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.

Health update

Wow, 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.

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.

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.

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.

A Tribute to my Amazing Auntie

It 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.

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.

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.

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.

R.I.P 

In Loving Memory 

Ana Miranda Camba 

26 July 1939 - 20 August 2015

My unexpected trip to Philippines

After 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.

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.

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.

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.

Me & Cousins (Ate Tess, Danna & Nogs)

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Me & My Beloved Auntie

Me & Cousins (Jonathan, Duan, Nogs, Junior & Brian)

Me & My Uncle (Bapa Pol)