Saturday, March 31, 2012

My story by Alpha One Antitrypsin Deficient sufferer

Today we are happy to publish real story of Alpha One patient from United Kingdom: Kay Anderson. Her story is very emotional and inspirational! Kay describes very beautiful effects of stop smoking. 
Thank you Kay for sharing you real story with us!
We are very grateful to Respiratory Decade Member from Brazil Doctor Marilia Varella for preparing of this post!



I was diagnosed with Alpha One Antitrypsin Deficiency (A1AD) at 45, a year before being diagnosed I got increasingly sick, I was always very slim but I dropped over 30lbs in weight and couldn't breathe on going up inclines or stairs and heavily polluted days, I lived in one of the most industrial city's in the UK at the time Manchester. I was initially to frightened to see the Doctor as I was so convinced I had 'lung cancer' finally I was urged off many friends and family to go find out.

I was seen by the Doctor locally and sent immediately for further tests to the Heart and Lung Specialist at a local Hospital, they ran a succession of tests and then finally asked could they perform a finger prick test to see if I had this incurable genetic condition (not known to me at the time), they assured me the risk was low as this disease was very rare, so not to worry. but needed to rule it out as I was too young to be showing signs of emphysema as this was my medical diagnoses at the current time.  I did the test and left.  One week later the phone call came through from the Hospital that I was a Alpha One Antitrypsin Deficient sufferer, and that I would immediately need to 'stop smoking' I was so relieved to not have lung cancer and really not know about this condition I put the phone down and carried on 'smoking' …big mistake.

Very few Doctors, Specialists and Nurses here in the UK know anything about my condition other than its a genetic one, here lys the problem had I been more informed and indeed explained to in depth I would have ceased smoking there and then! A lot happened and I moved down to Devon where the air is beautiful and pure and very clean, I was lucky and totally changed my life...however the 'smoking continued' and I grew sicker, I was put in touch with Adapt at Birmingham whom I thought would be able to help me, where I saw the Prof Stockley originally and then on further visits different Consultants, they explained the condition but still (perhaps through denial) I refused to listen ...I had been a smoker since the age of 15 and for me to quit was not something I wished to even consider life shortening or not! In 2009 I saw a gentleman Consultant at Adapt who gave me 2 years left to live and my Force Expiratory Volume (FEV) was that low at the time around 22% he wanted to list me there and then for 'transplant' ...however this was something he was not prepared to do as I was still smoking!! I was due to have a CT Scan done that day as at this point I had not had one, I decided after news on that scale to leave and come home to Devon and die!.....

My husband had tried all to stop me smoking and I was so increasingly out of breath I was shuffling along from the bedroom on my hands and knees to the lounge to sit and carry on lighting up (unbelievable) but true, I had never had children and asked that I may get a puppy Xmas 2009 my wish was granted and in came my bichon frise dog Reg, I had him 8 weeks and could just about manage to get down the steps and to the bottom of the avenue and back before I was ready to collapse with exhaustion and breathlessness, something now had to change! I was and needed to be responsible for my little dog whom I adored! Feb 2010 8 weeks after Xmas I quit! I saw hypnoses who I thought did nothing and I went on the electric cigs, which I still suck on to this day! I have been a non - smoker for just over 2 years I don't miss it and I know it has damaged me along with this disease where I will need a lung transplant someday soon, I will be 51 years old this June, however I fought back and walk both my dogs (I got another one ) as I love the breed so much I walk nearly a mile most days with them, my FEV on Dec 2011 was around 41% a huge increase!  People ask me who I achieved this well through hard work and dedication and strength of mind over health matters, I have always been a fighter and a survivor and I fought for my life (or what was left of it) against all odds! I am now on supplementary oxygen for my day to day activities as I de sat very quickly, however not as yet on 24/7 which I have been fortunate with on my diagnosis (however this will come) I am currently only 1 point away from that and clinging on by my finger nails!  .....so my daily regime is set in stone, I medicate, I relax , I pace myself and I walk , I eat healthy food, I drink very rarely and I avoid people and places as we have no protection  germs and infections are all extremely damaging to a Alpha One person and in some cases can be 'lethal' , we have no protection around our lungs so a cold can turn quickly to pneumonia, and of lungs eat themselves away as the neutrophil does not know when to stop eating the bad stuff and carries on eating the good (our lung tissue). This disease has completely ruined and devastated my life in every way you can think of I am like a 85year old women at just 50! I have very bad days and days where I am okay, I struggle with everything, getting dressed, washing myself, and my hair, and I am unable to do housework, or cook through lift and push actions...I have support from my husband who has been a godsend through this, and I am doing my best to hold on to my lung function through living like a women in a (bubble)! I have no life to speak of and I have no or little energy daily this never fluctuates! and as Alpha One is a progressive disease we get worse over time, there are treatments for us one being augmentation therapy ...however we are denied this in the UK this therapy enables the AAT to be replaced weekly by infusion  and helps keep us a healthy as is possible, it is by no means a cure, but can delay the need for transplant for many years in most cases, my only medications daily are those given to a COPD person who is of course a completely different fish to us in so many ways, and of course not really affected only through the damage incurred on the lungs they do make AAT which makes a huge difference! to them and their life expectancy..  however antitrypsin can and for no reason slip further so every 6 month assessment is critical for us, in order they can know when our time comes for listing for a 'transplant' we all require a double lung transplant, and this of course is terrifying!
Please be aware that if you smoke there are so many hidden and of course unknown diseases we carry or can have as a result of the destruction and devastation this can do to our bodies and health!, I know as I sit here writing this given the choice now of cancer or Alpha One I would have taken the C ...the reason is simple it is quick and without any further fear other than death...we are like 'walking corpses' who live and keep living with what we have until we are finally ready to be taken to the transplant room, the outcome of course of this is as individual as Alpha One some make it, some don't...Alpha One is a game of roulette and the dice can fall at any time, we live on a knife edge daily! this is no fun ride ...so think before you light up a cig....you may get lucky, you may not , you may die of cancer or you may find out like me you will become the walking dead for many years and suffer in silence where Alpha people go, with no cure, and no relief...please quit before you do the damage you will never repair or indeed heal. I am dying at just 50! learn from me. ......please!  The worse bit about all this is I was a fun and outgoing party person who lived to live, I moved in many circles as a young women and could have been a international model! I had more chances and lifestyles offered me than most and I have ended up like a old lady, chocking and fighting for breath! not such a pretty sight anymore. 
There are millions of related illnesses through cigarettes and maybe the Governments of all Countries could and should categorize them all...this might be a start! and save a lot of young people into the bargain...

1 comment:

  1. Liver Disease in Alpha-1 Antitrypsin Deficiency

    http://liveralpa1.blogspot.co.uk/

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