10 years on

The 1st of October marks 10 years since my second transplant and although I am feeling very low at the moment I still feel very blessed to have got this far as yet again doctors didn't think I would make it to the end of the year with this liver let alone reach 10 years. As some of you know I was listed for a third transplant just 3 weeks after my second but then miraculously despite  my thrombosis oxygen and blood where getting to my liver again and so they thought they would take me off the list and see how  long it would last but they said it would probably only be  matter of weeks or months before I have to be re-listed.

I would love to be able to say that the past 10 years has been amazing and that I managed to live a normal and happy life but unfortunately it hasn't been the case and more than anything its been the most challenging, emotional and life changing time of my life and although I am so grateful to my donor and her family for the most precious gift one can give to another human being I often regret the decision to go ahead with the transplant and like I said in my previous post I feel that it could of gone to someone more deserving or could have made a better life with it.

I always said if I got to the 10 year milestone I would celebrate big and do a fundraiser but unfortunately because I got ill earlier in the year I was unable to do all the planning and preparation for it and to be honest with everything going on it even slipped my mind. Anyhow my mum couldn't let the day pass without celebrating it with our nearest and dearest so she decided to organise a get together at her flat and at the same time raise money for Marie Curie as I have benefited from their services a lot this year and I wanted to give something back.

Although I was feeling very low when people started to turn up even people I didn't expect would come came I started to feel very happy to be surrounded with so much love and support and I felt very blessed. I couldn't believe that everyone came for me and help me celebrate. It was a lovely feeling and very emotional as I released the latter and the balloons in memory of my donors. I realised then I have an AMAZING family and friends and although my life didn't turn out the way I had hoped and I have gone through so much I realised that throughout my journey I have been surrounded by such wonderful people.

I know that I will probably will not get to celebrate another 10 years but if I do it will surely be one hell of a celebration!

IN MEMORY OF MY DONOR

IN MEMORY OF BOTH MY DONORS

My lovely Todd Ward nurses who looked after me during my transplant

And Breathe

Breathing is something we all take for granted as humans as we don't really think about it as it's just a natural process in order for us to survive. However, like everything in life when something is taken away from us or is difficult to do we start to appreciate everything and look at life from a different perspective. Since being diagnosed with pulmonary hypertension and being oxygen dependent now every breath I take is precious as I know the probability of my heart stopping suddenly without any warning or going into acute heart failure is high as proven earlier this year when I suddenly went into acute multi organ failure. Although I have been ill in the past this time was especially scary for me as apart from my very first encephalopathy episode it's the first time I have become acutely ill while being home and going about my everyday life and ending up in ITU, as in the past the only time i've ended up in ITU is after I have come out from surgery or when I've take a turn for the worst whilst still in hospital. Also being faced with the decision whether I would allow them to intubate if need be and to say that I was DNR and see the sadness in my mums face was emotional and so difficult.

Since being home my life has taken another turn and change in lifestyle which I am having to get used to. Over the years with my health deteriorating my independence has slowly being taken away from me which I'm finding very difficult to deal with as I am usually a very independent person. When I agreed to have a transplant for the second time I never imagined my life would go this way, I thought it would be like the first time that it would be the start of my future and I would go onto fulfil my goals and dreams in life, instead I am faced with a terminal illness on top of my liver disease, going to a hospice and no social or work life anymore. Had I known all this would be in my future I would have said no to the second transplant and it could of gone to someone more deserving and who could make the most of their life. I feel like I have failed my donor.

I know this post seems very negative but it's a reflection of how I have been feeling lately. My emotional state has been up and down so much this year but more on the downside. Since going to the hospice I finally found a great counsellor who gets me as well as challenges me and it's been a while since I had someone to talk too as my last counsellor was not great and after 2 years I did not benefit from our sessions. Hopefully in time with her help I can come out of my dark place and see the positives again in my life.

A not so good start to 2016

It's only just over 2 weeks into the new year and boy has it already been emotional and heartbreaking.     Having to accept that my PH is progressing quite quickly now and the thought of such an uncertain future is hard to deal with. My liver Surgeon is still very adamant on the portal vein reconstruction although it poses huge risks and no guarantees, plus the fact he wants to put me on the ECMO for at least 3 weeks before doing the surgery makes me much more reluctant. Then on the PH side my consultant is not as confident as my liver surgeon as my case is very unique and complicated which they haven't ever come across in this country and even worldwide. My history of complications post surgery be it major or minor is very extensive and i have yet to have any surgery that hasn't resulted in post-operative complications. Therefore it has left me with a big decision whether to take the risk of having surgery in the hope that my PH would be cured but if it goes wrong I could potentially be cutting my life short or spending months in hospital with even more problems.

My PH consultant also discussed what medication options are left for me and said that I am already the highest dose of the safest meds that they can give me without severely affecting my liver. The only other option is to have an IV port access to my heart and having a iv pump the medication through. However, with veins as bad as mine and my history with lines (cannula, picc & central), they never last very long as they either get blocked or infected very quickly and if that happens it could kill me instantly. Also the chances of having encephalopathy episodes are greater with that option and  again that could also kill me. In the meantime am hoping that the increase in medication which I started last month will make a difference soon so that I can get out a bit more and it was suggested that I get a oxygen outlet installed at home and have a portable tank to carry with me when i'm out so that I am covered if I get too breathless.

