11th November 2013.
Whilst I’m waiting for my new liver, it is really important that my doctors keep a close eye on me so they are aware of any changes in my health and possible progression of my disease. Because of this, since being placed on the liver transplant waiting list in July, my usual three monthly check-ups have increased to monthly check-ups with my hepatologists at Deffiford Hospital. These appointments are a chance for me to update my doctors on how well or unwell I am, let them know of any new symptoms or changes in my health and for them to monitor my PSC by carrying out blood tests and scans. It’s also a good chance for me to ask any questions or bring up any concerns that I may have. I always prepare for my appointments by writing a list of things I want to ask my doctors and things I need to tell them about (geeky)…I love lists, whoever invented them is great.
So once a month we make the journey from my house in Somerset down to the hospital in Plymouth. My dad drives down and my mum always comes along too. It takes about an hour and a half which isn’t too bad and it’s such a nice drive, the West Country might not be very lively but it’s definitely pretty!
Today I had to attend two appointments. The first one was my hepatology appointment which was booked for 4.10pm and then I had an MRCP (fancy MRI) scan at 5pm at the other end of the hospital. After being informed that the hepatology appointments were running late and waiting 40 minutes to see my doctor, I realised that I probably wasn’t going to make it to my scan appointment at 5! I told one of the nurses about my predicament and she was really helpful, she got hold of the radiologists to let them know and luckily they were running late too so it worked out quite nicely really. Not long after that and much to my dad’s delight (he is terrible at waiting) I was called into my first appointment.
The first thing I wanted to talk to my doctor about was my TIPSS (the metal shunt in my liver). A couple weeks ago, I had to go for an ‘urgent’ gastroscopy (have a camera shoved down my throat) because the previous ultrasound of my liver showed that my TIPSS may be blocked. That would not be good! The purpose of the TIPSS is to reduce the pressure in the portal vein and to divert the blood; therefore decreasing the risk of oesophageal varicies forming and bleeding again. However, if the TIPSS becomes blocked, the blood cannot flow through it properly and the risk of variceal bleeding obviously comes back…I cannot afford to get into that sticky situation again so the doctors wanted me to have the gastroscopy done to be sure that this wasn’t the case – if it was blocked, they would see varices on my osophogus whilst looking down with the camera.
After being heavily sedated and kicking off slightly in the procedure room (my doctors are used to this now), I was told that there are some grade one (very small) varieces on my oesophagus and stomach. This meant the TIPPS probably isn’t blocked because the varices would be bigger if it was but they were going to liaise with my hepatologists in Derriford to see if they wanted to take action or not. I was eager to find out what their opinion was, so in my appointment today I brought the subject up straight away.
My doctor was happy that they only found grade one varices and he didn’t seem worried about them at all, he told me he is confident that the TIPSS is doing it’s job! Pheeeew!
The next thing I wanted to talk about was how I’ve been feeling recently. I seem to be going through a bad phase with all of my symptoms at the moment, they’ve all been exaggerated over the last couple weeks making me feel more cruddy than usual:
- Fatigue is worse than usual; having to sleep a lot more and finding it harder to push through the tiredness.
- Itching is pretty much constant and driving me mad!
- I’ve had very little appetite which is VERY unusual for me, I’m really good at eating and to have that taken away from me is just cruel!
- Jaundice has increased…mellow yellow aint so mellow any more.
- Had extreme URQ pain constantly for two days then on and off since.
I experience all of these symptoms everyday to some degree but like I said, they have been pretty extreme over the past two weeks or so. I explained all of this to my doctor and he was fairly sure I’d been experiencing a bout of cholangitis (an infection in the bile duct). This is fairly common in PSC patients and something I’ve always known I have to look out for but I never know when to take action. It’s hard to define my regular symptoms from the symptoms of a cholangitis attack. If the infection was severe I would know about it for sure and have to go to A&E as it can be very serious but small infections can also occur where the symptoms are more mild and they often clear up by themselves. This is what my doctor thought I may have been experiencing so he gave me a five day course of antibiotics to clear up any remaining infection.
There was talk of possibly trying some new tablets for my itching since nothing else I’ve tried has made any difference to it whatsoever! But these tablets are quite toxic and can cause horrible side effects so I told him I’m happy to carry on without them for the moment and just grin and bare the itching. It does drive me mad but I hate having to take so many tablets as it is and the thought of having more side effects to contend with really doesn’t appeal to me! I can always try them if I decide I want to but for now, I don’t.
I didn’t really have time to ask any of the other questions I had prepared but they weren’t urgent, just stuff I wanted to know about the transplant so I can ask them next time. He wants me to go back for my next appointment in three weeks rather than a month, I’m not sure why I think it’s probably because he wants to make sure this infection clears up and doesn’t lead to anything else. I was given strict instructions to make sure I keep a close eye on these symptoms, to go to my GP for more antibiotics if I notice it happening again and to inform the hepatology team of any changes straight away!
As far as check-ups go, this was a pretty good one. No bad news, nothing much to report and no new medicines to add to my current luxurious cocktail! I managed to get to my MRI appointment on time and that was all pretty uneventful, I wont know anything about that until my next hepatology appointment.
Finally, we grabbed a drink and something to eat and then made our way home. I was starving and SO parched by this point because I wasn’t allowed to eat or drink all day in preparation for my scan, so I was really happy that the café was still open when I was finished. I don’t think anyone has ever seen someone cram a doughnut into their mouth as fast as I did!
The wait for my new liver could be up to two years, so between now and whenever the transplant happens, the main aim is to keep me as healthy as possible and hopefully keep my PSC at the stage it’s at now. That’s why these monthly appointments, blood tests and regular scans are so vital.
In other news my glorious boyfriend has been accepted to run the 2014 London Marathon for PSC Support. He needs to raise a grand total of £2000 for the cause. This is going to take a lot of hard work and a lot of hard training (although he likes to make everyone believe it’s going to be easy for him 😉 ). So if you’re feeling charitable and want to make a big difference to a small charity who support PSC patients and fund research into PSC, then PLEASE sponsor Josh.
You can sponsor him online at www.virginmoneygiving.com/JoshuaTapp
Thanks for reading x