end stage sarcoidosis

I am a seventy year woman with end stage sarcoidosis. The doctors say that with the bad condition of my lungs I most likely will not survive any virus that attacks me. I am very close to my children and grandchildren and am suffering emotionally that I will not be there to see them grow up. They will be incredibly sad to lose me because I have been such an integral part of their life. Sometimes I feel very alone and overwhelmed. Could I hear from others that are dealing with end of life.

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I am not dealing with end of life but my mother is. She doesn't have sarcoidosis (I do) but has had a hellacious couple of years and has now been told the prognosis is not good. At 83 she hoped to live another ten years. Up until about 2-3 years ago she was still a vital woman, going to water pilates 5 times a week, volunteering in the hospice shop and socializing with friends.

She has found it very difficult to accept that she will never be that woman again and finds it even worse that she is becoming more and more dependent on help from others. I can't be there for her which is tearing me up inside. We've had a rocky relationship over the years but her love for me never wavered and the idea of her being alone at the end . . . .

We Skype at least once a week and we talk about what she is dealing with and about getting her affairs in order. She's telling what her wishes are so I can be sure that they are carried out when the time comes. Whereas until a month or two ago she was very focused on getting better I see acceptance setting in and she seems happier now that she is not fighting so much to survive. She's laughing again and seems more interested in me and her extended family.

I think coming to terms with her mortality and knowing that I am coming to terms with it is bringing her a sense of peace.

Strength be with you in your own journey. Fear not, when the time comes and you have to go the impression you have left behind on those who love you will not quickly fade; it's forever.

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Do you see Dr Dan Culver at the Cleveland Clinic. There are new treatments being trialled for pulmonary fibrosis. Don't get ready to give up just because one doc says he can't help you.


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hang in there,God has the last say,i will pray for you.lol

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Hi dcaroline,

I too am 70 but I am not going to give up and die from this - well at least not just yet.

I don't quite understand how they have concluded you have "end stage sarc."?

Perhaps if you created a members only discussion and described some of your symptoms we could be of some help. As ozealan said above perhaps you need to get a second opinion. Perhaps the Cleveland Clinic could help, unless that is where you have been going, and it is the CC doctors who have told you this.

I would like to help, but I feel a bit in the dark.

DJ - the Calif sarkie getting well

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I'm puzzled by that designation as well.

From what I understand, sarcoidosis really doesn't have an 'end stage' as such. Rather, what seems to happen is that the accumulated lung damage increases the susceptibility to certain bacterial and fungal infections, and these can be life-threatening. (Infections are also going add to the accumulated lung damage.) Treatment with immunosuppressive medications such as corticosteroids will further increase the susceptibility to infections. Under such circumstances an infection could very well be fatal. Bernie Mac, for example died of pneumonia that wasn't treated aggressively enough.

So I'm not convinced that your passing is imminent.

I'm sure that with sufficient support, you will be there for your children and grandchildren for some time yet.

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When my aunt was diagnosed with COPD about a year ago, all thought the end was near. She's on Oxygen full time, but is still here and indeed going strong. She's 85 years old and isn't thinking about leaving. It's always good to plan for that time and put it in a box. but in the interim - keep on living and loving.

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If I had a "like" button, I would push it Mampha!

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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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