My 2015

This year has been a very difficult and sad year for me and it definitely falls under one of the worst years of my life. With the death of my beloved auntie and my health situation it's been a tough time and sometimes giving up seems like the easier option but to think that there is a lot of people out there a lot worst off than me I feel that it would be selfish and ungrateful especially when two very generous people and their families gave me the most precious gift of life so that I can live.

The things that really get me down are things that healthy people take for granted like having a career, a family, being able to travel and basically just doing everyday things. When i was little all I ever dreamed off was to be a doctor, have a nice house for me and my family and to have plenty children but now all that seems to be out of my reach or impossible. I can kiss having a career goodbye because with being to tired, being in pain and struggling to breathe on a daily basis means I can't hold down a  permanent full time job anymore. I will never own my own home as I cannot afford it due to not being able to work full time and to top all things off having kids is now a big no. Those are the only three things that I ever wanted to live a happy life so it breaks my heart and often makes me angry to know that I will never achieve any of them.

Although I have a lot of things that restrict me from leading a normal life I still try my very best when I feel well enough, and I try to not let it stop me from doing things like working. Even though I cannot hold down a full-time job anymore I still love my job so much that on my good days I do a shift and it helps to feel normal even just for a day or two. However I've gone from being able to do 2-3 shifts a week to now only managing 2-3 shifts max a month. I'm not looking forward to the day when I will have to stop working for good as it's the only thing really that keeps me sane.

My health has always been the biggest challenge in my life and with liver disease I thought my life would be greatly improved after transplant but since my second transplant my health has got worst, my diagnosis list keeps growing and the fight to survive keeps getting harder and I don't know how long I can keep fighting, being strong for others and keep putting on a brave face when inside I feel like my body is working against me all the time. I miss the days that when I could walk and run without pain and becoming breathless, going out with my friends and having fun and working full time. Sometimes I feel like my only hope now is to pray for a miracle but I think i'm pushing my luck now with the man upstairs as I have already had many miracles and being a live today is the proof of that as from the day I was born I was not  expected to live past 2 years old and with everything I've been through in the past and have overcome are all due to little miracles which God has blessed me with so I have no right to complain as despite my life now and everything else I am already truly blessed and lucky. I have defied many odds and have over 30 years extra.

I am glad to see the back of 2015 and I don't know what 2016 has in store for me but I can only hope it's much better and a little bit of happiness would be nice. God works in mysterious ways so you can never know what tomorrow will bring.

Wishing you all a very MERRY CHRISTMAS & A HAPPY & HEALTHY NEW YEAR!

@Home with Mum and Bro

Me with Bro and Kiki (Pat's gf)

Me, Ate Emz and Bee

@Kilburn with the Family!

Heart Vs Liver

Since my diagnosis of Pulmonary Hypertension just over 2  years ago it has been a constant battle with staying on top of both illnesses and whenever I get sick it's like what is the cause this time? what do they treat? and there is  always disagreements with both teams. When I see my liver surgeon he says all my symptoms are due to the progression of my PH and when I see my PH team they say the underlying cause is my liver. I have no idea what is going on except that I feel like things are not getting better despite the new medication that my PH team has put me on alongside the sidenafil that I am already on.

Earlier this month during my daycase at Hammersmith Hospital the PH nurse specialist came to see me and we talked through things and it was clear to her that I was getting more depressed with my current situation. The main issue being the fact that having a child could kill me and so since my diagnosis they have been trying to drum it into me the importance of not becoming pregnant which has been very difficult for me to accept. It's not that I can't  biologically have children it's more the risks of carrying and giving birth to a child is the issue, but due to my liver disease I cannot take any oral contraception which gives me a greater probability of falling pregnant. We also talked through my symptoms and after filling out the same symptoms and quality of life questionnaire that I fill in at every appointment and telling her how I feel on a daily basis she told me that it's due to the progression of my PH so she suggested some lifestyle changes to try and make my life easier and suggested I get a wheelchair to use when I go out and need to walk for long periods of tired so that my heart won't get too pressured from forcing myself when I am already tired and out of breath. She also explained what to expect in the future like what are my wishes if and when the time comes I won't be able to mobilise at all or is very limited, making a will and other unpleasant things like if anything happens to me and I need to be resuscitated do I want to be or not. It's important that while I am still mentally and physically able to do things that I get things in order. She suggested that I be referred to my local hospice and palliative care for further support and guidance which my GP has done since. During the doctors rounds the consultant decided that they increase the dose of my newest medication, ambrisentan in the hope that it will help me symptomatically and slow down the progression. They asked if my liver doctor has any plans of further surgery for me in the future and as I explained to my liver doctors already that with regards to having another transplant I refuse but my liver surgeon suggested a portal vein reconstruction in the hope to improve my PH but I said that if it won't cure or improve my PH dramatically then I would not go ahead it with it as I don't think my body can take any more trauma and putting myself voluntarily in a vulnerable situation when I know from my past that I never come out of any surgery without more complications is just not an option. There has to be greater outcome for me to agree to have anymore surgery done. I think they wanted to know because if they were planning anything surgical then now is the time to start thinking about doing it because my pressures are at the lowest it's ever going to get, no treatment is going to improve them any further so if they were to change it will be that it will get higher from here on out.

Well that's the story far, as for me emotionally, I am a wreck. My life seems to be going more in the wrong direction and all my dreams and hopes for my future feels like are being robbed from me and everyone around me is just getting on and living there lives. I often feel that I am just surviving and existing but not living anymore. My doctors and nurses just keep telling me to enjoy my life while I can but how can I when what makes me happy has been taken away from me or are very difficult to do. Sometimes I feel like it's not my liver or heart that will end up killing me but most probably my depression.