My name is Mandy Coles, I am 32 years of age and was  diagnosed with  Wegeners Granulomatosis in 1986 at the age of 16.

I was in year 11 at High School, healthy and happy, with no previous illness. The only problem of course being a chronic sinus problem for about 6 months which no doctor seemed to be able to cure. One day I started to have stomach cramps during an English class, stabbing pains which would come and go. My right foot was hurting a little and I felt 'fluey' Within a few days I could barely walk from feeling so weak, my foot was turning a lovely shade of grey, and every joint in my body was aching.

I was taken to Box Hill Hospital and the next few weeks were spent having every invasive, painful test imaginable and every conceivable scan until the doctors did not know what to do. My kidneys had failed, my lungs were seriously affected, my whole foot had turned black from gangrene, and I was not expected to live much longer.

My family were of course devastated and spent many hours in hospital with me, until amazingly enough, a medical student who had been through the ward on a 'round' had thought my symptoms had sounded very much like what he had been reading about in medical school the week before. The specialists decided to test me for this strange, rare disease called Wegeners Granulomatosis via an open lung biopsy, kidney biopsy and sinus biopsy, and from then I was diagnosed with WG. Finally they knew what was wrong! By this stage though I was in intensive care and extremely ill anyway, but they began the cyclophosphamide and prednisolone therapy. Such high doses, and I spent the next 2 weeks in intensive care. I was finally released from ICU and sent to the Austin Hospital where they had the appropriate dialysis equipment. I slowly began to recover. I looked terrible, but I felt better.

I spent over a month in hospital and was extremely pleased to be out. I began attempting teenage life again, of course this was not easy. I went back to school, but at 16 years of age, with my hair falling out and my face looking like it was going to explode, the weight gain and daily visits back to the hospital I decided to leave school. I began to work part time in childcare.

At 18 years of age I commenced premature menopause (due to the side effects of cyclophosphamide) then began the Hormone Replacement Therapy. I was one of the first in Melbourne to be placed on it. I spent a lot of time in and out of hospital, with setbacks like a Deep Vein Thrombosis and pulmonary embolism, shingles from being immunosuppressed, and many other problems. But by 19 years of age I decided to go back to school. I was given a complimentary pass in High School which allowed me to go onto Tafe, I spent a year there studying community services which gained me entry into University. I graduated with my Bachelor of Applied Science (Disability Studies - majoring in Pychology) in 1994. Finally!

It was a long 4 years as I relapsed in 1991 and had to begin therapy all over again. I had just previously been placed on Imuran instead of cyclophosphamide in 1991 as I had been on such high doses since 1987, unfortunately because of this, WG decided to raise its ugly head.   I can't even begin to describe how devastating this relapse was to me. The daily trauma of swallowing those handfuls of tablets again, knowing what side effects were awaiting, took its toll for sure. Extremely traumatic and so very frustrating as I imagined I had beaten this evil disease, but I now know, it never leaves, it just sometimes sleeps peacefully.

I had worked part time during uni at the Royal Victorian Institute for the Blind in the Early Intervention Centre and as night worker for the residential unit with four boys who were vision impaired and had epilepsy. I stayed doing this until I saved enough money to travel overseas with my closest friend, Karen. It was suggested I should not do this, but the disease was stable and Dr Judy Savige gave me the go-ahead. She wonderfully organised all of my prescriptions and referred me onto a specialist at the Hammersmith hospital in London for my arrival there.

I spent an incredible 4 months backpacking around Turkey and Europe until we made our way to England. I worked in England for almost a year as a Social Worker, had the best time and met some wonderful friends. My specialist was brilliant and monitored me closely. I had no major problems (with regards to WG anyway, the HRT was a different story!!)

Anyway, from there Karen and I decided to travel around the Middle East. We flew from London to Cairo, travelled through Egypt for a month, made our way to Jordan, spent 2 months in Jordan and then ended up in Israel. I had previously met a lovely man in Jordan and decided to return there while my friend decided to stay in Israel and work. It was a very sad parting!

I had a lovely 4 months in Jordan with Iyas until I decided I would return to Australia. I worked in Airlie Beach, Qld and Hamilton Island (also a magnificent time in my life) in the disability field until I decided to return to Jordan again. The things you do for love!! We married and spent another 2 and a ½ years living and working in Jordan, in a beautiful place called Aqaba on the Red Sea. I had never felt so fit and healthy in my life. I was working helping to begin a child abuse prevention program, water skiing everyday and I began instructing an aerobics class for the local women.  Fit, healthy and happy. Difficult to imagine really!

During my time overseas I of course had regular blood and urine tests. I learnt to read my own blood test reports and I also had two lovely doctors in England and Jordan. Luckily I had no major problems whilst I was away. Of course this could have been different, but I firmly believe the reason for my good fortune was the fact that I decided to 'forget' about it and enjoy myself. If this disease has done anything positive for me, its made me get out there and experience as much as I can. I've had a ball.

We have been back in Melbourne a year and a half now. Since October last year I have needed to make regular visits back to the Austin Hospital due to a scare with poor blood results and lesions on my right foot. But all seems fine until now. I am currently working at the Guide Dog Association of Victoria as Business Development Officer giving talks to healthcare professionals regarding neurological, orientation and guide dog mobility services for people with vision loss.

I consider I have been through and experienced a great deal, my friends and family have been magnificent and I can't thank them enough. My beautiful dad, John Coles, unfortunately and unfairly passed away recently of pancreatic cancer (bless you dad). My mum has been remarkable and such a great support during everything. Needless to say I love my family very much.

