Hello again

[Twice]

Hi there,

I haven't been here for ages, so hello again. I've been diagnosed since 1977 when I was 9, and have had some really good times and some quite tough times.

Last couple of years have been particularly tough. I had a renal transplant in 2000 but got a very resistant ESBL infection in one of my native kidneys. Last two years I've spent a lot of time in hospital and had three nephrectomies including my lovely transplant so now dialysing again. Also had PCP last year which was very unpleasant. Chest symptoms for most of this year after transplant immunosupporession was withdrawn and I just had a bit of pred, which I've now been on for - eek! - 34 years.

Just yesterday got formal diagnosis from doc and started back on 40mg pred and MMF. Here goes!

So I came back here to say hi because I'm a feeling a bit rubbish about stuff. So hello!

[Nancy-S]

You must be a strong person. I'm sure you can teach me a thing or two. So inspiring to read your story. You were diagnosed sooo young.

I'm super new here. I'm sure you know better than me what a great group this is.

[annekat]

Wow. Nice to meet you. I've only been on here since April, around the time of my dx, and only been posting for about a month. You have really been through a lot from an early age. When you were 9 years old, they must not have known nearly as much as they do now about Wegener's and how to treat it. Best of luck to you; it sounds like you have a lot of innate strength to have dealt with this the way you have for so long.

Anne in Olympia, Washington, USA

[mishb]

Hi Twice,

I'm glad you came back to say HI but I so wish it was only to say HI and not that you have had all of these problems again.
34 years on pred, that just has to suck. :thumbdn:

Welcome back and we look forward to learning more from you

[Al]

I haven't been here for ages, so hello again. I've been diagnosed since 1977 when I was 9, and have had some really good times and some quite tough times.....I'm a feeling a bit rubbish about stuff. So hello!

With all you've been through, I find it rather surprising that you only feel "rubbish about stuff"! I'd say that if anyone deserves to rage, rage, it it you. It really isn't fair, you know. And to be on pred for that long blows my mind (which is, arguably, pretty blown in any case after less than two years).

I have read a good deal of your diary. You write well and have a lot to say. I hope you can share some of that with us. That would be inspiring.

Al

[freakyschizogirl]

34 years on pred, that just has to suck. :thumbdn:



Puts my one year to shame! And feel guilty for always moaning about being on it! Hi Twice. Nice to meet ya and look forward to hearing more about your wegs journey.

[Al]

By the way, in your diary you mention that you are ANCA negative. While this is rare with WG, it is not unheard of. Somewhere between 5 and 20 percent of WG sufferers are negative or low-titer ANCA. This does not alter the fact that it is a truly nasty bit of business.

Al

[Dryhill]

Hi Twice I think you are amazing, if I had gone through all you have, I would be feeling a bit more than "rubbish about stuff". In fact I think I might well have gone for a nice long walk off some of the nice tall cliffs along the south coast.

[Al]

Hi Twice I think you are amazing, if I had gone through all you have, I would be feeling a bit more than "rubbish about stuff". In fact I think I might well have gone for a nice long walk off some of the nice tall cliffs along the south coast.

Not that Jim is actually recommending that! Actually, though, those nice tall and beautiful cliffs might be a great place for a gentle walk, perhaps to compose new material for your diary....

Al

[Sangye]

Twice! I remember you! I've often wondered what happened to you and how you're doing. I'm sorry to hear that you've been going through such difficult times. Glad you're back on so we can keep you cheered up. And look, now we have SMILEYS! :hug1:

[Twice]

Hi Sangye! Hope you're doing a b it better than last time I was around.

Al, yeah, ANCA has always been a bit hit and miss with me. I've had positive cANCA, pANCA, negative everything when I'm at my illest and positives when I feel OK. I was diagnosed again this week after a bronchoscopy and we've only just done my first ANCA test in over a year - really out of curiosity rather than as a diagnostic tool.

I may be talking out of my behind here, but over the years I've been increasingly of the opinion that WG is a pretty loose diagnosis. I've variously been diagnosed as having PAN with WG symptoms, WG with PAN symptoms or just the catch-all "autoimmune vasculitis", which I tend to prefer.

[Sangye]

The problem is that the Wegs dog doesn't know how to read, so he doesn't always follow the rules. :wink1: :rolleyes1:

[Al]

The problem is that the Wegs dog doesn't know how to read, so he doesn't always follow the rules. :wink1: :rolleyes1:

Excellent comment, Sangye--pithy and, as always, to the point. Also, it speaks to a current pique of mine, inspired by several recent threads: Specific diagnoses are for the convenience of the treatment prescriber, and not a definitive statement about the nature of the disease itself. It is, essentially, fitting the square meal of the symptoms into the round can of standard therapeutic protocols. As you say, the Wegs Dog (I'll put both words in caps) doesn't read, and will claim its territory when and why and as it will--never mind what the textbooks say. Thus, there is, and must be, substantial overlap of symptoms across many committee-agreed disease designations. No matter. We are all weggies, with--like everything human--many similarities and many differences. And, when we hurt, we hurt.

Al

[drz]

The problem is that the Wegs dog doesn't know how to read, so he doesn't always follow the rules. :wink1: :rolleyes1:

Is that why we often refer to it as that stupid disease?:wink1::wink1::wink1:

[Al]

Is that why we often refer to it as that stupid disease?:wink1::wink1::wink1: Let's just say that nature is not obliged to attend to human sensitivities....

Al