tag:blogger.com,1999:blog-27342149282333853682024-03-13T19:52:38.327-07:00Maribel's MiracleMaribelhttp://www.blogger.com/profile/15356122193174366211noreply@blogger.comBlogger60125tag:blogger.com,1999:blog-2734214928233385368.post-83016896190360668092016-10-04T06:07:00.001-07:002016-10-04T06:09:01.118-07:0010 years onThe 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.<br />
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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.<br />
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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.<br />
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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.<br />
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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!<br />
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IN MEMORY OF MY DONOR</div>
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IN MEMORY OF BOTH MY DONORS</div>
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My lovely Todd Ward nurses who looked after me during my transplant</div>
Maribelhttp://www.blogger.com/profile/15356122193174366211noreply@blogger.com0tag:blogger.com,1999:blog-2734214928233385368.post-23728332792195415862016-09-30T13:01:00.001-07:002016-09-30T13:01:00.929-07:00And BreatheBreathing 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.<br />
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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.<br />
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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.Maribelhttp://www.blogger.com/profile/15356122193174366211noreply@blogger.com0tag:blogger.com,1999:blog-2734214928233385368.post-55905314163990245442016-01-19T19:11:00.002-08:002016-01-19T19:11:25.764-08:00A not so good start to 2016It'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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.Maribelhttp://www.blogger.com/profile/15356122193174366211noreply@blogger.com0tag:blogger.com,1999:blog-2734214928233385368.post-1650516639610848212016-01-19T18:25:00.000-08:002016-01-21T15:07:47.712-08:00My first hospice experienceLast 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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.Maribelhttp://www.blogger.com/profile/15356122193174366211noreply@blogger.com0tag:blogger.com,1999:blog-2734214928233385368.post-35883420306953480642016-01-15T18:42:00.001-08:002016-01-15T18:42:54.223-08:00Viva ItaliaWith 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.<br />
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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.<br />
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<br />Maribelhttp://www.blogger.com/profile/15356122193174366211noreply@blogger.com0tag:blogger.com,1999:blog-2734214928233385368.post-33346419144038545202015-12-22T19:25:00.001-08:002016-01-15T18:26:15.004-08:00My 2015This 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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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Wishing you all a very MERRY CHRISTMAS & A HAPPY & HEALTHY NEW YEAR!<br />
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@Home with Mum and Bro</div>
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Me with Bro and Kiki (Pat's gf)</div>
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@Kilburn with the Family!</div>
Maribelhttp://www.blogger.com/profile/15356122193174366211noreply@blogger.com0tag:blogger.com,1999:blog-2734214928233385368.post-29614075474659703222015-12-22T16:26:00.003-08:002015-12-24T15:36:32.238-08:00Heart Vs LiverSince 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.<br />
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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.<br />
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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.<br />
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<br />Maribelhttp://www.blogger.com/profile/15356122193174366211noreply@blogger.com0tag:blogger.com,1999:blog-2734214928233385368.post-84811775162703192122015-09-04T15:46:00.002-07:002015-10-17T04:41:43.635-07:00Health updateWow, it's already September and I haven't even posted one post regarding my health yet. However, looking at my drafts folder I have started many but never got round to finishing any hence why I haven't posted anything. Well instead of continuing the drafts I thought I might as well start a fresh new one and just combine everything into one post which I intend to finish and publish tonight.<br />
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So where to start?! Well I guess the best place to start is with what has been the biggest and main issue over the past few months which this time it's not so much my liver but my heart. As you all know I was diagnosed with Pulmonary Hypertension in November 2013 which is secondary to my liver disease caused by my portal vein thrombosis which I developed post hernia repair surgery. After starting drug therapy and having a good effect at the beginning after a few months things started to become static again and towards the end of last year I started to feel that things were getting bad again as I was becoming more breathless again, regular chest pains and feeling of fatigue and dehydrated. According to repeat tests during my day case at Hammersmith hospital earlier this year it showed that things had got worst and I only got 30% on my lung function so a new plan of action was required as I was not fit for any surgery. They decided to start me on a new drug last November which I would take alongside the current medication i'm already on in the hope that my condition would get better and my symptoms would subside. They said it would take 3 months before I would feel any effects of the new drug and that they would review me again to see how much the medication is helping me. The downside of the new medication is that it often has significant effect on the liver and due to my liver disease they started me on a low dose and I have to get bloods done every month in order to keep track of what damage the meds are having on my LFT's and if they are affected too much then I would not be able to continue on them. Fortunately so far the new meds haven't had a significant effect on my liver but it hasn't seemed to improved my symptoms as I still feel the same and sometimes even worst especially when I was in the Philippines I found the severe humidity did not help my situation and I found that I couldn't do half the things I can usually do when I'm in the UK and wherever we went out especially to the malls my mobility was compromised a lot and was dependent on the use of a wheelchair. I often felt so much pain in my chest when I was walking anywhere and also all my joints where very painful especially in my feet and legs and sometimes it would even reach my shoulders and back which made mobilising and sleeping virtually impossible or very painful, thankfully i brought enough supply of pain killers cos if it wasn't for the pain killers I would not have coped. Whilst in the Philippines I missed numerous blood tests and hospital appointments, so since i've been back I've managed to get in touch with both my heart and liver teams and last Thursday I went to see Prof Heaton at clinic and luckily he was in that day. He said that he was worried about me during my trip but since he