BO Update

[Artist1956]

I came to this site about 6 months ago. I was diagnosed with Bronchiolitis Obliterans in 2017. I follow at Temple Lung Institute.

I am just returning to this group after the usual medical adventures. It has been a whirlwind of a year. I can't wait to see the back of 2019. I am exhausted. This is my time to pause and reset. You all were so welcoming and kind when I posted here as a newbie. Thank you.

I am about to have my first meeting and evaluation by the Lung Transplant Team at Temple. Any words of advice would be appreciated so much! I hope to stay up to date with my posts. I also started Oxygen in October. I fought the whole concept. But, now I find it to be very helpful.

I hope that everyone has nice, peaceful, Holidays at Home. I promise that I will not disappear again. Find me anytime! Take care of yourselves.

Maureen

Artist1956

[Oshgosh]

Hi,I know what you mean,your life is taken over by appointments etc.sometimes I panic,cos I think I’ve got my meds wrong.

When oxygen was suggested last year I was horrified.i didn’t need it then.

I think I may need it soon,the last year has helped me come to terms with stuff.

I hope that all goes well for you in the assessment

[Cateran]

Hello Maureen,

You might want to mention in your contact with the centre that you have been in touch with this forum and that there is an UK Strategy for Rare Diseases, of which genomic Medicine Centres are part of this strategy. I guess that you are well aware of this strategy, also of the 100,000 Genome Project. I recall that in your earlier posting you mentioned a link between stem cell research and your "Zebra" condition. It always helps to signal to your interrogators that you are aware of this kind of research and of your own patient motivation in exploring your condition.

I hope that this advice is of some help.

[RoadRunner44]

Welcome back and keep us posted as to how you are doing. Wishing you a much healthier new year for 2020. Chrys