One year on...

One year. How quickly time flies. I was told around 12am that a donor liver was found but had to be tested to see if it was healthy. During this time, I was very unconscious as my blood sugar levels were so low. I could pick up on some conversations but not all of it. That night I was extremely scared because I was experiencing a high level of pain, I was drowsy but I was screaming in agony in ITU. The nurse that was looking after me said that pain killers can prove fatal for my condition. I was praying and making lots of duas for my family because as much as I was suffering, they were having to face the fear more than I. They all had to keep my children safe and happy. I hear now that the day I collapsed in Queen Elizabeth Hospital and the night before my transplant, my children were extremely restless. They were both not sleeping and crying a lot and my sister in law just couldn’t comfort them and both of them wouldn’t settle down.

When I was told about the donor liver, I suddenly became oblivious to my pain. I was sad for the family that has lost someone precious but at the same time, I was so relieved. I felt I was already better! Around 6am my parents, sister, husband, nephew, uncle and aunt and my grandmother came to visit me. Immediately I felt really upset because it was so early and they obviously hadn’t slept or eaten breakfast. But the look on their faces! This huge smile that already showed their hope that I’d get better now. They all smothered me with hugs and kisses. My dad, he hugged me and said ‘you’re going to be better now'. When my dad gives me reassurance like that, I feel sure that I will be fine. I find so much strength and blessings in his words. My mother, she looked very worried. I can imagine her worry as a mother because she knew how unwell I was and how massive this surgery was. My husband and mum followed me to the anaesthetist where the doctors made me sign more papers. Every thing they were doing looked so complicated. I was smiling all the while but as soon as my husband and mum left, I cried. I couldn’t let the tears out in front of them because that would make everything so real and so much more scary. I didn’t know what was going to happen in surgery but I wanted them to remember me with a smile rather than looking scared if that was going to be the last time they all saw me. I kissed my children’s picture and off I went into another world.

I was so poorly during the surgery and after it that I was kept sedated for quite a few days as I was crazily pulling on so many wires. I was so delirious and I do have flash backs now of threatening the nurses because I felt so scared. Heavy on sedation on new drugs, it was all too much for me. I remember being somewhat awake during the election day. I think for a good 3 or 4 weeks everything was so blurry and dark. I was still hallucinating. It took me a good 3 weeks to be more alert and aware of my surroundings.

However the election day I can remember because the nurses put the radio on for me. I was still drowsy. In my head I kept thinking David Cameron winning the election was everything to do with my transplant! That he was trying to kill me and stop my transplant. My sister was saying good bye to me and I felt so scared and I just couldn’t tell her ‘dont leave me, David Cameron will kill me'. I couldn’t even move myself to my mouth! The next day, I was listening to the background sounds of the radio and again this time I felt that I was part of David Cameron's success ha! I was waiting for him to announce my name on the radio and I was feeling so pleased and thinking to myself ‘my parents will be so proud of me'. These memories make me giggle at times! This is what a cocktail of general anaesthetic, sedation, morphine and other new drugs do to one person!
I can’t believe how a year has gone so fast but I am feeling good. I am lucky that I have not caught any type of infection that has taken me back into hospital. Although, Queen Elizabeth is an amazing hospital and I miss the nurses so much! I was in there for so long and my nick name had become ‘babs'! They were so wonderful! Some of them would give me a hug when their shift ended or when their shift would start they would come and knock on my window and wave to me cheerily.

One year on and I always wonder what my donor family are doing. I still haven’t managed to bring myself to write to them but this is on my agenda before I go to my next clinic. I just shiver when I think, what if they hadn’t said yes to organ donation? I wouldn’t be here today. I wouldn’t be doing the normal day to day, to most mundane chores in my life. I wouldn’t be screaming my lungs out at my toddler boy, or wrapping them both up in a hug.

My life has changed, of course the fear of rejection remains within me. I’m forever checking my eyes to see if they are yellow and I am more aware of my body. I still have pain on my surgery site but this is normal for a very long time to come.
But I am grateful for still standing and being able to do everything independently again and being able to look after my children and their everyday needs. I am so grateful and thankful for the prayers and love from all my family and friends. I always know that I can never thank them enough. I will never be able to return all this love ever in my whole life.

But I’ll still say it to everyone. Thank you. Thank you for praying so hard for me and showing me and my family so much love. Please keep the prayers coming and I will always keep you in mine.

A year since ITU....

These past few months has been really difficult which I mentioned in another post. I have been trying to not concentrate on the nightmare I went through during these months last year. Reading all my status updates on Facebook has been upsetting but at the same time I have been extremely grateful for being where I am today.

