Personal experience of Wegeners

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%In 2008 I had a busy year, Working nightshift bringing up a 4 year old, pregnant, studying and to top it a all built a house. Had a beautiful boy with no problem on 28th Oct. Moved in to our dream home which we saved so hard for and I was looking forward to Christmas. Our house was over budget but I was going back to work early so that was no worry. I always had nosebleeds which began in my first pregnancy and for about 2 years my left nostril was blocked. I always had to blow out large hard bleedy chunks which was tube like. My eldest son took a sick bug which I then did. He got over that and his appetite returned mine didnot my bug like stomach pains left but I couldnt eat ,drink without vomiting. Up each night with a newborn I was tired. So Fatigued and then I turned yellow, coughing up blood. Locum G.P advised to get rid of kids for a day and was not worried about the blood. I had stopped urinating so went to another G.P who arranged a blood test. The results were so bad the whole surgery couldnt believe I was still standing. I was taken to Aberdeen Hospital where my life changed I was in Renal failure and had 9% function had a biopsy. plasma exchange which meant a central line in the neck. Transfusions for one so scared of needles and was never ill I faced alot. I was threatened with dialysis but never needed it. I now have 40% function I was diagnosed in Jan 2009 and by March I had a breakdown I Had 2 little boys and I was scared for them I had suffered a broken heart. I am a headstrong person who is capable of alot but this knocked me so hard. 6 months on I am feeling great and heading back to work My home is great and this Christmas is to be the best ever Im going to eat more than just one parsnip. Last year my little boy jumped into bed and said Santa has been I turned over and couldnt have cared my husband knew something was up as I always made an effort to make things special. What helped me most was getting in touch with at least one other person. I have now met 6 and a support group may be starting. When you are first diagnosed its bad especially when you have kids its every parents nightmare. My consultants are fantastic and I will be eternally greatful. The people who got in touch with me I thank for showing me that a normal life can be possible. Im getting back to cycling and walking and love taking the boys swimming. I dont think why me anymore I grab each day with both hands instead of cowering in the corner of the living room. I have only been on 1 antibiotic since Jan so am lucky regards infection. Its an emotional roller coaster but hearing from others is the best help especially positive stories. My story I have given permission to be used to gain awareness of the illness in order to tempt donations to research and the Renal ward in Aberdeen. I can now give something back. Much love to all affected by Wegeners Debbie

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  • Posted

    Ah Debbie

    Thats sounds just awful makes me want to get a hold of my senses. I have recently been diagnsoed with WG as well and have two young children. I am only 33 years of age and am totally devastated, it was caught on by an excellent ENT doctor after 3 different antibiotics failed to treat my severe sinusitis Ill not bore you with the crusty details as you have clearly experienced them yourself. I have been so lost with it all I couldnt look at my hubby or childrem for a fortnight and death was the only thing on my mind as i had made the mistake of looking up Wegeners on the internet which gives only a glum picture which is why Im glad Ive stumbled across this site where real people can share real experiences. ive been sarted on 60mgs prednisolone which Im reducing slowly and adding Azathiorpine on the advice of an Immunologist Im back to see him this week. They done some test had chest xray and it was clear however Ive jsut been told my 24 hour urine test showed low creatine clearance however the blood test showed my creatinine to be ok all confusing. Im not sure what this means but i guess he will point me in the right direction when i see him on Wednesday. Im hoping things have been caught while they are only mild on reflection things have been going on at least a year as i too have sufferd joint pains, mouth ulcers, UITs etc thinking they were all small complaints and not one HUGE complaint.

    listening tou you and your positivity has learnt me to be grateful for each day and not jump ahead of things. I hope you are doing well and maybe we will chat again sometime.

    Tracey

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  • Posted

    Dear Debbie,

    My go what a knightmare for you. I have just been diagnosed by a great ENT consultant after 2 lots of antibiotics failed to clear sinusitis. Have not been started on any drugs yet but going to see the consultant on Thursday. It is a relief to hear that i am not alone in the symptoms that i am experiencing and thank god that i found this site.

    I was beginning to go mad as even though my husband has read up about the disease he doesn't really get what the symptoms feel like and how you feel generally in yourself. I used to be quite active and was a very social person but at the moment i am struggling just to get around the house and hold some semblence of conversation with my husband (i just cannot be bothered) and boy and i glad to hear that this is something that happens to everyone.

    Would like to keep in touch to get into a group of like minded people so that we can alll help each other.

    Let me know if this appeals.

    Kazz. x

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  • Posted

    Hi, I have emailed privately my home number and I want you to use it. I know what it is like to be in your thirties with young children and you think there is no future. Nobody knows what its like other than people in the same position. I am 1 year and 5 months on and I feel great. I put on alot of weight but have now lost 1st 7lb. I walk about 3 miles every day. now that it is light at night I am out after supper with the kids. I constantly used to think of WG but not now. It is reasuring to talk to others so please call I would like to help you if I can. I am now on 5mg Pred and 100 Azathioprine. Regards Debbie
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  • Posted

    Hi Debbie

    Glad to hear you r feeling ok. I have unfortunately had a relapse in January which caused my kidneys to get a lot worse. They now at 6%. I have just had my fistula operation and am at clinic later this month hopefully they will tell me when i can start dialysis i am very tired all the time sleeping most of the day and night. I couldnt drive for 2 weeks after fistula op and last week I fractured my metatarsal so have to rest that for 4 weeks so cant drive again, so stuck in house at mo. I have just had another 4 lots of cyclophostamide and they upped my steroids again. Hopefully wont need any more cyclo but wegeners isnt going into remission at mo. I cant go on transplant list for 12 months after the wegeners is in remission so it looks like a while on dialysis yet. They have took me off the aza and hopefully when I go back to clinic they r going to start me on something else. Like I said glad to hear u feeling ok, keep looking after yourself and keep well.

    Lisa

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