New Member from Australia

[dunkie2202]

G'day Everyone,

My name is Catherine, I'm 47 yrs old from Australia and was told 8 weeks ago that I have this sucky disease called Wegeners Granulamatosis. I don't know how long I've had it for cause I've had some symptoms that have gone back 2 yrs ago.
I had a bad chest infection Nov 08 and was coughing up a bit of blood, the doctor that treated me never tested me for anything he just kept giving me antibiodics until it cleared up 8 weeks later. But I still suffered with headaches, sinus, sore throats, aching limbs and kidney infections from then onwards.
In April this year, the servere pain started in my legs. after putting up with it for two weeks I went to the doctors and he ran some blood tests then put me on Celebrex ( anti inflammitory ) and pain killers.
My tests come back, C-RP was 24 and the doctor decided that the problem was osteoarthitis. A month later I had a fall at work ( tripped on an electric blanket cord ) and hurt my right knee.
MRI showed not only osteoarthritis but also torn cartlidge and a metal artefact inbedded in my knee.( Long story short, turns out the metal artefact is a vascular clamp left behind from when I had my veins stripped back in 2000.)
Ok so now I'm on light duties at work and having physio for my knee when I start feeling very unwell.
Couldn't eat or sleep, gastric reflux was giving me hell feeling really run down and then I noticed these random sore's popping up on me. So I go back to the doctors he took one look at me and said I had chicken pox... Yeah right I had them when I was a kid, I didn't get them when my four boys had them why would I have them now. I just couldn't believe it...
But I knew it was someting else because I have never felt that crook, I couldn't even keep water down and my back was killing me. By that weekend I noticed the blood in my urine and rang the hospital. They told me to grab a sample and come straight down. On arrival the nurses tested my sample and called the doctor. All the results from the test strip were off the chart, large blood, protein etc. The doctor put me on a drip with antibiodics and released me three hours later. I was told to have my urine re-checked three days after finishing med's I didn't quite make it. All hell hit the fan two days later when I started coughing up blood. I was terrifed and rang my family doctor of 20 yrs and said something is really wrong, she agreed and sent me for blood tests.
The phone rang at 5.00pm and my doctor told me to get to the city hospital ( an hours drive away ) they were expecting me, my creatinine was 445 my kidneys were failing. 10 mins later she rang again and said take a bag you need a blood transfusion as well. My husband was on his way home from work when I called him. By the time I got to the hospital I was having trouble breathing. I went down hill so quickly by 8.00 I was on 8 ltre's of oxygen they were rushing me from one test to another. Chest X-rays, blood tests, CT Scan, First Blood Transfusion, Oxygen and a drip of Prednisone then admitted and transfered to ICU.
The next four days were the same more tests, blood transfusions, dialysis, Prednisone drip then the kidney biopsy......Diagnosis confirmed Wegeners
Continued with blood transfusion's, blood tests, lot's of tablets, Dialysis and finally Chemo.
After 8 days in the Country Hospital I was flown down to Sydney RPA Hospital for furthur treatment.
5 days of Plasma Exchange, Dialysis and higher doses of med's followed. Things finally started to mellow out a bit.... I no longer coughed up blood, I didn't need oxygen or dialysis and I could walk around unaided. I felt much better not out of the woods but much better.
They sent me home by day 14 and since then Ive had another 2 lots of Cytoxin. My Creatinine is currently 275 Urea is 25 and GFB is 16.
My Predisone has been weaned down to 25mg I was on 75mg, and I'm on the usual blood pressure pills, Caltrate, 2 diff Vitamin D, Dapsone ( because I'm allergic to Bactrium) Somac, Valaciclovir, Fluid tablets, Aranesp Needles.
Well that's my story story so far. I'm glad I have a loving caring husband he has been my rock. After 28 yrs of looking after him I never thought the shoe would be on the other foot and he would have to care for me. But he does it very well god bless him.
This disease really is alot to take in, and I'm so glad I found this site. I've been reading your posts for the past few weeks and it has given me a better understanding of it. Thankyou each of you for sharing.

[Jack]

Hi Catherine,

Welcome to the Forum and thanks for telling your story. It helps others to put their own situation in perspective.