This time last year, I was being taken down to ITU after collapsing suddenly. It was such a confusing experience. I came out of the bathroom feeling really uneasy and so restless. I felt sick for the millionth time again and usually when I was really sick and uneasy at home, I'd pour a jug of cold water on my head to calm myself down. I remember feeling very panicked and the junior doctor as just sitting in the chair asking me questions. It was my first morning in QE hospital after being transferred from Shrewsbury where I stayed for 8 days! The junior doctor kept asking me how I was feeling and was I in any pain and her questions kept making me even more anxious. I stood up to tell her to leave the room and I suddenly fell onto the bed. Strangely, I wasn't actually totally unconscious. I could hear the rush of feet in the background and the nurses stripping me off and putting on the hospital gown on me and attaching a million things onto my body. I could hear so many voices mostly belonging to a few doctors and so many nurses.

I remember this doctor, she kept saying 'poor young girl' and then the other doctor's corrected her to say I was 34 years old with two children. She was so shocked because she thought I was around 17/18! A bit of humour here. She was lovely and kept reassuring the other doctors that they wouldn't lose me, I'll be OK. I was very close to ending up in a coma. I kept wanting to sleep and these lovely nurses kept making me speak and making me frustrated so I wouldn't sleep!

My eldest nephew, I remember he was one of the first people coming in to see me so early in the morning. He was standing next to me crying. Then came in my mum and aunty, uncle and grandmother. This was then followed by my siblings and dad and and husband. It was really hard seeing everyone so upset. They had received a call early morning when I had collapsed. So you can imagine how scared they were.

A year on, and these memories are still very raw. They don't stop me from living my life but of course, it is a natural process to remember where you were this time a year ago. I woke up today feeling very tearful and holding my little daughter. She had come to visit me in ITU but I actually didn't let her see me. She would have felt really anxious and scared so I decided against it.

I was asked by someone, do I feel like me again after nearly a year? My answer was, no. Something so huge changes a person forever. No, I'm not like before. I go through really hard and rough days sometimes and all I want to do is feel rested but that isn't easy with two little ones. I sometimes forget to take my medication which is life depending so I've had to put in alarms on my phone to make sure I do not miss the doses. Some nights I hardly sleep because some of the medications has caused insomnia. I still experience pain on my surgical site and I feel a lot of pressure and tingly sensation there which means I have to sleep in certain positions. I suffer from so much pain on different parts of my joints. At least I can walk now but a few months ago I was finding it hard as my ankle would be in excrutiating pain.

But there are also a lot of positive things in my life. I don't let all that stop me from trying to live my life. I really hate it when people have say 'be grateful', 'move on' or 'someone's worse off than you'. Yeah maybe, but when you're going through a hard time or have been through it, these remarks are very hurtful. Have you been through health problems that nearly killed you? Have you had any form of transplant?

To feel sad and upset about your journey, doesn't mean we are ungrateful. Life isn't about feeling positive all day long. You're allowed to feel sad but then try to bring yourself out of it.

I love my life and I am so grateful and happy to be here today with my children, my amazing family members, and my amazing friends! They have really pulled me out of this nightmare. Lastly, my donor and their family.

What do I say about this family? They gave me life when it was being taken away. I haven't even got in touch with them yet because I do not know how to put it in words yet but I'm definitely planning to do this really soon. They deserve to see what difference their decision has made.

This brings me to the radio interview that I did on Monday! I was invited to tell my story although most of it was cut off to help raise awareness. Before falling ill, I really had no clue about organ donation or how that even made such a difference in someone's life.

I'd like everyone that reads this blog to realise how this affected me and had a donor not been found on time, then the consequences would have been different. I probably wouldn't be here typing up this post. So please, read about it, educate yourself and sign it. Your organs can save a life and a family from being devastated from such a huge loss. If someone else has the chance to live because of you, isn't that amazing? Would you take an organ if your life depended on it? Of course you would. As humans, we are desperate to live when we are so close to dying. So if you'd take it, you should also give it!

Anyway, I'll end this here as motherly duties call me! I have a lovely little toddler to clean up and do some cooking!

Enjoy your weekend :)

A year after

Exactly a year before

Give up or give in....

Well it has been quite a day since I opened my eyes this morning. It started with my daughter who is 8 years old and suffers from a rare disease called Costello Syndrome not wanting to go swimming. This syndrome affects the quality of her life pretty hugely and has since she was born. She was on tube feeds for many many years and it took us over a year to finally wean her off from it! Anyway, she's a wonderful little child and honestly is the most polite and well mannered little lady. She was never a rule breaker but maybe because she broke the norms when she was a tiny little one. I mean, no parent anticipates they'll be feeding their baby via a tube and on special paediatric feeds to up her calories! Anyhow, she was a well behaved child.

