Wegeners Granulomatosis (GPA) 10 Years On

10 Years – Since Intensive Care 

Hannah today – aged 35, with her dog Hetti 

10 years ago I was in an induced coma. I couldn’t breathe because my lungs were bleeding; in fact many of the blood vessels in my body were becoming inflamed and rupturing. The whites of my eyes were solidly red, my kidneys weren’t good, I was bruising wherever more than the lightest touch was needed and blood wasn’t getting to my extremities consistently. My plasma had been replaced and I was on all sorts of medicines in huge syringe drivers stacked all around the head of my bed with lines in my neck, my wrist and hand. 

I had already been in hospital for several weeks hearing doctors tell me they didn’t know what was wrong with me but that they were testing me for the likes of TB, HIV and rare kinds of cancer. I had allergic reactions to medicines, and all kinds of uncomfortable tests and biopsies. 

When I presented at A&E, I just thought that I wasn’t recovering quickly enough from a winter chest infection. I had already been to my GP several times in the few weeks prior and had been on antibiotics and steroids that were just not helping. I had been coughing up small amounts of blood regularly which I had convinced myself was from my very sore throat.

By the time I got to intensive care I knew that what I had was called “Wegener’s Granulomatosis” (now called Granulomatosis with Polyangiitis), a type of A.N.C.A Associated Vasculitis and my immune system was to blame. My own body was at war with itself: inflamed, angry, and attacking healthy cells. The doctors were working to put out the inferno in my body by dampening my immune system with Cyclophosphamide, very high doses of steroids, plasma exchange and everything and anything they thought might help even slightly.

I remember the night when I was put to sleep. My Mum and Dad were by my side and I, thankfully (and, I believe, in answer to prayer), was not aware of the gravity of what was happening. All I knew was that I was exhausted and I wanted to sleep and not be in pain anymore. It didn’t cross my mind that I might not wake up again. I had been minimally communicative for days as I’d been wearing a constant positive air pressure mask to force air into my lungs. Even if I’d felt the need, I wouldn’t have been able to say anything to my parents, but I remember the comfort of their faces above me and touch on my left hand.

I was intubated and placed on a ventilator. My parents were taken into a side room and told that it was extremely unlikely that I would make it through the weekend. My four siblings came to Derriford hospital, to my bedside, to say goodbye. My friends gathered together to pray that I would make it.

But 10 days later my eyes flickered open to a tugging in my throat. I didn’t know where I was, I didn’t know what was going on. I couldn’t move, my muscles had wasted to the point that I couldn’t even scratch my nose. I had a tube in my nose to my stomach giving me food. My feet were in bad shape having been the last on my body’s list for oxygen. My toes and parts of my feet were necrotic, dead. But I was alive and I was breathing on my own. 

For the first few days I was still heavily medicated and for most of the time was in a delirious state of happiness, but in my head I kept thinking “why are you so happy, you should be terrified”. Eventually the reality hit me and I became overwhelmed by what had happened. The consequences became clearer and Doctors came to my bedside with news that was difficult to hear- I would need surgery to remove the necrotic parts of my feet. 

My Feet – My most recent surgery was November 2020

This surgery would mean that I would possibly never walk again and that I would be permanently disabled. My lungs had taken a beating and would never fully recover and I had become so dangerously poorly so quickly that plans to preserve my fertility had been shelved in favour of plans to keep me breathing. I flipped between several different attitudes to all this information “at least I’m alive” was the one that more often than not came out of my mouth, but more complex feelings swam around in me too as I experienced the trauma in waves.

A new sort of life began, one of chronic illness and disability. I began a different relationship with my body and a different relationship with the world. 

With my niece at a family wedding about a year after ITU, My hair had grown back, but I was still on a lot of medication hence the “moonface”.

In the last ten years I have been treated in more than six different hospitals and had a lot of surgeries on my feet. I’ve had numerous procedures, infusions, medicine regimes and developed other chronic conditions such as T1 diabetes as a result of my wonky immune system. My right lung is scarred and has contracted so that my diaphragm has naturally moved further up into my chest to compensate and I have a condition called Bronchiectasis. There have been numerous needles, blood tests and drugs and if I could buy every Nurse, Doctor, Radiographer, and Health Care Assistant that I’ve met along the way a drink I would be very poor indeed!

The mental toll has been huge and I struggle with ICU related PTSD to the point that even the smell of cling film can reduce me to tears (it often smells like oxygen masks). Intensive Care aftercare has really improved in the last ten years, but I struggled to get the help I needed. This can still make hospital visits difficult for me and often completely catches me off guard, the noise of a medical machine or even sometimes the very specific taste of hospital tea can bring memories flooding back. 

These memories are not always traumatic, some make me laugh, like the time I asked the nurse with the drinks trolley where my flight was going and why I was in bed instead of a plane seat and some make me smile, like remembering my friend’s faces by my bedside.

When Vasculitis reared its ugly head in my life its presentation was quick and very aggressive. I was young, only 25 years old and probably the fittest and healthiest I’d ever been. 

For a long time I felt like my life was never going to be what I had planned it to be and that made me sad, under confident and depressed, but then I realised that I could make new plans. I didn’t feel up to returning to my demanding role in the Youth Offending Service and I had left school with just 4 GCSE’s as my education had been blighted by illness too when I struggled with post viral chronic fatigue due to Glandular Fever. So I decided to pursue the education I had missed and returned to college to take an Access to Higher Education Course. I then proceeded to take an English degree and then an MA in Victorian History and Literature and in September I hope to start a PhD. 

These undertakings have not been easy as I have been having various treatments along the way, have had Osteomyelitis in my amputation site on my left foot twice and I was diagnosed with Type One Diabetes in my second year at university. My life is the one I planned, the plans might not be the original ones, but they are mine and I’m proud of what I’ve achieved.

To mark 10 years since my diagnosis I told part of my story on social media and my family and friends donated £450 to Vasculitis UK. I am so grateful for the support I have received through this charity.

Mum and Dad – who look after me so well

Hannah Burden – Leicestershire