hadn't hear from me he assumed that everything went okay. I explained how I felt when I was there but he said he wasn't surprised because he suspected with my situation that the heat would be too much but was surprised I didn't suffer anything serious or life threatening which he was mainly worried about. Then he went on to explain that most of my issues now are around my heart and lungs and that he is still very adamant to do the surgery on my portal vein or even another transplant which will hopefully help my pulmonary hypertension but explained that if he was to do it now that 100% I will die during the surgery or as soon as they give me the aesthetic as my heart is too weak to cope with anesthesia thats why they did not give it to me when I had my endoscopy before I went to Philippines. He said that he wanted me to go see my pulmonary hypertension team to see if they can lower my pressure around my heart so that it will be safe enough to operate in about six months time. He also said that he would respect my decision if when the time comes I don't want to go ahead with the surgery it is up to me as it still comes with huge risks and he can't guarantee no post op complications which I am known for always getting. I think he saw from my face that I wasn't keen on any more surgery as I never have the luck with them.<br />
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My PH team at Hammersmith Hospital are amazing too but my last appointment with them was the most heartbreaking. It felt like someone took my dreams and threw them out the window like it didn't matter and that I should just stop dreaming and face reality that I will never live long, I won't have the family I always wanted and basically just accept that yes this is going to kill me someday and they even mentioned the words palliative care which to me says it all. They wanted me to come in for a few days when I got back from the Philippines but I expressed that I didn't want anymore invasive procedures and would appreciate it if I could see my consultant in outpatients first instead so hopefully within the next few weeks I will get an outpatients appointment and hopefully I get to see my consultant who has just come back from her maternity leave as I need more information on why the other consultant suggested palliative care and is there really nothing more they can do for my heart and lungs without surgery? Also since being back I haven't had the strength to go back to work yet as I still feel very weak, tired all the time and in pain daily. It's killing me not being able to work but I don't want to risk it and let my colleagues down by falling ill on the job. I know that I really should be going into A&E but to be honest as much as possible I want to avoid any admissions so as long as I can cope at home I will.<br />
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Sometimes I feel like i'm fighting a losing battle so it's time for me to say enough is enough, my body is tired and I know leave my life in God's hands. I can't complain as I have been truly blessed already to have made it this far, I've survived and beaten many odds but I am fed up of spending time in hospitals being poked and proded all the time and I see it as it's not the length of of your life that matters it's the quality so before my illnesses completely takeover my whole body I want to enjoy the years I have left. I want to travel, see the beautiful places of the world, spend time with my family and friends and hopefully find true love before my time is up and I can't do that from a hospital bed. So whilst I still have a little strength in me I want to start ticking things off my bucket list and this when it starts.<br />
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<br />Maribelhttp://www.blogger.com/profile/15356122193174366211noreply@blogger.com1tag:blogger.com,1999:blog-2734214928233385368.post-12322197703571921962015-09-04T14:21:00.002-07:002015-09-06T07:22:13.588-07:00A Tribute to my Amazing AuntieIt is with a heavy heart that I write this post in memory of my amazing auntie who passed away a week after we got back from the Philippines. Although it was expected it doesn't help how much it hurts to lose someone you love so dearly.<br />
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My auntie Aning was a truly beautiful person inside and out. She loved life, her family and was an amazing wife, mother, grandmother, sister, auntie and friend and she was loved by everyone who had the pleasure of knowing her. I come from a massive family and we are all so close even though we are spread out throughout the world distance was never an excuse but me and my auntie had a very special bond and I saw her as my second mum and it's funny because we actually had more in common with each other than me and my mum and I always felt that I can always talk to her about anything and feel comfortable with her in every way. Never a day goes by that I don't think of her and the hardest thing to accept is that I will never see her again, kiss her, hug her, talk to her and hear her voice or see her face when we call. Holidays to Philippines and the U.S will not be the same without her there. I would give anything to just see her, hold her and talk to her one last time.<br />
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To my cousins, Ate Maritess, Ate Marissa and Kuya Dino, I know you are hurting and grieving at the moment as we all are and we just want to say that we love you all so much and now that your Mama has gone to be with your Papa and is no longer suffering we want you to know that you still have a family in us here as we are and will always be here for all of you forever. You are very dear to us so please feel free to let us know if there is ever anything we can do for you. Stay strong my dear cousins and may the good memories of your Mama live on in our hearts and minds as we will never forget her.<br />
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To my dear auntie Rest In Peace and fly high with the angels... we will miss you so much but knowing you are in God's kingdom and no longer suffering is a comfort to us. You will never be forgotten as your legacy lives on and your etched in our hearts forever. I Love You so much. <br />
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<i><b>Ana Miranda Camba </b></i></div>
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Maribelhttp://www.blogger.com/profile/15356122193174366211noreply@blogger.com0tag:blogger.com,1999:blog-2734214928233385368.post-68832718064002341892015-09-03T23:32:00.001-07:002016-01-15T18:19:48.000-08:00My unexpected trip to PhilippinesAfter hearing the sad news that my auntie in America who was diagnosed with pancreatic cancer was terminal and that there was nothing else they can do for her and she wanted to go back home to Philippines me and my mum decided we wanted to go too so that we could spend some time with her and look after her. However, it was not as simple as just booking a ticket and flying out as my health is not at a good place at the moment so first thing I did was got in contact with my doctors on both teams the liver and the heart and at first my surgeon told me I can't go but for me this wasn't possible and I explained how important it was for me to go as my auntie is so dear to me and to never see her alive again would crush me as she is the closest auntie I have and I love her so much so I didn't take no for an answer, I said that I was willing to do whatever