Of course she usually loves swimming but from what I know, it isn't the fun splashy lessons she used to have and of course in order to teach her, they have got her doing lots of exercises which Aleena isn't liking at the moment. It took me a long hour to pacify her and she was eventually happy to go to school all happy and ready to get into the pool.

Then my lovely nearly 3 year old son decided today was the day he will cry until I gave up or he gave in. Since 8.30am he has been crying to go and play outside in the garden when it has been raining profusely. I haven't been well and so I wasn't planning to live the moment and go in the garden drenching myself in rain and definitely not so early in the morning. My son usually gives in after half an hour but today this tantrum lasted the whole morning into the afternoon. I had bought him a pair of sandals/shoes to wear outside in the garden when playing and so since yesterday he has been walking in them shoes inside and really wanted to wear them outside.

I sometimes physically do not have the energy to discipline him the way I probably would have before falling ill. Firstly, I find it very hard to be firm with him and carry a nearly 3 year old to a naughty corner which he really doesn't understand or if he does, he pretends he doesn't. I just let him cry and hope that he will soon get himself together which he does eventually. However nowadays he has grown quite a stubborn personality and at times I find myself giving into his demands because I'm tired. Sometimes managing a breakfast without a million hurdles is impossible! I mean for any mother it is impossible anyway and throw into that a mother who has to deal with a child with special needs, a terrible two toddler and then a mother who has her good days with health and then the bad days. Of course, my husband helps out a lot and he is finding our little rebel of a toddler difficult these days. We are either hiding in the kitchen trying to get a hot cup of coffee with some snacks or we are dealing with this little terror dangling on us or pulling and pushing us. Breakfast is a must for me though as I have medications to take early in the morning without fail and then in the evening. So I have to stick to a good routine and make sure to take my anti rejection medications on time and same time everyday.

Of course he doesn't always behave like that but today was one of those days we had where everything was upsetting him. He was a happy bunny eventually when it got sunny and he was was able to wear his 'pider man' sandals outside!

On the other hand my daughter came back from school asking me 'can I go swimming tomorrow?'. I mean it took me an hour to make her understand how important it was she took part in her lessons and stop her from crying only for her to want to go swimming again tomorrow. What do I say? I have two entertaining souls in my life who make sure that I am never bored! Ha!

So this was my day! Full of humorous moments and me trying to get to my medication on time. It is hard being a mother again after a transplant. Having to regain the physical stamina and mental capacity to help two little people develop and reach their full abilities. I hope I am doing a good job and I hope my children know that I have my struggles but everyday I am trying to be the mother I once was.

Here's hoping to a peaceful day tomorrow. I am planning to start toilet training my son in the next week or so, so I'll be writing up posts on my experience with this little man.

Another little news. I will be coming on BBC Radio 4 on Monday 18th April between 10-11am in the women's hour to talk about my transplant. So tune in and listen out for me!

In his spiderman shoes!

Happy Mother's day!

Like every year, we see super markets and card shops and almost every retailer putting up posters and advertising this lovely occasion. An occasion which definitely should be celebrated all throughout the year because our mother's deserve every bit of love and care for nurturing us, for staying awake most nights when we were babies as our cries caused them heartache, for cooking us nutritional food to keep us growing and healthy and the list can go on. I don't think we can ever sit down and make a long list of what our mother's have done for us because to this day, the list would be endless.

I have two children, and they are only 8 and 2 and I feel the struggle of my mother who had 5 children, four of whom had smaller age gaps. I really cannot imagine looking after more than two children so having that many and keeping up with them whilst they grow and their needs change....well it must be overwhelming. I know some days I'm overwhelmed by so much and other days, I think 'well it wasn't too bad today, I hardly told them off or raised my voice today'.

So hats off to all those wonderful mother's that have raised us and kept us alive! And lots of love and respect to the mother's who are single and living this role every day with little support.

As this day was approaching for myself, I felt quite sad. Actually, since mid January I have been feeling very lost and wrapped up in my own little bubble. This January marked a year since I actually started feeling the symptoms of liver failure but at that point I did not even know it was that. By this time last year, I was literally either in bed or lying on the sofa most days after completing my parental duties. So, this has naturally bought about a lot of pain and feelings of fear and sadness. February also marked an entire year since my uncle passed away and last year I couldn't grieve for him as much because my own health issues had consumed me. His death had put a lot of fear within me because for so many weeks I had ignored my illness but somehow deep down I was really scared about some major revelation about my health. I had wondered so many times that I either had pancreas cancer or some form of stomach cancer because you just do not vomit 20 times a day from mid Jan to february/march. I was struggling to cope with my children when my husband was at work because let's face it, you have to work in order to survive no matter how much goes on in your home life. It was a lot for him to deal with too coming home from a stressful job and taking over with the children - which he did with absolute love and dedication and still does.

