July & August update.

I’m still here, still waiting.

The story is still pretty much the same. No real changes in symptoms or progression of my PSC so that’s very positive. One major thing that has changed is the itching, ITS UNDER CONTROL! Finally! After months and months of hell I finally tried the last option available to me (all other options had been exhausted). I am now on Rifampacin which is doing a really good job of keeping the itching under control and long may it continue, PLEASE! Anyone who has experienced the uncontrollable, all over itching that liver disease causes will know how incredibly hellish it is!
One thing that is new on the list of health issues is the heart palpitations I keep getting. They’ve been happening on and off for the past couple of months now, sometimes they’re just little flutters (for lack of a better word) and sometimes they’re bigger kind of ‘thumps?’ Obviously I’m not very clued up on all of this so please excuse my poor description. Anyway, I told my consultant about this and she said it could be some of the medication I’m on causing it or it could be my liver causing it, obviously when the liver isn’t working properly it can start to affect other organs too. I’m going to have a 24 heart monitor fitted tomorrow so they can get a better idea of what’s going on. Hopefully it’s nothing, heart palpitations are quite common so fingers crossed it’s nothing to worry about.
Everything else is basically the same, some days better than others as always. I think I’ve adapted quite well to this level of fatigue and everything else now so I’m able to push myself a little bit harder to go out and do things more regularly. It’s always a huge struggle but I’m better at dealing with that struggle now whereas before it was quite hard to get past it. I still have moments where I’m instantly reminded of how ‘unwell’ I am and the difference in my health now compared to two years ago. It’s usually when I’m doing something simple like walking into town and I start to get exhausted about half way through my 10 minute journey, I stop and think to myself ‘I really can’t believe how difficult this is…walking should not be this physically demanding’ but it is and it’s little moments like that where I get really excited about how much better life will be after my transplant. I just can’t wait for the day when getting out of bed, walking, staying awake for a whole day…all the little things that most people take for granted are no longer such a struggle!

So like I said, there isn’t much to talk about in terms of health updates so I’m going to write about a few things that I’ve been involved in during the past couple months, the first being National Transplant Week 2014. This was almost two months ago now from 7th-12th July. This is a whole week dedicated to raising awareness of organ donation, encouraging people to sign up to the organ donor register and talk about their wishes with their loved ones. Of course I wanted to do my bit during this week so I tagged along with my good friend Martin who spent the week travelling more than 600 miles, visiting 4 different hospitals to support National Transplant Week by manning the information stand, handing out leaflets and talking to people about the importance of organ donation. The 4 hospitals Martin visited were Derriford, Yeovil, Musgrove and King’s College, all of these hospitals helped save his son’s life when he was diagnosed with PSC and eventually had two transplants in 2012. Martin did an amazing job and made a huge difference by getting lots of people to sign up to the register throughout the week! I joined him on the Wednesday and Thursday at Musgrove, we had a great two days talking to lots of people and signing them up there and then, it was so rewarding. I felt like I actually made a difference and finally felt like I was useful for something haha (not being able to work for the last year and a half has left me feeling slightly useless). Knowing that just one more person has signed up makes me feel so hopeful, knowing the difference they can make to so many lives is incredible. It was also really interesting talking to people and hearing their views on organ donation. I’m excited to get involved next year, hopefully by then I would have had my transplant and I’ll be living prof of the difference organ donors make 🙂

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After transplant week one of our local papers; Central Somerset Gazette wrote a piece about Martin’s triumphant week, he told them about me and my wait for a liver transplant and they contacted me to see if they could feature me in their ‘Health Matters’ section in the paper. Of course I was more than happy for this to happen, I’ll always do whatever I can to raise awareness of PSC and organ donation and sharing my story is one way of letting people know what life is really like waiting for a transplant, how it can affect anyone at any point in their life and how vital it is that more people sign up to the donor register and let people know their wishes. Sharing my story is also a really good opportunity to raise awareness of PSC. Living with a rare condition that most people have never heard of, let alone understand can be incredibly difficult and add a lot of stress to an already stressful situation! The more that people know about PSC the easier it is for people to understand, the less they will judge and hopefully less patients will have to hear statements like:
‘Oh it’s a liver disease? You must have been drinking too much’ or ‘you’re too young to have an alcohol problem.’ …no it’s not related to alcohol in any way.
‘Oh but you don’t look ill, you look well…you must be feeling well’ …. probably the most shallow thing to say. A lot of conditions are ‘invisible’ and I’m pretty sure you wouldn’t be saying that to me if you saw me first thing in the morning…make up is a wonderful thing!
People judge, or say the wrong things because they don’t understand and that isn’t their fault. People don’t mean any harm but if we can inform people, if we can raise awareness then hopefully people will be more compassionate and less likely to say the wrong things. There are so many rare diseases and they are just as terrible and as cruel as the big ones that everyone knows about, the ones that get talked about often. The ones that get a lot of funding put into them for research into cures and better treatments, the ones that people understand and wouldn’t think twice about saying things like ‘She doesn’t look unwell, she must be fine’ about someone who is living with one of these conditions, the ones where you only have to mutter the name of the condition and people instantly understand how much of a struggle life must be for someone living with it. Rare diseases don’t get that instant understanding, they don’t get the funding that they need so that better treatments and cures can be developed. This is why raising awareness of PSC is so important to me, obviously as a PSC patient I know the great need for better research, more funding and more understanding. That is why charities like PSC Support are so important and so invaluable and why people close to me are doing all kinds of crazy things to raise money for the charity 🙂
Anyway, here is my story that was feature in Central Somerset Gazette.
You can click on it to read it more clearly.

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So I don’t think there’s anything else to report, I’m sure I’ve missed something but never mind! Hopefully I’ll post again soon when I get the results back from the heart monitor or if I get any other updates. I have a busy weekend coming up as one of my uni friends is getting married, I’m so excited to see everyone and to celebrate all together! Plus my best friend is home from India in a couple days and will be here for the weekends festivities so I’m SUPER EXCITED! Lots to look forward to.

Thanks for reading x

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