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I am so sorry to hear that she's doing poorly. Those are all such serious problems. I hope Amy is getting excellent care at a major hospital. Let us know if there is anything we can do for you. You can private message me if I can help you in any way. I'm not on the forum much but I do respond to private messages as needed. Hugs to you for hanging in there.
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Sorry she's having such a tough time
Great place to vent here & get support
Sent from my iPad using Tapatalk
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I'm glad you took the opportunity to vent. I'm sorry you have so many reasons to do so. Did Amy finally get a Wegener's diagnosis, and has the disease itself been brought under some control? You did say she is ANCA negative, but we know that isn't always an indicator; in her case, I hope it is. It's so sad that the meds she's had to take have had such negative effects. It sounds like she has multiple issues which may or may not be related directly to WG. It does seem they are mostly related to the effects of immunosuppression. I hope she is getting the best possible medical care and plenty of follow-up from specialists in all the areas she needs help in. This was probably shared above, but here again is the list of Vasculitis specialists approved by the Vasculitis Foundation: VF Medical Consultants . They will consult with docs free of charge, as I understand it. Even if the vasculitis is under control, they may be able to recommend docs to deal with the issues resulting from immunosuppression. There is a new website with a list of docs recommended by patients in different geographical areas; it is not fully constructed yet, and I'll update people when it is. (It was formerly the VPAN site.)
I could go on and on, but I really just hope and pray things can turn around for Amy, somehow,and soon. Hugs to you both.
Anne, dx'ed April 2011
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Thanks Pete. It does help to vent once in a while.
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Sorry to hear of all these problems for your daughter. Venting is all we can do sometimes to cope with what is going on. I will pray that your daughter starts having some good things come her way. Don't give up the fight.
Karen; dx'ed April 2014
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