I was diagnosed with GPA in March 2005 at 28 years old, but my undiagnosed symptoms started a few years before that. It all started with regular nose bleeds but when I developed a headache that wouldn’t pass and I hadn’t slept in four or five days, I finally went to my GP. He gave me stronger pain relief and arranged an appointment with the ENT department at the hospital.
The ENT doctor examined my nose and found that my nasal passages were virtually blocked by a build-up of crusting and he could see some damage to my septum, so he took a biopsy from my nose and a blood sample for testing. I eventually received a letter which informed me that I had a condition called Wegener’s Granulomatosis (which we now know as GPA). There was no other information except that I’d need to see the renal department next.
I searched the internet for information but struggled to find anything UK based, most of what I could find was from the USA and the thing I remember most was the very poor long-term prognosis. This came as a shock, especially with how generic the letter with my diagnosis had been. At my appointment with the renal specialist, he gave me a bit more information about the condition, but I still didn’t really know what was happening. He told me how it could potentially be treated but, because my only symptoms were nasal, he felt the potential side effects from medication outweighed the benefits. So, it was decided that I’d attend the renal department every six months for monitoring instead. Twice a year I’d attend my appointment, have blood tests and be reassured everything was fine. It got to the point where I was feeling more or less ok and few years had passed so I barely thought about my condition.
Then, in early 2011, I read in our local newspaper about a fun run that was happening in a nearby park which was to raise funds and awareness for a charity set up in memory of a local girl who had sadly passed away at 15 from GPA, the same condition that I’d been putting to the back of my mind for the last six years. I went along on the day and got to meet Grant and Adrienne and hear a bit about Lauren’s story and the Lauren Currie Twilight Foundation (LCTF). It was also the first time I got to meet people like me with Vasculitis.
By the end of 2011 I noticed my left eye was becoming very weepy. My renal check-up around February went as normal but shortly after, things started to deteriorate. My left eye and nose became swollen and I looked like I had a black eye. I also developed ulcers on my leg and chest which all started to ring alarm bells. After visiting my GP, he referred me to an ophthalmologist and dermatologist as quickly as he could, and I tried to get myself back to see the renal department. By August I still hadn’t got any help although I did have an upcoming ophthalmology appointment. By now I was really struggling to cope with the stress of everything. It eventually got too much and, after breaking down in front of my GP, he signed me off work. This was now September 2012.
When the ophthalmologist examined me, he was more or less certain that it was the GPA flaring that was causing my symptoms but wanted to take a biopsy from my nose to confirm this. I was to have the biopsy taken two days later under general anaesthetic and it was such a relief that something was finally happening. I woke up from the anaesthesia to find one of the renal doctors beside my bed, she told me that she didn’t want to wait for the biopsy results and had arranged a place for me in the renal ward, suggesting I go home, get what I needed and come back in to start immediately on immunosuppression medication. I spent two weeks on the ward getting started on the medication, initially Cyclophosphamide and Prednisolone to shock my immune system into submission. Even though this was quite scary it was a weight lifted from me knowing that at last I was getting the treatment I needed.
In the six months it took to get to this point, unfortunately the tissue where I had the swelling around my eye and nose had been starved of blood supply. This led to some of the skin and cartilage deteriorating, to the point where I was left with a hole in the corner of my eye socket leading straight into my nasal cavity. I had lost so much of my septum that I now have saddle nose which is probably beyond repair. After having a CT scan, it was discovered I had also suffered bone loss around my eye sockets. If I hadn’t started treatment when I did, it’s thought that I’d eventually have lost my sight as the muscle attachments would have become damaged. After three months, I was changed from Cyclophosphamide onto Azathioprine which I still take today. I’ve been lucky that my body accepted all the different drugs I’ve had to take and thankfully didn’t suffer any real side effects. I improved quickly and felt much more like myself again, other than being self-conscious about the hole at my eye. Luckily, I was eventually able to undergo surgery to repair this.
