Hi this is Acker from Luton Bedfordshire, England

[ingemlb]

Someone is on here 24/7 - yep that's probably Alysia - - - - - only joking.

Michelle i think that's the pot calling the Kettle black lol

Hi Acker. so sorry to hear of your long history of tragedies and stress. You must be strong to have survived all that so you will also survive this Wegener's. I am very new here too but already feel like part of a family. I find the members here to be more helpful than all the medical professionals I have managed to accumulate in the last few months. So you are in good company.

[acker]

Hi Alysia,Wow !!! what a responce, I didn't expect so many people to reply. I guess I was feeling a bit low yesterday as it was the day my best friends ashes were being spread on the sea in Devon, and I couldn't afford to go down to the ceremony. He was an ex Sub-mariner, and a keen Sub-aqua diver and it was one of his favourite dives. Sorry it takes so long for me to reply but I'm not very good on PC's and crap at spelling, so it will take ages for me to reply to everyone. You were the first so thank you very much. Acker x x

[acker]

Hi Don, thanks for your reply mate, I've so many and I'm not very good on PC's, so it will take ages for me to answer them all. All the best to you as well. Acker

[tankerB25]

Hi Acker, Man that's a lot of difficult stuff to manage...but I think this site is a big help it's like instant friends! I just signed up a little while ago and have enjoyed exchanging stories with folks who have had to handle difficult situations. keep the faith brother! Help, information and friends are right here!

Steve

[acker]

Hi, thanks for your lovely reply, I've had so many I couldn't believe it !!. Sorry I take a long time to reply, not very good on PC's. In answer to your question about my care, I have to go to clinic at hospital every 6 wks, and I am on a Vasculitis worldwide study, I have to carry a card in case of infection or relapse, it has No's on it so I can ring for a research nurse or renal ward 24/7. So it's great to know they are looking after me. I have always been a positive guy and a great joker type, but I don't have anyone close that I can just sit down with and let it all out, when I feel frustrated I just get on my motorbike and ride for hours, that helps as I have to concentrate so hard on what I'm doing, I can just block things out of my mind, especialy with the standard of peoples driving now. Once again thanks for your reply. Acker

[acker]

Hi Woz, thanks for your reply mate, I've had so many I did'nt believe it. I'm not good on PC's so it's going to take me ages to reply to all. Best wishes to you. Acker

[tankerB25]

Hey Acker, I know exactaly what you are talking about when you say riding is a great way to deal with problems. I used to have a harley and riding was the best theropy I can think of. Had to quit riding because of a work injury and have always missed it. If you can ride even with WG you are lucky keep at it but like you say watch out for the other guy!

Steve

[MikeG-2012]

Sorry it takes so long for me to reply but I'm not very good on PC's and crap at spelling, so it will take ages for me to reply to everyone.

Did you know that Google Chrome browser checks your spelling as you go, even in reply boxes on this forum? That's what saves my typing mistakes! (-8

We don't mind slow and steady Acker, that's what all of us do to get ourselves healthy again after a flare up or being diagnosed, slow and steady paths are the best kind!

Welcome from a fellow rider from across the pond!

[acker]

Hi Cindy, thanks for your lovely reply, my wegs journey started at my local hospital 3am, I was pumping blood out of every known orifice, then transported to a major renal unit at another hospital (luckily for me one of the best in England is not to far from me ) 3 days to stop the bleeding , with loads of transfusions. By this time it had spread from my legs (which were like ballons ) into my large intestine, lungs, throat and kidneys, by this time I'm twice my nornal size. they did biopsys on my intestines and kidneys. I was given about 3 drugs intravenously ( I don't know what they were as I was not fully conscious by then) the next part of my treatment was Plasma exchange ( 2 pipes sewn into my neck and 22 litres of Plasma pumped through my body ) this was repeated 6 times, after which, over the next 3 weeks with more drugs settled me down. I am now on 12 drugs a day, and visit the clinic every 6 weeks, and am on a worldwide Vasculitis study, carrying an infection or relapse card, so if anything goes wrong, I can be in contact with them 24/7. Sorry about long rant. Acker

[acker]

Hi Geoff, thanks for your reply mate. I would love to know more about the pub lunch, as I do enjoy a pint or nine. I'll give you my phone No's so we can get in touch about it, if you like ?
Cheers Acker

I edited your post and sent your numbers to Geoff in a private message. Its generally not a good idea to put private information like that on the public side of the forum. Cheers, VW