My thoughts

As of late I have been feeling very reflective and emotional about my past and where I am in my life now and what the future holds. When I see certain things on TV, listen to certain songs and see certain people I am reminded of what I have been through and sometimes I feel elated to know that I have come through a lot of difficult times but more often than none I feel great sadness, guilt and frightened. However, when I get these feelings I know that God is always there for me and I know I can turn to him and he will let me know that I am never alone even though sometimes I feel so lonely in my thoughts.

The guilt within me comes from knowing that two people had to die in order for me to live, although I know that I didn't cause their deaths I still have the guilt of praying that I would get a donor in time while I was on the transplant list. Also having lost numerous friends, some of whom where not as sick as I have been but still didn't make it and where my health was deteriorating and my diagnosis list was growing but I kept pulling through and I didn't feel worthy of surviving when my friends where dying as I was becoming more of a burden on my mum and family and a mystery to the doctors.

With all the guilt came great sadness for the lost of lives and remembering what I went through. I often find myself getting all emotional out of blue when doing everyday things like relaxing on the couch at my mums and watching television I get flashbacks of all the days spent lying on that couch unable to mobilize independently, wrapped up in dressings from my open wound, having my encephalopathy attacks and feeling like rubbish. Then when a hospital drama or documentary comes on TV I get memories of me being stuck in hospital for months at a  time but not really remembering much of hat happened but the feelings are still so raw that I  often think to myself how the hell did I cope with all that and how has my body not yet given up on me when at times I had given up on myself.

My friends and family all know that I am not one for self pity, I hate attention and I very rarely complain. I always try to stay as positive as I can, not let things stop me from doing what I want to do and I will very rarely show my true emotions and feelings. I have a great poker face and will always have a smile on my face even when I am at my lowest and this I realised when looking back at my hospital pictures I could remember how I felt at the time but my face says something else as I would still look so happy.

I've never let my liver disease define me and my life because I believe our lives in just one long journey and you have to make it what it is and my strategy in life is too take each day as it comes but also have dreams and goals and I try to make the best out of the bad situations in my life by turning the bad into something good. Also,  believe that nothing is impossible if you really want it but it won't come to you so you have to go out and chase your dreams to make them a reality.

Have A Great Summer Everyone...GOD BLESS!

My Amazing Mum

I've just realised that since I started this blog I haven't done a post dedicated to the single most important person in my life who is my mum. I feel so ashamed and upset with myself as she is the one person who has been there for me from day one and has never given up on me.

Me and my mum have a very fickle relationship like any mother and daughter but I don't think she realises how much I actually do love, respect and appreciate her as I must admit I am very difficult to understand and live with. I always have good intentions but often have difficulty putting into practice.

However from the day I was born and diagnosed with my condition she has been the one constant person in my life who did and still does almost everything for me. She comes to every hospital appointment, stays with me whenever I am in hospital which is months at a time sometimes and is very over protective of me till today as if I am still her little baby girl. I love her so much and don't know what I would do if she was not round. I live my life for my mum.

Mum, I know it's not always obvious by the way that I am sometimes but I just want you to know that you are my life, my inspiration and my strength and I love you so much. God blessed me with the best mum ever.

A good clinic update finally!

Re-post- originlly posted on 04/04/14

I finally got to see Prof Heaton yesterday although I had to wait 4 hours. My appointment was at 9:40am and I got seen at 1pm due to there being 3 transplants going on which he had to set up first. 

During my appointment the first thing Prof noticed was the difference in my breathing and my overall appearance and was very pleased with the improvement as he said he was very worried that I was deteriorating very rapidly with the Pulmonary Hypertension and was afraid that it wasn't caught in time and that I may not have survived much longer. Obviously he didn't tell me at the time how concerned he really was as he didn't want to get me down even more but now that I am improving he was so pleased and told me how he really did feel.

I then asked him if I could go on holiday and he said that on the liver side it's all good and I can but to ask Hammersmith regarding my heart which I said I did and they said I can but would need to have an oxygen tank during the flight which the airline should provide for a small fee if it's a low cost airline but the major airlines usually provide it for free. I finally sent of my passport for renewal so once it arrives, here I come world!

I also mentioned that I got a job as HCA again and he said it should be fine as long as I take it slow at first and that it is sensible of me that I start off as part time.

So all in all a great clinic appointment which I was not expecting and everyone I bumped into said that I looked a lot more well and had noticed my breathing and walking. This time I have 3 months off as he don't want to see me until June. However, he still wants me to see the other Prof on the medical side as although I am improving with the PHT he still wants to come up with a long term surgical intervention plan once my heart is completely stable and can withstand GA as the medication is only going to help control my symptoms and not cure the condition which he ultimately wants to do. However it is no longer a matter of urgency now as my improvement has bought us more time.