it takes just so that he would let me go so he suggested I have an endoscopy, and anyone who knows me knows how much I hate endoscopies. I can tolerate most medical procedures but not endoscopies but this time I was willing to do it and they said they would give me general anaesthetic anyway. On the day of my endoscopy they told me that they could not give me the GA as my pulmonary hypertension is to severe to risk it so they said they would just sedate me. At this point I started to freak out and panic and when they got me in and started injecting all the drugs I was out like a light and the next thing i remember was waking up in the recovery room thirsty, They did an amazing job and thankfully this time round it wasn't traumatic and when the doctor came in to tell me that my varies were not big enough to rupture during the flight I was so happy and relieved that the minute I got out the hospital I phoned the airlines to book my ticket. However, the stress was not over asI now had to get numerous forms signed by my heart specialists from the airlines as the only agreed to let me go if I arranged oxygen for the flight as the pressure in the air could compromise my breathing so I spent the next few days calling and faxing forms between my hospital and the airlines and I finally got confirmation on the day of our flight that everything was cleared. I could finally take a deep breath of relief and concentrate on packing and getting to Philippines.<br />
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I have wanted to go back home for a holiday and to see my family for the past 2 years but because of my health I couldn't. Everyone thought I was happy to be going home but because my auntie was so sick I did not see this trip as a holiday at all as I was going back mainly to spend as much time with her as possible and help take care of her. It was nice to see the rest of my family but I didn't get much time to spend with them as we didn't stay in my mums hometown, we stayed in Manila where my auntie lives so the only time I got to see the rest of the family is when they came to visit and when we went there for a few days.We initially booked for just over 4 weeks but my auntie asked if we could extend and I wanted to spend more time with her cos when the days got closer to us leaving I couldn't bare to say goodbye and plus she was getting weaker by the day. I felt I had to stay and look after her as much as I could. If it wasn't for my illness I would have stayed as long as i needed too but I was running out of medication and the heat didn't seem to like my body very much as I felt so weak in myself, a lot of pain and my mobility and breathing was so bad, I couldn't function half as much as I can back in the UK. However, i was there for my auntie and nothing else so I didn't mind not going out everyday cos I would feel guilty when I did go out to have fun and when we spent a few days in my mums hometown I missed her so much.<br />
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It was so painful seeing my auntie deteriorate as I know her as a happy, fun loving person who loves life and has a sense of humor and to see her personality being sucked out from her and how she looked so different was heartbreaking. I then realised how my mum must have been feeling when I was so ill, not only is it heartbreaking but it's also hard work looking after someone 24/7, but because you love them it's not work it's or it's not a chore, you do it out of love. I've looked after many sick people before in my job and it is tiresome and hard work, but when I was looking after my auntie I didn't feel it was hard work or tiresome. I felt privileged to have had the opportunity to look after her and I will never forget the time we spent together, the nights I slept next to her, the chats we had about life, the days we ate together and her feeding me even when I was so full already but I would still eat because she would buy me anything she knew I liked and it made her happy. I will treasure those memories for the rest of my life.<br />
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Oh my days I am a mess now, writing this has been hard cos as I recall everything I see her in my head and am smiling and crying at the same time. This trip has been the hardest and saddest trip I've ever had in the Philippines but I would not change it at all. I have been back a few weeks now and saw my liver surgeon last week. He said he was worrying about me whilst I was away but was surprised and pleased that nothing major happened to me especially during the flight. The rest I will explain in another post.<br />
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Me & Cousins (Ate Tess, Danna & Nogs)</div>
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Me & My Beloved Auntie</div>
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Me & Cousins (Jonathan, Duan, Nogs, Junior & Brian)</div>
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Me & My Uncle (Bapa Pol)</div>
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Maribelhttp://www.blogger.com/profile/15356122193174366211noreply@blogger.com0tag:blogger.com,1999:blog-2734214928233385368.post-58819809666516425552014-07-04T18:01:00.000-07:002014-07-04T18:02:03.369-07:00My thoughtsAs 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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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Have A Great Summer Everyone...GOD BLESS!Maribelhttp://www.blogger.com/profile/15356122193174366211noreply@blogger.com0tag:blogger.com,1999:blog-2734214928233385368.post-81769183230017169292014-05-26T19:20:00.002-07:002014-05-26T19:20:36.106-07:00My Amazing MumI'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.<br />
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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.<br />
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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.<br />
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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.Maribelhttp://www.blogger.com/profile/15356122193174366211noreply@blogger.com0tag:blogger.com,1999:blog-2734214928233385368.post-82755828576934851472014-04-22T19:38:00.002-07:002014-05-07T00:35:18.873-07:00A good clinic update finally!<div style="font-family: Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 14.44444465637207px; line-height: 21.46666717529297px; margin-bottom: 6px; margin-top: 6px;">
<span style="background-color: white;">Re-post- originlly posted on 04/04/14</span><br />
<span style="background-color: white;"><br /></span><span style="background-color: white;">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. </span></div>
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<span style="background-color: white; font-size: 14.44444465637207px;">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.</span><span style="background-color: white;"></span><br />
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<span style="background-color: white;">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!</span></div>
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<div style="margin-bottom: 6px; margin-top: 6px;">
<span style="background-color: white;">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.</span></div>
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<span style="background-color: white;">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.</span></div>
