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Thread: New Member - Hello Everyone

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    Default New Member - Hello Everyone

    Hi to all my fellow weggies. My name is Shannon and I'm 37 years old. I have been married to Greg for the past 17 years. We have three girls. A 16 year old and identical twin girls who just turned 13 last week. Wow - three teenagers in the house now - LOOK OUT! I live in a little north of Pittsburgh, Pennsylvania. I just recently found your site, however, I was diagnosed with WG back in January of 2007. I was on another site back there and made a few friends, but we have since lost touch. This site seems a lot more active. I know that the first year after I was diagnosed my whole life was consumed with Wegeners and reading and finding out as much as I could, but slowly you get back to life and it's not as scary anymore (which is a good thing). Lately, I have been feeling like I need to connect with people and hopefully help others. I know that God made me suffer through what I have to hopefully be a beacon of light to others and give them hope. Unfortunately with WG being so rare, I do not have anyone I can reach out to personally so I figured, I would tell my story and hopefully make a few friends along the way.

    My story is different than some in that I was diagnosed with an orbital pseudotumor at the age of 12. I remember being in junior high school and being a young girl looking in the mirror constantly, kept saying to my mother that one of my eyes looked smaller than the other and she kept saying I looked fine. Then my eyelid began to swell eventually to the point that my right eye was bulged out and completely swelled shut. I was sent to Childrens Hospital for biopsies, ct scans etc. I was treated with high dose steriods and 13 radiation treatments, which made me lose some of my vision. It took a year or two to get my eye straigtened up. I'm left with no tears in that eye and a slight drop to the eyelid. No one at the time could understand why a young skinny kid like me had such a rare thing. At the time time as I was in the hospital for my eye, they noticed my blood pressure was abnormally high, they did tests and discovered that I had renal artery stenosis and also mid aortic syndrome. This is where your abdominal aorta and your renal arteries are very constricted. I ended up having balloons put in my renal arteries to help, but eventually had my right kidney removed when I was 18 since the blood supply was cut off and it was no longer functioning. Since the time I was 18 until I was 31 everything was fine. I got married, had my babies (including the twins) all on one kidney with no major problems and thought I was fine.

    In October of 2006 while I was at work one day, I coughed up a lot of blood out of the blue. I wasn't even feeling sick. That started all the testing which took about three months, of blood work, ct scans, needle biopsies of the nodules, and eventually an open lung biopsy. My pulmonologist was the one who put it all together on my first visit to him. He told me that he thought it was going to turn out that I had Wegeners and when I looked it upon the internet it sounded just like me with the orbital pseudtumor and everything. I still have never met anyone with an orbital pseudotumor. I am still a little embarrassed by my eye, but no one ever asks me about it anymore and kids can be cruel when you are young. It's not as noticable as I think it is, but at this point I have lived more of my life with it this way than the other way. I cant get my eyelid fixed because I have no tears from the radiation and it would just dry out really bad (had that happen already and it was horrible).

    I ended up at the Cleveland Clinic for a second opinion of everything. They tried to get the slides from my eye biopsy and a slide from my kidney when it was removed but it was so long ago that the hospitals had destroyed them. They had a big meeting about me to see if it had been vasculitis all along and maybe it is possible that the steriods alone had put it into remission for a while there. Maybe I have TA in my abdomen and WG in my upper respiratory tract, eyes and sinuses. We will probably never know.

    I would highly recommend Cleveland Clinic and still go there once a year. I had a really great doctor in Pittsburgh, but she moved to Michigan so now I have one of her associates, but its just not the same.

    I would love to go to one of the symposiums sometime, but with working full-time and having a family, we don't have the funds for a trip like that which I would probably be the only interested in. haha.

    My treatment was cytoxan for 6 months, Prednisone for a year (starting at 60 and tapering very slowly) Methotrexate after the cytoxan which I still take to this day. 20 mg a week. They don't want to take me off since I only have one kidney and so far the WG hasn't showed up in my kidney and we want to keep it that way. I couldn't take bactrim or dapsone so I had pentamidine breathing treatments at the local hospital once a month while I was on both cytoxan/methotrexate and prednisone to prevent PCP.

    I've been doing great these last few years. Walking 3 miles a day. Keeping good circulation in my legs despite the decrease in blood flow. My vascular doctor in Cleveland is impressed. I even walked two 5Ks.

    Glad to know of all of you and I hope that you can answer of my questions that I arise and I can be of help to someone out there.

    Take care of yourselves and don't give up hope. I'm thankful for my illness as it has made me appreciate life and the small things a lot more.

