I thought I would write an account of how I was diagnosed and my own personal experience going from caring for patients to suddenly being the patient feeling very afraid and alone.
I had been under the care of a renal doctor for many years with kidney impairment, after having my right kidney removed 14 years due to poor function and high blood pressure and constant infections. I worked full time as a senior sister in a casualty unit.
My dad died suddenly aged 64 in October 1998 and I immediately Had flu and then a chest infection for over 6 weeks and I just didn't feel well. In the beginning I put it down to the shock of my dads death. By Christmas I was having nosebleeds, bruising on my body and sinus problems, breathing problems and feeling very down. I went to my Gp who diagnosed depression and asthma and gave me an inhaler and anti depressants !!!!! I then started experiencing facial swelling and the nosebleeds intensified, sometimes I would be in the bathroom for an hour trying to stop it. I went to A & E they told me I had an allergy and sinus infection. More antibiotics followed to no avail. By May 1999 the bridge of the nose had began to change it's appearance ( saddle nose deformity as I now know) so I returned again to my Gp and insisted a referral to ENT specialist. During this time I was still having 3-6 month check ups with the renal specialist who never ever commented on any of my abnormal blood results or changing appearance !!!!
At the follow up ENT appointment was informed that the sinus x rays were normal and that I must have had a bad case of sinusitis and told I would be discharged with no follow up or treatment. By now I knew something was very very wrong, but not what,so I refused to leave the clinic until I had seen the Consultant.
The ENT consultant took one look at me and then asked me was it normal for me to have many bruises on my arms and legs, informed him renal specialist said it was because by now I had chronic renal failure !! He then asked had I experienced joint pains and was I born with the dip in the bridge of my nose. By now I was wondering why was he asking these questions when I had come about my nose. He tried to look up my nose but I ended up suffering from one of my very heavy nosebleeds.I asked him what did he think was wrong , he then said I think you have Wegeners and you will need an urgent nasal biopsy and then if I'm correct in my diagnosis chemotherapy and steroids. I remember asking what is this condition, is it cancer ? He declined to answer my questions and said let's just wait sew hate what the biopsy reveals !!!!
The nasal biopsy confirmed WG and I started Cyclo and steroids for the next 3 months.
I had never ever heard of this before and felt very frightened for the future. I was also referred to a Rheumatologist who specialized in WG, who tried to explain what this condition was. I had gone onto the Internet but was very upset that at that time the literature was quite negative about the outcome. I also joined a local support group in Essex ( William Godfrey Vasculitis support group ) which at that time consisted of only 6 members I found this group invaluable and reassuring, I stayed for 10 years later becoming the fund raising co ordinator.
I finished the IV pulses in September 1999 and went onto oral Cyclo, but was unable to tolerate it due to side effects and switched to Methotrexate. I then had a relapse in January 2000, which thankfully I was aware could happen as my fellow support group members said could happen, so I was able to accept this more easily. I started Cyclo and steroid pulses again this time every 4 weeks and went back in remission within a few months.
I was very lucky to meet Dr Jayne, from Addenbrookes at a conference and asked could I be transferred to his care as I had no faith in the renal consultant I had been seeing at my local hospital. By now I had stage 4 renal failure. So I was then started on Mycophenolate and was well for a few years and back at work as a nurse but then experienced Pneumonia and was taken off this as it suppressed my immune system too much leaving me prone to infections. I then started infusions of Rutiximab which I have been having for the past 4 years . I call it my wonder drug, as I never seem to stay in remission for that long, I was able to continue to work up until this year when what with the WG and renal failure I have had to take I'll health retirement, aged 50. Which was a very hard decision to make. I can now rest when I feel unwell and no longer have to drag myself out of bed to go to work.
I had my last treatment in May this year after having this every 6 months,Dr Jayne does not want me to have anymore Rutiximab for at least a year as he is concerned my good antibodies are being reduced. At the present time i' am experiencing extreme fatigue, vertigo and now eye twitching. Look like I'm drunk and winking at everyone Lol !!!! I will just have to see what DJ says next month when I see him.
Things have changed for the better with advancing treatments since I was diagnosed and this website is invaluable and I congratulate everyone involved in the setting up of this very supportive and informative website.
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