Monday 20th July
It would have been my mum’s birthday today, so a bit of a sad day.
It was also clinic day. A visit I wasn’t looking forward to actually, thanks to my hospital stay. I just had a feeling they were going to keep me in, even though when I thought about it rationally I knew they wouldn’t have my results straight away, so wouldn’t actually do that.
In to the dietician first. Told her I still had no appetite, my tummy was unsettled a lot of the time which puts me off eating too. As always she just wanted me to try having the protein milkshakes more often and adding the gel to my squash. Try adding more snacks in. ‘Yes I’ll try, I’ll try’. We all know WHAT I’ve got to do. It’s actually getting me to do it when I have no appetite. That means you don’t want to eat anything, just don’t fancy anything, makes it extremely hard to decide what to actually buy and to prepare food. I’m sure they don’t understand (or do they just not know what else to say!)
I then saw a doctor that I hadn’t seen before. It turned out he lives in Winchcombe, not very far from us, and knows Chipping Norton well! He was an older man who had worked in this area of medicine for many many years. I think he was able to read me as soon as I walked into his room. He said that liver transplant patients were very good at lying. When people ask them how they are they always say ‘yes I’m fine or I’m doing well’ then later it comes out ‘well actually …’
He thinks I’m still recovering from some kind of infection but he doesn’t know what. They cant test for every one that exists. But he was the most sensible doctor in my opinion, saying he wasn’t going to give me antibiotics when he didn’t know what he was treating (thank goodness as they just make me worse), he was just going to give me time to recover. But it was important for me to remember that if I started to feel worse at any time, I must get in touch with doctors at the QE immediately and NOT my own GP or the Horton.
He, like the nurse the other day, said to me that it was still very early days in my recovery, plus I had this 2 week setback, and I wasn’t to be hard on myself. He also explained things a bit differently to how others have. He said that the rest of my body also has to get used to having a new liver. It has not been able to work to its full capacity for quite a long time with my bad liver and it all has to repair. And my head has to get used to trying to be in control again, where it hasn’t had to be for such a long time. Also about 6 months after transplant is quite a common time to feel a bit of depression from it all. I have been very fed up while in hospital and since I have come out, so perhaps I’ve started feeling this way a bit early !!!
He said my results were all slowly getting better but certainly were not what they should be yet and that this wasn’t going to be as good as it got, I would feel a whole lot better yet. That was good to hear!
I liked him. He had explained things well to me and Robyn. He made me feel a bit more at ease. He wasn’t just going to pump me full of any old drugs to make me feel bad, I liked that result especially. I hope I get to see him again next time.
I was the very last person to come out from the doctors area and I still needed my blood taken 💉 The nurse had just got her bag and was leaving when she saw me. I told her it didn’t matter, that she should still go home as I didn’t want it taken anyway! but she wouldn’t take that as an answer and I didn’t get away with it 😦
We then went up to the ward to visit Kate. She had been doing well and was now out of critical care and back up on the liver ward and also back on the transplant list. Robyn had brought Kate a colouring book and pens. Seemed a very good thing to do as it was my mum’s birthday and she loved to colour. It had also helped Robyn and Hannah get through some very stressful times while they were hanging about a lot for me at transplant time, and I also did some myself during my hospital stays. My hospital friend Marina liked to colour as well. Hope you enjoy it too Kate.
We didn’t get home until just before eight 😵