Diagnosed 3 weeks ago, only out of hospital for a week

[Luce]

Hi

Just wanted to introduce myself as another diagnosed with Wegener's. I'm only 25 and have just spent 2 weeks in hospital, firstly admitted due to a suspected pulmonary embolism. Then further investigation found blood in my urine as well as large blobs shown on a chest x-ray and I was diagnosed only 2 days into my stay.

I've currently had prednisolone and cyclophosphamide by IV as well as 6 plasma exchanges. My Wegener's is apparenlty quite aggressive because I've only shown symptoms for 6 weeks approximately and already my lungs and kidneys are quite damaged but doctors are quite optimisitc that the plasma exchanges have been very successful.

I'm due back for more blood tests and another cyclophosphamide IV next week and am currently on 60mg of oral prednisolone a day.

It's good to be able to read other's experiences of this disease as I'm still very much learning what Wegener's means and what my future holds.

I hope to speak to you all soon and compare my treatment in England with yours from around the world.

Luce
XxX

[andrew]

Hi Luce!! Welcome!
You were very lucky to get diagnosed so quickly. Your WG was certainly aggressive. You're on the standard treatment and it should serve you well over the coming weeks/months. Once things calm down for you, you'll probably go onto Cyclophosphamide tablets (Cytoxan). With time, both will probably be reduced but please don't give yourself too many expectations. Just take each day as it comes and don't try to do too much! Oh man, I'm channeling my mother

Have they got you on dialysis or were you lucky enough to miss that dubious pleasure?

I'm glad to see that you're out of hospital. How are you coping with day to day 'stuff'?

Again, welcome and it's a pleasure to have you as a part of this forum!

[Luce]

Thanks for the welcome Andrew and for your advice. I'm certainly learning to take each day as it comes and I am incredibly grateful to whichever doctor made the connection between my symptoms and diagnosed me so quickly. I understand that this can go unnoticed for many months and throughout the last few weeks I've maintained that I don't feel any more unwell than if I had the flu or a virus.

In hospital I started on an acute lung ward because of my chest x-ray but was then transferred to a renal unit in another hospital. Luckily I have avoided dialysis so far but met lots of people on the renal unit requiring it and it doesn't sound much fun.

I'm coping ok with day to day stuff, it's hard adjusting to not working 40 hours a week, but when I get tired after only taking a shower I realise there's no way I could do a day's work at the moment.
I'm starting to develop a lovely round face and am plowing through mountains of food but understand that's the prednisolone which they've reduced my dose of already.

The only other thing I will say is that its hard to relax when you're dealing with England's marvellous NHS system. I have to contact the hospital ward I was staying on today because when they discharged me last week they said I could expect a letter in the post with a clinic appointment for 2 weeks time. I have still not received a letter and am due the appt next week and have to arrange for bloods to be taken beforehand - unfortunately this is typical NHS and I have had to do an awful lot of chasing to get the treatment I've been told I need.

Still, it gives me something to do I guess!

Thanks again for the welcome, I'm sure I will be quite vocal on the forum given the lack of things to keep me occupied at the moment.

Regards
Luce

[andrew]

Luckily I have avoided dialysis so far but met lots of people on the renal unit requiring it and it doesn't sound much fun.

In the broad scheme of things, it's not the worst thing that can happen to you but in my case, it made me feel like crap. Thankfully it was only temporary while my kidneys came back 'online'.

I'm coping ok with day to day stuff, it's hard adjusting to not working 40 hours a week

Heh. I know the feeling. Spirit is willing but the flesh is weak The mind makes plans to do 50 things during the day but you end up maybe doing two or three and then falling asleep

I'm starting to develop a lovely round face and am plowing through mountains of food but understand that's the prednisolone which they've reduced my dose of already.

That's to be expected. Food was my absolute favourite thing when I was on the Pred. Come to think of it......it still is!

The only other thing I will say is that its hard to relax when you're dealing with England's marvellous NHS system.

Yeah, I've heard some horror stories. It's a shame that sick people can get sicker (sometimes) while being 'looked after' by the health system that's supposed to be there to help. People here in Australia complain about our system. I really don't know why they do. The system here certainly has its faults (what system doesn't?) but if you need care, you get it.

Thanks again for the welcome, I'm sure I will be quite vocal on the forum given the lack of things to keep me occupied at the moment.

Happy to have you here. Feel free to rant about anything!

[Jack]

I'll have to jump in here and say a few good words about the English NHS. Apart from the fact that I was not diagnosed until I was dieing (normal for Wegener's 20 years ago and not uncommon today), I get first class treatment. I can see my GP withing a few hours and have been referred to numerous specialists with a wait of only a few weeks. My vasculitis consultant or one of his doctors will see me anytime I have a problem.
I am perhaps lucky in that I live near a major teaching hospital (Queen Elizabeth Medical, Birmingham) and they are interested in finding out all they can and exploring new treatments.

Don't worry too much about the eating and weight gain. After trying to keep mine in check for many years, I'm now suffering from extreme weight loss and I can tell you that it's worse! Had months of tests from various departments, but no one can find the cause. Perhaps it is what happens to Wegener's sufferers after 20+ years?

I agree with the comments about dialysis. I don't think I would have lasted too long on it, but got a transplant in time.