Anyone here diagnosed with antitrypsin defienceny.

[lovableme]

I have c.o.p.d and alpha one antitrypsin defieciency suffering bad at the moment and my ent surgeon said I have chronic sinusintis because of this waiting to go in for op to rectify this.ive other multiple illnesses been really short of breathe recently and cant breathe out of my nose.anyone got the same problem and how do you cope so depressed cry all the time anyone else like this.awful way to be.xx

[mumofmums]

I have copd bit not the thing with your nose and . Yes i do get down cry. Dont wont to move as so tiyerd. Up life is for living. So when down pick yourself up .love from scotland

[Smithy85 in reply to mumofmums]

Oh wow someone so close, I'm in Ireland. What do they do in Scotland for it? I feel like it's just monitoring here.

[Hidden]

Dear Lovableme. I was tested for this deficiency but didn’t have it in the end. You are unlucky to have this and the resulting problems especially if you have looked after your health over the years. I hope you get a date for your op soon but maybe go back to the GP and see if they can help with your physical symptoms and emotional ones too. It is difficult to stay positive with this disease but I’m sure when you get the right treatment you will feel much better. Take care x

[lovableme in reply to Hidden]

Tyvm brightongirl59 its beecause of the antitrypsin defenciency I have c.o.p.d and chronic sinuusintis I do go to mental health as ive multiple illnesses to help me come to terms with all my illnesses as I thought I was losing my mind then I found this sight and its great.tyvmx

[Hidden in reply to lovableme]

Sorry to hear that. It can be so difficult to keep your spirits up when battling illness but like you say, this site is great and helps enormously.

[N3ns]

I have just been diagnosed with alpha 1 having chest X-rays etc to see how bad things are

I have given up dairy

Stay strong

[casey16gatsby]

I have Alpha 1 Antitrypsin Deficiency and severe COPD. I reside in the US and get infusions

on a regular basis. My FEV -1 -- is 22% -- but I'm hanging in there. Also have the inhalers, prednisone etc.

My best wishes to you.

[lovableme in reply to casey16gatsby]

I dont think these infusions are in this country well I dont know anyone that gets these ive just went into severe c.o.p.d good luck to you casey16gatsby would like to here how you are doing.tyvmx

[casey16gatsby in reply to lovableme]

Thanks --I believe you are correct--I don't think they offer them in the UK. They are supposed to help prevent further decline and protect the lungs -- but once you lose

lung capacity it's not coming back in a big way. Do you know what your FEV -1 is?

Avoid smoke --pollution -- and other things as much as possible.

Right now the heat and humidity is really knocking me down.

I do go to Pulmonary Rehab -- and that is important for me. I need to exercise as much

as possible. My goal is to maintain functioning -- as long as possible.

[casey16gatsby in reply to lovableme]

Sorry --I see you indicated you just want to severe -- so I assume your FEV-1 is 30% or less. I know that is not an easy thing --to handle.I caught a virus this past winter and was in the hospital twice. I was really worried --I wasn't going to recover from that. Really sent me into a downward spiral -- but with family support and some medication for depression etc. --I was able to get back on my feet.

All the best to you!

[lovableme]

You stay strong n3ns I had a chest scan where they inject liquid into you and there was no abnormalties just the c.o.p.d which is enough hopefully you will be ok will you let me know how you get on.good luck.xx

[casey16gatsby]

I should have added --Alpha 1 is a hereditary condition. Passed on from generation to generation. I am a ZZ Alpha -- and the only one in my family to get both 'bad' genes. Fortunately my wife is an MM -- the good gene -- so our 3 children are 'carriers'-- MZ's.

Early testing -- certainly can be a of benefit.

All the best!

[mumofmums]

Hi just wee up date i just new treament one hour in salt cave. If you have on near by you try it. Never fell so good