Just curious.........

[Nadine99]

My husband has GPA (Wegener's) and it's coming under control with Rituximab, but he's had to have loads of operations to deal with symptoms that have arrived. He's had his Ulnar nerve moved (Cubital Tunnel), a Nerve on toe cut back, Squamous Carcenoma on his head, Triple Heart Bypass, Varicose Veins, Sinus Op, Grommets in his ears, Ingrowing toe nails removed, due to have Tear Ducts unblocked. We continue to deal with problems that arise and as he was never ill before the arrival of Wegener's in Oct 2010, we put this all down to his illness.

I was just curious to know if other people go through all these operations. I don't need a hobby, my hobby is now my husband; I even spent my birthday at Addenbrookes!!

Healthy wishes to you all, have a good summer.

[Cinders_999]

Hi Nadine, my heart goes out to you. I am a retired nurse of 73 years. I have so many Auto Immune Diseases, dating back to the 1970's when I was diagnosed with an Underactive Thyroid Gland. Since then I have Scleroderma, same family as Lupus, Raynaud's Disease, psoriasis, on top of which I have osteo arthritis. I now have some form of Vasculitis. Don't know which one yet & I don't really want to know. My feet suffer mostly with flaming soles & heels, putting me at risk of ulceration. At the same same my toes can be blue with cold due to the Raynaud's. Enough about my illnesses. What I want to say is that I spent so much time over the decades going from one specialist to another. Getting diagnosis was difficult as most of tha AID's are rare & with no cure. I found that my life & my husbands consisted of hospital waiting rooms & after the age of 70 I took matters into my own hands & decided to concentrate on having whatever quality of life I could manage with my husband. My doctor & I have a great relationship & helps me cope with the pain & inflammation with appropriate medication. I have an Advanced Decision Document which says what my wishes are about medical matters. However, My husband is in his 80's & he was finding it hard to look after me so I have a wonderful carer/best friend. I have no idea how old you & your husband are so my decisions about coping may not be appropriate for your husband. My husband has been a lot better since he was relieved from being a full time carer. He goes out & enjoys his own hobbies. I think this is essential for maintaining a balance in a relationship. I hope you find a solution to your problems & that you don't mind me sharing mine.

Good Luck

Cinders x

[SusanCh]

Hi I was diagnosed with WG in 2004 and have had to undergo lots of ops as a result of damage caused. Had cyclophosphamide to start with then onto Rituximab for a number of years. I had a trachey for 4 years and had lots of ops to dilate and laser scar tissue away followed by reconstruction in London.Grommets put in about 4 times as they fall out. Surgery to create a new tear duct following a flare. I had a saddle nose so had 2 reconstruction ops in London. Had bronchoscopies at Addenbrookes due to narrowing in lungs. Though all this my husband has been wonderful, we travel up and down the motorway to various apptmts. He also spent his 60th birthday at Addenbrookes, waiting for me to come round from bronch.

We have come to accept this as part of our new life, not one that we would have picked! We try to make visits a bit more enjoyable by staying over in a hotel and enjoying a meal out beforehand. It depends on how you feel.

We joke that our holidays are hospital visits. I am in a quiet spell so not contemplating any more surgery(touch wood) I try to take one day at a time.Some times things can become overwhelming but I always think there are others worse than me. It can be hard for the partner to have so much responsibility.

Hope you can enjoy the sun today.

Sue