New member, from Norway

[Elena]

My name is Elena and I’m 17 years old. I live in Norway and was diagnosed with WG in April 09.

My symptoms started in January 09, with me having a constant headache. And since I never had any headaches before that I went to the doctor after only a week or so. The doctors couldn’t figure out what was wrong even after lots of tests. After a while I started having joint aches, it got so bad I almost couldn’t walk down the stairs. In addition half my tongue was swollen and I started having nosebleeds regularly. In the Easter holidays half my hand started to get numb and hurt, so I finally got to go to Norway’s top hospital, where they figured me out almost instantly. They only had to do a kidney biopsy before they could start treating. Before they could start treating me, a couple of my toes went blue and I developed blood blisters on my feet. They hurt a lot so I couldn’t even keep my foot down for more than a couple of seconds at a time.

I was so relieved when I got my diagnosis, as it was terrible going for months without knowing what was wrong and how sick I was going to get. As soon as they started treating me with Solu-Medrol and Sendoxan (Cyclophosphamide) I got a lot better. I got about 11 doses of this over a period of 6 months. In addition I used Prednisone, Bactrim and some sort of blood pressure medicin. I started using Methotrexate, but I got Sinusitis and it wouldn’t go away for months. They started me on Imuran instead of Methotrexate, but that didn’t work as well as they’d like. Therefore I got Rituximab instead. I also had a sinus surgery and I haven’t had any trouble from my sinuses since. I’ve gotten rituximab twice now, two doses in February and two in August.

When I had my sinusitis I also started coughing. It didn’t go away and around April this year it started getting harder to breathe. I had a bronchoscopy and they told me I had Tracheal Stenosis. They didn’t want to do anything about it yet, but do another broncoscopy later. Over the summer it got much worse and now almost can’t get dressed, much less walk up the stairs without breathing really hard. On my last bronchoscopy they realized I need surgery. My surgery is scheduled on Monday, so I am really excited. I can’t wait to breathe properly again! Seems like I’ve been this way forever and it sucks.

Do anyone have any experience when it comes to Tracheal Stenosis and surgery? I would really like to know how I can expect to feel right after surgery and how long it takes to recuperate.

Well, I hadn’t planned on writing this much, but once I started it just wouldn’t stop. I now realize I’ve been pretty lucky in comparison to a lot of others in here, but it seemed pretty bad to me, at the time anyways.
I think this seems like a great forum, as there aren’t a lot of people with WG in Norway.

[Geoff]

Hi Elena,
Wow you have been in the wars! I can relate to many of your syptoms but not the Tracheal Stenosis. You will no doubt find reference to it within this excellent forum and I am sure that other members will respond to your post with their own personal experiences on that topic. I can however relate to your 'relief' at getting a diagnosis. The ongoing worry about trying to identify the illness dragged me down considerably.
WIshing you all the very best for Monday. Keep us posted.

[elephant]

Hi Elena, I can also relate to your symptoms except the Tracheal stenosis. You should be able to breath well after surgery. Let us know how you are doing after surgery.

[Jack]

Welcome to the group Elena. You will find a lot of people on the forum with experiences similar to yours who will help with advice. In particular I know there are several members with Tracheal Stenosis who have also had surgery. I don't have first hand experience of this myself, so I'll let them tell you all about it.

In the meantime, ask any questions you can think of or just ramble on about life in general, we are all here to listen and help when we can.

[JanW]

Hi Elena -- I have subglottic stenosis that also involved the first two rings of my trachea. There are several different types of surgery (as I understand it), that doctors do for this condition, from simply balloon dilation, to laser surgeries (not generally done in the US), to radial incisions into the scar tissue to have it spring wide open (what I had done). I definitely wrote about it extensively at the time in the 'subglottic stenosis -- what's the surgery like' thread, which you can find under the tracheal stenosis heading. It seems someone more common that WGs have the stenosis right around the true vocal chords (subglottis) rather than the trachea (but that happens too).

There was no pain with the surgery and it was over very quickly (30 minutes top). I spent a day in the hospital on warm air mask and that was it. Went home with no drugs. They swab the area with steroids for swelling, antibiotics to retard against infection and myomicin (immunosuppressant) as a way to (hopefully) retard the WG. Many people need to surgery again after a few months (and a few more times after that) but I've been lucky and mine is still open. I had it done in March. Please let me know if you have any other questions.

Do you have a saddle nose also. Very common that those two run together. (I have one).

[Elena]

Thanks. Well, I'm actually having a period with not much to complain about right now, except for the breathing part. I'm going to school everyday, except when I have to go to the hospital for check-ups and stuff. So it's a real improvement from last year. When I first got sick I was home from school a lot, but since I had great teachers and I didn't have that much trouble keeping up with the rest of my class, I was real lucky and didn't have to redo the year.

