Pulmonary rehab programme

[Lorna]

To anyone who has scleroderma with lung problems, I would strongly recommend this course. I did it in Jan/Feb and have since continued doing the exercises at home. It has definitely improved my breathlessness and stamina as well as wellbeing. 

[HerefordBear]

Just wondering where you found out about the programme.  Did you need a referral from specialist or GP?

[Lorna in reply to HerefordBear]

I was referred by my pulmologist. Others on the course were referred by their GP. It is run by the British Lung Foundation. Here is a link telling you more about it. 

blf.org.uk/support-for-you/...

[marilynmcl]

I was told that my lung damage...3 different types....was irreversible.....would this help me?

[Lorna in reply to marilynmcl]

Hi Marilynmcl. My lung damage is irreversible too. However the course helps how to manage our breathlessness and help improve our quality of life. People on my course were on oxygen and could hardly walk a few yards. All benefitted. The talks and videos were also very beneficial. It was also nice to be with people who all had the problems with lung damage. 

Here is a website link telling you more about the course 

blf.org.uk/support-for-you/...

[marilynmcl in reply to Lorna]

thanks for the information Lorna.....will look into this.

[Nurmohammed]

Hi i have problem with my Brithnlassnas dry mouth sticky and cuffing chest plus bleeding from my mouth. always very difficult if I even little Woking round the house make me difficulty to Brithnlassnas I been complaining this to my GP long time . GP sand me to CDU until to check last 3 weeks ago and chest X-ray and ecu and blood test okay ! But my problem is there ! I also mentioned Dr. At Royal free London about my Brithnlassnas problems but no farther treatment ! So I got Apointmant at Royal free London so I'm going to mention again to doctor so I hope everything goes okay. Thanks 

[Lorna]

Hi Nurmohammed

I am very sorry to hear of all your problems. I really have benefitted from this pulmonary rehab programme. I will always be breathless, but manage it better and find I can do more. The course includes videos, talks and discussions, all helping one to cope more. I would suggest talking to the doctor about it at your next appointment. Good luck. 

[Jeannette2048]

Does anyone know whether there is a similar program in the US? It seems that insurance is paying for less and less and I can no longer afford some of the treatments that have been successful. I have Scleroderma, Raynaud's, Sjogren's and Antiphospilipid Syndrome. 

[Thelma in reply to Jeannette2048]

Hi Jeannette2048: I was in a 27 week program sponsored by NIH (Bethesda, MD) in 2011 and it was very helpful with 10 weeks of educational training in the classroom and 12 weeks in an exercise program. The other weeks were for testing and consultation at NIH. I still refer to my helpful manual they gave. Please discuss with your Pulmonary Specialist. I hope and pray that you will be afforded an awesome opportunity in a Pulmonary Program.

[Lorna]

Hi Jeanette2048

I do hope you find something. Isn't there a lung foundation there?