Alpha 1 Antitrypsin Deficiency......

[Heavo]

Is there anyone on here an Alpha, I'm 36 and have been diagnosed with COPD and Alpha for six years now. My deterioration was made worse by my smoking which i really struggled to stop for sometime, its been over two years since i stopped although I've lapsed a few times during this time. i was referred to Royal Brompton for a double lung transplant but was taken off the waiting list when i went into Rehab for Addiction.

I'm currently in the process of sorting my life out again and am over a year Clean and Sober.... I'm wondering if there are any young people out there like me with any of these illnesses and how they affect your day to day activities.....

I'm on Oxygen must of the day, use nebulisers throughout the day and have Panic Attacks and Anxiety problems.

i use a mobility scooter to get around when I'm out and this is been one of best things that I've done so far, it took me along time to get in one as i was determined to do with out one for a long time.

does anyone else have problems controlling their incontinents when having breathing problems?

[Thrush1]

Positive that you have managed to stop your addictive behavior that was damaging your life and health, you must have had counseling to help you understand you were in self destruct mode replacing one addiction with another will shorten your life span. Getting your mental health in order will make treatment of the medical conditions more affective than when you were abusing your health.

[Hidden]

Hi, i too have alpha 1 but was not diagnosed till i was 47, im now 54 and have ambulatory oxygen to help me get out and about, my 2 sons are 27 and 30 both have alpha 1 but are MZ which means they are carriers, i am Znull, do you know which phenotype you are ? it must be very hard to deal with all this when your still young, most people dont get diagnosed till lungs are damaged probably in 40s /50s. Do you have family/friends to help ? Have you heard of ADAPT which is a mine of useful information, based at Birmingham university hospital, i go annually for tests and advice. I also belong to alpha 1 awareness and alpha 1 support both on line and really friendly,helpful people to know.

[Angels2810 in reply to Hidden]

i took the test when i found out my sister died from alpha 1 antitrypsin deficiency this 2 years ago she was age 52 i was 51 at the time i found out put just been told i have also go COPD i find it hard to climb stairs and other house work things been on sick about a year a half it so upset me that i cannot do all the things i used to doing which i find everyday things hard i have always worked and never been on sick could you tell me if you kept bring up muscus up and i find my legs are in pain all the time when i touch them they hurt if they are bruied no one can help sorry about spelling

[pandaz]

I understand your pain Heavo when diagnosed with chronic severe Asthma I became clinically depressed and underwent ECT (Electro Convulsive Therapy) after being sectioned the drugs only blocked out the reality that my mind was not taking on board the reality that my life would not be the same again and my heavy smoking and drinking had made it all much worse my own guilt was the hardest thing to face up to, like you I am now doing much better than I thought possible and can see a positive future that does not want to end.

[Sophie1999]

I have Alpha 1. I was dx in 6/10 at the age of 40. Started on 02 in 10/11. If I am having a very hard time breathing I come very close to inc. But have not yet. As of last year I was @35% lung function. I go back in Dec for another PFT.

[Hidden]

Hi i have A1AD, IM 41 YRS OLD, i have always had chest/lung problems since birth but i only recently got told i have it, i was told i had COPD FOR 3 YRS, recent CT scan ( 4weeks ago) showed emphasema and blood tests revealed A1AD, after reading about it things make more sense with all my illnesses throught my life. Finding it hard to deal with to be fair, so glad i came on here and found others in similar situations, now i don't feel so lonely and isolated ( not that i would wish this on any1 well maybe sum lol) . Thanks sonia