introduction

[The_Kat_Gamer]

Hi I am Daniel.. I was diagnosed with wegeners about 5 months ago.. I am 16 and before I got sick I was pretty healthy person.. because of it I was in the hospital for about a month and it mainly damaged my kidneys (I have kidney failure now) but it did affect my lungs a bit.. Right now I don't know what else to say but if you have any questions feel free to ask them!

[whatthewhat]

Hey Daniel, welcome. My daughter (who has wegeners) is 17, and is in touch with several other teen weggies. If you'll like to connect with her/ them, please private message me. Hang in there...kidney involvement is a beast!

[annekat]

Welcome to the forum, Daniel. I don't have kidney involvement but there are quite a few here who do, who will be able to talk about it with you. I have sinus, nasal, ear, and lung involvement. Hang in there, and now that you are out of the hospital you can get on with your life one step at a time. You've come to the right place for learning more about WG and the meds used to treat it, and for friendship and support. Also OK to vent and complain if you feel the need. We understand. Many people who are quite healthy end up getting Wegener's/GPA. It doesn't discriminate. Where are you from? What meds are you taking, in what dosages?

[Pete]

Welcome to the "club", Daniel. Sorry you got to join at such an early age.

I hope you have (or get) doctors who are experienced in treating our dumb disease. That can go a long way toward your achieving and maintaining remission. Here's a link to a list of Vasculitis specialists that you may want to share with your parents: Vasculitis Foundation » VF Medical Consultants

The best advice I've gotten is to take your meds as directed and live your life as fully as possible. Your "new normal" may or may not resemble the past. That depends on how much damage was done and how well you recover from it. Good luck and let us know how you're progressing.

[MaxD]

Daniel, As others have already said, the key is to get a team of good doctors you trust, follow their instructions, get regular checkups, and go easy on yourself. This can be managed and you have a long life ahead of you, so make the most of it! Some months back there was a news item about a young man with kidney involvement who was the first patient to run a mile in less than 4 minutes, and then there's Cindy Abbott who summited Mt. Everest and competed in the Iditarod: Cindy Abbott - Musher Details - 2015 Iditarod - Iditarod

We have the disease but we all have a lot more in us (even if we aren't athletes!). All the best to you.

[Birdie]

Hi I am Daniel.. I was diagnosed with wegeners about 5 months ago.. I am 16 and before I got sick I was pretty healthy person.. because of it I was in the hospital for about a month and it mainly damaged my kidneys (I have kidney failure now) but it did affect my lungs a bit.. Right now I don't know what else to say but if you have any questions feel free to ask them!

Hi Daniel,

I don't have any questions for you but how about a suggestion?

The more you understand about your condition the better your life will be. So study like you've never studied before! If you're not a good student then become a good student. Do all you can possibly do to learn all you can possibly learn because you have to manage your care. Doctors will help, hopefully your family will help, but in the end you will be your best help.

BTW, this is a great place to get answers, maybe the best place for answers, but look elsewhere to verify them and learn more.

Gary

[woz]

Hey Daniel I'm glad you found us , I had lung and kidney involvement, and other things, there is plenty of help here at your finger tips, just ask, no question is silly, the more you know the easier it will be to manage your problems, don't believe all you find on doctor google, all the best.

Regards woz.....

[drz]

Hi I am Daniel.. I was diagnosed with wegeners about 5 months ago.. I am 16 and before I got sick I was pretty healthy person.. because of it I was in the hospital for about a month and it mainly damaged my kidneys (I have kidney failure now) but it did affect my lungs a bit.. Right now I don't know what else to say but if you have any questions feel free to ask them!

How are you doing now? With youth on your side and good treatment there is very good chance you kidneys will improve, maybe recover to normal limits again. I was headed toward dialysis five years ago but slowly my kidneys improved to near normal functioning at times despite on going damage from my diabetes and being several decades older than you.

Do you see a good nephrologist for follow up?