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Maribelhttp://www.blogger.com/profile/15356122193174366211noreply@blogger.com1tag:blogger.com,1999:blog-2734214928233385368.post-47808938386875286662013-12-31T10:09:00.007-08:002014-01-01T13:29:35.902-08:00Good Bye 20132013 you have brought me a lot of joy and it was all going well in the beginning but then it all went a bit wrong towards the end. I will cherish the good times and blessings and hope to move on in a positive way from all the negative things.<br />
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I pray that 2014 will be a better year for myself and my family and friends. Also to my amazing Liver family who have been there for me throughout my journey, thank you so much and i pray that your loved ones have a healthy and happy year ahead. To all the the precious children/people who have gained their angel wings this year may you all rest in peace.</div>
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If you are reading this and are not an organ donor please take a minute to register, as many people are dying needlessly and people like me won't be alive today if it wasn't for that precious gift given by someone in their hour of great loss and tragedy. It's a new year and many people are waiting for a new life.</div>
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<b><span style="color: purple; font-family: Times, Times New Roman, serif; font-size: x-large;">H.A.P.P.Y ~ N.E.W ~ Y.E.A.R</span></b></div>
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<b><span style="color: purple; font-family: Times, Times New Roman, serif; font-size: x-large;">2014</span></b></div>
Maribelhttp://www.blogger.com/profile/15356122193174366211noreply@blogger.com0tag:blogger.com,1999:blog-2734214928233385368.post-76093814001328935692013-12-31T09:56:00.003-08:002013-12-31T09:56:52.790-08:00End of year health updateWell I knew it was too good to be true that things where going so well for me this year as the past few months have been quite difficult for me especially the last two what with being diagnosed with type 2 diabetes and pulmonary hypertension, and if that wasn't enough to deal with the encephalopathy decided to make a return while I was in hospital having tests for my pulmonary hypertension which meant that I had to stay in hospital for longer and my treatment for the pht had to be put on hold until the enceph had cleared.<br />
<br />
Initially I was very anxious about the thought of being admitted and treated at a different hospital that I was not at all familiar with and really didn't want to go, but fortunately for me my Hammersmith experience was great. The staff and the quality of service is outstanding. I can't fault them for anything and my PHT consultant is very nice, has a lot of empathy and incredibly supportive. After I had all the tests she came to tell me the results that my pulmonary hypertension is at quite a significant stage and immediate treatment is needed. However, she doesn't suggest that surgery will be such a good option for me but will leave that decision up to my Liver surgeon who knows me best and will be the one to do it if need be. Her suggestion is that she starts me on a new drug called sedenafil which will reduce the pressure around my lungs and heart and will eventually allow me to walk without becoming breathless and tired and hopefully can live my life again and go back to work.<br />
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Last week I had another clinic appointment with Prof Heaton again to discuss the results from Hamersmith and he said now that I am on the new drug treatment there isn't an urgency of surgery now and he wants me to be on them for minimum of six months before he makes a decision as to what surgery would be best for me. Although my PHT consultant said that she don't think that surgery would be wise in my case Prof thinks otherwise. He thinks long term surgery will be the best option for me but wants my symptoms to be stabilized first as if he was to do anything surgical now it would be far too risky on my heart.<br />
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Since November I have had two major episodes of encephalopathy which required admission. The first being whilst I was in Hammersmith. I woke up with severe jerking especially my head and was slightly confused and the second episode followed my collapse at home. I was not answering my phone so mum came to my flat to check on me only to find tat I had passed out on my kitchen floor. I can't recall how I got there and the doctors think I must of fainted and just fell. That night i was in a lot of pain so mum called the ambulance and when I got to A&E my condition deteriorated with the onset of encephalopathy until I became very confused and couldn't string a sentence together as my speech was very slurry. I was at stage 2 and could not determine what year it was, how to eat and couldn't hold anything. Again they tried to get me transferred to Kings but still no beds. Also during my admission my blood sugars went crazy so was given insulin and started on metformin. When I was discharged I was told that next time I become enceplopathic to go straight to Kings as being such a complicated case they don't want to interfere with my treatment at Kings. However, i explained that the ambulance will only take me to my local hospital so I have no choice unless I risk taking a cab next time.<br />
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<div class="MsoNormal">
Since my diagnosis my overall quality of life and emotional
state has yet again gone downhill and I haven’t been able to enjoy all the good
things that I had achieved earlier in the year when things were going great. I
haven’t been able to start my job, my relationship with my boyfriend has
suffered and although I’ve moved into my new flat I haven’t had the opportunity
to become independent again as most of the time I have someone staying with me,
usually my mum, Sydney or Emily in case I have another fainting episode.<o:p></o:p></div>
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To top it all off I feel so upset as my support system is no longer going to be there due to people moving on in their careers and I only trust and talk to certain people so when they leave I will feel lost again and I really don't know how I am going to cope emotionally. </div>
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Well I think that's most of it. I will try to update more often next year, but hopefully with more good news. </div>
Maribelhttp://www.blogger.com/profile/15356122193174366211noreply@blogger.com0tag:blogger.com,1999:blog-2734214928233385368.post-51784003577461528962013-12-27T16:25:00.003-08:002013-12-27T16:25:23.779-08:00CONFIRMED - I have Pulmonary Hypertension :(Since my last post things have just gone down hill again and the past few months have been a great struggle both emotionally and physically. As I mentioned last time I was due to be admitted to Hammersmith Hospital to undergo some further tests in order to confirm Prof Heaton's hunch that I may have Pulmonary Hypertension and to see if how significant it is which he also thinks it has already reached a significant stage as my symptoms would suggest.Also I have noticed that every week I am finding it more and more difficult to breathe and it takes a lot out of me just to do the normal everyday activities such as making my bed, doing household chores and even just getting up to go to the toilet or dress myself. I have to do most things sitting down and I can't lie flat as I can hardly breathe when lying down, so I have to sleep propped up with loads of pillows or sitting down which makes sleeping very difficult and uncomfortable and its not like I don't have trouble sleeping anyway due to my insomnia. Actually I can't remember when was the last time I actually had a good quality sleep and when I am in hospital the nurses always ask me if I ever sleep.<br />
