Husband in hospital - just diagnosed with Wegener's

[nh_user_16524]

Hi all, my husband (39) was diagnosed with WG on Tuesday, and I was just researching on the internet when I came across this forum, so thought I would \"unload\", as I don't know you!

At the beginning of March he began to have hearing problems and was told he needed his ear syringed. By the time he went to the appointment, we pretty much suspected he had an ear infection, but he decided to have it done anyway. We went on holiday the following week, and he was feeling so rotten with flu-like symptoms, he thought about going to an out of hours doctor, but in the end decided the hassle wasn't worth it.

When we returned, he went back to his GP, who said he did have an ear infection and prescribed antibiotics for 7 days. About 2 days into the course, he developed aching joints and fatigue. Another 3 trips to the GP followed, plus an out of hours doctor visit at the weekend, with different antibiotics prescribed, during which time he developed swollen ankles and knees, a cough and various joint problems, which moved around from one joint to another every day. His GP arranged a blood test, which showed very high inflammatory markers, and arranged an immediate ENT appointment at the local hospital. This resulted in him being admitted 3 weeks ago for IV antibiotics for 2 days, but when they discharged him, he wasn't really feeling any better, the joint pains were worse, and he'd developed weird pinprick purple marks on his elbow which then turned into dark purple scabs after he was discharged. At this point he was convinced it was the antibiotics which were making him unwell, but as he'd been through every type available, I insisted that he didn't stop taking them.

All through this he was having such horrendous night sweats that I moved into my daughter's room, as he was literally soaking the bed every night (and I've got to get up for work at stupid o-clock).

He got to the point where he hadn't worked for 5 weeks (he's self-employed), could barely walk, and one hand swelled up to the point where he couldn't bend his fingers. Last Tuesday he started coughing up really alarmingly large amounts of blood, so we went to A&E, where the combination of coughing up blood and night sweats set alarm bells ringing and they suspected TB!

Luckily, one of the doctor's diagnosed vasculitis, and from that point they moved onto WG. He spent 2 days in ICU and is currently on HDU. He had chemo (cyclophosphamide) on day 2, and is also on prednisolone (hope I spelled that right), plus various antibiotics and loads of other stuff to counteract the chemo.

His kidneys have apparently not bee damaged, his heart is fine, and though there is some concern with his breathing, he seems to be getting a bit better each day.

I have been much heartened by what I have read recently, as this all happened very quickly, and I am hoping it was caught in time to prevent a very long recovery.

I suppose what I'm really here for is a bit of support and hope - we have two small children (a daughter aged 6 and a son aged 3 who miss him desperately but who are not allowed to visit at the moment), and I want to know what I can do and say to help with his recovery.

Sorry for such a long and rambling post!

Alison

[nh_user_9589]

Hi,

I was diagnosed at age 35. I was mum to a 4 year old boy and 9 week old baby boy. Believe me it was hard being away from them and I cried under the blankets all the time. It is a parents nightmare getting ill.

I had a hard 7 months getting well again and I pushed myself too hard at the beginning and had to slow up as my recovery was being comprimised. I have had WG for 2.5 years and now live with 40 % kidney function but I am very fit and well and my life is not hindered by it. I do however have to be careful if I get a cold as it can quickly go into a chest infection. My lungs bled too.

He needs lots of support, understanding to get well and encouragement. I found it emotionally hard and I was told once \" you are 35 not 85 why do you need so much help\" I am now a single Mum thereafter. My friend has had it for 27 years and has had 2 kidney transplants. I realised through her I could live long with this and raise my boys as planned. What helped me the most is talking and meeting people with the same illness because really they are in the same situation. Vasculitus UK formally known as SSVT is a good way to start. Good luck and give him lots of love. Debbie xxx

[nh_user_13701]

hi, i had much the same as your husband i had seen 13 different doctors before one said to me i think i know whats wrong with you. little did i know what was going to happen next chemo and a chemsit full of other drugs i have had wg now for 3 years, and although i am not as fit as i was im alive and very glad to be my doctors i have now are more like family they have been so good, but the one thing i take comfort from is talking to people who have wg they are the ones who know just how i feel. its a hard battle at first and you need family to help, like debbie has said a little at a time and when you have a good day dont go mad to prove that everything is good again you will pay for it the next day or so, i am in remission now have been for 12 months but i had a bit of a flare in feb this year that can happen but i did not go to the hospital at first and you must when your feeling better if you get sick the most important thing is to be seen asap by a doctor as debbie has said someone with a cold can often mean that you will get a chest infection. after all that please keep going there is a good life after getting wg Debbie if you read this i am back to my happy go lucky self saving to go to canada in 2 years time .

take care all jill

[nh_user_9589]

Hi Jill,

Well done you! Canada sounds great. When I first got WG I never looked to the future as I was too scared to somehow which for me was odd as I was always such a planner and organiser. I do plan now and I think if we do that it means we are getting comfortable with our diagnosis.

Love Debbie