Overall, I have been both extremely unlucky and extremely lucky in a way; having been struck with this rare, incurable disease but then again having had such a wonderful life. I do not believe I will relapse again, I have been off all WG medications for two years now, I am only on HRT, blood pressure medication and Bactrim. I will be on these meds for the rest of my life, will constantly need to have tests to monitor the disease activity, biopsies on my bladder, cervix and uterus etc because of possible malignancy due to the Wegeners therapy, but hey, I could also be struck by lightning tomorrow!

If anybody in this support group wishes to ring and have a chat please feel free, I would be more than pleased.

A New Addition to the World

Hannah Jude Shaheen

Born: 7:16am on 16^th July 2005 – 5.5Lbs

It has been 3 years since I last wrote my history; so much has changed since then.

As is described in my history on the Wegener’s website (www.wegenersaustralia.com) I was diagnosed with Wegener’s Granulomatosis in April of 1987, at 16 years of age. I am now 35. My kidneys, lungs, sinuses and joints were all seriously involved; I also had gangrene of my right foot. I, like many others, am lucky to be alive to tell my wonderful story.

Due to my having to spend many years on high doses of Cyclophosphamide, Prednisolone etc I began premature menopause at the age of 18. I commenced HRT and was told I would never be able to have children as the Cyclophosphamide had destroyed my ovaries and even if this were not the case, I would never have the ability to carry a pregnancy due to my failing kidneys and general ill health. This was devastating news to me.

Therefore, I always believed my life would be without children and hence, once well enough, decided I would complete a degree in Disability and Psychology and spend my life working in health and community services and traveling the world. I did this on and off over the past ten years, during which time I met my husband, Iyas, in the Middle East. We have spent 8 fabulous married years either living in Jordan or Melbourne, working and traveling together. Just prior to my next doctor’s appt, we had decided to go to Lebanon with Volunteers Int. and work with children in a Palestinian refugee camp.

As I had been in a ‘non-chemical’ remission for the previous 5 years though, I decided to ask my Endocrinologist during a routine visit whether it would be possible to go through IVF using a donor egg. I of course expected the answer would be an outright no, infact don’t really know what possessed me to ask! After many tests, thought and deliberation, they actually gave me the go ahead! This was a massive shock to my family and I. Of course there were the many visits to my Nephrologists, ENT specialist, Endocrinologists, Obstetricians, Psychologists, etc discussing the possible risks (there were many) the major risk was the possibility of a relapse of WG. As I had previously always had sudden and severe relapses, this was a massive decision. There was also the risk to the potential fetus if I was to relapse before 24 weeks gestation. We decided to give it a go…

My husband and I went to the first IVF information session and with much trepidation signed up for a potential donor. Unbelievably, the next day, I received a call from the Psychologist, saying there was a potential donor who had listened to our questions in the info session, and had decided she wanted to meet us!!!!! I was in shock, as it usually takes an average of 3 years to reach the top of the egg recipient list! We met the donor, Nicole, the following week and discovered her and I had much in common. We had traveled to the same places (at the same time), lived in London at the same time, completed similar studies and had similar views on IVF, donors, recipient’s and what this means for the future of the prospective child. Iyas and I thought Nicole was wonderful and were so thankful to her for giving us this opportunity through the sheer goodness of her heart. After many compulsory-counselling sessions we all decided to begin the IVF process. I was told there would be a 15% chance of a pregnancy and a similar chance of the pregnancy being successful.

Miraculously, after the second implant, I was given the news I was pregnant. I was astounded! 

The next 9 months were critical. I continued my work for another 5 months, but part-time. I continued to exercise and eat a healthy diet. I had many visits to the doctors and was put on daily clexane (blood thinning) injections due to a past DVT and pulmonary embolism and I was taking all the appropriate vitamins and minerals. In the first trimester there was a sudden blow to my excitement, I went deaf in my right ear; tests showed I was having a flare of Wegener’s. I was terrified. The Prednisolone (30mg) began and all were watching to see whether Wegener’s would settle or hit my kidneys and lungs (I have always needed Cyclophosphamide and heavy doses of Prednisolone to suppress it – of course Cyclophosphamide is not a good idea if pregnant!) Staggeringly, it worked and my hearing even returned, although a ringing sound remains.

The remainder of the pregnancy was of course monitored closely, but all was stable. By 38 weeks I was induced as the baby had begun to grow too slowly due to the placenta not functioning properly. In addition, my kidneys were functioning less well, my protein levels were high and my blood pressure and ESR increased. My wonderful obstetrician, Prof Euan Wallace at Monash Medical Centre, was exceptional the entire 9 months and I believe made the correct decision. Finally I went into labor and 16 INTENSE hours later our beautiful daughter, Hannah, was born! We were ecstatic!

Hannah is now two months old and is just gorgeous! We love her to bits, even during those sleepless nights and challenging days! The staff at Monash were superb and extremely helpful. Actually I would recommend this hospital and especially my Obstetrician, Professor Euan Wallace in Maternal Fetal Medicine to any Wegener’s patient planning a pregnancy. Monash are becoming the specialists in problem pregnancies, especially people with autoimmune diseases. Prof Wallace has personally worked with 8 pregnant patients with Wegener’s in the past and is also planning to write a paper on Wegener’s in pregnancy. His details are included in the Doctor Database on the Wegener’s website.

Overall, I can’t express how lucky I have been and how happy we are to have Hannah in our lives. I am doing well, am still being monitored closely and need to be for the first 3 months after birth, as this tends to be a high-risk relapse period. Although I feel great and we are moving to Airlie Beach on the Whitsunday’s in a month as we have started a mini moke rental business – how life has changed! We still plan to continue with our volunteer work overseas, we just have to postpone until Hannah is old enough to join us!

Written by Mandy Coles 17 Sep 2005: Wegener’s patient and committee member