My English isn't always perfect, as I'm Norwegian, but I try as best I can. I don't mind if anyone corrects my writing, as I'd love to get better at it!

It's really nice hearing about others that have experienced similar things as me, 'cause it can be hard at times when none of my friend really gets what I'm going through. Do you know if there is any members here around my age?

[Elena]

I think I'm having a balloon dilation surgery. Haven't really gotten that much info about the surgery yet, but I'm guessing I'll get to know more when I go in for check-ups on friday. The doctors told me they were relieved that my stenosis is in the trachea, not the subglottis as that could get worse much quicker.

Thanks for giving me some more info about surgery : ) Doesn't sound bad and I'm just looking forward to it now.

I don't have a saddle nose. When I first got WG I read a little about that and I got a bit worried. Especially when I got sinusitis. But luckily I have avoided that.

[freakyschizogirl]

Welcome Elena..you're English is excellent.

I'm new(ish) here too. Gosh you're so young. Poor you. Sounds like you've had a rough year. I can sympathise with the sinusitis. I've had it several times. I long for the day i can breathe properly through my nose!!

I'm 25 and thought i was young getting a diagnosis. But you've beaten me.

Good luck with your surgery.

[Elena]

Thank you!

Yeah , I would have prefered getting sick a few years later as I would love studying and travelling abroad. All of which will be much harder now. I'm not going to let that stop me though. I won't let WG eliminate my choices and possibilities. 25 is pretty young as well though.

Have you ever had a sinus surgery? It really helped me and my nose feels like it's back to normal. Only minimal activity there now, according to the ENT. I just hope it stays that way.

[Sangye]

Hi Elena, welcome to the group! We've had a number of teenagers (or their parents) join in the past few months. Someone started a thread for young people, but I don't remember the name of it. I'm sure glad they diagnosed you in a reasonable amount of time and that you're doing well with treatment. I don't have tracheal stenosis-- JanW's the gal for questions about it, since she's done tons of research on it and has one of the world's experts treating her.

Your English is great. I wouldn't be able to tell it's not your native language. Seriously, I'm impressed! :thumbsup:

[Elena]

Oh, I'll try to find that thread then! I'm real glad they did too. I mean, I read some stories about people going for years without anyone figuring them out, and I'm glad I didn't have to wait that long. I read JanW's answers in a thread about tracheal stenosis just now, and I see what you mean! She gave me lots of answers.

That good to hear! I'm reading a lot of English books, since they don't always translate that well into Norwegian. So I'm glad it pays off :tongue1:

[Brooke]

Hi Elena and welcome to the group!
I am 29 years old and was finally diagnosed last year with WG. My ENT doctor suspected I had WG about 8 years ago when all my problems started but my blood tests, urine, and biopsies were all negative for WG. I ended up going to Mayo Clinic in Rochester, MN where I was diagnosed. I have sinus, SS, bronchi, and some lung involvement. I have done Rituximab infusions as well.
You will find a lot of helpful information here from a lot of people! And yes, your English is great!

[RCOSSIO]

Welcome Elena...and wow Sangye, I thought the same thing, amazing English grammar.

Go Vikings!

[Jack]

Someone started a thread for young people, but I don't remember the name of it.
Unfortunately I think it got Hi-Jacked. Perhaps a young person's section needs starting with a few rules attached to it to keep the old fogies out.

[freakyschizogirl]

Nothing wrong with old fogies Jack! Nice to have the wise answers. Otherwise its just us youngens scratching our heads

[eileenv]

Welcome Elena, Sorry you had to look this site up but will find a wealth of information on here and very knowlegable people. I hope all goes wsll with balloon dialation.

[marta]

Hi Elena, Welcome to this site. Great group of people, young and old alike. Your English rocks, in fact it puts mine to shame. As far as writing too much, I can totally relate - once you get going on the story of getting a diagnosis - especially with this crazy disease - you/I can't help but writing a lot since that's the only way to describe the event after event after event that took place before getting it figured out. I also was very relieved to get the diagnosis as it gave me a road to go on and something concrete to deal with (and my first diagnosis was not a very favourable one compared to WG.)

Having been diagnosed at a young age is horrible, but being the eternal optimist I think it will be a benefit in your fight with this disease as your body is stronger and has better regenerative powers than us old fogies (I was diagnosed when I was 43 in May of 2010.) I was definitely strong before diagnosis, and that helped me out heaps in the recovery stage, I don't however have the regenerative powers of a twenty something year old (and my strength is all gone now, but I know I will get some of that back - I'm working on it anyways.)