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During my elective admission at Hammersmith Hospital (Imperial) I underwent numerous procedures and tests including a cardiac catheter, walking, breathing and bicycle tests over three days and was due to be discharged as soon as the results came back and my consultant had decided as to what the best treatment plan is for me and discussed my options. However, in classic Maribel style on the day of my discharge I woke up very confused, intense jerking and my speech was very slurred so when my consultant came on her ward rounds and intended to discuss my results and her plans for my treatment she was shocked to find me in the state I was so she immediately rang the Liver team at Kings to try and get me transferred as they do have a Liver unit within the hospital and due to my complicated medical history she said she didn't want to interfere with my Liver. However, as usual Kings never have free beds so was put on the waiting list which was quite long therefore, I explained how thy usually treat me whenever my encephalopathy comes on so they just loaded me with lactulose and phosphate enemas over the next few days until I was completely back to normal and by that time a bed still had not become available at Kings so instead I was discharged the following Monday. My initial four day planned admission turned into eight days.<br />
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Due to my encehalopathy episode unfortunately my PHT consultant suggested it was best not to start the new drug treatment until I was completely cleared of the enceph as it could mask any reactions and side effects of the new drug. as soon as I was no longer confused and could talk properly she sat down with me and discussed my tests results and the treatment available and what she suggests was the best option for me would be.<br />
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RESULT based on the following tests:<br />
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1. Metabolic exercise test<br />
2. Lung function<br />
3. Right heart catheterisation<br />
4. V/Q scan & CPTA<br />
5. Autoimmune serology<br />
6. Viral serology<br />
7. Thyroid function test<br />
8. Echo-cardiogram<br />
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Diagnosis consistent with porto-pulmonary hypertension. Treatment with vasodilators was discussed and decided with my consultant.<br />
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On December 11th I was admitted for a day case to begin treatment on the vasodilators a medication used to improve and control the symptoms of Pulmonary Hypertension as it lowers the pressure around the heart allowing me to breathe easier. It is not a cure but will hopefully improve my quality of life. Although the treatment is non-invasive as it is only taking a pill three times a day it was still important that it was done as a day case in order to monitor me for a few hours after taking the firs dose as one of the side effects is that it can lower blood pressure significantly and if that is the case then they would have to find an alternative. Also due to my history of drug allergies and reactions to new drugs was more reason for me to be monitored. So they started me on the normal dose of 20mg and after an hour my BP dropped significantly and after another hour it dropped again and so by this point I was getting worried as the nurse said that if the next one has gone down more then they would have to inform my consultant and that I would possibly need to be admitted overnight which I was praying would not happen. Fortunately for me the next reading had not changed much. It didn't increase but did not go down too much so I just about got away with it and was allowed to go home. They gave me one month supply and said that it will take maximum of 6-8 weeks for it to start taking affect and if by that time I don't feel any different then they will increase my dose as the medication I am on for my encephalopathy reduces the affect of the sedenafil (vasodilator).<br />
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t has been 2 weeks since I started the new drug and I haven't felt any different which I know is normal as they did specifically say 6-8 weeks. I really hope this treatment works as my quality of life is getting worst by the day and on top of my insomnia as to why I can't sleep , now I can't lie down flat as I cant breathe so I<br />
have to either sleep sitting up right or my head propped up on loads of pillows. Also just doing the little everyday things is so difficult, for exaple washing just one dish or cooking something takes up so much energy and I feel exhausted as well as getting up during the night to go to the toilet which id like right next to my bedroom gets me so breathless by the time I get back into bed. You would think I've just ran up 10 flights of stairs by the way I am puffing and gasping for breath. I'm so fortunate that I got this ground floor flat because I can no longer go up and down stairs so when I go to mum's or visit family and friends it takes me about 15-20 mins to get up 2 flights of stairs and have to stop on every level to sit down and catch my breath before I can go up the next set. Being such an independent and outgoing person I am getting so frustrated not being able to do things for myself and going out is not as much fun any more cos of all the aches and pains and having to stop all the time. It is really getting to me now and getting me more depressed. When is it all going to end? I often ask myself!Maribelhttp://www.blogger.com/profile/15356122193174366211noreply@blogger.com0tag:blogger.com,1999:blog-2734214928233385368.post-38845187512407651322013-09-24T03:59:00.000-07:002013-10-05T22:46:19.424-07:00Bitter sweetI'm calling this post 'Bitter, Sweet' because that is basically how I'm feeling at the moment with everything as things are finally coming together with my flat which is now completed and I should be getting the keys either today or tomorrow which is exciting as I can't wait to start decorating, shopping and moving in. Also my job process is almost complete so am hoping to start booking shifts within the next few weeks.<br />
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Then on the flipside, I've got impending admission at Hammersmith hospital for further PHT tests to determine the severity is so that Prof Heaton and my PHT consultant can decide what the best treatment plan is for me. Also this Thursday I finally have a dental appointment which I have been waiting for since April and hopefully my dentist has a treatment plan for me as I'm getting really depressed with my teeth and I also need to get it sorted before any further surgery.<br />
