Hello, my name is Kaylee. I was diagnosed with wegeners in 2008 when I was 15. After weeks of horrible nose bleeds, coughing up blood, lethargy and vomiting I finally went to the emergency room and was admitted with stage 5 end stage renal disease and severe pulmonary hemorrhaging. I'm sure you all know the treatments for wegeners so I won't go into detail there after being on dialysis for a year and a half I received my first transplant. In August 2014 that transplant rejected and I began dialysis again. From the first day I was diagnosed I became very good at ignoring my problems and going in with my life, acting like nothing happened but this time is different. Everyday is a struggle to act and look like I feel okay. I never talked to anyone about the Stress feelings that come with being diagnosed and I think it finally caught up with me. This is the first time I've saw a site like this and I feel so relieved. I've yet to meet another person with wegeners, let alone hear their stories. Everything you all have shared has helped me a great deal, some of you have answered questions that I've had for years and given me answers as to why this is happening or why I feel this way. Finally realizing that I'm not alone in this feels like a weight has been lifted, that there finally people that understand what I'm going through. I live in the Cleveland clinic and see pre and post nephrology transplant, but have not seen a specialist for wegeners since I left nationwide children's hospital. Can anyone recommend a dr or give me advice on what to do there? My nephrologist stopped prescribing my methotrexate, prednisone and all other disease related drugs two months ago. So far I have been fine, my nephrologist doesn't seem to think I need to be on them but I have been noticing small skin lesions (I did not have them the first go around) and have been experiencing nose bleeds and the small vein things on my legs. ( like I said this is my first time I a site like this, or talking about this to anyone besides myself, so I'm not sure on some of the terminology. Like I said before, I was really good at ignoring all of this and acting like nothing was happening) These obviously have be worried, has anyone experienced relapse? I've just been having a tough time lately, and would really appreciate some input. Going through all of this again as an Adult is definitely different, I feel like I'm going through it for the first time. You have all helped me so much already, thank you.
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