SARCOID & BRONCHIECTASIS

HELLO EVERYONE ...I AM VERY PLEASED THAT THIS DISCUSSION BOARD IS HERE. WELL MY NAME IS ASHLEY AND I AM 24 YEARS OLD. MY MOM IS 45 AND SHE HAS BEEN DIAGNOSED WITH SARCOIDOSIS FOR MORE THAN 10 YEARS AND HAS HAD BRONCHIECTASIS FOR ALMOST 1 YEAR. I AM EMOTIONALLY DRAINED ..I AM HER OLDEST GIRL AND I AM THE WEAKEST. THESE PAST FEW YEARS THIS SICKNESS HAS TOOK A TOLL ON HER HEAVY. HER SKIN, EYES, WEIGHT, AND MOSTLY HER BREATHING. SHE HAS BEEN ON OXYGEN FOR PROBABLY ABOUT 5 YEARS. A COUPLE OF STEPS TO HER IS LIKE ME RUNNING A MILE WITHOUT STOPPING. I HATE SEEING MY MOTHER LIKE THIS. I JUST NEED SOMEONE TO TALK TO WHO IS GOING THROUGH SOMETHING SIMILAR, SO THAT I DON'T FEEL ALONE. I NEVER MET ANYONE WHO HAS EVER HAD THIS DISEASE. I HAVE ALWAYS WONDERED AND STILL WONDER WHY ..WHY MY MOTHER? SHE'S NOT ABLE TO PLAY WITH HER GRANDCHILD THE WAY SHE WANTS, NOR CAN SHE TAKE CONTROL OF THE HOUSEHOLD AS A MOTHER SHOULD, BECAUSE THIS DISEASE IS TAKING OVER HER CAPABILITIES. THE BRONCHIECTASIS HAS MADE IT WORSE ...SHE CARRIES AROUND A SPIT CUP DUE TO THE MUCOUS/PHLEGM. SHE'S NOT ABLE TO HAVE A FULL CONVO WITHOUT HAVING TO SPIT OR ELSE SHE WILL CHOKE. I HAVE DONE SOME RESEARCH AND THERE'S NO CURE..DON'T KNOW THE CAUSES. THIS IS VERY FRUSTRATING. SOMEONE PLEASE TALK TO ME,

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hi there, your a very kind daughter to care so much for your mom. I am 34 and I have sarcoid and bronchiectasis. You wont find many on here with bronchiectasis. I have had bronchiectasis for almost 6 years and sarcoid for 3. I can only offer some advice from what I have been through. My main question is, who is treating your mom? you will read on this discussion site that many of us believe that you should seek a medical 'EXPERT" who treats sarcoid all the time, instead of a doctor who 'sees' sarcoid patients but doesnt know nearly as much. I would make sure first that your mom is getting top notch care at a good facility like the Cleveland Clnic, Mayo, or Natl Jewish Center. These places can treat every organ that is being affected. How severe is her bronchiectasis? The main way to drastically help with bronchiectasis is hypertonic saline via nebulizer. this acts as a cleansing for the mucus that sticks in the bottoms and small places of the lungs. Also, their is a flutter valve devise she can blow in and it helps the mucus to get unstuck so she can cough it up. I totally understand her having to spit a lot. That is very common with bronchiectasis- when I was first diagnosed I was a lot liek that. Bronchiectasis can get a little better and more controlled and stable with the measure I listed above. There is also a vest that does compressions on you. I hope her pulminologist doesnt blow off her bronchiectasis as no big thing. My first dr did and I got a second opinion at the Cleveland Clinic and they are the ones that told me it is serious and that I needed to do these things. As far as the sarcoid, it would help people if you listed what meds she has been on or is on, so we can offer some advise. Again, I cannot stress the best thing you can do for your mom is have her seen by a top notch doctor. Sarcoid is an awful disease, but there are things to improve life. We are all here to help. Melissa

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Hi Ashley,

Both these diseases need respect & if you can arrange to take your Mum either to Denver to NJH or Cincinnati to see the best Sarc doc in my opinion Prof Bob Baughman at UC, he is also a lung specialist. A relative of mine has Bronchiectasis & has been successfully treated with combination anti-biotics. So there is hope for improvement & maybe not needing her spittle cup.

