Hello from Texas :)

[Kristina]

Hello,

My name is Kristina and I was just diagnosed with Wegener's in Dec. Nasty little bug did some pretty good damage already. It started as a sinus infection and bloomed into, well, you know. My nose collapsed and is toast, have lost 3/4 of my hearing and have lung, liver, and kidney damage. Due to the lovely health care system in the states and insurance I will just now be seeing my main doctor.. 2 months after getting out of the hospital which I was in for 3 weeks. I have so many questions and not even sure were to begin. I'm a single mother of 3 kids ages 14, 12 ,8 so being knocked down has been rough on us all. But I come from a long line of tough women and fight I will. I've under went 4 rounds of chemo so far and am taking 60mg of steroids per day. I was in bad shape when I came out of the hospital but started doing much better. Wasn't in all the pain which was a relief. But and starting to have all the symtoms again. So hopefully my doctor can give me some answers tomorrow... Wish me luck...

[Pete]

Welcome to the forum, Kristina. If you have questions, ask away. There's probably someone on here who can answer or direct you to someone else who can. If you just need to blow off steam, go ahead. We all get frustrated, fearful, angry at this dumb disease.

I hope your doc can figure out what's going on and treat it.

Good luck and better health!

[pberggren1]

Welcome to the family Kristina. Where in Texas are you?

When you say chemo, do you mean Cyclophosphamide(ctx) by IV?

Try and get copies of your blood work and we can help you learn what the numbers mean for all the tests.

How long have you been at 60mg of pred?

Are you able to work right now?

[Kristina]

Thanks Pete,
It's nice having someone to talk to that is in the same boat so to speak. This all happened so quickly and frankly scares the heck out of me. Here's a little background on how mine began. It started with a sinus infection end of June 2013, went to dr.s put on steroids and antibiotics many times to no avail. By Oct. my nose was nothing but puss and polyps, I could barely hear I couldn't even lay my head on a pillow it hurt to even touch my head. lol, had one dr accuse me of being a cococaine user... (shakes head) when did dr's stop caring? I had been to the emergency room several times finally had to move closer to family and through another ER visit found the right doctor. Was admitted end of Nov. and through lots of test, biopsy of nose and lung was officially diagnose with WG. My nose completely collapsed and is just a giant cavern.. most of my sinus area destroyed... my vision was affected as well but not to badley... I did loose 3/4 of my hearing and will have have to tubes in my ears for the rest of my life according to my ENT.. I have an area the size of a grapefruit on my lungs that is already damaged as well as damage to my kidneys and liver. All in 6 months.... I'm still trying to wrap my head around it. The only doctor I have got to see since getting out of the hospital it my ENT. I do finally get to see my Rhemiutod doctor tomorrow... sighs... thankfully. I had 4 rounds of RX and am on 60mg of pred. a day. But am experiencing symtoms again. My doctor did order a CT, chest x-ray, and blood work.. I will find out about those tomorrow. Sighs.... you know the sad thing is, I have so many questions I don't even know were to begin. Or better yet what questions should I be asking... I don't know what any of the test counts people talk about on here that lets you know if your having a flare up... or how they decide your in remission. Just feeling a bit over whelmed. Any advice you could give (smiles) would be appreciated....

Kristina Lost but Fighting.... :)

[Kristina]

HI Phil,

I'm currently living on the coast by Victoria... love being by the water. :) My doctor started me on RX, 4 rounds with 60mg pred. per day. I'm working on my records now... 3 weeks in the hospital, there's like 709 pgs... I didn't realize how expensive it is to get records.... I've been on the pred. since the end of Nov. 2013.. Symtoms first started end of June was officially diagnosed first part of Dec.2013 but am already having the major symtoms and pain come back after just a couple of weeks of my last RX treatment... that's scary.. I see my Rhemetoid doctor tomorrow for the first time since I was let out of hospital... that was 2 months ago. Insurance problems... so I set here still not really knowing anything about WG and what is in store for me... Any advice or helpful knowledge is welcome...


Kristina Lost but Fighting :)

[pberggren1]

Here are some good threads for newbies.


http://www.wegeners-granulomatosis.com/forum/general-wg-chat/337-how-know-when-you-re-having-flare.html

http://www.wegeners-granulomatosis.com/forum/general-wg-chat/59-links-wegener-s-granulomatosis-resources.html

http://www.wegeners-granulomatosis.com/forum/general-wg-chat/3053-links-good-over-view-what-gpa-how-treated.html

http://www.wegeners-granulomatosis.com/forum/hospitals-clinics-doctors-nurses/151-tips-dealing-doctors.html

I hope these help you some. This is no doubt going to be the biggest learning curve of your life. We are here to help you.

[mishb]

Hi Kristina and welcome.
I'm so sorry that you had to find out about WG/GPA the way you have - but I'm glad that you found us, the best forum to come to.

If you have any questions, someone is on here 24 hours a day, basically. You see, we live all over this big big Planet.
If you check out the weggie map at the top of the screen, you will see where everyone is.

Good luck with the rheumatologist and I hope you start feeling better, very quickly.

