Any sarcoidosis sufferers out there?

[JanJ]

Hi, i'm Jan 62yrs. Living in North Wales on Llyn Peninsular.  I have chronic progressive pulmonary fibrosis / sarcoidosis and wonder if there is anyone else out there will same condition as it's quite rare apparently.  I am also looking to buy an InogenoneG3 portable concentrator if anyone has one for sale?

thanks Jan

[sassy59]

Hi jan, love the photo.

I am carer for hubby Pete who was diagnosed with sarcoidosis in 1991and COPD in 2010. He goes to the Royal Brompton once or twice a year and Southampton Hospital for a back problem,

Nice to meet you and somebody may have a portable concentrator for sale.

Take care Xxx 

[JanJ in reply to sassy59]

Hi Sassy59, 

Thanks for contacting me and your comments on the photo which is the only one I had on my pc and was taken about 2 years ago.  I don't look quite so perky recently after having another bout of pneumonia but I am being optimistic for some help to stop the progression.  I am waiting to be referred to sarcoidosis specialist in Liverpool. 

 I spoke to someone recently from SILA sarcoidosis charity who is setting up some more locations around the country- early days at the moment, he mentioned the Royal Brompton hospital in London and says that I can ask to be referred there as they are the leading specialists, how has your husband found the help there?

Jan

[sassy59 in reply to JanJ]

Hi Jan, Pete has done well at the Brompton but it seems they can do no more for his lung problems and he now only sees a cardio specialist. I told him to speak about that in June when he has his next appointment as it doesn't seem right to me.

Take care and hope your treatment goes well. xxx

[Mocarey]

Hi Jan, I was diagnosed with sarcoidosis in 1970 and thereafter pulmonary fibrosis. As the years progressed I developed bronchiectasis and then about ten years ago aspergillus.

I live in Glasgow and am 68 years old. I have portable concentrators supplied by my health board. M

[JanJ in reply to Mocarey]

Hi M

Thanks for your reply, sorry to hear of all the additional illnesses? not sure if this is normal to have the longer you go on.  I thought I had sarcoidosis and that was it!  

The portable concentrators that are supplied are not allowed out of the country and I want one for taking abroad with me this year.  I'm going to go on holidays if I can for as long as I can but definitely feeling less able as time goes on.

Jan

[Tee1008]

Hello Jan and nice to meet you.

We have a respiratory equipment for sale site under 'related posts' to the right of this reply!  You may find something there.

Lovely photo, btw, and hopefully you will find other members with the same condition to answer any questions.

Tee x

[JanJ in reply to Tee1008]

Hello Tee

Thanks for your reply.  I will have a look for equipment on the site.

Jan x