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sas
03-25-2013, 04:26 PM
any groups in or around Dordrecht, the Netherlands

pberggren1
03-25-2013, 06:29 PM
There might be on facebook but this is prob the best international group to the best support and info, and the right info. Please tell us your story. We would like to get to know you.

sas
03-25-2013, 10:06 PM
Ha, my story is pretty long but here goes. Was travelling the world. In Hobart, Tasmania visiting friends for two weeks with the intention of going to Sydney the Dubai and home to the Netherlands, however my lungs gave out and I had blood in my urine, so my friend saved my life by taking me to Calvary hospital, where I was diagnosed and treated for ANCA Vaculitis, after being comatose for two weeks and in ICU for three, all in all 5 weeks in hospital and two in hospice I was allowed to fly home, where I am at the moment being treated by a rather good kidney specialist who informed me my disease is called Wegeners or GPA. I have one quarter of kidney function left and not too sure of the lung volume will find that out at my next visit. I see the specialist every two to three weeks, have my bloods and urine checked at the same time, also swabbing me for MCRA which I picked up in Hobart, this means wearing a mask when I visit the hospital. I have psoriatic arthritis and was on NSAIDS, my rheumatologist at the time did not check my bloods and told me to double up when in pain!!! needless to say I shall not be visiting her again.
I am on Endoxan 50 mg (cyclophosphamide), prednisolone 20 mg, amlodipine 5 mg and pantoprazol 40 mg, as my levels are going the right way the doc and I hope to reduce the pred, stop the Endoxan and get me on to Imuran in a few months time.
Was pretty weak for a while and still a wee bitty wobbly, but on the whole feeling great, as my sons in Holland were told I might not make it, you can understand why I feel great, although I realize I have to live with this and be careful for what time is left to me, the Endoxan has suppressed the arthritic pains and the pred got rid of the psoraisis, so its not all bad. I have done most of my travelling, so will be quite happy to do bits of Europe and the UK. I am a Scot, lived in Holland for over 40 years, been lucky enough to have seen the places I wanted to, USA, NZ and a wee bit of Tasmania, would have loved to see more of Tassie and Australia, but no regrets just enjoying being alive, even in freezing cold Holland.
So there you go, I could go on for ever, I am known as a bit of a writer and story teller, but that has nothing to do with GPA.
Sas

Psyborg
03-25-2013, 11:16 PM
Welcome to the forums. I can't imagine being on vacation when Wegs hit. Hopefully we can provide some information for you :)

Alysia
03-25-2013, 11:58 PM
Hi sas,
although I have WG for years, I found this forum only a month or more before.
This place is amazing. people here are so warm and generous and caring. :thumbup:
I became "connected" to this forum like being connected in IV to a cure....
I live in Israel and I never met any weggie face to face...
being here is being less lonely and lost with WG.
welcome.:smile:

marylz
03-26-2013, 12:22 AM
Welcome sas!
I am relatively new to the forum and have found it and the people very kind, supportive and informative. I live in the US and fortunately(?) was diagnosed quickly when in crisis unlike many on the forum that had GPA without knowing for many years. I look forward to hearing more from you.

Dirty Don
03-26-2013, 01:30 AM
Welcome Sas, such a group you have found! We are all one and the same yet very eclectic about it all...then, there's the WG! LOL! My story is similar to yours sans the 'world' travels...I was just jumping from coast to coast 2 years ago...caught what I thought was a very bad cold...then ended up like you did in the ICU and so on. At 64, with a less acute case of WG than yours perhaps, I do pretty much what I want now...numbers are good, getting in better physical shape (lost 45 lbs in the hospital), and, like you, enjoying the very fact that I'm alive...WG does add some positives, if one survives it of course, in that we all have a healthier respect for living! Wish you the best, hope you find some locals to share with, but this group is not all bad!! LMAO! In fact, they are 'lifesavers' for many on here...just nice to 'be' with people who understand and empathize truly...

sas
03-26-2013, 01:58 AM
Hey there Dirty Don, had a brother called Don, he gone on to higher things, I am also 64 and also thought it was a cold, combined with the smokey atmosphere in Tasmania, forest fires, lost a 12 kilos, but gaining again, food tastes soooo good lately, not a lot of folks here in NL reacting but so far Im encouraged with the other reactions

annekat
03-26-2013, 06:37 AM
Welcome, SAS, and glad to hear your story. Some of us, like me, have had an easier time of it than you, while others have not. But we all have WG and are here for each other. I believe there is a member of the forum, who goes by chrisTIn, who lives in the Netherlands. I hope I'm not wrong. You might look her up on here and see....

mishb
03-26-2013, 09:47 PM
Hi Sas and welcome.

I'm sorry that you didn't get to see more of my lovely Country but I didn't see you mention coming to visit Melbourne :angry: :flapper:

Sounds like you had a fantastic holiday (not). I'm sorry lovely Tassie gave you so much trouble.


I hope things start to come good very quickly, now that you are home

03-28-2013, 01:43 AM
any groups in or around Dordrecht, the Netherlands

Hi Sas! Welcome to the international vasculitis forum.
Your question might be answered by the following organisations.

Vasculitisforum.nl | Ziektevanwegener.nl | Vasculitis.be | Forum • Forumoverzicht (http://www.ziektevanwegener.nl/)
FRIEDRICH WEGENER STICHTING - Welkom (http://www.vasculitis.nl/)


I visited several meetings of patient groups in the Netherlands, and met many 'Weggies'.

Christine.