Mr. Ben: Good job
Great website, keep up the good work!
Regards,
Monday, 03 October 2011
Guest: Newly Diagnosed
I'm so glad I found this website. Following tests on my liver function because I had similar symptoms to my mother who has PBC, I've received a letter from my consultant telling me that I have SZ type. I'll be seeing him tomorrow for the first time since receiving this news. You're website has armed me with so much information and lots of questions to ask him. thank you.
Kirsty
Sunday, 25 September 2011
Amy: Fiance concerns
Hi, my Fiance was diagnosed with A1AD (PiZZ) on xmas eve last year - he is 36. He has since undergone a series of scans and tests and the results of which have come back with a lung capacity of 55% and significant lung damage and emphysema. He is particulary worried about the possibility of having to have a lung transplant and what this actually means. To make matters worse we are expecting our first child in May and while I know that I am not a carrier - we are extremely worried about the future and what that might entail. I have sent a request to join as a member as I think that talking with other A1AD suffers will help us both come to terms with his diagnosis. Thanks in Advance!
Tuesday, 22 March 2011
alpha: jane: transplant help
Dear Jane,
I have contacted you privately regarding your post.
John M
Alpha-1 UK Support Group Chairman/Webmaster
Thursday, 03 February 2011
Guest: Jane: Transplant help
Hi, I was diagnosed 4 yrs ago with Alpha 1 Pizz. I have now been put on the lung transplant list which is quite scary as I'm only 47 with 2 teenagers to worry about. I thought it was time to join your support group so I can contact anyone in a similar situation.
Wednesday, 02 February 2011
rita watson: miss
i have alpha 1 and cant get a lung transplant because i have 2 many anti hla anti bodies and im on oxygen 24 hours a day
Tuesday, 18 January 2011
alpha: Sue and Liz
Dear Sue and Liz,
I have contacted you both privately regarding your posts.
John M
Alpha-1 UK Support Group Chairman/Webmaster
Saturday, 08 January 2011
Guest: sue
I was diagnosed with Alpha 1(ZZ) about 10 years ago and have been very well luckily up to now. I have had a 3 chest infections since August last year compared to having perhaps 1 a year. Would like to join the group as it may be that things have become a little worse. Would like to contact similarly placed persons.
Friday, 07 January 2011
Liz Partington: joining group
Hi I have just been diagnosed with aat SZ type. I only got tested for my angio odema not because i had a cough. Please help i don't have a cough but the blood results that i have had show that my GGT is raised. I believe that my GP is referring me to a chest specialist. I don't know whether i should be asking or doing anything else.
Thanks
Thursday, 06 January 2011
alpha: dave: newly diagnosed
Hi Dave, It can be a very worrying time for newly diagnosed, we have produced a booklet "A1AD Guide Could Your Asthma or COPD be Hereditary" which hopefully will help you and can be downloaded from our website :
http://www.alpha1.org.uk/publications.html
You can also request to join our support group which now has in excess of 200 members and between us we have a wealth of knowledge and experience to share.
If we can help any further please please contact:-
infoalpha1uk@googlemail.com
John M
Alpha-1 UK Support Group Chairman/Webmaster
Wednesday, 05 January 2011
Dave: Newly diagnosed
Hi
I was recently diagnosed with PiZZ on the 23rd December with a lung capacity of 50% at 35 years old, on the site trying to get information while I wait for consultant appoinments etc, and also concerned as my partner is expecting our first child in a couple of months... Hmm seems like a big learning curve...
Tuesday, 04 January 2011
John Kitchener: New Member Introduction
Hello everyone
My Name is John Kitchener and I am 54. I live in a small village called Gamlingay on the Cambridgeshire / Bedfordshire border with my wife Gill and until this year my two sons, Tim (27) and Robert(22). I have spent the last 37 years as a firefighter in Hertfordshire and Cambridgeshire and during that time had very little sickness (8 days in total). Three and a half years ago I had a severe bout of septicemia (the Doctors told Gill I had a 50/50 chance of surviving the first night I was in Hospital). It turned out I had got Leukemia, a strain called “hairy cell”. After a session of chemo this was brought into remission and has been so ever since.
