Hi from Iceland

[hgustafs]

Hi everyone
I live in Iceland 43 years old married with 2 daughters and got diagnosed with wegeners in january 2013, i understand that there are maybe 10 of us in iceland. Allthough looking back i see i have had the sinus-ear-joint problems for at least 2 years prior to weg diagnosis.
i Got hospitalised after i collapsed at work with pneumonia and a partially collapsed lung that was filling with fluid , there(in the hospital) the doctors found all kinds of interresting stuff wrong, i was almost compleately deaf so communication was fun, my ears filled with fluid as well and ofc sinus problems. after an x-ray there was suspected blod clots in the lungs so i was flown to reykjavík.
there they found peritonitis which aparently is why all of my insides were hurting so badly and aparently heading for multiple organ failure, by now i was drugged up on morphine and ketamine and things are kind of a blurry mess. then the chest pains really started and i found out i had pericarditis as well with fluid buildup around the heart. It took days for the steroids to work properly and i have no idea what medication i was put on in that time period but the doctors felt proud of themselves for saving me from organ failure and aparently none of the organs even damaged.
when the biopsy from my lungs and sinuses came with the wegeners diagnosis i was put on a steroid boost i think its called and Cyclophosphamide and within 2 days suddenly i started to hear again and i wondered if i was actually blowing my brains out my nose because those chunks are not normal i tell you ! and all the pain and discomfort slowly went away, well for the most part. I had my first relapse/flare up, red eyes, sinuses getting worse, joints swelling up and chest pains. pneumonia and pericardial effusion, i was rushed to hospital, put on bigger doses of steroids to counter the inflammation, in the night my pulse raced to over 200 and then everything just stopped and the next thing i remember is lying half in a ct scanner with a doctor pushing a tube in between my ribs to drain the fluids around my heart. almost 500 ml of fluids in those first few minutes and 750 ml in total from a space that should hold maybe 2 tablespoons worth of fluid. i got put on MabThera-RituxiMab and 20 mg of pred and just came back home 4 days ago.

From what my doc tells me and the bruising on my chest supports it they had to beat on my chest and give cpr to get the heart going again while the crashcart was getting there

This disease really scares me, and freakes my family out. i will probably not be to active in writing and commenting but allready just from reading and browsing through this forum i feel at least im not alone and that somehow helps.

With thanks and hope from iceland
hgustafs

[Wegetarian]

Greetings hgustfafs!


i understand that there are maybe 10 of us in iceland.

That many Vikings could easily overtake our little forum! It sure is a very "limited edition" disease. There are at least 108 in my country (the participants in our Rheumy associations mailing list, but we have over fifteen times the population here in Finland.

How long did it take for your relapse? Did you feel good until then? I'm kind of surprised you were in such bad shape both times you were taken to the hospital, did you notice any symptoms before then or do you just really hate hospitals?

Welcome to the forums!

[Dirty Don]

Welcome hgustafs...this is a strange place to be some days, but it's the right place for us. Lots of good peeps, info, and caring on here as you know already. Most of us have done some form of what you've gone thru to date. So, you are not alone...there is always someone on here who can help, listen, or advise. WG should and does freak most people out...especially when one reads some of the early dxes for WG, say back in the 70s...looks like we're gonna die! But, that is far from the truth though there may be days...LOL! Hang in there, please do offer your info, views, etc. on here as it does make a difference to someone on here reading for help...

Best to you!

[Alysia]

Hi,
you have been through hard times... but it seems that things are getting better. are they ?
In the beginning this illness is worst... the shock.... being on the "edge" of existence.... the scary unknown.... the helplessness...
in time it can get better. I hope so.
If you are not alone in it, it looks totally different.
since I came to this forum, I am much less frightened and depressed about being a weggie. so at least, you have us with you now. welcome to the forum :hug1:

[annekat]

Welcome to the forum, hgustafs. It sounds like you already recognize the value of this place, and I know it will comfort you to continue to read here whether you post often or not. But we would like to hear how you are doing once in awhile and perhaps you will feel the urge to post more often in the future.

A lot of us had the two years or more of sinus, nose, ear and joint issues prior to diagnosis. Other than that, the stuff you have gone through such as fluid buildup around your heart and other organs does not sound all that familiar, and I'm sorry you have gone through all that you have with this. Every case is different. Some of us have gotten off easier than others. I'm glad your organs were not damaged and that your hearing came back so quickly with treatment. Some of us have permanent hearing loss. Yes, the disease is scary, but there is hope for recovery and keeping it under control, for the most part.

All the best to you, and I'm glad you found us.

[Geoff]

Hi Hgustafs,

Sorry to read about your experience, but I suppose on the flip side you must be glad to be alive!! I guess you must have scared the doctore to bits as they wouldnt have come across too many Weggies and how to treat them.
I guess as you will find out reading thru the forum, we all seem to display a different assemble of syptoms and drug regimes.
I hope you get onto a stable footing real soon and do keep us informed as to your progress.

Funny thing was I was reading the paper over the weekend and there was a fantastic travel offer to fly to Reyjavik for 3 days to see the Northern Lights, are they still showing strong?

[hgustafs]

Greetings hgustfafs!