Sounds like you had a close call there, but unfortunately your experience is far from unique with doctors trying to treat individual symptoms and not putting the whole picture together. It is always easy to do with hindsight. At least you now have a diagnosis and are receiving treatment so the prognosis should be quite good. Have you any idea how much kidney damage you sustained?
With any luck you should now continue to slowly improve and can hope to achieve a reasonable level of fitness, not to say that there won't be a few problems along the way. If you think of any questions, please feel free to ask and I'm sure you will get a flood of good advice!

[dunkie2202]

Hey Jack,

Nice to meet you. my Nephrologist said that the biopsy showed a lot of old scaring granuloma and only a few new ones. She said they looked pretty bad and it would be only a matter of maybe week's or a couple months but eventually I would need to go on dialysis 3 days a week. My feet and legs are so swollen now with fluid it makes it hard to walk.

[Jack]

That was the same position that I was in - kidneys too bad to survive and went onto dialysis after less than a year. I used CAPD four times a day because this fitted in best with work. After 18 months, I was lucky enough to receive a transplant which changed my life . That was 20 years ago and it is still doing fine, in fact it is probably the best bit of me!

[dunkie2202]

OH ok so do you still suffer with flare ups since the kidney transplant? WG is so involved it's a lot to get your head around. So i'll appologise now if i'm asking stupid questions. CAPD is that the home dialysis through the stomach?

[Jack]

Yes, CAPD is where you do fluid exchanges through a catheter into the abdomen.

It took me about four years to get the Wegener's completely stable and this was achieved when Cellcept became available. I then had 20 years without flare up and for much of this I was reasonably healthy apart from the odd setback here and there. Over the past five years, I have started to suffer a lot from long term drug side effects, particularly from the effects of steroids and this has meant that I have had to take early retirement.

Do not necessarily try to read my own experience across to your condition. Wegener's is such an individual thing that no one can predict which direction it may take and it also depends a lot on the expertise of the doctors treating you. I'm sure you will soon be asked if you are being treated by a Vasculitis specialist. Handling the treatment of this disease is often beyond the experience of the general Rhumy or Nephrologist.

WG is so involved it's a lot to get your head around. So i'll appologise now if i'm asking stupid questions.

You will soon become your own expert.
There are no stupid questions.

[Hal]

Catherine, as someone else recentlyy diagnosed, I can emphathize with your pain and frustration. You will get a lot of good advice here, and I found it very theraputic, like yourself, to be able to share your experiences. Like yourself, my feet and legs are now swollen and it is hard to walk. I have nerve damage in my feet, which is making it a double-whammy for me. Look after yourself and try to get plenty of rest.

[Sangye]

Hi Catherine, welcome to the group! I'm glad they diagnosed you before you lost your kidneys (or lungs) altogether, though I'm really sorry for what you went through. Here's a thread with info especially for you! What the Newly-Diagnosed Need to Know

Please ask us anything you like. The diagnosis is overwhelming. Are you still on cytoxan (chemo)?

Also, for the future, if you ever start coughing up blood again, get to an ER immediately. Your doctor was wrong to send you for blood tests first. Coughing up blood can quickly become a massive lung hemorrhage. Last year I started coughing up blood and I called my Wegs doc. He said to take an ambulance to the hospital. The local hospital is terrible, and JHU is 1.5 hrs away. I didn't want to waste my time in the local hospital trying to get transferred, so I had a friend drive me to JHU. My doc knew I was doing it and was very upset with me. I understood the risk. Thankfully I got there okay but I was scared the whole way.

[elephant]

Welcome Catherine, your story sounds a little like mine execpt bleeding in the lungs. Wegeners attacked my kidneys and I had a kidney transplant in 1989 and I was blessed to have a brother who donated his kidney to me. It is a long journey with ups and downs but you will get through this, we are here to help anytime.

[eileenv]

Welcome Catherine, sorry to hear of terrible exsperiance it truly frightensme when i hear of these what i can only describe as horror stories till they finally hit the nail on the head so to speak, i wish you well, hope you continue to make an improvement