Hello to all

Good morning I am 52 yrs old and was told I had alpha 1 when I was 22 I had always managed it well until last year I have now been off work since March this year and am really struggling to cope with every thing I thought I would handle it better then I am...... I feel like my specialist was very good whilst he didn't have to do anything but now I am ill I am too much trouble....maybe I am just feeling sorry for my self...sorry just having a rant . :)

16 Replies

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  • Morning ange, lol . X Sonia x p.s this is my good friend who I met at rehab, i might not have benefited health wise after rehab , but met a fantastic friend with the same as me. X Sonia x

  • morning babe thought I'd have a look and see what's going on....lol another bad weekend for me had about enough now . how's you?

  • I'm ok had an ok weekend, better than yours by the sound if it, let me know if u need anything. Xxx

  • H I you have a rant that's what we are here for

  • Thank you makes a change I find everyone seems to shy away from discussing my health....I luckily met a nice young lady at rehab and am able to talk to her once a week at our ladies that lunch on Thursdays LOL xxx Hi Sonia xxx

  • Hi Angie nice to meet you and welcome to the site. It always helps to have a good rant and you are entitled to. Could you find a new consultant? x

  • I Like him and I feel comfortable with him its just that since I have been ill he keeps saying what do I want him to do? and I'm like I don't know your the specialist what's my options ...... he just says he's happy to do what ever I want him to do (What the hell does that mean )

  • welcome Angie - this site is great and very sympathetic and honest!! Hope things improve for you....take care, and know you have somewhere to let off steam :)

  • Morning.

    That's what I always moan about their bedside manner, come to us and moan we don't mind. Hope your feeling better soon.

    Kim xxx

  • Thank you everyone and thank you Sonia for telling me about this site xxx feel a little better knowing there are others like me A BIG THANKYOU

  • Hi Angie, If you feel like a rant - you have a rant! nobody will mind. Never think your too much trouble, as it will always get you down (just think of that Monty Python song and you will be ok) tc x

  • Hi Sonia -Ask your GP to refer you to the Alpha 1 clinic at the Royal Free Hospital in North London. It is the only Alpha Clinic of it's kind and they will give you a thorough and extensive check up. The clinic is run by Dr John Hurst, Dr Bibek Gooptu and Professor David Lomas and has been designed to cover all aspects of antitrypsin deficiency. It is a joint clinic run by hepatologists (liver doctors) and respiratory physicians. Individuals referred to the clinic will have blood tests, chest X-rays and lung function tests as well as liver scans. The clinic will also offer opportunities to take part in research studies aimed at understanding antitrypsin deficiency and developing a cure.

    Referrals can be made to Dr Hurst at:

    The London Alpha-1-Antitrypsin Clinic

    Respiratory Medicine GF673

    Royal Free Hospital

    London

    NW3 2P

    Also are you aware of the facebook groups etc for UK Alpha's - you can get lots of info from fellow Alpha's here - facebook.com/groups/alpha1a...

    Hope you feel better soon - Vanessa Smith (fellow Alpha).

  • Hi thanks Vanessa, as u can see both myself and Angela both suffer with A1ad z, but we are both under different hospitals I have just been referred to the QE birmingham hospital as my consultant sed they to have a specialist alpha clinic but will defo check out your recommendations and thank u, x Sonia xx

  • OOPS! Sorry Sonia - was getting you and Angie mixed up - I hadn't realised you were Alpha too! I do think we are a growing band despite it's 'rarity'. Perhaps they just weren't looking hard enough before? Take care, Van.

  • That's ok , all alphas together. Yes it is rare I was lucky to find ange at my rehab classes and both of us to be z's aswel, it's great having someone that I can meet up with ( we do lunch ) and talk and relate, but I love it on here aswel that's why I told ange to join. It's a great help on the downy days ( and we have lots of them) x Sonia x

  • Lovely useful advice from Vanessa. I just popped on to the thread to wish you a warm welcome too :D Peeg

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