In August I was back in Hospital with fluid retention and after a few weeks of tests I was told I had cirrhosis of the liver caused by heavy drinking. I did like a drink but only weak lager and not to excess. Again after further times in Hospital they took a liver biopsy and after waiting for over 10 weeks I was diagnosed with Alpha 1 PIMZ. At least this took away the alcoholic label. I have now been referred to the liver specialists at Addinbrookes Hospital in Cambridge.
My interests are narrow boating, I built my own 60’ narrowboat 4 years ago. I also enjoy computing.
Tuesday, 21 December 2010
alpha: Samuel W: Mr
Hi Sam, Thank you for sharing your story. I am Alpha PiZZ from Milton Keynes and have mailed you privately in response to your message.
John M
Alpha-1 UK Support Group Webmaster
Tuesday, 16 November 2010
Samuel W: Mr
Hi, i have been a known sufferer of A1ATD for over a year now.My name's Sam, i am 22 and have a 5 month old daughter with my partner who is not a sufferer. My diagnosis came after treatment for multiple spontaneous pneumathoraces (Collapsed lungs). There was no reason as to why these were occurring and further investigation was not made until i had changed to a more credible GP in the Milton Keynes area.It was first thought that ruptured Bullae (Blisters between the inner and outer Pleural layers of the lungs) were the cause however this was not the case and as yet a solid answer has not been made clear to me.I also suffer from Emphyzema as a result of A1ATD. Evidently i have concerns over my daughters well-being in relation to the deficiency as it has affected me in such a way at quite a young age.As far as dealing with this on a daily basis i have few restrictions, although i do find my self suffering from dispnea after no physical exertion, alot of the time when lying on my left side. Chest pains are very frequent so have become bareable at least. I have tried to educate my self as much as possible about this and find the deficiency, although quite un-nerving, does fascinate me.I am awaiting ongoing analysis in regards to what extent i suffer from this, fingers crossed i am in a better position than some.I felt my story needed sharing as i have not heard of anyone close to me who suffers from the same and maybe some of what i've described is unheard of in relation to it. Our well-wishes are with the familys of people who have lost loved ones or suffer from this deficiency.I would be honored to be an Alpha and wish you all the best for the future.
Tuesday, 16 November 2010
alpha: Membership
The previous two postings dated 10th November have been contacted privately with details on how to join our group.
John M
Alpha-1 UK Support Group Webmaster
Thursday, 11 November 2010
Guest: hi lewis
Hi Lewis
i've only just recently been diagnosed with Alpha 1 and am also PIZZ, so i know how your feeling.
I too would like to join the support group please
Wednesday, 10 November 2010
Sioned Lewis: Diagnosed PiZZ today
Hi All
I have today been diagnosed with Alpha 1 Antitripsyn degiciency - PiZZ. I am 46 years old with a lung capacity of 32%. Totally devasated, but would love the opportunity to meet others with the same/similar diagnosis and would like to joint the alpha-1 uk support group.
I look forward to hearing from you
Wednesday, 10 November 2010
alpha: ciara sz gene
Dear Ciara, A member of the Alpha-1 UK Support Group committee has responded privately regarding this posting.
John M
Alpha-1 UK Support Group Webmaster
Tuesday, 26 October 2010
ciara: sz gene
hi my partner was recently tested for this and found he had the sz gene, he's 37 an has never smoked, the docotrs have said very little just that they will carry out more tests. were can i get more information about treatment and prevention! every site is tellin me different things! help
Tuesday, 26 October 2010
alpha: Vicky Join
Thank you for requesting to join our group, a member of the Alpha-1 UK Support Group committee has responded privately regarding this posting.
John M
Alpha-1 UK Support Group Webmaster
Saturday, 23 October 2010
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