bronchiectasis

[falconcottage1]

Hi. just joined this group. I have bronchiectasis and while it is still mild I am noticing some symptoms such as disgusting taste in my mouth and extreme tiredness at times. I have spent time since the diagnosis looking for clinical trials and future research to give me some hope for the future. I looked at stem cells which u can have done privately at the lung institute in USA, however have read some red flags being waved for this treatment as it is said it is just interested in the money. The American lung institute don't recommend this treatment and say stem cell treatment is still 20 years away.

There is a lady who had this treatment but I cant find any recent posts on the website health unlocked regarding her condition.

There is a clinical trial going on now on Clinical trials.gov but as yet there is no data results.

I do wonder about treatments such as removal of damaged bronchial area and /or shunts but I cannot find anything(I am probably unaware of the significance of such treatments as I am not a doctor) but am hoping these will eventually be considered when and if problems which such treatments are overcome.

Anyone with any information regarding new areas of research or information about the treatments discussed would be very welcome.

Many thanks Sue Harris.

[rminnick]

Glad you found our community Sue and hope that someone can help provide you with some more information about your specific case. Welcome

[suramo]

falconcottage1

If your lungs are badly damaged it needs attention. You must get rid of infection too.

Many years back there was a report that a trachea grown in lab was transplanted in a lady. Please find who did that. Perhaps can help you too.

[falconcottage1 in reply to suramo]

I have read about lung structures being grown in the lab, but cant remember where I read it. Structures are called "organelles". Although they don't ffer the hope of a transplant yet, the researchers are excited that they will be able to fully observe the way they work, which may inform some type of therapeutic interventions. If u log onto Bronchiectasis news weekly there are results of many studies. For instance they have recently discovered that the lungs themselves can generate blood cells.

[suramo in reply to falconcottage1]

falconcottage1

How much is the structural and functional loss ?

[cofdrop-UK]

Hi Sue

We have met on BLF.

I have had bronchiectasis all my life, 68 years now. After many years in the wilderness I find it so exciting that there is a recent interest in BE, both from the point of view of research and patient participation.

This link will show you there is newish funding from the EU for clinical trials specifically for CF and specifically for non CF Bronchiectasis.

dundee.ac.uk/news/2015/dund...

EMBARC are reaching their goals.

If you would be interestd in participating then if you are treated by a respiratory consultant with a special interest in CF/ncfbe there will be a site co-ordinator within the unit. If you are not seen within a cf/ncfbe unit then you could ask your consultant to liaise with a site co-ordinator at the nearest cf unit.

One criteria usually would be that you are colonised with pseudomonas a.

With regard to the foul taste in your mouth. That would be one of my symptoms of certain chest infections - HI, pseudo, strep p. I would suggest you put in a sample to know for sure.

You may get more replies if you lock your post. Some folks are reluctant to post if a post is unlocked as it can go anywhere on the web.

love cx