I look back now and I just wonder 'how did I do it? How did I manage to look after my children from mid January all the way to the end of March?'. It was just around easter holidays that I had become very yellow. I do remember being yellow beginning of march but I didn't even know what that meant during that point in my life. You hear of babies having jaundice right? I have never really looked into jaundice or serious health issues because I was only young. You do not expect something like that to take place in your life and shake up your entire life.

I spent so many weeks just living in the bathroom vomiting and doubling over in pain. It wasn't something that happened only during the day but it was an entire day and night thing. I was extremely sleep deprived and during that time my son who was a year old, he started playing up with sleep and would cry all night. I just remember running to the bathroom day and night about 20 times vomiting. I would come out of the bathroom and scream to my daughter 'I'm OK Aleena, mummy just needed the loo'. She is an anxious little girl who has had a rough time in life with her own health issues because of her rare genetic condition.

I'd have to paste on a smile before she left for school and after she would come back. She knew though, she knew her mummy was not fine.

So this year has bought back some horrible feelings and memories and it brings me to this subject of 'anxiety'. This is something I have never come across apart from during presentations in university. I was never a public speaker and my heart would beat so fast and I'd become all sweaty and nervous. I actually lost a few marks in university because I had to be excused from these assessments!

Ever since October, I've had quite a bit of anxiety. I suddenly feel that my heart is racing, I start panicking and feel really isolated and scared. You can't really talk to many people about this subject because those that have not suffered it will say 'do something that takes your mind off it' or 'stop thinking about it and it will stop'. The ignorance makes me laugh. I'm sure those that suffer from anxiety will know that you do not wait for it and neither can you ignore it. It is something that comes on unexpectedly without warning. It takes over your life and thoughts and suddenly you feel like the loneliest person on the planet.

For me though, I'm still waiting to see a therapist however in the mean time it has calmed down and I've managed to find my own ways to control it all. It isn't something I actually speak about but I felt today is mothers day. It is hard to be a mother even when you are standing tall and healthy because everyday brings new challenges for us mums. However, to top it with health issues, anxiety, depression....it makes it so much more harder and challenging. You almost feel like giving up but you push yourself up and you just look at your beautiful children and know that you cannot just give up. You have to fight this battle, you have to keep going and finding things to focus on.

Today, I'd like to dedicate this post to all those mother's who have serious health concerns including anxiety and depression. You're really doing an amazing job because right this moment you can give up but you won't. Yes your emotions are all over the place but you're still controlling them. You're still here and your children are all the more happier to have you here, like mine are happy to have me.

I'd also like to add that if you have friends or family members going through health issues and anxiety problems, don't leave them in the dark. Help them. They may not ask for it but they do need it. Sometimes they may want to just sit there quietly crying so let them. It is a healing process. Don't always think of giving advice or saying comforting words. Sometimes let them cry, you just hold them or listen to them and reassure them that you are there. Some souls go through very tough times and I know I'm one of them.

I've had life changing events which I have never thought would happen and sometimes, I miss my old friends being around me physically. I feel a good cry would heal my soul or just having them around me would lift up my mood. It isn't easy when your life is consumed by medications which are so strong, endless health worries and hospital appointments. Your life that was once-upon-a-time just normal, healthy has become a mountain of worries where you can see the light but it is hard to reach it.

I look at my children and I see hope and happiness in them. I see courage and dreams in them. So for now, I'll take each day at a time and muddle through my worries one by one. It isn't that I'm not enjoying my life or I am not grateful, it is more, accepting that my life has changed and I have to let go of the old me and adapt to the new me - which for now I'm trying to understand who I am.

Happy mother's day to all my lovely friends that struggle like me everyday but manage to get to the next day.

My world

I have so far talked about my transplant and the support I received from my family and friends and how my children were my motivation to keep my will power when there were days I felt like giving up. There were days I just felt like I wanted everything to end because I did not want another day of vomiting 24 hours. I did not want my privacy being invaded by people I did not know. I'm like an open book, I can speak to anyone about my life without hesitation but I'm fiercely independent about many factors in my life. I will not always speak about how I truly feel inside and what goes on in my little head. These things I keep for the close people in my life who understand me. I do not think everyone understands because you'd have to see someone very closely to understand the life they live and I'm a person that doesn't break down very quickly. An example is my daughter.

