By Camilla Salmon
Camilla's diagnosis post of Polyarteritis Nodosa continues...Read Part 1 here.
Did you meet any stand-out medics along the way?
The doctor who came to see me soon into my stay in hospital and said, ‘Don’t worry Camilla - I will get to the bottom of this!’. He reassured me that he was spending all of his spare time researching what could be going on and speaking to doctors and hospitals all over the country trying to find out what could be wrong with me. He did tests after tests and bloods after bloods. I really trusted him with my life.
The dermatologist whose biopsy led to diagnosis. He was so good and although my arm is scarred I’m very grateful for the care he gave me and how neat the scar that I have to look at everyday is.
My fabulous neurologist who came to see me who said ‘I’m pretty sure I know what it is’ and her reply to my mam’s question ‘would we BOTH be ok?’. Her response was ‘it’s serious but treatable’. Those words will forever stay with me! So many tears followed but she filled us with hope! She continues to monitor me now and she is the most caring and conscientious medical professional I have ever met!
The SHO who came to check on me every day! He was such a friendly face and was very interested in what was going on daily and monitored me throughout my stay in hospital. He held a ward rounds where I was ‘subject A’ when I was feeling up to it. I’m all for educating people on rare diseases!
The on-call rheumatologist who came to see me when I was transferred to a more specialised hospital. He was very laid back and reassuring. He spent time with me explaining what PAN was, if my unborn child would be ok and he said ‘NOT TO GOOGLE ANYTHING!’. Very sound advice!
My great and extremely knowledgable rheumatologist. She continues to be very much part of my care and I can’t thank her enough. She amazes me at every appointment. She has an answer to every question I have and is so understanding of everything I have been through and continue to go through.
6. Did you have any negative interactions with medics along the way?
Unfortunately yes. I had a particularly negative experience with a sister in the PAU ward. Her answer to all of my worries was to have a banana and do some heal twists which I presume were for my ankle joints despite all of my joints being in agony. Words that will stick with me forever! She was everything that a nurse shouldn't be and should not have been in the profession she was in from my personal experience.
7. What would your tips be for anyone else who thinks they could have a similar diagnosis to you?
Through my own personal experience I’m all for the care you receive at teaching hospitals.
Try and find medics who have experience in PAN or similar.
If you would like information only use official NHS and arthritis websites.
Connect with others.
Don’t allow people to ‘fob you off’.
ALWAYS TRUST YOUR GUT!!! You are living with it and know your own body.
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