How long did it take for your relapse? Did you feel good until then? I'm kind of surprised you were in such bad shape both times you were taken to the hospital, did you notice any symptoms before then or do you just really hate hospitals?

Welcome to the forums!

Was diagnosed in the end of january and relapsed on sept 12. so thats about 9 months. prior to my relapse i had been feeling really crappy for 5-6 weeks, allthough never really good after i got diagnosed like i was always running out of gas if that makes any sense? with joint pains, sinuses acting up and stuff like that, but then the pneumonia started again and the chest pains..so it was back in hospital for almost 3 weeks. and yes i really don´t like hospitals but i dont let that stop me from going to the doctor :)

this really is a nice place here

[hgustafs]

Hi Hgustafs,



Funny thing was I was reading the paper over the weekend and there was a fantastic travel offer to fly to Reyjavik for 3 days to see the Northern Lights, are they still showing strong?

on a clear night with a bit of frost just outside reykjavík where the city lights don´t reach they practically light up the sky at night.

[woz]

Hi Hgustafs, good to see that you have found this wonderful site. Like the saying goes, life is like a box of chocolates, you never know what your going to get. Wegs is a bit like that(I would prefer the chocolates), but on this site, its bit like an extended family, everybody here feels your pain, and will offer any information, that may help you fight the demons and improve your sanity, the more you know the better you feel. Just remember you are never alone, you have just made many, many new friends.

We'"ll be friends till we are old and senile.........then we'll be new friends!!!!!!!!

Regards Woz.

[pwc51]

Hi Hgustafs - Welcome. You are in good company here! I spent a time in Icleland about 40 years ago, initially as I was transitting to Greenland with some expeditions I was leading and then to visit the Vatnajokull. I loved it. My daughter spent 3 weeks there this summer as she was volunteering on a farm - she loved it too!
Peter

[gilders]

velkomið!
(I hope that was Icelandic for welcome)
2013 really hasn't been your year has it?
It's great that your organs recovered so well. I was in a similar situation 19 years ago where I was as close to death as possible, but my organs (except hearing) returned, almost, to normal. 19 years on and a few relapses later my kidneys are borderline dialysis. Make sure you keep an eye on symptoms reappearing to lessen any organ damage in the future.

I've found that I've managed to pick up on the signs of a relapse before any blood, urine, results, etc have shown signs of it, but have also had relapses start and I've not picked up on them at an early stage. Therefore, trust yourself, but also keep up with appointments even if you've felt relatively well for a long time.

I can understand why this disease scares you. I do believe that once your Drs know what's causing the health problems (WG) then it's unlikely you'll have to go through anything as bad as what we go through before WG is diagnosed, as treatment will commence much earlier.

[hgustafs]

velkomið!
(I hope that was Icelandic for welcome)
2013 really hasn't been your year has it?
It's great that your organs recovered so well. I was in a similar situation 19 years ago where I was as close to death as possible, but my organs (except hearing) returned, almost, to normal. 19 years on and a few relapses later my kidneys are borderline dialysis. Make sure you keep an eye on symptoms reappearing to lessen any organ damage in the future.

I've found that I've managed to pick up on the signs of a relapse before any blood, urine, results, etc have shown signs of it, but have also had relapses start and I've not picked up on them at an early stage. Therefore, trust yourself, but also keep up with appointments even if you've felt relatively well for a long time.

I can understand why this disease scares you. I do believe that once your Drs know what's causing the health problems (WG) then it's unlikely you'll have to go through anything as bad as what we go through before WG is diagnosed, as treatment will commence much earlier.

That was really close..it´s "Velkominn" :D
no,, 2013 is really not my year!
Well my hearing isn´t quite what it used to be and i have this high pitch noise that will not go away in my right ear.
I call my Drs about everything, especially since i don´t know what specifically to look out for and am probably close to the hypocondriac file on their desk. But they have to file everything and the diagnosis of MY HEALTH is based on information i give them so i tell them everything, from the small red dots i just noticed on my feet to the strange taste i get at the back of my throat a day before some joints act up.

And thank you all for the support i feel here, it really means a lot.

[gilders]

The high pitch noise in your ear is likely to be tinnitus. If you google tinnitus I'm sure you'll find lots of options. Most revolve around creating "white noise" to distract your brain from concentrating on the high pitch ringing noise.
My high pitch ringing was caused due to the deafness in one. My other ear could hear well. This meant that my brain got confused as to why my left ear could hardly hear. Therefore my brain compensated by making it's own noise for the left ear, i.e. the high pitch ringing. I have recently had an hearing aid fitted and it has greatly improved the ringing. Although it hasn't improved my hearing that much, I'm still pleased with the results. The only downside is that the ringing is now even worse if I don't use my hearing aid.
It's taken my Drs 18 years to decide that an hearing aid would be of use. You've nothing to lose by trying one out!

Red spots are a sign of active WG, so you're correct in reporting this, along with anything else that isn't obviously something minor and not associated with WG.

[Debbie C]

Welcome Hgustafs, I haven't said "hi " yet so I thought I would pop in and say so and unfortunately welcome you to the group, I'd rather call it our family because we all become so close on here. You sure have had a rough year of it but I'm glad you are here to tell us about it. Hope you have a good wg dr. and he can get you straighten away soon. Take Care and keep us posted too on anything ! :hug2: