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Richard's First WG Story
Well I guess just like the rest of you the aftershock of being diagnosed with WG is all too familiar. My story is that I knew about WG since my uncle was diagnosed with the same illness in "91."
April 24th 2008 just finished a 20 mile bike ride alone since my wife came back from a business trip with a nasty...nasty...awful flu. Now I am not blaming her flu to my WG, but exactly one week later I am experiecing mild joint pains (knees, wrist, hips, fingers...you know the symptons)!!!
Realizing the pain I immediately went to see a Rheumy Doc and she prescribed all sorts of test, especially seeing my ankle swollen like a melon. Well the test revealed a lot of inflammtion in the blood system but did not point out WG. After seeing her for 2-1/2 weeks and starting to cough more than usual I woke up one Sunday morning May 20th and start coughing up (aghhh) BLOOD! Now there is nothing more freaky than this and my wife immediately throws me in the car...mind you I am 6'4 282...now I weigh 255..anyway went to the hospital got the chest x-ray, CT lung scan and all sorts of blood work! After six hours in emergency, ER DOC says you have to stay overnight as we see nodules in your lung (the crazy thoughts that run through your mind...like LUNG CANCER!) However, ER doc says the nodules don't look like cancer, but we won't know until further exams are done.
Well finally after 8 hours in ER they transfer me to the oncology ward and it comes a pulmonary specialist..who DROPS THE BOMB! I think you have WG, however without a biopsy we won't know for sure. Tuesday, May 22 lung surgery and walla, confirmed WG on the 23rd.
Keep in mind I am opening my own SF Insurance agency in about a week and the last thing I needed was this dreadful news (especially since I knew my uncle's diagnosis!)
But here I am today, June 10, 2008 3-weeks into the Cytoxan 50mg morning and 50mg evening, 60mg prednisone (which my Rheumy will start reducing) and Lyrica for those knife burning feet of mine. By the way my Rheumy Doc (Dr. Baca) from Boca Raton is awesome! Kudos to him!
June 10, 2008....I don't feel any anger, don't feel why me...I look forward to everyday I am here..my business opened up without a hitch and the one thing I can say is that I live in the NOW! and now is what I do. The only positive I can say about my WG is that I lost 27 pounds and the steroids does not make me hungry, don't feel nausea, feel a lot of energy throughout the day...nights though I get real tired. I drink lots of fluid so I am up all night watering the fish!
The only complaint I have is my feet (Lyrica seems to have help substantially) but I can't stand up for more than 10-20 minutes. The throbbing and burning stabbing sensation is, well, UGGGHHHHHH!
Look forward to writing again and I hope I did not bore you with my story!
Richard (Deefield Beach, FL)
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