wg and breathlesness

[kath12341]

Had wg since 2007 found that if i get over tired I get brethless and have managed to conyrol this by taking annual leave felxi from work. Have had 2 hospital admissions for severe breathleness and have just returned to work after 7 weeks off. I have done two part time shifts of 2 hrs where all i did was check emails. monday went to hospital for blood test tuesday had lunch with sister and had to be helped back to the car through shortness of breath but lung heat function test x rays all okay anyone else find they suffer in this way

[John_Mills Volunteer]

Hi Kath,

I have had WG since 2001. I used to suffer with quite severe breathlessness (the WG affected my lungs) even though the WG seemed to be under control. Like you, the lung function tests seemed ok. Then, in 2007, I had a dvt in my leg - nobody told me then that ifyou have vasculitis you have a increased risk of thrombosis. So I was put on anti-coagulants, Warfarin. Amazingly, although my leg continues to cause me problems I do not suffer so badly with breathlessness. My consultant thought that maybe the breathlessness had been caused by many mini-emboli in the lungs - tiny bits of blood clots that had broken off bigger clots elsewhere and got trapped in the tiny capillaries in the lungs. Only a theory and my personal experience. But you could just mention it to your doc, for what it's worth.

Best wishes John

[kath12341 in reply to John_Mills]

Thanks John I know this was what they were concened with 1st time I was hospitalised with this and had ct scan with some dye injected to check lungs. only had x ray this time on admission the dr asked if I had asthma as heard a rattle in my chest but next day this was clear When the consultant listened chest was clear Really Bamboozled as what to do next. Dont want to have to take any more meds But it looks like medical reirment looming large.Had ohs referall through work while off we use atos and her cousin suffers with wg so had some idea of the seriousness and problems Also had cellulitis in lungs when first diagnosed but thast cleared up so dont know if this wouldshow on x ray

[PatriciaAnn]

Hi Kath

I have WG in my trachea and nose so breathlessness and wheeze have always been my major symptoms. Sometimes I sound like a traction engine or someone who smokes 50 Capstan full strength cigs a day.

I'm fortunate in that I don't have to go out to work. When my symptoms increase I slow down. Well, actually, I don't have any choice. I figured out a long time ago that I can't beat it so I don't try.

Hope all goes well with the medical examination.

PatriciaAnn

[nannie]

Hi Kath, I have had WG for 9 years. I have always been a bit breathless but the last few months it has been really bad. I have had all sorts of tests but nothing shows up. I can only walk for 3-4 minutes and as I don't drive, it's making me virtually housebound.

I have been taking warfarin for the last 16 years so I don't really know if it helps.

I find it hard to understand how I can be feeling so bad but nothing shows up.

Lets hope they can come up with some answers for us! Let me know how you get on.

Christine x

[kath12341 in reply to nannie]

Thanks Iwill let you know if I get any answers. Waiting for my next appointment, some comment i just heard on tv was that kidney problems can cause breathlesness So will get More Advice from consultant have had 3 urinary tract infections in last 6 months who know?