2020 has been a strange old year for everyone; very challenging.
I mean, I kicked it off great to be fair; playing Monopoly and drinking cups of de-cafe tea! I had a check-up with the doctors at the Royal Papworth Hospital in December and we had decided that now was the time to start looking at the options for a transplant, so I started the year waiting for my assessment date.
And then the news of the COVID19 started coming in thick and fast. To say my anxiety hit the roof is an UNDERSTATEMENT. I was a mess; I couldn’t understand why we weren’t doing more to try and prevent it. But I won’t get political on you.
I felt helpless, like I have been trying so hard to keep myself “healthy” and happy - and now this virus is going to just come and take everything from me. I was terrified.
Eventually action was taken in the UK and I was advised to shield.
All hospital appointments were cancelled. Suddenly after seeing at least one specialist doctor every three months I was left alone. (I still had telephone appointments, but they don’t seem to give the same level of reassurance.)
Things seemed to calm down and my hospital appointments started to pick back up again.
In June I had a short stay on the PH ward at the Royal Hallamshire Hospital, where I moved from a T60 pump to a CADD pump. This sounds very technical, but it was simply just a change in my IV medication from iloprost to epoprostenol. I had two stays because I had some technical difficulties, which are all rectified now. I quite enjoyed my stay in hospital (apart from the food) as it was my 1st time around people other than my household family since March.
I then was back at home, occasionally seeing friends and family, socially distanced in the garden. I had my assessment for possible transplant at Papworth hospital. The rooms there are fancy, I had one all to myself, with a TV and en suite! Lovely stuff. The staff were, as always, amazing, lovely and make you feel reassured even when you’re frightened.
The assessment entailed ECG, echo scan of the heart, x-ray, blood tests and a six-minute walking test. So, nothing too scary. I will say that I very much surprised myself with my walking test and spent the morning texting everyone, telling them I’d done so well that I thought I was too well to be added to the list. So, I was a little surprised when they told me they wanted to put me on the list.
I went home and waited for my appointment to meet a surgeon. I only had to wait just over a week and then I was back again. When I met the surgeon (I wish I could remember her name, my memory can be terrible) we talked about what will happen, and why I need both heart and lungs. Then, I signed on the dotted line. (You might not know if you haven’t been in these situations, but you have to give your consent before you have any type of procedure.)
After meeting the surgeon and Ann the transplant nurse, me and mum started the drive back home. I remember telling my mum that the surgeon had made me feel safe and that “I feel like I can trust her with my life, I feel in safe hands” which I’m sure you will agree is EXACTLY what you want to feel when meeting surgeons.
When I got home, all that was left was the wait; for the call telling me I have officially been added to the list. I was expecting this to take two or three days. The next day (when waiting to go into the dentist) I got a phone call telling me I am on the list! Well… it hit me. Now I have to get used to the idea that any day the phone can ring and it could happen. Which is both exciting and bloody terrifying!
While I was at Papworth, I asked them if I could talk to a psychologist because I was very aware that my anxiety has been creeping up and up, with everything that has been happening, both personally and globally. Over the next few weeks, I had telephone calls with Rachel and I got my anxiety back under control.
I also at one point had a trip to A&E because I got my IV site stuck to my Hickman line, I had all sorts running through my head - how I was going to need a new line putting in, etc.… But in the end Zoe (the A&E doctor) popped it off no problem, which was great but also a bit annoying. She told me not to worry and that she was here “anytime I need unscrewing”. Thanks Zoe!
I have recently been for another check-up at both the Hallamshire and at Papworth. I have had my medications tweaked, and am awaiting some more tests in the new year. (I’ll keep you updated). Oh and I am back in sheilding....
So, what have I learnt this year?
Well, I have learnt mindfulness, and a safe space meditation which have both been very helpful.
I very much miss my friends.
I really like reality TV shows.
I can accept things I cannot control.
Here’s to the next one!
Happy New Year!