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!