Newbie to group

[daystarr8]

Hi my name is Shanna and I have been diagnosed with Wegeners for 35 years. Yep I'm a warrior. A mean WG fighting machine. When I was diagnosed my nose was bleeding for hours on end. My hearing was shot. My kidneys were bleeding badly. My appetite was gone. I slept around the clock and the ENT I first saw told my mom I was a spoiled brat and the only reason I was waking her up in the night to tell her my ears hurt so bad was because I wanted to sleep in her bed. FUNNY DOC. I was already in bed with her. So mom left his office went to the phone booth outside and called another doctor and begged them to see me that day. He did, and he could not believe how terrible my ears looked. He said I must be scratching the insides of my ears while I'm sleeping lol had to wear cotton gloves to bed in July in California. Really??? Not my mom but she said ok and agreed to bring me back at end of week to recheck. Guess what they were worse so he called another ENT and asked if I could see him same day. Thank God he said yes and he was the man who saved my life. He admitted me to the hospital did nasal biopsy, and eat tubes and said I have seen tissue like mine in med school one time and I believe this little girl has this disease. He was right from there he appointed a oncologist to start treatment cytoxin and prednisone and in a few days I was eating again but I had had a minor stroke from the trama. I couldn't stand up on my right leg. But in time it got better and so did I. Lots of bumps 5 years on meds 5 years off then again 5 years on 5 years off. Then bactrim came in to my life. 9 year remission yay!!! But 11 months into relapse my bladder bled. So checked the bladder and found a huge tumor. Yep stage 4. Cytoxin exposure. Now I'm 11 year WG free and November is 11 years cancer free. I was in hell fought WG then fought cancer. Huge mess. BUT I'm ok. I'm healthy I work full time I'm an ultrasound tech and I have an education business too. My only new development is my airway. One of my relapses did a pretty good job on my airway and bronchials. I'm hoping it's just scar and I can get dilation and it's not relapse. It's great to see all of you on here I have NEVER met a WG patient in 35 years of having it it's been kinda lonely. I wish you all well I hope you battle outcomes work out well for all of you. 💜

[mishb]

Shanna, you certainly are a WG fighting machine.

I would hate to go through the doctor process back 35 years ago - it's bad enough now when they do believe you.
Thank goodness for mum's

Welcome to the best forum worldwide.
You will get a bundle of information here and I'm sure that you could share even more than us.

[Rose]

Hi Shanna.

Welcome. You will not be alone anymore. What I have found with this forum (apart from all the support and advice) is people who understand this disease so much more than doctors. Many have even experienced the sometimes really weird symptoms experienced by WG sufferers at some time or other and when these really weird symptoms are mentioned to doctors they look at you as if you have lost it. So, its great to have confirmation that you are not mad....at least not yet! lol

Rose

[Mas78]

Welcome to the forum, I am sure that you will find that the members here are a great resource for all WG questions

[mrtmeo]

Hi Shanna,
You definitely have an amazing vasculitis story.
Here is some info on treating tracheal stenosis
http://www.wegeners-granulomatosis.com/forum/tracheal-stenosis/4218-video-treatment-methods-subglottic-stenosis.html

[annekat]

Welcome, Shanna. You have really been through a lot, starting from a very young age. You must be a fighter to made it through all that. You are the first person I remember hearing of on here who got cancer from Cytoxan exposure, though we all know it's a risk. It sounds like they may have given you a huge amount. 5 years on meds, 5 off, and 5 on again... was it CTX all those years? Maybe they didn't realize the danger so much back then. Hard to imagine, though. Anyway, I'm glad to hear you are now doing well and can teach us all a thing or two about WG. So sorry about the airway problems, though. Most of all, you are no longer alone with this, and you might even get to meet one of us someday! Best of luck!

[Jayne 14]

Welcome :
Sorry your in the gang - but - its the best place all round
Help advice & reassurance
Xx


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[Allisonquast]

Wow shanna. You are a warrior! What a fabulous story! You have a great attitude. Please stay in touch as I think you can contribute to the forum. Stay healthy!

[Psyborg]

Welcome to the Forum Shanna. It sounds like we have a lot to learn from you :)

[Jaha]

I am so glad that you came on this forum. What an amazing journey, all the battles that you have fought and are still here and willing to share your knowledge to help us get thru our battles. All I can say is Wow!

[kaysee]

Welcome to the forum Shanna. I am new to the forum as well, just being diagnosed last April. I have found it to be a wonderful resource as well as a comfort to share with people who understand the issues that we can have with this disease. I have been able to ask questions and receive answers that my doctors could not respond to. It has helped me understand and deal with side effects I have been experiencing. You will be able help the rest of us by sharing your 35 year journey.

Karen

[vdub]

I am convinced that my wegs actually started way back in 1961. I was dead tired and couldn't stay awake. I had constant nose bleeds and, of course great joint pain. Back in 1961 they didn't have much experience with wegs. The docs treated me as best they could for "whatever I had" and isolated me from school and my family for 18 months.

Finally, a new wonder drug came came out and they put me on it -- high doses of pred. I gained a lot of weight during the year I was on pred. When they tapered me off, all was well until 49 years later in 2008 when the symptoms came back.

I will never be able to positively link the two instances and the doctors won't make a guess either, but the situation does seem to be more than coincidence.