As I sat in the doctors office and listening to all the very limited options I have, I felt numb, deflated angry and sad at the same time. Actually couldn't believe I was hearing such negative things as I felt like again I have lost control over my life and body. Fortunately, for me I have a great consultant who has a lot of empathy, explains things throughly until I understand and is just a very nice and warm person.

Then to top things off we found out that a good friend of my mums passed away recently and I also knew him as him and mum worked together for years and he would also visit me in hospital when I was ill and when I was young he use to tell me such bad jokes to make me laugh and put on silly voices when he rang to speak to mum.  He was such a good man, so loving, funny and a dedicated family man. Yesterday was the viewing of his body and so I went with my mum as I wanted to pay my respect and say goodbye too. Looking at him so peaceful was so emotional as I just expect him to come out with his jokes and smile at me. He also died of a pulmonary disease which made it even harder and he knew exactly what I was going through. He was diagnosed a year before me and rapidly declined. At least now he is in God's hands and no longer in pain or suffering as he can breathe easy. Tomorrow is his funeral and cremation so will go with mum. It will be hard as the last time I was at the same crematorium I was saying goodbye to a very good liver friend of mine 4 years ago and am sure will bring all the memories again.

So as you can probably tell it's not been a great start to the year and I don't know what the rest of the year will bring but I still hold on to hope and my faith in God praying for strength, guidance, comfort and a miracle. Where there is life and God, there is hope.

My first hospice experience

Last week I had my first appointment at my local hospice (Marie Curie). When I got the call on Christmas Eve offering me an appointment I felt as if this is it, there is no more hope and that I have to prepare for the worst. During the holiday period I felt very anxious, depressed and defeated. I even contemplated on giving up all medical treatment including stopping all my oral medications as I thought that I had no more options.

After talking through everything with the hospice doctor I felt a little better as I felt like she understood where I was coming from, how I was feeling and took the time to listen. My appointment was only suppose to be an hour but  I think we ended up talking for about 2 hours or even more that when we came out everyone said 'geez u was in there for ages'. She was so attentive, never did she look at the clock or check the time like some doctors do, she just listened to everything and together we came up with some goals and plans for the future. At first she was shocked to read about what I had already been through and she could see how frustrated, sad and fed up I was and one of our first goals is to get me some emotional help through counselling and then she suggested some complementary therapies which may help me feel better about about myself as well as some physio to help with my mobility and breathing. Also I explained how my living situation is not suitable to my needs anymore so hopefully a social worker will help me sort things out with the housing.

We then came to the unpleasant and difficult part of the conversation about my wishes and needs for when the time comes. I did explain that I had already done my own plan and wish list which I have kept just in case especially whenever I go for any surgery I make sure everything is written down. During my next appointment next month she told me to bring everything I have in so that they can put it in my file and make sure that everything is carried out how I want incase of any unfortunate event.

Yesterday, I went back for my first physio session and again the physio was so nice and we managed to get through an hour of assessment at the gym and come up with a exercise plan for me to follow which means I have to come to their gym at least twice a week for about an hour in order to hopefully build up my strength and improve my breathing during exertion. We found that I am quite weak so hopefully regular exercise will slowly build up strength and I will be able to do more things and may also help with my self esteem too. She also gave me a relaxation and breathing CD to listen too when i'm at home and want to just relax and to help with my insomnia.

I am now not so scared of thought of going to a hospice as it's not all doom and gloom and a place where people go when they're dying, it's more of a place to go for support and respite when faced with a terminal illness. I've already met a few patients who have been going for so many years and they love coming in even when they don't have an appointment as it's such a friendly and warm environment which offers a lot of other complementary therapies. I already feel so at home there that I actually am looking forward to going again on Friday as they have a relaxation session and hopefully will meet more people.

Viva Italia

With everything going on and taking it's toll I have been feeling  really low lately and although I spent the summer in Philippines I feel like it wasn't really a holiday or a break due to the circumstances so I thought I'd take some time out and go away for even just a weekend. Fortunately my good friend Ate Glenda was keen on travelling too so I had company. We managed to find a good deal on flights and hotel in Italy for 3 days so I went ahead and booked it for the first weekend in December. As the flight is less  than two hours I did not need to arrange for oxygen this time which made things a lot easier.

Despite not feeling 100% well in myself I did manage to have a good time and it was nice to just get away for a few days, stay in a lovely hotel and do some sightseeing. However, due to my limited mobility and breathlessness I had to take things at a slow pace which meant we couldn't see as much as we could have had I had the energy. Anyway I guess it's a reason to go back in the future and hopefully see more. Now that I know I can manage little trips I want to make the most of my time and hopefully go on more short breaks even if it is just in Europe as there is a lot to see and I love travelling. This year I hope to do a lot more travelling and enjoy myself while I still can.

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.