My daughter Aleena, she is the reason why I love life and why I will not break down. I had a very complicated pregnancy with my daughter and I was not even sure if I was going to have her in my life for too long. She was born on the 17th February 2008 via c-section. My grand father passed away a few hours after her birth. The day is a bittersweet memory. My grandfather suffered from a long term illness. It was a tough day to say the least. I wasn't sure whether I should be happy or crying. We bought Aleena home after 3 days and it was a hard time. So many emotions go through my mind when I think of that time. My daughter had difficulty feeding and could only take in 30  ml of milk

 every 3 hours and she would cry. I used to keep looking at her and I just knew deep down she looked different. I knew there was something wrong. She was hospitalised after a week again because of weight loss and dehydration. This is where the nurses tried feeding her with every given designed teats and bottles but she wasn't planning to make easy for us! We eventually had the speech therapist, a consultant, neurologist, cardiologist and geneticist on board. She was a very floppy baby with lots of loose skin. We luckily had a geneticist who saw a few more children with her condition and clinically she was diagnosed with Costello Syndrome a few months later the bloods confirmed this. I think my world shattered then. I can't remember crying that much because the important part here was we needed to feed her to let her grow. We discovered she had heart issues too and other issues with global development. So for 4 years we tube fed Aleena. Those were tough days. Me and my husband found it so hard with lack of sleep as she would cry and we would have to do certain things before tube feeding her to check her NG tube was in its right place. She had severe reflux so we would have to wait for a vomit shower quite literally after every feed. She failed to thrive sadly because of all these initial problems and so was on high calorie feeds. A moment when we were meant to be happy, we were left feeling really anxious for her future and trying to live this new life and slowly getting rid of bottles and things that Aleena didn't need.

She now eats fine. It took me a few years to wean her off from tubes. I was trained in changing NG tubes and her Mickey button in her little tummy. But she has taught us so much. We worked at her pace and we noticed all her little tiny developments that parents do not always notice because a typical baby grows pretty fast. We enjoyed having Aleena as a baby for so long and we loved her charming attitude. She has the most gorgeous smile and that is a trait of Costello Syndrome. They have this infectious smile and giggle and the most humourous character. Her whole medical team just loved Aleena and they never forget her.

She will be turning 8 years old soon. She still has lots of problems and she will always sadly have these problems however she is my reason of strength. She has the most affectionate and caring and sharing nature. She is never bored of life and even makes a trip to the corner shop sound like a trip abroad! She never misses an opportunity to party or celebrate any event. For her life is just beautiful and exciting. She makes her lunch time and dinner time sound so exciting. All the family know how much she loves food and eating out. How can you feel sad when you have a little person like that in your life? She gets most of her character from me. We are like two peas in a pod and we love eating, celebrating events, going out, having a family get together. She's also probably the most loving big sister someone could have.

My son Isam, he was born on 13th July 2013. What do I say about this little cute monster? He currently rules our house. If Aleena taught us patience, he taught us how to lose it fast enough in a good way. Isam bought a lot of happiness to our lives. Its like we were waiting for the day he arrives because he was bringing lots of joy with him. We experienced for the first time the joy of becoming parents to a healthy child. There was no drama with this little one. Everything was sort of smooth but he taught us to be parents all over again. Because Aleena was tube fed, this was our first time to bottle feed and sterilise bottles. Aleena's tubes came on sterilised packs for each use. He loved sleeping which was a bliss. Aleena did not sleep for 4 years properly. This little monster is teaching us so many new things. Aleena did not get up to the typical toddler naughtiness like Isam. She was always well behaved and never touched anything around the house. When she was told NO, she understood that. At the moment we are hiding things around the house because whatever he gets his hands on, it is either destroyed or all over the house (like moisturiser etc).

My two little children were my reason for trying to keep strong until the transplant. I  am not sure if I would have had that will power to carry on otherwise. It wasn't easy trying to live with all the symptoms of liver failure. After the transplant, I'd hate to even have a shower or get out of bed because of the energy it required. However the days I knew they were coming to visit me would give me the ability to go and have a shower and look a bit presentable. I saw the looks on their faces when they came in though. Aleena looked distant and did not always want to talk to me or be in hospital for so long. I know it was more difficult for her than my son. My son completely ignored me for months. That was very hard because I missed out on a lot of things with my son. We are OK now though. We have built a bond again and he is certainly keeping me on my toes. I love seeing the bond my two children share. When I was at hospital, Isam was everything to Aleena. They helped each other out in their own little ways.

Our life is not the same as it was once upon a time. We all do fear the future because of rejection and in case of problems in the future. However I think as a family of 4 we have learned to live a bit more spontaneously and appreciate the time we have together. My husband and me work together to make sure the children are happy first and foremost. I think we will live like this for a long time to come. I want to make the happiest memories for my children and make sure while I'm around they enjoy life. It doesn't mean we have to go and do crazy things. It could be a trip to local corner shop which is exciting enough for Aleena and Isam.

If you have children, enjoy life with them. We never know what is around the corner.  Life can complicated within a second and so it is important to stress less and enjoy more with our family.