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Since my diagnosis I must admit that I haven't been coping well and have sort of hibernated from most people and have just been feeling so de-motivated which meant that I missed my deadline for my course so have had to extend it for a further month which I am hoping to do now. I've just been spending my time either on my own or with Syd who gets my situation unlike my other friends.Maribelhttp://www.blogger.com/profile/15356122193174366211noreply@blogger.com0tag:blogger.com,1999:blog-2734214928233385368.post-75393354180350953312013-09-23T21:30:00.001-07:002013-09-24T03:30:04.959-07:00FriendshipsOne of the greatest gifts I have been blessed with and that has come out of living with Liver disease is the amazing people I meet throughout my journey and life. As a child I was never really seriously ill despite my liver condition, therefore I managed to live a pretty normal childhood and most of my teenage life where I had made some really great friends throughout my school and work life some of whom I am still good friends with. However, the past few years when my health began to deteriorate and especially the past 7 years where my life has been up and down with my health and on numerous times have come close to death I have come to realise who my TRUE friends are and more recently I have learn't that it's not how long you have known a person that makes a good friend but who is there for you in your times of need as well as the good times and I have been fortunate to have met an amazing young woman who also has a liver condition and has had a transplant. When I followed her story on a Facebook liver forum I saw that she was suffering with some of the same issues I had post transplant and so one day after my outpatients appointment I popped onto Todd Ward and decided to pay her a visit and that was the beginning of what would be an amazing friendship. I never expected it to grow into such a close relationship as I try not to surround myself too much with liver people now as in the past I have got close to a few people and they have passed away which has had such an impact on me and my mental health. The first few months following our first meeting we bumped into each other numerous time at clinic but it was just hi, how are you? and bye until we eventually swapped numbers and started meeting up at clinic without our mums and going for lunch at Nandos then eventually meeting up outside the hospital environment for dinners and days out which led to us getting closer every as we found out we were very similar personality wise, sometimes too similar which freaks us out. If ever there is a twin of me anywhere in the world I think she would be my personality twin, now I just need to find my look a like twin.<br />
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I've just realised that I've been talking about this amazing , strong, funny, crazy young lady and haven't even mentioned her name. I think I have mentioned her in previous posts but for those who don't know she is my biatch Sydney! :) Although there is an 11 year age gap between us it doesn't make any difference and like all relationships age is nothing but a number and I can honestly say that she is one or if not my best friend and even though we have only known each other for 9 months she has been more of a friend to me than some of my other friends who I have known for 15 years or my whole life therefore I felt she deserves the acknowledgement. I love you to bits Sydney and you will always be my biatch. We WILL beat this liver disease and live happy lives as good nurses oneday. I will ALWAYS be here for you babe.<br />
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Also to all my other friends that have been there for me or have had fun times with I love all you guys and thanks for being part of my crazy life.<span id="goog_1779397575"></span><br />
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Finally to my liver friends that have gone...I love and miss you all...Sweet dreams...<br />
Aneisha Patel<br />
Zara Bakri<br />
Nicola Oldacre<br />
Faith Ong<br />
Daniel BeamishMaribelhttp://www.blogger.com/profile/15356122193174366211noreply@blogger.com1tag:blogger.com,1999:blog-2734214928233385368.post-60198563716145610542013-08-17T08:06:00.003-07:002013-08-17T08:06:27.248-07:00Another blowI never thought I would be writing something like this again and especially now as this year has been going so well for me so far and I was starting to feel happy and content, something I haven't felt in a long time. The things that have been happening to me this year I never imagined would happen to me at all or at least not for a while and not all in the space of such little time frame. Yes I still suffer with chronic pain and other symptoms everyday of my life but the main thing is I have been well enough to stay out of hospital since November last year and that is a big achievement for me so I'm not going to complain and instead try to start to enjoy my life and make the most of every day. Also I have made some amazing new friends who have been so supportive and are always there for me no matter what and vice versa so life has actually been great. I'm not saying it's perfect cos I still get my down days and weeks of feeling low but never did I think I would feel this low again. It's like my life has been flipped 180 degrees in a space of a 20 minute appointment.<div>
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Thursday I had a follow up appointment with Prof. Heaton my surgeon as he previously discussed with me taking me off the rimfaxamin which I have been taking since November for my encephalopathy and since I have been taking them I haven't had an episode so he suggested that he wants to give me another 3 months and then review me to come off them completely. However within the last 3 months the enceph started to come back in small episodes with the shakes and slurry speech. So when he asked me how I was since my last appointment I told him that the enceph had been coming back in small episodes and then he gave me a list of symptoms asking me if I was experiencing them like shortness of breath, lack of energy, fatigue, pain etc.... and I said yes but I am seeing a respiratory specialist who thinks I may have asthma so I've had some lung function test and an echo.So he went into the system and searched for my test results and said no you don't have asthma but you have a condition called Pulmonary Hypertension (PHT) a rare complication caused from the blockage in my portal vein and the pressure around my heart and lungs are dangerously high causing all the symptoms that I am experiencing and that I am shunting too much blood. At this point I thought to myself great another diagnosis and probably more meds but if it helps my symptoms then I don't care. Then he went on to say that now is the time to think about some intervention as it is only going to get worst so the first port of call is to see the hepatologist Prof. O' Grady and then see a cardiologist who will be able to prescribe me the meds to help with my symptoms and he probably would want to send me to the Brompton as that is what they specialise in. In the meantime he will look over all my previous scans, tests and see if I need any more then to plan treatment which unfortunately will be more surgery. By this stage I felt like information overload and gutted as I didn't expect surgery. His facial expression and tone suddenly changed as he explained to me that he knows that he said earlier this year that he doesn't want to do any more surgery on me when I asked for wound closure because it's clear that every time they go in something goes wrong and I end up critical and he doesn't want to put me in that position again just when I am starting to get my life back. However, this can't go untreated as it will just keep getting worst eventually killing me. So he went on to tell me the two possible solutions. The first tackle the problem by attempting to unblock the portal vein which would be the best outcome. However he said with your insides being so messed up now he can't guarantee that will work without damaging anything else again and the second option is re-transplantation and when I heard that word I was in shock and tried to hold back the tears and carried on listening. He understands that my liver is doing good and it don't make sense on paper that I need another transplant but the only way to cure the PHT is through the liver which caused it in the first place. He has given me a time frame of 3-6 months that this will all happen.</div>
