Monday 31st October
Happy Halloween 👻🎃
Today was clinic day. Gary was taking me this time as Robyn has started a counselling course now which is on a Monday afternoon, so she sent us off with a list of questions that she wanted answered!
I don’t know if you remember, but at my last visit I was told that my PBC might have returned in my new liver as some of the readings in my last two lots of blood tests were a bit high. This came as quite a shock to us.
We have been waiting for this latest appointment to try and find out a bit more about what is going on.
I had an ultrasound scan first of all and then I went for the appointment with my consultant.
As we were walking with the nurse to the ultrasound room I had a ‘flashback’. The corridor leading to the room and the room itself was so familiar to me, I’m sure I was taken for a scan there during my ‘crazy days’ following transplant. It was a bit unsettling, I didn’t like it much, but I didn’t say anything and just followed on into the room.
My consultant told me that the scan (which among other things was checking the blood flow to and from my liver) looked fine, so that was good news. But some of the readings in my latest blood results were still high, so he thought that there was still quite a good chance that my illness had returned 😫 The only way you can tell for sure though is to have a biopsy of the liver, which I can tell you is not a very nice experience!
The decision on if I wanted to go down this route was now completely up to me. The biopsy isn’t completely necessary at this stage. If it did show that PBC is back, nothing would change in my treatment right now anyway. They don’t like doing these procedures if they can help it and I certainly don’t want my new liver being messed around with just for confirmation reasons. So my decision was to leave things alone (sorry Robyn, I know you wanted me to come away with a definite answer today but I think my liver’s best left alone right now, at the moment it’s doing the very best it can for me 😏)
I mentioned that I have actually been feeling unwell quite a lot recently, have been having pains in my tummy and have just been so very tired. Again it was up to me if I wanted further investigations on my tummy, so I decided to just wait and see if things all start to settle down a bit now the house move and hopefully a lot of my stress is out of the way I also showed him my blood pressure result sheet that my GP wanted me to do, he said it all looked fine to him.
So the outcome of the appointment was to go away and carry on as normal with everything. I just need to add ursodeoxycholic acid to my medications again (which is the drug used to treat PBC), keep an eye on how I’m feeling and my blood results will be monitored as usual.
I am a bit scared about all of this. I always knew that my illness could return. But so soon? I would have liked a bit more of a break from things if I’m honest! But what can you do? Nothing. So I will just carry on like I always do. Some days will be good, some days will be tough. I don’t know any different really 😑
We stopped off at Frankie and Benny’s on the way home as we were both hungry. I had a delicious spaghetti bolognese. Oh and some nice bruschetta to start 😋
When I eventually got home I was quite disappointed to find out that we had no Trick or Treat callers for Halloween and didn’t for the rest of the evening. We all thought that we might get quite a lot because of the position of the house we have moved to and were looking forward to it. But sadly not! Maybe next year we need to put a pumpkin 🎃 out!!!