Monday 22nd to Wednesday 24th February
This Monday Robyn was busy exercising and out with her friends so I was just at home for a while and then later decided to take myself to Caffe Nero (my mind was still away somewhere on other things so it was nice to get out). I got a window seat this time and was sat watching this couple with another lady unload their car with children. First, two toddlers that were dressed the same, in these big fluffy white coats (they looked to me like snowballs!) and then out came another two babies in their car seats, also dressed the same!! They came into the cafe. The lady asked if they could all sit with me as there were not any other free seats and of course I agreed. They were two sets of twins, 2 boys and 2 girls (yes they had dressed the boys in these coats too 😐 ) very close in age, but the other lady was like their nanny I guess, I’m sure they needed as much help as they could get! In the end someone else left the cafe so they didn’t need to sit with me, they sat across from me instead, which was a shame 😦 I was looking forward to it and I was going to ask if I could take a picture of them all for my blog so you could see them too as they all looked so cute. So sorry, maybe another time! They kept me entertained for a while though 🙂
On a completely different note through Transplant Australia’s Twitter feed I had seen this article in the Sydney Morning Herald about the ‘paired exchange program’ which I found very interesting. This ‘largest exchange of organs in Australian medical history’ was made possible all because a man decided to do an amazing thing and donate one of his kidneys to his friend. His friend in the end ended up getting a kidney from the normal donor register, so his wasn’t wanted. But he didn’t want to waste the effort he had gone to in getting fit for the operation, so he very kindly told the doctor he was willing to go ahead and donate it to anyone else that was waiting. And this led to a whole chain of events.
Have a read by clicking on this Fascinating story I’m glad it wasn’t me that was in charge of organising all of those operations to go smoothly 🤓
On Tuesday in my diary there was a note to myself to reduce my tacrolimus. When I saw my consultant last time he said I could do this 2 weeks before my next appointment, so that it wasn’t too late before my bloods were checked in case I started to reject as a result …
It was a bit of a job for me to get to work this morning. I hadn’t slept very well at all. I had a bit of a sore throat and didn’t feel quite 100% I had to concentrate hard! I think a cold was maybe on its way and because I had to make a final decision about how many hours I was going to work, I knew that this was making me stressed too. Also the whole ‘year ago’ thing and the fact that I was dying this time last year (I was especially thinking about what my kids would have been going through) was playing on my mind. I did make it to the end of my shift somehow though.
Then in the afternoon I had an appointment with Dr Collier in the JR. I decided I was going to go Park & Ride so off I went. But obviously not in time as I missed the bus! Another bus that turned up had problems with the brakes so that was not in service anymore! Eventually I did get on a bus. I was late but I had arrived! I was not going for a medical appointment but to discuss things to see if I would be able to volunteer on the liver ward there and talk to the patients who are suffering with their own liver illnesses. She thought this was a brilliant idea, they don’t offer this service at the moment, so I am now waiting to go through all the checks and everything to get cleared to do this. I hope I pass …
I treated myself to a coffee in the cafe there so I could do some blogging in the JR 😃 before catching my bus back.
When I got home Leah said she had been thinking about coming home from work early as she wasn’t feeling well and just wanted to go to bed. She was a hero though and soldiered on!! And it turns out that Robyn wasn’t feeling that great either. Seems we had all got some little kind of bug 🤒
Robyn had asked me the other day when my next clinic appointment was so she could write it in her diary (Miss Organised 😉) as she normally takes me because she has Mondays off. So I thought I had better look to keep her quiet, and the letter said 21st March. WHAT!!! That means it’s still a month away, and I’m not allowed to go more than 2 weeks on my reduced anti rejection medication. Whoops!! Looks like I got it wrong again So I had to phone my consultant’s secretary in Birmingham, tell her the problem and wait for her to ask Prof Neuberger what I should do now and get back to me.
At 9pm it was time for my sleepover with Robyn. We haven’t had one for a long time and I was finally going to get the opportunity to sleep in her new bed!
And look what was waiting for me when I got up there!
Robyn does spoil me 🤗
Back to work again Wednesday morning. The afternoon was spent at home.
Oh – and I heard back from Maria my consultant’s secretary, to say that I could either put my tacrolimus back up for now and reduce it back down again at the correct time! or I needed to bring my appointment forward as it really couldn’t be left for more than two weeks before my blood was checked. Thank goodness that I then also realised that the original appointment needed to be changed anyway as we are already booked in at a day spa! So tac reduced, appointment changed (though I can’t now see Prof Neuberger! as he’s on holiday that week). Never mind it might be fun to see someone different. We’ll see. What a performance it all is 🙄