[windchime]

Hi Kristina and welcome to the forum. There is a wealth of information on the site in the archives. The people here are wonderful, warm, knowledgeable, caring and loving. You will find much support here. Feel free to vent, ask questions, or just share. We are all here for each other.

Good luck with your Rheumy appt today. Do you have help with the kids? That will relieve a lot of your stress. A support system is very helpful right now. Well good luck and keep us posted with your success.

[renidrag]

I don't know what time your appointment is but I think it is really important to take a friend or parent with you if available, as I have said before four ears hear a lot better than two. See if your Rheumy is open to being in touch with the vasculitis center if he has any questions. Good luck.
Dale

[Jennie]

Hi Kristina

Welcome to the Forum. Everyone here is so helpful and caring. I hope you had an informative appointment with your Rheumatologist and got a few questions answered. How are your kids doing with your diagnosis?

Sending hugs your way

Jennie

[Alysia]

Hi Kristina
I am sorry for you, for all the tough time you are going through :sad: the beginning it the toughest.
but now you are not alone with this WG roller coaster anymore. we are all with you.
welcome to our weggie family :hug2:
I can tell that I would not survive without my weggie family here. no way.
the friends here ARE the best wg-experts on the globe, they are also caring and can comfort you and make you laugh untill you forget your troubles and feel so proud to belong here. like I do :love:

[Kristina]

Hi Everyone... :) Thanks for all the support and well wishes. It really means a lot. Just knowing there is someone else to talk with that understands is such a comfort. My appointment went pretty good.. I do like my dr. he is very forth coming and has the best bedside manners. We are waiting on test results not sure why it is taking so long. He upped my steroids to 80mg a day and discussed our plan of action if I'm active. Which is either another round of RTX or Cytoxan. Fingers crossed. My kids are doing pretty good. (smiles) my oldest went to the plate... she took real good care of her momma, bathing, helping me get dressed, playing nurse taking care of my pic line... everything, she is awesome. It was real scary in the beginning for them but they seem better since I'm up and moving again and able to care for myself. On another note, excited at the moment about going to get fitted for hearing aids next month.. praying that it helps.. the hardest part is not hearing my kiddos... my middle ears are toast, dr. told me I would have to wear tubes in them for the rest of my life... so much for swimming... lol but that I have hearing at the bone so the hearing aids should help me... fingers crossed... :)
Curious for anyone to give a little insight on how long it took for their Weg's to go into remission and how long it held? What this really means to my life? How hard is it to work with this, when our immune system is knocked out? Should I try and file for disability? Just trying to understand the full impact this really has on our lives... Any all advice is welcome... :)

[Dirty Don]

Been in a medical remission for 2 years, shook pred for a month, back on but weaning again. Till pred is gone, docs won't consider mtx reduction...I'ma working on it! Not sure what it means to anyone's life...it has become my life now. Life is pretty normal with AI down in terms of things I can do, attempt, or not. Risk of infection should and will be a constant concern as the WGs never goes away at this point in research/protocols. Yes, do file for disability if you can get it...your current work will be affected by at least 6 mos after dx and drug protocols. Some get back faster, some never do. I'm not sure any of us or our docs understand the disease - some are well educated, many of us are coping well from what we learn from our docs and on here and other support systems. Best advice I offer is to keep it slow and easy, do the best you can, get the best you can, and keep at it...best to you.

[annekat]

Welcome, Kristina,

Everyone has said it all, but I'm just really glad you found us! This forum has been the greatest possible comfort and source of information and support since I joined it nearly 3 years ago, shortly after my diagnosis. I feel I would really be in the dark without it. I hope you will come here often and read and respond to our posts and start your own threads with any questions or concerns you may have, as well as sharing anything you'd like whether WG related or not.

How long it takes to get into remission varies greatly with the individual. A lot may depend on the amount of stress in your life, which is one of the worst things for our disease but unavoidable by many. Just be easy on yourself, get the rest you need and help from family members, eat right, get exercise if and when you can, etc. I may be close to a medicated remission after 3 years, though no one has said so. Others manage it sooner, and some never seem to totally reach that point.

A lot of what you've been through sounds very familiar to me. The hearing loss and collapsed nose, and the hard to treat sinus infections. My nose is less collapsed than yours but it was weird how I suddenly noticed it and none of the docs had mentioned it, so I don't even know when it happened. One doc did ask me if I had used drugs. That bothered me. I'm very sorry that yours is as extreme as it is and I hope you might have a chance for reconstructive surgery some day.

Anyway, do not hesitate to post anytime, there is always someone up somewhere in the world on this forum!

[woz]

Hi kristina, welcome to ''club weg'' There is some excellent reading here (I have read most of the posts twice), the more you know, the better you feel. I have had wegs, for just over a year, 4 months on heavy meds, tapering down to a maintenance dose, since September 2013, I had ear, eye, nose, lungs, kidney, and muscular/joint pain, fevers, migraines and who knows what else. I am currently on 150mg azathiaprine, daily. I am currently having a few issues at the moment, hopefully it is just a storm in a teacup. I am extremely lucky, to be where I am now, my doctors still laugh, when I see them, they cant believe I am, where I am now. So It is possible to get into remission quickly, for some, I hope you are one of those people, Good luck.

Regards woz.....