If you are going through a hard time with liver failure symptoms or post transplant stress then you can freely contact me. I'm happy to answer questions. I've had quite a few people look through this blog and I know a lot of people look for a happy ending especially when they are parents.

There will be a happy ending for you but you have to try and stay positive. I know it isn't easy living with the liver failure symptoms but you will soon have that transplant and get your life back to normal with the help of your family members.

I'm enjoying my life a lot now and I have a lot of energy. I am able to look after my children now and do things with them. Only a few months ago I went to a soft play centre where there was a party. I was scared to go on one of the long slides with my children in case I hurt myself but I just took the opportunity. Then no one was able to stop me!

Little steps will turn into bigger things slowly.

The pictures above are with my family before I fell ill.

3 of my younger sibling at a wedding 3 months after transplant. I have another younger brother who was missing from the picture.

My mum's side of the family during the Christmas break.

The above pictures are after my transplant.

I have a lot more family than this and many friends to be thankful for.

Stubborn recovery

I still cannot always remember my transplant date and I always have to ask my husband for it. I had my transplant on 4th May 2015. The day that I remember coming around was the election day because the nurses put the radio on for me. I think I was kept under a lot of sedation because I was very restless when I did wake up after 2 days. I was still confused for weeks after that. I was in hospital for 6 more weeks after that transplant due to a few unsatisfactory blood results and fluid around my legs. My legs were so heavy that two nurses would have to lift it up on to the bed. It took me about 6 weeks to even walk with a bit of pace because that is when the fluid came down in my legs. I was constantly breathless and tired. Lying just on my back was making me frustrated as I was in constant pain. Life can be so frustrating when we do not have the gift of our mobility. It is so difficult to rely on people to take you to the toilet, to give you a shower, brush your hair, lift you into a position you are comfortable with. There were so many side effects to the medication. I suffered from constant nausea and vomiting all day. I couldn't even smell food so looking at it or even trying to eat was hard but I had to try to eat. My lovely aunty would send in food most days but even one bite took me half an hour to chew and swallow. I did regain my appetite back after 3 months post transplant.

As much it was lonely to be in one place on my own, it was just as much an experience that I will never forget. It was like being born again and learning how to walk, then learning to pick up the pace without wobbling. Learning how to eat and chew and swallow again and finally learning how to live again. It was such a nightmare but it taught me so much. I learnt how loved I was. We know we are loved but I do not think we get to see how many people come together for us because that usually happens after death. I got to see it in my life time. The amount of love and prayers I have received is beyond my imagination. I have such an amazing amount of people in my life. I have my lovely aunts and uncles who have gone through a tough time thanks to me! But I felt like a little kid again when they came to visit me. My cousins coming in with tears and banters. Our banters do not stop even in a serious occasion but we need to feel light and happy somehow! All my beautiful extended families that I have not seen in years came to visit me. In my heart I was so thankful even if I couldn't say it out loud because of the lethargy. I have such awesome and amazing relatives. I equally have amazing friends who constantly were with me. I'll just never forget this chapter in my life.

How do I feel now 8 months post transplant? I have great days but I equally have very emotional days. Some days I am so happy and the next day I might feel anxious and upset and recently very angry. This chapter has left me quite rattled in many ways and humbled in other ways. How do I manage it? It is hard because where I live currently, I have just my in laws and limited friends who are great. But I miss being around all my friends and family in Cardiff. However even then, I have such great friends who will everyday look out for me via WhatsApp or messages. I have a few lovely WhatsApp group where I can talk about the days I am feeling down and they will read and let me have an outburst. I have amazing cousins who always look out for me and I have one very amazing cousin that is always there! She knows who she is! I have relatives that I can pick up the phone to and cry. I have great in laws and nephews and niece that I can also talk to.

I have accepted this is going to be a year full of mixed emotions. I have to somehow shuffle through it slowly without rushing anything. However I am adamant on being stubbornly happy. Happy for my children. They need to see their mum in the happiest and healthiest form. They are my motivation to not break down and allow the ghosts to take over me. I will get through this anf emerge a better person.

So to those that are heading for a transplant or have had one recently, slow down. Take each day as it comes. Do not ignore the feelings you go through. You will experience anger, anxiety and sadness. It isn't a mile that you have to run, it is a cross country run where you will face harsh terrain and lots of bumps. Take every help you are offered because they are offering it out of love. Take the help of every friend and relative that want to be there and want you to reach your goal to recovery. There will be plenty of beautiful people there to help you because there are good people everywhere. I mean even my neighbours were praying for me and they were just so happy to see me home! But never forget these people because whoever is with us on our tough times especially this type of toughness, deserve a medal!

