10.12.2017

Fear

This isn't going to be a fun blog to write, or read in all probability but I'm hoping it might help to get some of how I'm feeling out of me. Cathartic in some way.

Where to begin. 

I'm not coping right now. I feel bad about it and guilty and like I shouldn't feel like this but that doesn't change the fact that I'm not coping. It's a whole host of things, only a few of which I will go into here but together it's left me feeling completely lost in somewhere very dark indeed. 

If you've read my last three or four blogs you'll know that I've been having a few problems with my liver and the veins in my esophagus. Firstly, I hate the word veins so I will be calling them anything but that for the rest of this blog. Liver disease is not anew thing for me. I have an enlarged liver and spleen and portal hypertens and cirrhosis. It's never caused me much problem but has always been there. When I was around 8 I remember sitting in the Drs room with my parents while he told them in front of me that bleeds, coughing or vomiting blood were a risk and something that could happen. Also that they needed to keep a close eye for liver cancer. Being so young the cancer thing didn't stick, but the blood thing did. The only experience I had with blood was the hideous frightening needles to take blood from my arm and the scary bottles of dark red. The idea of it coming out of me in copious amounts has ever since been one of my biggest worries. I won't even watch anything that might involve it on tv. 
So hearing the varicies needed treatment now was always going to be scary. Realising something else is going wrong inside without me knowing is also frightening. Add to that that this week we lost a hugely inspirational and amazing transplantee who was the longest surviving transplant recipient, to complications from a burst ulcer and internal bleeding and its all just a little too close to home. Aside from the reason he died, I think most transplant recipients will feel grief for a fellow patient who dies, whether they knew them well or not. It's a commerade, a fellow fighter and you know all too well how hard they fought to be alive. When they lose you feel that loss. CF patients and transplant patients deal with loss on a daily basis, most people wouldn't believe how many friends we lose. 

I've also reduced both my steroid dose (any change makes me go completely unstable) and my anti depressants. This was done to try and solve another issue I was having and I was quite proud with how I was coping on the lower dose. I still am but it's really not helped with all the extra stress on top. 

I had the banding procedure done on Tuesday, my 6 year anniversary of transplant. It went well, the staff are just a complete dream team and other than not having much appetite and being sore it was ok.
Until last night when I burped and one of the bands flew into my mouth. 
I should say that it's fine, that's ok, I've spoken to my long suffering consultant and he's reassured me. But I'm not afraid to admit I was terrified. Terrified I'd bring up blood and be at the mercy of Drs that don't know me or my conditions. Terrified I'd sleep and wake up choking on it. Aside from that, the shock that something like that which could be potentially life trphreatening can happen just like that. And there's nothing I can do. 
Most of you know the repeated fractures, fatigue etc that seem to work to hold me back are draining. It add this new fear on top that anything can happen and I'm free falling. What if my mum dies? The only one who is there no matter what? What if I'm hospitalised and in ICU? What if my lungs fail again? What if I need radiotherapy down the line for rejection? What if what if what if? 
It's like something's snapped in me. I didn't sleep. I'm exhausted, drawn, and keep bursting into tears. I looked in the mirror and all I see is this scared little person looking back. I don't want to go out and I certainly don't want to go on the days away I have planned. 

Even my home doesn't feel safe any more. I'm consumed by fear. 

I've got no real support. I feel alone which is even more terrifying. I have my mum and dad and a couple of good friends. They are the only people I feel I can confide in and sometimes not even them. They have their own problems and a lot of time I feel like a burden. I should snap out of it but I just can't. I also feel angry. Angry that others can walk away and not feel frightened every second of every day. 

It feels as though life is over. Every time I try to make myself less lonely or chase my dream of acting it just fizzles to nothing as there is always something medical that needs attention and my energy is limited. There will always be that issue that has to take priority because it could be dangerous if not sorted. 

I'm sorry for such a negative post but it's all I can do right now. The band coming off isn't a problem. But tomorrow or today or next week something else could be. 

9.06.2017

Organ donation week 2017

This week is National Organ Donation week, and I have been crazy busy working! 

That opening sentence alone speaks volumes about my life now as opposed to my life pre-transplant. This week I have 3 cake order (I had 2last week too), I went to volunteer with the organ donation team at my local hospital in my new role as ambassador helping with a sign up stand, I did two interviews with local press and sent quite a lot of emails to make it all work. It's only Wednesday! 

This time 6 years ago, my life was completely different. I was on oxygen constantly, used a non-invasive ventilator, which may be non invasive but was a very unpleasant thing to use. I relied on everyone else to help me, from being pushed in a wheelchair, to administering constant doses of drugs, to helping me wash, dress, walk, talk. I was in constant pain and always breathless, I looked like a bag of bones even though I was fed by a tube down my nose into my stomach every night. That was just physically. Mentally I was a 20 year old having to face the fact I was going to die. Die without having accomplished anything I wanted. Without meeting my niece, without seeing my nephews grow up, without being able to chase my dreams, or hug my mum, or celebrate a birthday. 




The fact that someone decided to go on the donor register and by a miracle of fate I was saved by that decision, isn't something I can fully comprehend. It's awe-inspiring, overwhelming, humbling, and a million other things. I can't cope with the fact that I got my call and so many friends didn't get there's, and we're lost into the 'what if' void. I grieve for them, and the lives unlived. I grieve for my donor and their life cut short. For their incredible family left behind. I wonder why I am still here. I strive to do my best to live for us all but that's a lot of pressure on anyone's shoulders. 



Times are often very tough, lots of issues still remain. But I am alive. I can hug my mum, take my nephews out for dinner, scream when they hide and jump out on me. I can move forward, I'm not where I want to be but I'm in a pretty good place and I am unbelievably lucky to be here. Not everyone is. 


Please please consider signing the register if you haven't. Please share this blog or any of my posts/tweets/news articles if you think it can convince someone. One person can utterly transform lives. I cannot tell you how desperate that long wait truly is. Give someone a chance, because I promise you, that's all they want. 


8.26.2017

Infusions and endoscopes and colonoscopies... oh my!

I think Dorothy got the better end of the deal with lions and tigers and bears but hey, you can't win them all! 

So as promised I made you a vlog! I have no idea if anyone will make it to the end (or even watch at all) but please give it a go if for nothing else it's taken hours of my life!!! 

Tests are over for the time being, but spoiler alert nothing was as bad as I thought it would be. The worst part was the hunger. So much in fact that it got me thinking about this was a 4 day thing for me but for a lot of people, not being able to afford to eat regularly all the time. Puts it in perspective. So once I was able to eat on Monday I came home and donated to The Trussell Trust, a food bank charity that supports those who need it. 






So please watch and let me know what you think. I promise there's nothing graphic in there! 

Xxx
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