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I was just thinking to myself that this can't be happening to me again...I came to my appointment all positive and hoping just to talk things through about the rimfaxamin and to inform him that I have just been diagnosed with type 2 diabetes but that was it and I was in my gym clothes to go straight to the gym. After the appointment I came out the room and saw a friend that I haven't seen in a while talking to Sally the transplant co-ordinator and I went over to say hi and just broke down in tears in the middle of the waiting room. My friend Sydney then text asking where I was and she came up to meet me and usually we have a lot of banter and talk so much but I was just silent and I told her what happened and so she text her boss saying that she wasn't going back to work and we spent the rest of the day together. Mum was speaking to Jackie one of the other transplant co-ordinators and was crying to her. Mum then treated me and Syd to Nandos and then we went off to west end to try and cheer myself up even though I looked like a tramp from crying and wearing gym clothes. We was going to go bowling only to find that they had shut it down so we went to a bar but that was closed down too, the day was just getting worst and I was in pain so we ended up in Planet Hollywood and managed to salvage a bit of the day. I was just really grateful to have Syd there for me, don't what I would have done had she not been there.</div>
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<span style="color: #333333; font-family: Times, Times New Roman, serif;"><span style="line-height: 15.453125px;">Okay I think I've written way too much now so if your still awake at this point I'm sorry for rambling on.</span></span></div>
Maribelhttp://www.blogger.com/profile/15356122193174366211noreply@blogger.com0tag:blogger.com,1999:blog-2734214928233385368.post-4664508688425403732013-07-12T12:51:00.002-07:002013-07-12T12:51:25.640-07:00Some good news :)As mentioned in my last entry I had an upcoming interview to return to work as an HCA but as an agency worker to start off with. I was reluctant to attend as I thought that I would not have a chance of getting through the interview process and passing on the health clearance stage. However, I am not one to pass up opportunities in life as you never know what could have been and I hate living thinking 'what if?'.<br />
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With the help of a really good friend who has done the interview process twice I managed to complete the online assessment and she helped prep me for the interview I attended the recruitment day 3 weeks ago and I am pleased to share that I passed the test, the face to face interview and the documentation stages as well as the initial occupational health stage, all I now have to do is to submit my immunisation report from my previous job at Kings and when I have met all the requirements they said that I could start booking shifts for work as I don't have to attend training first as I have done them in the past as part of my previous employment and plus the fact that I have previously worked for them. However I will have to do the refresher training courses as my ongoing training and development which have been booked for August and September.<br />
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Other good news to share is that its 9 months since my last admission. Every day/week it always crosses my mind that it could be today my luck ends and I'm gonna have to go back in. I've had a few recent scares in the past month with the encephalopathy coming back. However, fortunately for me it wasn't severe and I was able to recognise the symptoms early and treat myself at home with phosphate enemas and lactulose before it got worst and I would have had to go back in.Maribelhttp://www.blogger.com/profile/15356122193174366211noreply@blogger.com0tag:blogger.com,1999:blog-2734214928233385368.post-38639002491327007772013-06-05T16:50:00.001-07:002013-07-12T12:33:35.370-07:0012 years onToday marked 12 years to the day since my first liver transplant and my post liver transplant liver journey began thanks to the kindness and unselfish act of my donor family at their time of grief. Rachel and Christopher I will always be eternally grateful for your gift as it gave me a new lease of life and five amazing years which I wouldn't of otherwise had. I pray and think of you everyday and hope that someday in the future we can meet and I can say thank you to you both in person.<br />
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Although I no longer have that liver I could not forget what it did for me at the time and I managed to have a great post transplant life for a few years before I got sick again and eventually needed another liver.</div>
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<b><i>update...</i></b></div>
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So it's officially half way through the year and I am pleased to say that still no hospital admissions. However, I still go to Kings often, almost every week for one thing or another but it beats being an inpatient. </div>
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Things are starting to go well again after my little blip in February and March as I am starting to feel a bit more energetic and happy again thanks to my lovely boyfriend who has brought light into my life again. He has been amazingly supportive and very loving that I can't ask for much more. </div>
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Also I have a job interview this month to go back to work as an agency HCA to start of with so hopefully will get that as I really am missing work and its another part of my life getting back to normality.</div>
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Maribelhttp://www.blogger.com/profile/15356122193174366211noreply@blogger.com0tag:blogger.com,1999:blog-2734214928233385368.post-33451945052925507522013-03-03T12:03:00.001-08:002013-03-03T12:03:39.504-08:002013 so far...We are already into the third month of the year and already it's been a roller coaster but thankfully not in terms of hospital visits as I haven't been an in-patient so far but have had some close calls. The roller coaster is in terms of emotions. I've been keeping up with my therapy which has had a positive effect as my panic attacks have greatly reduced but I'm still battling with certain demons.<br />
<br />