The only side effect I did suffer was weight gain. In five years I gained 10 stones in weight. Several things led to this gain- no longer doing a physical job, my inability to exercise for over a year due to an abdominal hernia, and the steroids I was taking. So, when I began overeating through boredom it was a recipe for disaster.
By 2017 I had reached 26 and a half stones but thankfully my vasculitis was in remission. I’ve always been a keen walker, but I noticed I was getting breathless and tight across the chest, I just thought it was me being overweight and unfit. During a visit to see the nurse, I mentioned it and soon found myself hooked up to an ECG machine and sitting in front of a doctor. I left the surgery that day on aspirin, beta blockers, blood pressure medication, angina medication and with a referral to see a cardiologist. I had to attend the hospital for some tests first but, when I got to see the cardiologist around October, he told me that there was a problem with my heart but to find out what was wrong I’d need to have an angiogram. Unfortunately, I was too heavy for the operating table used for this procedure and he said I would need to lose at least a stone before it would be possible. He suggested that if I was unable to lose weight by myself, I should seriously consider bariatric surgery. The medication helped with my symptoms letting me to go for a 20-30 minute walk each day, but to lose weight I knew I had to address my diet too. By Christmas time I had lost a stone but was beginning to struggle to keep it going. I was worried about putting it back on before my next appointment with the cardiologist, so I decided once Christmas was behind me I would get some help. I did some research looking at all the different weight loss groups and decided that I’d give Slimming World a try. On the 8th of January 2018 I walked through the door along with my sister who had decided to join too, probably to support me as much as anything else, and I weighed in that night at 25 and a half stones.
My follow up appointment at the cardiologist was in the July by which time I’d managed to lose 7 and a half stones getting down to 18 stones. The doctor was amazed at my progress and pleased to hear that I no longer had any symptoms relating to my chest. He decided that the angiogram was now unnecessary, he did still want to send me for an exercise tolerance test to see how my heart performed. When I went for the test, they found that my heart was now functioning normally and that the problem was caused by restriction from all the visceral fat that had formed around it.
As well as going to Slimming World, I had been increasing my exercise all the time pushing myself as much as possible-I joined a gym, cycled, increased my walking distance and started doing some running too. I stopped taking all the heart related medication at the beginning of 2019 and on the 25th of February I decided I was now happy with my weight. In total I had now lost 13 and a half stones, 12 and a half in 14 months with Slimming World plus the stone I’d lost myself. I was lighter now at 41 than when I finished high school and fitter than at any time in my life. In 2018 I’d walked over 2000 miles, climbed Ben Lomond, and, on the week I reached my goal weight, I managed three 10 kilometre runs.
A year on in March 2019, I managed to get myself a job and return to the world of work after nearly seven and a half years of being signed off. This brings me to where I am today- fit and well, working and managing to maintain my weight. I have had my challenges on this journey but luckily, I had amazing support from my family and the LCTF throughout it all. I found reserves of strength and determination I didn’t know were there and I have a much clearer idea of the important things in my life. For me it’s my family, friendships, health and happiness.
Vasculitis is a horrible condition and it affects us in many different ways, our journeys are all unique but when we listen to each other’s stories there’s always things we can relate to. It’s a serious condition, especially when untreated, but the treatments available and outlook for patients are so much better than it used to be. As always though, getting that crucial diagnosis can still prove difficult.
The message I’d give to someone diagnosed today is try not to let yourself be overwhelmed by it all, deal with what’s happening now. If you start worrying about what if this or that happens, then you will only add to the problems you already have. We all suffer a combination of different symptoms, so just because something happened to me or anyone else doesn’t mean it will happen to you. Take the time to make sure you are looking after yourself the best you can. Talk to people and don’t try to go it alone. If you don’t want to worry family or friends with certain things, then the LCTF group have so many people and resources at your disposal. Lastly, life may not be the same as it was before, I know for me in many ways it’s actually better. So, don’t think that this is how things will always be, it’s simply the start of another chapter of what could still be a long story with many more good bits than bad.