Newly diagnosed

[Issy-ivor19]

My hubby has been ill since Nov and in hospital since April. He was initially diagnosed with fatty liver disease, he had all the normal cancer symptoms weight loss, fatigue, drenching sweats but GP kept insisting it was his liver. Went into hospital with sub clavian DVT, then developed another DVT. His symptoms accelerated and became quite aggressive, swelling, phlebitis, extreme pain, rash, painful burning lumps. Swollen eyes, burst vessels behind eyes, reduced hearing, swollen sore throats, enlarged liver and spleen, breathing problems, heart svt's etc. He has slept for days a a time and has experienced episodes of confusion. He has been tested for just about everything and all results generally come back negative or normal with a few exceptions. We have now been told that thankfully he has no cancer cells in his body and they believe he has vasculitis. It has been such a traumatic few months for both of us and mostly we just feel frightened about where we go from here and what life will be like. He hasn't started any treatment yet.

[John_Mills Volunteer]

Hi Issy, From the description of the symptoms you give, it sounds as though your husband has ANCA associated vasculitis - probably Wegeners Granulomatosis (or GPA).

You did not mention if there is any suggestion of kidney involvement.

Now the disease has been diagnosed, it needs to be treated with some urgency as prompt, appropriate and effective treatment can lead to a full recovery; the longer it is delayed, the greater the risk of permanent damage to the organs which are affected. If you would like to send a private message with your postal address I can send you some more information and answer any other questions you may have.

Best wishes to you both

John

[Issy-ivor19 in reply to John_Mills]

Hello John

Thank you so much for responding, it's so terrifying finding ourselves in this situation and I feel like my husband is a bit of an oddity in the hospital. He came home for his first day leave yesterday and went back last night with "another" urine infection. So I guess there is some kidney involvement. I'm going to try to private message you now, and thank you again for responding, I feel so alone with this.

Many thanks

Issy

[John_Mills Volunteer in reply to Issy-ivor19]

I have received your private message Issy

John

[hamble99b Volunteer]

hi Issy,

I tried to reply to you when you first posted but there was a problem.

I'm glad that you are in touch with John.

please come back on and let us know how your husband is.

if we can support you in any way, we will.

Im usually on of an evening.

regards,

sandra.