With Sarc it is advisable for patients to stay out of the summer sun, avoid vitD, eat a wholefood diet (no processed foods & no wheat products) drink 6 - 8 glasses of filtered water a day, reduce stress where possible, walk for 20 minutes twice a day & rest when necessary.

Cheers

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Somewhere I read that they were doing studies using Azithromycin and it might have helped some people....Bev

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Will be praying for u and Mom for a fast speedy recovery where she can do some kind of duty.

I have been sick with sarcoid of the lungs since 2004 with stage 4 I never give up I continue to live life, I won't let this monster take over me. Prednisone is what I take plus other meds for my HBP, heart. since my heart beats fast over nothing. I have not heard of
bronchiectasis, I will pray that she can find some comfort and be able to play with the grandkids.


We are here for one another anytime u feel u need to talk this is the right place no matter what time of the day,night.

Yankees

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Ashley, I know what your going through. I am the mother (55) and I have 1 daughter and 1 son. My daughter is there for me no matter what. I too have Sarcoid and suffer frequently with severe Bronchitis. There are good days when I can handle things just fine, but other days I am no good to anyone including myself. It can hit and the most inopportune times. My daughter is there for me all the time. She is single at the moment and is able to do this for me. On the other hand my son has a wife and 2 boys so he really can not spare time. He would if he could... I work full time and have to miss days due to the Bronchitis, but have a boss that is very understanding.

Let me say, you are special to provide care for your mother. She will never forget your love and care and down the road you won't ever regret it.

My mother did not have this disease, but did develop alzhiemers and Diabetes complications which resulted in her loosing both legs. She had to go to a full time care facility as everyone worked and could not afford to have a full time caregiver at home with her. I was one of 6 of her daughters. I was the one who had to go at night to see about her when she was sick, be with her for Dr. Appts, sit with her in the hospital. Seemed my other sibblings were always unavailable. I never ever once felt bad or complained, because this was my mother, the women who gave birth to me and nurtured and took care of me with all the love she had. I had an Aunt (mothers sister) who realized this and said to me, honey I know you are your mothers support and I know you are the one that has to do all of the care. She said when something happens and your mother is gone, you wil not have any regrets because you have been there for her. She said your other siblings will be left feeling sad and guilty because they did not help her when she needed them most. It all came to pass. Mother has been gone for 5 years now and I have not had any regrets about her last days. I was happy she wasnt suffering anymore. I often hear my sibblings say, I wish I had done more, spent more time with her, made her last days easier.

I dont know why, but I just felt like sharing that experience with you.

Hang in there and enjoy the good times you have with your Mother. I hope life gets easier for her.

Best of Luck
cemdupree

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More and more people with Sarcoidosis are developing BRONCHIECTASIS. I was just diagnosed with bronchiectasis within the last month. My doc told me since they caught mine in the early stage, there can be a reversal process. He is the only doc where I live that has bronchiectasis patients. I have had sarcoid since 1994 and I am 52. I am managing pretty well. There is hope for your mom. Keep up the good works!

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I TRULY APPRECIATE ALL OF THE RESPONSES! THIS IS SO WONDERFUL ...I DIDN'T THINK THAT I WILL GET RESPONSES SO QUICKLY! WELL I AM GOING TO GIVE YOU ALL AN UPDATE ...IDK IF I SHOULD WRITE IT AS A POST ...OR A JOURNAL ..MAYBE A POST SO THAT I CAN GET FEED BACK.

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THANK YOU SO MUCH HUN ...YOU ARE WONDERFUL....DO YOU KNOW OF ANY SARCOID SPECIALIST IN GEORGIA?

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I AM TRYING ..AND I WILL WRITE AN UPDATED POST...THANKS FOR THE SUPPORT

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THANKS ....DO YOU RECOMMEND ANY SARCOID SPECIALIST IN GEORGIA?

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YOU ARE SO SWEET AND BLESSED THANKS FOR THE SUPPORT ...I WILL WRITE AN UPDATED POST OF WHATS GOING ON WITH MY MOM NOW..

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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.

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