There may never come a time where we will fully recover because deep scars do not heal so quickly especially when you fall ill very suddenly. It is OK to have sad days but remember we are lucky to be living. We are lucky to be with our family, children, parents, siblings and friends. There are so many awaiting a donor and having to live a life in fear. We are the lucky people to be living and telling the story thank you to the donors. I do not mention my donor but that is because I am still not ready to enter that part of my life yet. However I will get there and I hope one day I can even meet my donor family!

Back to the ward after ITU....

Sorry I had such a long break from my first post. I am still adjusting to life after a transplant and the medications leave me quite tired by the end of the day! I will continue with my journey from ITU to the transplant in this post.

A few days after my visit at the ITU, I was transferred back to the ward. The consultant at the ITU had said we could either start the process of putting me on the list or try out some other drugs to see if it made a difference to the liver. One thing all the specialists were surprised with was my liver function results which were so high and my physical health. My results indicated that I should have been experiencing more episodes of encephalopathy and not even standing still. They tested my hands a lot to see if they were flapping or not. When the liver fails, our hands get weak and when you stretch it out, it starts flapping. Amazingly, my hands were strong, I was able to still walk, talk and was still somewhat aware of my surroundings.

Once I was transferred on the ward, I was put on Azathioprine via IV. My INR was stable for a few days. I was still being tested for many other conditions such as Wilson's. I was being prepared for another biopsy too but this time they were prepared to use a lot of blood clotting products to make it successful. Unfortunately, I still could not eat and I was on tube feeds. I was still vomiting.

I felt really depressed with the tube in my nose because my daughter who is now 7.5 years old was tube fed for the first 4 years of her life. I remember being told that it doesn't hurt to have the tube put it in and once it is in, you cannot feel it. I felt it alright! I couldn't lay down comfortably because the tube would make me gag at certain angles. This experience made me cry a lot because my daughter definitely felt it and I knew why she cried a lot now. I was the one that used to put in the NG tube through her nose as it had to be changed so regularly.

Anyway, after 4 days of Aza, my INR starting increasing sadly. The biopsy sadly didn't show any answer apart from acute liver failure or seronegative hepatitis. I started getting confused due to encephalopathy. It was very difficult for my parents to see me suffer and see me so vulnerable. I would feel really sad when they'd come in and see me lying down like a vegetable. I started suffering from hypos as well due to low sugar problems. I'd just become drowsy and sweaty. During these times, they'd give me a glucose stick and rub it in the side of my cheeks. At times I was aware of my surroundings and other times I would be drowsy for hours and pretty confused.

After 6 days on Aza, I was told my INR was increasing very fast and my mental state was very bad. I would try to message friends and family but I'd forget who I was messaging and what I was even typing. I'd get frustrated and put my phone away. The specialist was keeping an eye on me and he came in to ask me 'how is your whatsapping going?'. He knew I was confused and couldn't remember much and I admitted that to him. They did another test which showed my results had deteriorated and I was very confused due to the toxins. This is when they came in a huge team with so many specialists to say, I had very little time left. Maybe a few days to a week but they didn't think I'd make it to a week. They said I'd have to be put on a super urgent list as I needed a transplant as soon as possible and before my INR reached so high that transplant would not even be an option by that time.

All I remember was that I was on my own. I was trying to ask questions but I couldn't even speak. Tears were streaming down my face. The consultants were very kind though. One of them held my hand and told me to cry and let it out of my system. He asked me what I was worried about and I said my children. Would I make it? How long would I have after a transplant and what were the risks that came with it? I just remember blurting out that my daughter needed me and I needed to be healthy to get back to her. The doctors just said, i should let my children and family come to see me that day. I knew why. They were worried I'd run out of time. After the consultants left, I drew the curtains and just cried. I didn't know who to call because I couldn't remember how to even use my mobile. However, I managed to call my best friend. I'm not sure how I managed to bring her number up but I did.

My mother came in the afternoon to find out the news. She was amazingly strong. She cried but she made me have a shower. Brushed my hair. That day my sister said that one of my friend from college was travelling down to visit me. I remember not wanting to see anyone because I was in a very horrible state. I came out of the shower and my mum brushed my hair and as I sat down, she came in.

It was amazing to see her. That day she made me laugh so much after such a long time. She reminded me of all the silly things we did in college and we just laughed. I remember my surgeon coming in to meet me and because I was forgetting things, I made her take in what he said. She was amazing and truthfully, seeing her really made me more brave and courageous.

In the evening my in laws, my father, my children had all come to see me. I prepared myself not to cry because I didn't want my daughter seeing me so sad if that was going to be the last time she saw me. As it was she was finding it difficult to comprehend why I was in hospital with IV and tube in my nose. My son, he was too scared to come near me. That was very difficult. During their visit the transplant coordinator came to meet us to sign papers and to discuss the risks and possibility of me falling more ill before there was an available donor. 