Take care, and best of luck with the surgery. I'm sure all will go well. Baby steps - that's my new motto in life (from 'What About Bob')

[Elena]

Thank you! It's fun getting compliments on my English from people who actually know what they're talking about :biggrin1:

I know and as I'm writing I always remember more and more, and what I'm writing just ends up a lot longer than I intended.
Also, when I got a diagnosis I knew that if/when I get sick again I can get treatment at once. Not like the first time when they had to figure out what was wrong first. This was what helped me not getting depressed. The fact that it probably won't get that bad again.

I hope you are right about my body being stronger. I feel I'm entitled to some benefits as I'm this young :tongue1:
I don't know your story and how you are right now, but I hope you're doing good. As good as anyone can having just been diagnosed. I'm guessing they haven't gotten your disease quite under control yet. But I know I got lots better once I got some treatment, so I hope you did/do the same and don't get too many side effects :)

[Doug]

Unfortunately I think it got Hi-Jacked. Perhaps a young person's section needs starting with a few rules attached to it to keep the old fogies out.

I'd comment, but I think I'm past my youth stage. Oh, well. I think there does need to be a way to sort us out by age and other variables along symptom lines, say, to help new people in particular find those with a few common points they share.

Andrew? Is there an IT miracle that will do this? I'm thinking along DailyBooth lines where you can tag people with their DB nicknames in comments they might not otherwise see, but are alerted to by being tagged.

[freakyschizogirl]

that would be a wicked idea...maybe we need to start groups with symptoms so we can all share

[marta]

Thank you! It's fun getting compliments on my English from people who actually know what they're talking about
I know and as I'm writing I always remember more and more, and what I'm writing just ends up a lot longer than I intended.
Also, when I got a diagnosis I knew that if/when I get sick again I can get treatment at once. Not like the first time when they had to figure out what was wrong first. This was what helped me not getting depressed. The fact that it probably won't get that bad again.

I hope you are right about my body being stronger. I feel I'm entitled to some benefits as I'm this young.
I don't know your story and how you are right now, but I hope you're doing good. As good as anyone can having just been diagnosed. I'm guessing they haven't gotten your disease quite under control yet. But I know I got lots better once I got some treatment, so I hope you did/do the same and don't get too many side effects :)

Ha Elena, I wouldn't count me in with 'those who know what they're talking about' when it comes to English. It's my second language too, but I've been at it long enough to know better, but still don't. :confused1::laugh:
I'm doing very well thanks, relatively speaking of course - I think I'm one of the luckier ones on this site in that I wasn't affected as hard as some. I'm also getting around quite well and keep pushing for more strength by trying to get out as much as possible (biking, going for walks almost daily, the occasional golf game, and I'm so looking forward to skiing this winter it's killing me.) I'm probably going to get off cyclophosphamide at the end of this month - barring any unforeseen setbacks - and onto something less toxic... and so the forward momentum goes. One tiny baby step at a time.:thumbup:

[Elena]

I have tendency to just assume everyone from USA and Canada has English as their first language, although I know that's not always right. So I'm guessing first landuage is French?

Sounds good! I can't wait to start exercising again myself, and being able to go snowboarding when the snow comes (which probably isn't that far away..) !

[marta]

No it's not French, it's Bulgarian. Czhech was my second language, and English is what I've settled with. We came from Bulgaria to Canada when I was 11 years old.

I know, I know, it snowed up at the ski hill a week or so ago and I was so excited (you can see the mountain from our house) but it's all melted. Our opening date is November 11, so soon!!!! I might go snowboarding again this year, I haven't been on my board for about five years, but I think I miss that too. Shred on shred Betty :w00t:

[Elena]

Wow, then you know a lot of languages :p

Snow hasn't reached us yet, but probably it soon will. Snowboarding really is the only positive thing about winter though :tongue1:

[drz]

I have tendency to just assume everyone from USA and Canada has English as their first language, although I know that's not always right. So I'm guessing first landuage is French?

Sounds good! I can't wait to start exercising again myself, and being able to go snowboarding when the snow comes (which probably isn't that far away..) !

Is Hamar one of the world centers for speed skating? Do you skate?

[marta]

Wow, then you know a lot of languages :p

None very well, and only one that really counts for much. :ohmy:

Ahhh, c'mon, winter rocks!!! I love it more than summer... especially now with the predninsone sweat/hot flashes - ha ha.

[Elena]

Is Hamar one of the world centers for speed skating? Do you skate?

Yeah, I think it is. At least we had the olympics in 1994. I don't do speed skating, but I used to do figure skating. I still do some times actually, when I'm in good enough shape : )


Ahhh, c'mon, winter rocks!!! I love it more than summer... especially now with the predninsone sweat/hot flashes - ha ha.

