hi. my name is sue and I am 60 years old and live in the uk. I have bronchiectasis and am constantly searching for treatments. A lady in the US has had stem cells. She initially reported that she felt o no improvement and advised against anyone having this procedure. But after 6 months she is reporting a good improvement and her air volume tests are much improved. She has even felt well enough to go on holiday. I want to know whether this treatment is available privately in the EU or whether I would have to travel to the US.
I have also been reading blogs about a new treatment for bronchiectasis which I think is currently used for other types of COPD called lung reduction where flexable coils are inserted to open up and give formness to the bronchial walls. Does anyone know about this?
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falconcottage1
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Hi there. I am not familiar with either of these treatments but they sound really promising, so I hope that someone else on here might have some information for you.
Welcome to our community Sue! I would recommend using CISCRP's service called Search Clinical Trials. All you have to do is fill out a short online form and we can help you find clinical trials. You can mention what area you'd prefer to search for trials in.
My nephew had bronchietasis and was so sick, he developed it after chemo for Ewings sarcoma and was in his late 20's. He did have a stem cell transplant from his sister and went to hell and back with it...but.....after about 6 months he started getting better and stronger. He was even going to go back to work,part time. He looked and felt great. But as the big Guy upstairs had His plans for my nephew. Unfortunately, his house burned and he was burned which put him into a severe reaction from the transplant. He went into the hospital, was intubated for a test and one month later died...still intubated. That was July 24, 2001. The bottom line is.......he had bronchietasis, a stem cell transplant and got profoundly better.We are in California, United States. I ish you well and will pray for you. Love, Mary B.
So sorry to hear that, so young too god bless him. Am in the process of researching whether stem cell transplant could be done in Europe, but if needs be I will travel to the US.
Thank you for your reply. Anything which gives us hope is great. I do get depressed at times.
I am in the Sacramento, California area and would love to share my home if you ever need to come here for treatment. Unfortunately, I have PSP and can no longer drive so can't help you getting around. Hopefully, you will be able to find care closer to your home. Contact me if I can help you in any way. Love, Mary B
Thank you so much what a lovely gesture. I am still awaiting replies from EMBARC which is the lung institute in Europe. I recently had a copd nurse annual appointment. I asked her about stem cells and she said "i work for the NHS and don't know anything about stem cells." You may think as she is a COPD specialist nurse, she would be more in tune with areas of research.
I need a CT scan as it is years since I had one which showed mild Bronchiectasis. I will speak to my GP and hopefully will be able to get a scan and a consultant appointment to discuss treatment options including stem cell treatment.
I wil update you when i see the Consultant, but again I thank you for your kindness and good wishes Mary it means a lot. Sue.
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