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sarcoidwife 
I have been on here for several weeks now and am very frustrated that only one person has responed to my posts. I was hoping to find some support on here from other Sarcoid suffers but I guess this just may not be the site for me to be on. I will tough it out a little longer and then I may have to look for another support group.
My husband is getting worse day by day and there is no one to talk to that my be able to give some support or resources for help.
Well enough for now maybe when I come back there may be someone out there somewhere that is in the same boat I am in right now.
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well my new husband has been diagnosed. we are in the middle of many doc apointments. i feel lost no one understands and all i want is to be there for him. he goes thru alot of emotions about it. he is soo worried he has to quit his job and he is our only means of support. i joined to find help for myself so i dont loose my mind. my youngest child has emotional probs that takes so much of our lives up now this. he was diagnosed almost 2 years ago and we just found out that he only has 65% usage left in his lungs. they just checked his heart yesterday.. i'm very scared
deamartin
deamartin, nice to meet you. I know what you are going through. My husband had to retire from the Post Office because of Sarcoid. He has spent the last 2 days in bed but today is doing a little better. When will you get the results back from the heart test? I am thinking they were doing an ultrasound of the heart? My husband had that and then he also had where they put a camera down his throat to look at his heart a couple of years ago. How long has he had this? What medicine is he on and where do you live? I am here if you want to talk or vent maybe we can help each other.
sarcoidwife
my husband had his echo on his heart monday. not sure when we will get results. he went yesterday for over 1100 ct scan pics. we should know bout those tomorrow. he found out bout sarcoid bout 2 years ago after he got a infection in his leg and they did a bronchoscopy and took samples of his lungs. since he heard how bad his lungs are he has been very emotional. we just got married august 31 but we have been together since right before he was diagnosed. they haven't put him on any meds yet waiting for all the test results before they do anything else. we just went to a new doc. we live in missouri now but my husband grew up in kansas. they said his lungs are worse than a 75 yr old and he just turned 42. he is scared of not working any more since i lost my job. its just alot of emotions and alot of stress. mostly from the unknown that is the scaryiest. between us we have 6 kids and no clear future at this point. i apreciate all the help we can get and that someone knows what we feel makes it better. i am here for you as well. hope for all the good days for both you and your husband..
deamartin
Hello, sorry have not written back sooner. Husband having a bad week, doctors on Thrusday and they put him back on methodone and took him off fentenal. Have you heard anything back yet? I know how you feel about no clear future. We had a goal in life when we were married 4 years ago but 6 months after we were married he got so sick with this stupid illness and since then our dreams and plans have gone away. Now we live for the day and the moment. That is all I can plan for because I do not know what tomorrow will bring. I know methoroxate and predinsone worked for my husband lung issues. He is going back to the lung doc this coming Friday to see how he is doing. At one point he was on oxygen at night while sleeping because his blood oxygen levels would go so low. I am anxious to see what the test results were for your husband.
sarcoidwife
yeah we have had a very rough week too. the doc said that the sarcoid is very promonnant in his lungs but until they get the old images of his chest from where we used to live they really cant tell us how much it has gotten worse.they say his blood tests looked good. they have never said anything yet bout putting him on any meds.so guess its just a longer waiting game. they finally diagnosed my 6yr old with severe anxiety disorder and she has had a bad last 2 days.i actually had to go pick her up from school today. my birthday is wednesday but my uncle died and we are gonna bury him that day. so this week i am very depressed. my husband and i have been a lil short with each other. but i know neither of us mean it. i love him soo and it's hard to look at the future that might lay ahead. we are gonna try and go see his family in nebraska next week. his mom has ahlzheimers and his brother is in the air force we dont get to see them all that much. i know he is soo worried he may have to quit the only job he has ever done. but we are working together seems like that is the only way. i'm very sorry to hear bout your husband and maybe the doc will give you some decent news. i will pray for you and hope that all goes well. i'm glad to have met you so i know where we may end up.
deamartin