New to site, but not wegs

[kaaayyyleee]

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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[Pete]

Cleveland Clinic has some of the best Vasculitis specialists in the world. I see Dr Alexandra Villa Forte (she's great) while some others see Dr Carol Langford. They're on the fifth floor of the Crile Building (desk A50).

Welcome aboard!! Hope you get to feeling better soon!!

[Arleta]

I was diagnosed in 2008 also, and went to Cleveland Clinic to see Dr. Carmen Gota, a rheumatologist. I am no longer seeing her, since I am mostly in remission, but I felt good about her. Good luck!


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[BookNut]

Welcome to this great site. You will find SO much help....from real life experience with medicines to moral support when things are not going well and celebration when things ARE going right. I came here when I was MISdiagnosed with WG, but stayed because I get so much help with my respiratory problems and I just enjoy the company of a great circle of friends. SO glad you found this forum!

[mishb]

Hi Kaylee and Arleta and welcome to you both.

Kaylee, you are my youngest daughters age, and I would hate for her to have this sucky disease. You are a champ

I'm glad you are in remission Arleta.

I hope to hear from both of you for many more years to come

[gilders]

Hi Kaylee,
Having the kidney transplant fail after 4 1/2 years (if my maths is correct) must have been such a disappointment. I guess you're back on dialysis and the transplant waiting list?

Until very recently my Wegener's and all the flares/relapses have been dealt with by my nephrologist. He has been great, so although I would obviously not advice AGAINST getting a vasculitis specialist on board, I wouldn't be immediately concerned that you've not had one for so long. This most recent relapse of mine has been stubborn and it has now come to a point where I felt I did need a vasculitis specialist, which I now have.
Your nose bleeds and skin lesions do indicate active Wegener's even if various blood tests such as ANCA may suggest otherwise. I strongly recommend arranging an appointment with one of the Drs Pete recommended.

Most people will relapse and your 7 years of remission is much longer than what most of us achieve.

[annekat]

Welcome, Kaylee, and you, too, Arleta. I'm so glad you found us and can experience the relief of knowing you are not alone and there are others to talk to who've been there and still are. I hope to hear more from you both.

[Jaha]

Welcome Kaylee and Arlita,
I wish you all the best, I see Villa-Forte at CC, she is good. I have heard nothing but good about Drs. Gota and Langford also. You will always be able to find some good listeners and advice here. Keep us up to date on how you are doing.