Hello All,
I've had WG for 19 years (I'm 31).
I had a horrible cough I couldn't shake for weeks which got progressively worse, the joints in my elbows then seized up and I could not straighten my arms. My GP diagnosed a number of things such as Asthma etc.
Cough got worse and I started coughing up blood, had various blood tests which baffled the Doctors as they could not work out what was wrong, eventually started getting very weak and not eating and I then had a lung x-ray which showed some worrying signs.
Immediately admitted to hospital where it was discovered my kidneys had failed and Wegeners was suspected, transferred to the renal unit at a Children's Hospital and wasn't expected to make it through the night, I don't remember much apart from a priest coming to give me the last rights.
Somehow made it through the night and had a tube inserted for Plasma exchanges that morning and a Kidney Biopsy taken (lungs were luckily ok). Started on Cyclophosphamide and various other treatments and slowly started improving. They put me on limited liquids which I found hard, I used to look forward to brushing my teeth so I could take a few sneaky sucks of a wet toothbrush.
The plasma exchanges and drugs started working and my kidney function began to improve and after over a month or maybe longer in hospital I came home still taking Cyclophosphamide and prednisone, I had some slight kidney damage and they now run at about 75% of capacity.
Slowly reduced the Cyclophoshamide and came off after about 3 months, Prednisone was another year or so and then onto some Blood Pressure treatments.
I lost a lot of weight (the dreadful hospital food didn?t help) but the Pred soon had me eating a lot and gaining weight.
Had a brief relapse at 18 when my nose cartilage collapsed (only symptom) which got fixed with surgery. Been in remission and off meds (apart from BP) for over 13 years now.
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