Having endocarditis in 2020-21 gave me a whole lot of firsts in my life. I have mentioned some in my memoir but here are ones that I can recall.
1. My first CT scan. These are fine just as long as they don't involve a cannula, which the first couple I had to have did. If you hate needles as much as me, do ask if they could put it in your arm when you are lying down.
2. My first MRI scan. I think my mum told me at the time about the loud noises you experience. They are loud even wearing ear plugs and headphones which are given to you. If you have music going on the machine, try to tune into that. It does help. Another tip is that you can't usually wear metal during the scan so if your shape allows go without a bra and wear a crop top and wear joggers/trackies or a skirt (weather permitting).
3. My first blood transfusion. I never want one of those again. It takes 4-5 hours to complete, even longer if you are like me and need the toilet often.
4. My first major surgery. One I hope to never repeat in my life. My mechanical heart valve is meant to be for life. This is why I chose this instead of a tissue valve.
5. My first pacemaker. I never expected to have one of those at all in my life. If you have read my memoir, then you know why I was fitted one. I might have to have it replaced later in life as they don't last as long as a valve. I do know that I will probably this year have to have one of the leads replaced as it is making extra noise (my body has always been complicated).
6. My first time having carers. I never thought I'd have them until I was much older. They did help me to recover at home, knowing that I wasn't alone all day.
7. My first time using hospital transport. I didn't even know that it existed until I was transferred to my second and third hospitals, and then when I came home could use it to attend my appointments. I still use it today especially to go to my main appointments at Guy's and St Thomas's hospitals. It involves waiting around for them to come and collect you both at home and at hospital but it is a door to door service.
8. Saying that, the above is another first for me – attending hospital appointments on my own. Before the surgery I always used to go with my mum as I was afraid of getting lost and not knowing what to say to medical staff due to my Asperger's. I now go to all my appointments on my own, something that I am amazed I do. I believe that it comes from no longer having a hole in the heart which made me nervous. So, one good thing did come out of that period of my life.
BTW my memoir 'Endocarditis - My Journey' got a 5 star review from The Book Dragon store, which you can read on their website. It is available to buy there as well as my website, Amazon and other ebook retailers.
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