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    Welcome shannonkop. Glad you found 'us'! This site belongs to all of us!! So, ask questions, share experiences & knowledge, and some nites when the WG is biting at us, this is just a nice place to come and remember you're not alone. You sound as if you really have a hold on the WG dog...good for you, but it's always at a cost no matter what...sheesh. Take care & keep on keepin on!
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


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    Welcome, Shannon!

    I currently have four teenagers (and a 6 and 8 year old) with no twins, so I know the crazy!

    Good to hear that you are keeping things under control health wise - I'm hoping to get back to that place soon

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    Welcome, Shannon,

    This is indeed the best WG/GPA forum on the internet, I think, and I'm glad you found us. We can all learn from each other's stories, and yours is interesting.

    Funny how moms can say something is "fine". I have a slight droopy eyelid, too, and have all my life. I would notice it in school pictures, though no one ever mentioned it. I think it is usually not noticeable, but more so if I'm tired or stressed. Luckily for me, it never showed itself to be a sign of anything at all! And I'm sure it is not WG related. I'm sorry it was a sign of a real problem in your case. (Oh, just realized yours didn't droop until after your treatment.... but you did have an unusual looking eye as a kid.)

    Keep us posted on all your Wegs issues and join in on our other discussions! I look forward to hearing from you again.
    Last edited by annekat; 01-23-2013 at 04:56 AM.
    Anne, dx'ed April 2011

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    ArlaMo - wow girl you are super mom!! You sound like you have a good attitude and I'm sure you will continue to do well (especially since you are seeing Dr. K)

    Anne - my eyelid now is also more pronounced when I am tired, etc. It's nerve damage from when "pseudotumor was pressing on everything". It's weird that it was fine for 11 years until one day when this all started. I actually got a bug in my eye when I was riding my bike and they thought it was a bug bite making my eye swell up like that. Boy wouldn't that have been nice?? haha

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    Hi Shannon and glad u found this group..alot of good ,kind and knowledgable people hear.I rely on them alot more than my drs. sometimes. I live in Youngstown,Ohio not to far from Pitts. and I also go to the Cleveland Clinic. I see Dr. Hoffman there..which one do u see. Its sounds like you've really been through the ringer with this disease and can probably provide alot of info yourself. Glad you are doing better these days.Take care and keep us updated
    Life isn't about how you survive the storm, but how to dance in the rain !

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    Hi Debra,

    Maybe we can get together sometime. Do you go to any group meetings or anything? My doctor tried to start one in Pittsburgh and there were only like three people there. I see Dr. Langford at CC for the WG and I also see Dr. Heather Gornick for mid aortic syndrome. She is a vascular doctor. I really like her. I see her once a year now and I haven't seen Dr. Langford for a while because I found a doctor in Pittsburgh that I liked a lot, but if I ever have a bad flare, I might just go back to Cleveland.

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    Welcome Shannonkop! Your story is very interesting and unique. Something I've learned from all the folks in our forum is how similar we are yet each story has its own special twist. I'm the mother of three sons (including a set of twins!), but they are adults now. Although I remember all the fun of young motherhood! I grew up in the Cleveland suburbs and had a brother who worked quite a while for the Cleveland Clinic (hospital heart center). And a sister retired from CC (Avon Lake eye doctor office) and a niece currently works for them, too. If I was closer, I'm sure I would have gone there for diagnosis and treatment! You are in good hands! I hope you enjoy getting to know all of us in the forum -- there's a lot of great information shared and lots of wisdom, too! Your thoughts and ideas will benefit us all!

    KB
    KB -- "The good life is inspired by love and guided by knowledge". Bertrand Russell

    Dx in September, 2011. Major involvement: kidneys and lungs. Medical implications: fungal pneumonia, drug-induced hepatitis, allergy to fungal meds, ear infections, sinusitis, gall bladder removal, vitreal detachment, and eye cellulitis. Medial meniscus removal (unrelated to WG). Medications: Rtx, Pred 5.0, Lisinopril, Chlorthalidone, Levothyroxin, Omeprazole.

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    Hi Kathy. Thanks for your post. It was great hearing from you. That is so cool that you have twins. Are they fraternal or identical? I forgot to mention that I am also a twin. I have a fraternal twin sister. So everyone was excited when I had twins myself. My twin has epilepsy but no wegeners. My other brothers and sisters are healthy. How do you like living in the outer banks? I would like to rent a beach house there someday.

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    Hi Shannonkop and welcome to you from, extremely, sunny Australia.

    What a time you have had. I couldn't imagine seeing my kids go through something like what you had, at such a young age.

    I'm glad you have joined us and look forward to more stories.

    Take care and .............
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

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