The year started off great. I was in a positive mindset, motivated and energetic. I thought I was on a roll and my self-esteem was slowly increasing. However, that slowly started to unwind and am finding myself back in the middle of a downwards spiral yet again. I've figured out to get back on track I need to make some harsh decisions about certain people in my life as removing negativity may help me be more stronger and positive. I'm not used to being harsh but I realise I need to start thinking of myself for a change.<br />
<br />
Some positives of the year so far is that I finally got motivated enough to knuckle down and get my first assignment done and passed, now to tackle the next two. Also I've made another great liver friend who in my eyes is amazing, strong willed and gorgeous. She has been through a lot in the past year and is still battling with problems that come with liver disease but she still manages to smile and be there for others. Sydney, love you girl! I love all my liver peeps, they are always there for me and never judge me. Although I have a lot of other friends they don't seem to get me and my life the way my liver peeps do so I feel so lucky to have them. I always said that the greatest thing to come out of having liver disease is the amazing people I get to meet along my journey. They are gifts from God.<br />
<br />
<br />Maribelhttp://www.blogger.com/profile/15356122193174366211noreply@blogger.com0tag:blogger.com,1999:blog-2734214928233385368.post-70187665243905052382013-02-04T23:02:00.001-08:002013-02-04T23:02:43.516-08:00Celebrating 31 years of my life :)As a child you get excited and look forward to your birthday but as you get older the excitement dies and you actually dread getting older, well it's true in my case. However much i dread getting older I also see it as a blessing because every year that passes is a precious gift from God. Over the past 31 years i have defied many odds through my health and when i was first diagnosed with Biliary Atresia prospects and survival rates were not great in the 80's and many children didn't make it past 2 years old therefore my chances were not great. However it seems like God has other plans for me because I made it into my teens without any major health issues post Kasai at 6 weeks old and it wasn't until i was 14 when i began to show signs of my liver deteriorating and I was placed on the national transplant list at age 18 and had my transplant a year later. My full story can be found in earlier posts.<br />
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Last year i spent my 30th birthday in hospital due to complications post hernia surgery. I was on TPN so was not allowed to eat. It wasn't exactly how I planned to celebrate my 30th but that's what life is living with liver disease. My family, friends and the hospital staff all tried to make it as special as possible and loads of people came bringing cakes and food. Although I wasn't allowed to eat any of it it, it was nice to be able to share it with the staff and other patients, also was lovely to have so many visitors which lifted my spirits.<br />
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I thank God for helping me get through the past year as it has been tough and there have been times when i wanted to give up but through his guidance and comfort I've managed to see it through and am finally beginning to feel a lot better. I have been home now for 3 months which has been my longest in a year and i'm happy to say that although i'm not 100% better yet I am positive that things can and will only get better from now on and i hope to start re-building my life again.<br />
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Lord thank you for 31 years of life and for blessing me with an amazing family especially my one in a million Mum and great friends. Also thanks to the wonderful Liver team @ Kings College Hospital for saving my life numerous times, without them I wouldn't be here today.Maribelhttp://www.blogger.com/profile/15356122193174366211noreply@blogger.com0tag:blogger.com,1999:blog-2734214928233385368.post-79557027114243976012012-12-31T21:08:00.000-08:002012-12-31T21:08:39.977-08:00Goodbye 2012...Welcome 2013!!!Another year has ended and started but I'm glad to see the end of 2012 as it was definitely one of the worst years of my life. I want to forget all that happened in the last year and start a fresh, hoping and praying that 2013 will be a good one as I have a lot of goals that i want to achieve this year. I am no good at keeping to resolutions so instead I make goals. However the most important thing for me is to stay healthy and stay out of hospital as I think i broke my previous record in the number of admissions I've had in a year. here's to a happy and healthy year to all my family and friends.<br />
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Thank you to everyone who has supported me through the tough times. I am blessed to have such amazing people in my life.<br />
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To my donors thank you for the precious gift...R.I.P! To my donor's families may you be comforted by the love of Almighty God.<br />
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<b><span style="color: red; font-size: x-large;">H.A.P.P.Y ~ N.E.W ~ Y.E.A.R</span></b></div>
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<b><span style="color: red; font-size: x-large;">2013!!!</span></b></div>
Maribelhttp://www.blogger.com/profile/15356122193174366211noreply@blogger.com0tag:blogger.com,1999:blog-2734214928233385368.post-64064723195257518852012-12-30T12:00:00.000-08:002012-12-30T12:05:15.502-08:00ComplicationsAs mentioned in my previous posts and in classic Maribel style I had numerous post op complications. As usual I developed numerous infections and my wound developed MRSA and e-coli like it did when I had my transplant, therefore they had to re-open my wound and leave it open. I then developed sepsis and kidney failure and required invasive intervention within LITU. Things then got worst and I got duodenal ulcer and perforation which required surgery and several months of TPN and being nil by mouth. Finally to top it off I got portal vein thrombosis so am now on daily clexane injections. Also, with all the numerous antibiotics for infections I suffered a few allergic reactions.<br />
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Since my discharge in April and apart from the encephalopathy that i have talked about I have also had trouble with my breathing. I can't mobilise without becoming breathless. I have a Lung function appointment in the new year as I think it could be asthma as i often find myself wheezing a lot. Also i was tested for diabetes again and am on the cusp of becoming a diabetic which I really don't think I could cope with again. Since my allergic reactions my skin has become very bad so have been referred to a dermatologist specialist to have some patch tests done.</div>
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Finally, after such a traumatic year I have become very depressed again and been suffering from severe panic attacks which happens at least 3 times a week and I don't know how to control them. It's so depressing and as well as my insomnia it makes sleeping at night very difficult. The transplant co-coordinators and social worker have been good support and have set up psych sessions for me in the new year as they think i may need my anti-depressants to be reviewed and increased.</div>
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So as you can tell it's been quite a rough year to say the least!<br />
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