He spent much of the last year being treated in Harefield heart hospital.

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cazzyfel...I am so very sorry about the loss of your husband. You can search and search and never find the reason why or how it happened. I lost my husband 25 years ago when he was 39 years old of a brain tumor and to this day, I still ask why and how. My thoughts and prayers are with you and your son as will be with everyone on this site.

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I'm very sorry for your loss. I lost my dad almost 2 years ago to a brain tumor. It still feels like it happened yesterday. I take it day by day. We were with him when he past. It is very hard but you start to cry alittle less and become able to feel life again but it took the better part of a year. My mom is a changed person. I don't think she will ever be the same. Embrace your children don't make them grieve alone. My mom is more distant then ever and it is very hard. Force yourself to do things together sit together. You need to get through this life together.
I was diagnosed 1 year ago with sarcoid. They said it was effecting my heart but only have done an EKG and echo cardiogram. Did they do those test on your husband to find the sarcoid in his heart. I have enlarged lymphnodes in my lungs which they said was the cause for the pressure in my heart to be high. When did they find it in your husband and what was the treatment. I too was told there is no way to pinpoint how we got it. Other then it was enviromental and this is how certain peoples body reacts. I worked on old state buildings in vt for 10 years I will be 30 this year. It really sucks my flare ups are starting to happen again.

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My heart sinks for your loss, Cazzyfel, and for your son. I pray the Lord's comfort and blessing, that each day for are drawn near His love and hugged in His embraces.

Like you and my family , we each go through our own fears, wonders, remorse, and queries. I believe with all that is within me that one day, when my time has passed here on earth, when I get the chance to stand before the Lord, just one look at His face, will be all the answer I will need for what we go through right here and now

Till then , like you, we suffer through, knowing that suffering produces faith, perseverance, God bless,
Bob the former builder

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I am so, sorry for your loss. I will send my prayers up for you and your family.

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I'm not sure how long I've had it but I also have sarcoid of the heart. However I've only just learned that I had it about a year ago via a rush to the emergency room via Ambulance. It explains alot of things to include weekness, being tired most of the time etc.. Cazzyfel please to take care of yourself and your son. I empathize with you with all my heart. Gods speed to you all and have a blessed day..

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Prayers for you and your family.

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Cazzyfel
So sorry for your loss,I am sending you prayers and thoughts to comfort you and your son and family and friends. It may be to early yet but there are many grief groups to help you thru this. Many people here will listen and try to explain how it affects them and maybe give you some answers or understanding, that we do not have all the answers. Please take care of yourself and your son, they usually shut down and say they are okay. Remember all the good time and pictures you share and talk often. Please take care and remember Lots of hugs are coming your way.

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Cazzyfel, I am so sorry for your loss. I also have cardiac sarc with, and my wife is always worried that I might suddenly die. Just know that he is in a better place now. It's what I hope for someday.

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So sorry for you cazzyfel. This disease sucks and there really is no way to predict the how, what, why, where and when of it. It sounds like he was getting treatment and really that is all one can do. I am happy to hear that he had a loving wife and son. *hugs*

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I'm so sorry for your loss Cazzyfel. My thoughts & prayers are with you and your family.

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I am so sorry for your loss. I will keep you & your son in my prayers. This disease is so horrible & it takes so much away from us & from our families.

Please try to take care of yourself, as well as your son. It must be so difficult for you both.

Much love & caring thoughts,

Jan

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You and your family are in my thoughts and prayers.

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I have cardiac sarcoidosis and I am more worried about the impact on my wife and children than my shortened life. My prayers go out to you. No one knows how we contract this disease.

If it is not too late, you may want to contact Dr. Parambil at the Cleveland Clinic to donate your husbands heart for research. Who knows if it could serve to be one more step towards learning more about treatment or even lead to potential cures.

I am donating my heart, lungs and brain to the Cleveland Clinic sarcoidosis center since all of those organs are affected.

May God bless you and comfort you. I believe that true love supercedes death and you can always carry your husbands love in your heart.

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Cazzyfel,
I will be praying for you and know that God the Holy Spirit knows exactly what you need today and He will intercede. Words may come so easy from some but oh, the hurt! May you and yours be comforted. What a stark reminder of reality. I was diagnosed with cardiac sarcoid 1 year ago after going into 3rd degree block. I am 53 now. I want to live my life to the fullest, without regrets (if possible) however long God may deem that to be. I will be praying for you!

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Dear Cazzyfel,
My thoughts and prayers go out to you. I am so sorry for your loss. Like others who have answered, I have cardiac sarc and so have understand how frustrating it is to be without a cause or prediction. If your husband had posted on this site, may we please know his screen name? Praying for your comfort and peace. Sharon

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My heart goes out to you and your son. Thoughts and prayers are with you both. I am so sorry for your husband's passing.

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My condolences to you and your son. Sending prayers and hugs.

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Cazzy im sorry for your loss, you and your family is in my prayers, take care.

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I'm so sorry for your loss, my thoughts and prayers go out to your and your family.

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My heart goes out to you and your son.

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Help and information from FSR

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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