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!