Saying good bye to my children was probably the most hardest test! Keeping the tears in was very difficult. But I managed to keep it in and managed to tell my daughter that she wouldn't be seeing me for a very long time. I had already decided that my children will only see me once I've had most of the tube removed and a little better after the surgery. I really hope no one ever has to go through such a stage in their lives. How do you say good bye to two little children that have no idea about what is happening to their mother? 

After being put on the super urgent list, I fell more ill. I was so confused and started imagining things. There were times I was very delirious and imagining conversations. I remember when all my cousins came to visit me, I apologised to them in advance in case I said something wrong. I was extremely tired by then and I just wanted to sleep.

The nurses looked after me so much. I had my favourites who knew me as the trouble maker on the ward because of the first day I collapsed. It was their hand over time and they were about to go home but couldn't quite make it out of the door! They'd really cheer me up and make jokes and laugh. I was still walking to the bathroom in the corridor because I was too stubborn to use a comode. I felt refreshed when I could get out of the ward and just walk in the corridor.

I do remember crying a lot though because I didn't think I'd make it for a transplant. My sister would really try to lift my mood and my dad would always be confident that there will be a donor. It was a very puzzling time because to find the gift of life, someone would have to lose their life. Even then, I kept praying for a longer lease of life for the sake of my children. 

After a day of being listed on the super urgent list, I was transferred to the higher dependent ward because of frequent hypos and encephalopathy. When I was put on that ward, I remember asking the nurse to help put the TV on for me so I could see Kate Middleton as she had a baby girl. I had forgotten how to use the TV and so the nurse helped me. Before I could even watch the news, I went into a hypo and I was drowsy until early morning. I remember seeing another patient who asked me how I was and she knew my name. I was with her another room but to this day I cannot remember which room. There are certain things I have forgotten but certain things I can remember.

That afternoon, I was transferred back to ITU because they said my health was very bad and if a donor didn't arrive, I may be put on life support machine to keep me stable. I had said good night to everyone. I wasn't allowed to get out of bed without any assistance that night. The nurse washed me and put me to bed. I had started bleeding from many parts of my body because of high INR. As I drifted off to sleep I was woken up by liver pain for the first time ever during this ordeal. I remember crying in pain and the nurse said that I was not allowed any pain killers as it would worsen my liver. I was still drowsy but I could see the team of liver doctors right in front of me saying that I needed a transplant very soon. I was in pain but I was also crying because I was missing my children and family. I was also praying a lot. Next to my bed, I had another man who was Bengali. He could hear my painful screams. He asked his nurse I'd they'd check on me even though my nurse was with me. Around 12am, the specialist came to tell me there was a liver but they would have to test to see how healthy it was. However it was a match. The tests took quite a few hours because it was at 4am they came and confirmed that the liver was healthy and the transplant would go ahead in the early hours. I felt sad that someone had lost their loved one and didn't feel like it was right to feel happy. However I felt at ease hoping that I would get better. After the news, i managed to talk to the patient next to me. He was such a lovely man as he again motivated me to feel positive and to believe that I will go home back to my children. 

My whole family including my eldest uncle, my grandmother, aunty, parents, sister, nephew and husband came early to visit me before the surgery. By that time I did feel more hopeful but it was hard trying to stay strong and smile through to the operating theatre just so my family members would not cry especially my parents. So much was going through my mind but I just remember not dwelling on it much. Just before I fell asleep I remember the surgeon telling me that the liver was healthy and that was that. The next time I came around was a few days after the surgery.

This so far was my journey towards a transplant. That had its own challenges. When I woke up, I was faced with new challenges and obstacles to over come. Transplant path is never easy and I've never anticipated for such a tragedy to take place in my life. I felt that the biggest test for me was bringing up my daughter. How wrong was I, little did I know that we had another big tornado entering our lives. All I can say is thank you to all my family members and friends from the bottom of my heart. Your prayers and positive thoughts kept me going. Your messages and visits were always close to my heart. It kept me fighting to overcome this ordeal. Thank you to everyone that helped me through life after the transplant and who are still helping me. My parents, my siblings which I love dearly! My sister for putting up with my requests and orders (the only time in my life I got to boss her about!), my 3 brothers who I love so much, my husband for putting up with my mood swings and driving up and down, my in laws who took in my children and looked after them. My eldest nephew for coming to hospital every day and discussing my progress with the doctors, my uncles and aunts and my beautiful cousins, all my relatives and my beautiful friends who to this day still keep a close eye on me through messages and calls. I'll never ever forget the support.

The picture below is when I was transferred to Queen Elizabeth Hospital where I had jaundice and I was swollen.