Long Term Treatment

[AndrewT]

Believe it, or not, and it does amaze me.....It's been Twenty Years, since I Collapsed with Vasculitis. I was given or, more correctly, my Mother was told that I had 'Less Than An Hour' to live. I AM aware that it is only due to the skills/care of Surgeons/Doctors, along with my Mother's ceaseless love (I do believe this), that I am still here.

I was on Dialysis, for four years (almost exactly- July 2009 to July 2013) before having a Kidney Transplant. That was four years ago now......

I don't quite know why I'm Posting this- partly as an 'inspiration', to others, especially the 'Newbies'. There IS hope, even when you seem/feel 'Lost' and you are in pain-needles, tubes, pipes and so on, are being pushed into you.

I have a strong Faith, I am a Confirmed Christian (though only a year ago) and, honestly DO believe in Jesus. (If anybody wants to discuss this aspect, with me, further I will either write a specific 'post' or contact you directly).

I'd be interested to hear from other 'Long Term' Members, and maybe Compare Notes.

Kindest Regards

AndrewT

[vivdunstan Volunteer]

I've been living with cerebral vasculitis for 23 years now, since 1994, aged 22. But it took 3 years for me to be diagnosed. My illness was initially very like ME, then more like MS.

I've had a pretty tough time, especially since a major relapse in 2004. I have tried an awful lot of different drugs over the years, including at one time 5 drugs simultaneously suppressing my immune system. My bone marrow took quite a hammering, among other things!

But since eventually having Cyclophosphamide treatment in 2012 - earlier it was ruled out by the consultant for fertility concerns - things have been a bit better for me. I've been able to reduce my immunosuppression cocktail, and am much more stable. My steroids will probably not drop below 7.5mg though - they've been on a roller coaster since 2004.

Day to day I'm severely disabled sadly, and my symptoms are very similar to multiple sclerosis. But I'm still alive, and happy, which is a good thing.

My detailed story is online at the Vasculitis UK website at

vasculitis.org.uk/living-wi...

[Keithtim10]

Hi Andrew it was interesting and uplifting to hear your issues and how you are keeping health wise.I was diagnosed 2 years ago with ANCA Vasculitis which has also left me with Stage3/4 CKD and been through plasma exchange then a course of cyclophos and steroids then Azothiprine then inDec 2016 Rituximab and second course of this in june due to relapse.Its great to hear of people doing as well as your good self because at times i do feel low thinking i am 67 taking tablets every day and treatment every 6 months to keep me going--is that it!!But i have to say my consultants and St James Renal Dept. Leeds have all been brilliant and for me to come from where i was in the beginning to now has been some journey but it gives me confidence for the future whatever it may hold and with janet my wife at my side who has been and still is a rock through it all.Thanks for your post Andrew it made me think and hope you keep well.