The story of Claudia
My name is Claudia and I am currently living in London. I have been feeling unwell since 2018, with flu like symptoms and was wrongly diagnosed with Sarcoidosis in 2018. I have been correctly diagnosed at the beginning of March 2019 with ANCA PR3 positive associated Vasculitis and GBM and spent a month in the hospital. Looking back at that experience now the words of my husband come to mind – but you walk in the hospital on your own two feet! It was a pretty distressing experience, that started with my GP calling me one Monday morning, at the end of February 2019 and insisting I go to the hospital since my kidney function is around 15%. I had not been feeling good for quite a while at that point in time, feeling extremely tired and I remember feeling relieved I was on annual leave. At the hospital, they said they will keep me overnight. And one night turned into two and the next thing you know it I was transferred to Hammersmith hospital, where I was till 26 March 2019. I remember the frustration of not understanding what is happening, of not getting answers, of feeling I should not be there since I am just tired! Next treatments such as plasma transfer and cyclophosphamide followed, that my body did not easily endured. The most frightening thing is that I have a few days spent in the hospital I do not remember – I was in ICU since I had a blood cloth that travelled to my lungs and to my heart. Well, I am not good at remembering the medical details, but what I do remember is my husband going to buy apples for me and next I woke up and saw my mom by my bedside. I also remember the cold air coming through that oxygen mask I had to wear, the sound of those machines around the room, the fact that I could hear but not see other patients , the small chat of the nurses, the morning visits done by a large group of medical staff, the night time visits done by the lobotomists, the fact that everyone coming to see me would introduce themselves and I can never remember names, but I do remember faces , the moment when I just feel asleep with a bowl of cereals in my hand, everyone’s faces looking very glad to see me and talk to me and my husband’s face. You know what help me stop thinking about why I don’t remember the time I spent in ICU? A medical professional, that was asking me weird things like, what year it is, or if I can draw a clock or if I can make a tea, also gave me a beautiful explanation for my lack of memories related to those moments. She said my body was in a big distress, was fighting to survive and it allocated all its resources in that direction, not focusing on making memories. Those words help and I also got the feeling I do not remember what happen since I need to focus on the positive, now more than ever.
It was not easy to my head around what is that I have, since is not very straight forward and no patient is the same. I guess that is one of the things what I find very frustrating about having a rare illness – the treatment is a lot of trial and error, trying to figure out what works for you . Being diagnosed with a rare autoimmune illness changes your life completely, since you always need to pay attention to what your body is telling you and you have to think twice before doing even the smallest things you used to take for granted before. I perceive this illness as a hidden enemy, always there, lurking in the shadow, ready to come out and attack when you least expect. But what is Vasculitis – basically is your own immune system working overtime, creating inflammation in the body and attacking healthy organs ( in my case it was the kidneys ) . What is GMB – anti-glomerular disease also known as Goodpasture’s disease, is a rare condition that causes inflammation of the small blood vessels in the kidney and lungs. Both of them are long life illnesses, there is no cure but there is treatment meant to keep you in remission ( the time when your illness is not active) Plus you are constantly taking hospital trips. You go to the hospital that often that you get to know the staff working there. As a child , I was never afraid of injections, needles of any sort , but now since they take my blood every four to six weeks I dread needles. And now with this pandemic and being mainly at home, you really feel the impact living with an autoimmune illness. Going to the hospital for an appointment is the time I get out and I also have the chance to take a walk. But I guess this teaches you to be grateful for what is good in your life and to notice things you never noticed before. I am grateful to have someone who understand this illness better than me, is asking the right questions to the doctors, ensures I get the best medical care available and was , is and will always be by my side – my husband. I am also grateful for having my friends and family keeping in touch with me even if we can not meet face to face at this point. And I am also grateful that even if things were very bad for me at some point in my life, they have improved – and the best proof is the photo I have attached here.
I am finding ways to deal with it daily and I am still mourning for the time I was healthy. Guess it will take years to find ways to cope with things, but as long as I keep on going, that is all that matters. Like Rainer Maria Rilke said : LET EVERYTHING HAPPEN TO YOU/ BEAUTY AND TERROR/ JUST KEEP GOING / NO FEELING IS FINAL.