hi, newbie to BLF, looking for info.

[tulips123]

I've been a member of FibroAction since April 2012. In 2011 I was diagnosed with Alveolar Hypoventilation. My understanding so far is - it's quite rare, and even more so as i'm the wrong gender, wrong age. I believe there are different types, but i'm not sure what the differences are. I'm on an oxygen concentrator, 24/7, set to provide 2litres per minute. I know that with out the oxygen exchange being done for me mechanically,

there would be a build up in the blood of the wrong gases which would eventually kill me. Something to do with the brain is unable to prompt the lungs to make inhale/exhale enough times per minute, which results in a build up in the blood of carbon- dioxide.

My lovely Hubbie died 2010.

I'm currently housebound. I Live in a Council bungalow, adapted to help me live as independently as possible. My GP is the very best.

That's it for now. Apparant

Tulip

[bikergrove]

Welcome Tulip i am quite new to this site too but the other members will soon be along to welcome you and give their advise i'm sure, they are a lovely bunch of people .x

[tulips123 in reply to bikergrove]

Thank you, I cant believe it took me this long (diagnosed 2011) to come looking for a website about lungs in this day & age!

Looking forward to 'chat' Tulip xx

[Hidden]

Morning and welcome to this lovely group of people! I'm still quite new here and only post occasionally but I get so much support just from reading the other posts. I can't offer any advice on your health but I send you lots of warm thoughts that you will improve soon. Jan xx

[tulips123 in reply to Hidden]

That's so lovely thank you. Tulip xx

[MrsShimmy]

Welcome to the rare diseases club Tulip!!

I have NSIP which most people haven't heard of either.

Maybe you will find someone on here who has the same as you. In the meantime, hope you find the site interesting and helpful.

Mrs S xx

[tulips123 in reply to MrsShimmy]

I'm sure I will, thank you. Tulip xx

[Hidden]

Hello tulip, I have been with this site since December I have learned and laughed so much. There is always a kind knowledgable person who could help and support you. So take good care and let us know how you are getting on. Lots of love LeeLee. X

[tulips123 in reply to Hidden]

that's so lovely, I can see there is a lot of warmth & kindness, thank you Tulip xx

[cofdrop-UK]

Hi tulips and a very warm welcome to you. Sorry but I really don't know very much at all about your condition but hopefully someone will come along. In the meantime you might want to 'phone the BLF (click red baloon above for number) and speak to one of the specialist nurses - they are very helpful.

So sorry to hear of the loss of your hubby.

love cx

[tulips123 in reply to cofdrop-UK]

will do, thank you Tulip xx

[naresh62]

Hi tulip,welcome to the site i'm fairly new as well . Don't know anything about your condition but as mentioned by the lovely people on here hope someone can help,sorry to hear about your husband . Every one is very caring,comfort hugs and good wishes are always available welcome to the family take care God bless naresh62 x

[tulips123]

Warmth and kindness is coming in loud and clear, and is very much appreciated. Someone said I could call a specialist nurse at BLF and I will do that in a couple of days. I was diagnosed in 2011, but i'm only just beginning to come to terms with it I think. I feel God's blessings in my small but precious family, other things seem to be more complex. Tulip xx

[helingmic]

Tulips123, I want to welcome you to our forum. I don't know anything about it. I suppose you know what the NHS gov. website says

(Reference) nlm.nih.gov/medlineplus/enc...

I hope you have medication for it.

all I can suggest is that you contact the helpline on 03000 030 555. they are the expert and better placed to answer your questions.

I hope you get help from them.

[tulips123 in reply to helingmic]

Thank you, i'm sure I will. Tulip x

[Offcut]

Welcome to the site. I hope you get it sorted out. I would say that the concentrator should be a help to you. fingers crossed for you .

Be well

[tulips123 in reply to Offcut]

Thank you for that. I wish you well too. Tulip

[coughleigh]

welcome Tulip,Iwish you well and am glad you found this site.Hope all goes well for you. mags xx