Too cold for me. I prefer a bit higher degrees, though I see what you mean about the prednisone :tongue1:

[marta]

Do you skate outside or inside? Here in Jasper we skate on frozen lakes where you can occasionally see fish swimming below you as you skate and the big old mountains around you above. It's quite cool to live in the northern climes. I use to hate winter until I moved to the mountains, now it's my favourite season.

[Elena]

I skate inside. The outdoors rink has a too uneven surface to skate properly. I mean it's great to just skate a bit for fun outside, but I used to skate in competitions and stuff and then it's much better to practice inside. And even though I live in a small town we have two inside ice rinks, since the olympics in '94 :)

I does sound nice skating on those frozen lakes though. Just a bit too cold. I've lived in Norway my whole life and I hate the cold.. Which is kind of unpractical, seeing as we have so much of it :glare:

[marta]

Competative skating? Good for you. That sounds great.

As for the cold... it must be an old age thing for me. I use to bake myself when I was young (before we were told how terrible the sun is for you we'd put on baby oil mixed with iodine to get a 'really good tan' - ha ha). Now I can't handle the heat like I use to and love the winter because I can control the temperature better - usually I'm doing stuff that keeps me warm from the inside anyways - but there's great clothes to layer with that are lightweight and you can totally control it. I love it - although it must be because I get to play outside so much.

[Elena]

Yeah, it was really fun, although Figure Skating isn't a very popular sport in Norway. I kind of miss it now that I haven't been able to skate properly for a while.

I can't really handle the heat very well either. I love spring time though, when the temperatures are just high enough to not be too cold and not be too warm.

My surgery went very well btw, I'm feeling fine. I can even breathe almost normally and they expect it to get better as the swelling goes down. My throat is a bit sore, but that I was expecting. The docs are very optimistic because my blood tests were very good and they think my disease is almost under control now.

[Sangye]

That's great news, Elena! I hope things continue to improve and you get into remission quickly. :smile1:

[marta]

Elena, this is awesome. Take care, stay warm under a blanket and get lots of rest. Kick that WG baby to the curb. I'm so happy to hear that.

[elephant]

Elena glad thing went well for you. Great news on your blood work. Stay warm and cozy.

[jola57]

wonderful news Elena, hope you improve lots and keep warm

[Geoff]

Great news Elena!!,

Its a tonic for everyone to share in your excellent report. Keep it up!!:thumbup:

[Elena]

Thank you! I'm going home from the hospital soon. I'll be good and get some more rest then : )

[JanW]

Great to hear the surgery went so well Elena - what was involved.

I'm sure the sore throat will resolve itself soon, and your breathing will be as good as new in a matter of days.

[Brooke]

Take care Elena!! Glad things went well for you :)

[Doug]

Baby oil and iodine: My mother spent 50 years in the sun teaching Red Cross safety aide classes with that mixture. The last ten years she taught, she taught in indoor pools, on advice of her dermatologist, who excised many a skin cancer formed from damage in the first 50 years.

[Elena]

Great to hear the surgery went so well Elena - what was involved.

The lower part of my trachea (where it splits into two) and primary bronchi on the right side was involved.

I still cough a bit, cause it feels like there's "something" down there that I need to get out .. The doc said I could expect to cough up a little blood and stuff after the surgery, but it's been two days now. And there's no blood. Do you know if that's normal?

[JanW]

I actually meant what kind of surgery did they do? Cut into it, dilate it, both, something else?

I don't know if that's normal -- I didn't have that, but I didn't have surgery on that part of my trachea either.

[Elena]

Oh , uhm they used laser to cut into the scar tissue and then dilated it with a balloon.

[JanW]

Hopefully you'll have great success with it then. That must have been some tough scar tissue, to have to go at it with a laser...glad they got it. Did they coat your trachea with myomicin-c as well?

[Elena]

I don't know , they didn't mention it. Maybe. I got some antibiotics and Solu-Medrol afterwards, but I don't know what they did during surgery..

[JanW]

You should find that out. It's considered standard of care here, though dosage varies widely. It seems to help retard the growth of scar tissue -- it's basically putting an immunosuppressant right on the wound.

I'm sure they would have given you antibiotic to retard infection and pred (Solu-medrol in your case) for swelling.

[Sangye]

Elena, you can get that info either by asking the doc who did the surgery or by getting copy of the surgical notes.

[Elena]

The Norwegian specialist gets most of their knowledge on WG from the us and other countries, as Norway has such a small population and therefore not that many cases of WG. Which is why I'm guessing they did coat my trachea with it. I'll ask and make sure when I'm going to the hospital again, but that's not for another 2 months ..