Another one from South Wales, UK

[Tippon]

Hi, I'm Ryan, and I'm from Aberdare in South Wales. I've recently been diagnosed with Wegeners, and spent a bit of time in hospital. My life has changed quite a lot over the last three months, as you guys probably already know, but this is what happened to me...


What a Christmas!

We stayed with my partners mother on Xmas eve, and spent most of the next day with her family, swapping presents and having dinner etc. I'd been feeling a bit rough and having some minor health problems for a few months, but was feeling really rough by the time we headed up to see my family, and felt like I had a really bad cold.

We stopped off at our house so I could get changed and freshen up, but apparently it took me twenty minutes to get upstairs and change my t-shirt, and another twenty minutes to catch my breath afterwards. My girlfriend realised that something was wrong, so rushed me to hospital. I spent the night in A&E having various tests done. I can vaguely remember being admitted to a ward, but don't have much memory of what happened next.

The next thing I know, it's about three weeks later, and I'm waking up from life support with tubes in *every* orifice (there's a mental picture for you! ). It turns out that I've got Wegener's, and amongst other things, it's affected my kidneys. The cold symptoms came from pneumonia, which is what pushed me over the edge, after filling my lungs with fluid.

I've been told that normal kidney levels (creatine?) are around 100, but mine were over 1000! I had a temporary line fitted for plasma exchange and then dialysis, but thankfully my kidney function is returning so I don't need dialysis any more, and I've had the line removed.

The strangest thing I've found is the muscle wastage. I've lost about three stones since I was admitted, and it's all muscle. I basically had to learn to walk again, which I wasn't expecting! At the moment I would probably still struggle to pick up a two litre bottle of pop. It's one hell of a diet though!

I'm feeling a lot better now, and a lot more like myself again, and am back home, continuing treatment as an out patient, but I'm still very weak and feel like I'm constantly short of breath. I'm on a nice cocktail of drugs, which does help, but I could do without the twice weekly Eprex injections

[pberggren1]

Welcome to the family Ryan.

What are Eprex injections?

Good to hear your kidneys are doing better and you do not need dialysis any more.

[Tippon]

Thanks

Eprex is also known as EPO, and is an injection into the stomach to boost red blood cell production and fight anaemia. It's not a particularly bad injection, but I'm feeling like a pin cushion at the moment :P

[Sangye]

Nice to meet you Ryan. I'm glad you're out of the hospital and doing well with the treatment. I bet it's a huge relief to be off dialysis, eh? Don't worry about the weight you've lost-- thanks to pred you'll easily gain it back. And then some. Oy!

[Tippon]

Definitely glad to be off the dialysis, especially seeing as I had a line in my neck! It would be nice to keep some of the weight off though, I was a bit of a fatty before the Wegeners

[delorisdoe]

Definitely glad to be off the dialysis, especially seeing as I had a line in my neck! It would be nice to keep some of the weight off though, I was a bit of a fatty before the Wegeners

My favorite part of wgs too

[Jack]

I used to think that the initial weight loss was good until my wife told me that I did not look slim and healthy, but thin and ill!

[Gator]

Yikes. Hope you keep getting better man! And it's great you're off dialysis!

Is that Damian in your avatar? South park is great, that episode was from a while back too.

[drz]

I used to think that the initial weight loss was good until my wife told me that I did not look slim and healthy, but thin and ill!

Maybe that is why people often tell us we look better after we had a large weight gain from the prednisone. It bugs me when I feel like a walrus and got a face like Winston Churchill.

Does that irk anyone else too?

[Sangye]

Yeah. I don't like it when you look like Winston Churchill, either.