It's been another rollercoaster of a year starting great, then another major bump in the road but ending the year on a high. I can't complain because i'm still very fortunate to be alive and i've made some progress in my health despite other complications which i also managed to overcome. I've also made some amazing friends along the way as well as built on existing friendships.
The highlights of the year for me is the day i got discharged from hospital after 6 months and getting on a plane to go on my long awaited holiday to the US and seeing my family again after so many years. My wish for 2009 is to start living again and continue to grow as a person and hopefully start building my future.
Happy New Year Everyone! Have a happy and healthy 2009!!!
Wednesday 31 December 2008
Monday 22 September 2008
Hospital Montage
Here is a montage of my latest hospital admission from March 11 - August 26 2008.
* Biliary reconstruction
* Stomach perforation surgery x2
* 5 months TPN due to enterocutaneous fistula
Thank you yet again to all those involved in my care @ Kings College Hospital and to all my friends and family who have supported me.
* Biliary reconstruction
* Stomach perforation surgery x2
* 5 months TPN due to enterocutaneous fistula
Thank you yet again to all those involved in my care @ Kings College Hospital and to all my friends and family who have supported me.
Tuesday 16 September 2008
Here we go again…Round 3!
Yes you’ve guessed right. I have been away from this blog for a while because I have been back in hospital since March 11th. Initially it was an elective scheduled surgery that I was going to have my PTC tube removed and undergo wound closure and biliary reconstruction if need be. The surgeons being reluctant to do the surgery due to worries that they may cause other complications during the surgery as it is a very delicate surgery because of my ‘abnormal’ anatomy delayed my surgery by about 3 weeks. When my PTC tube was removed it was clear that I would not be able to go long with it causing another infection and eventually sepsis so they decided to go ahead with the surgery.
On the afternoon of April 5th 2008 I went into theatre, the operation lasted 4 hours and I was brought straight to LITU to come round. Luckily I was not intubated when I woke up as that was what I was dreading the most. Everything seemed to be going well, I was moved to the ward the next morning and everyday I kept getting stronger and feeling great and I was please at how my stomach looked. I was recovering so well that I was due to be discharged the next week.
However, bad luck decided to strike again unexpectedly that weekend. I was in immense pain that the pain relief was not helping so they put me back on the PCA which eventually helped slightly, however I then started leaking from my wound so I had numerous emergency scans which showed that I had a perforation within my stomach and that it needed to be fixed by surgery. I was immediatly put on the emergency surgery list for the following morning. After a restless night of immense pain I went into theatre early the next morning. After the surgery I was brought back to LITU for another day before transferred back to the ward again. Unfortunately that was not the end of my bad luck as it just kept getting worst over the next few months. 3 days later my stomach perforated yet again, which meant back into surgery for a third time but unfortunately for me it didn’t work again so they gave up on doing anymore surgery and tried another technique which involved me having to go on long term TPN and be nil by mouth for a few months until my stomach heals naturally.
Weeks and months were passing by and I was becoming so frustrated and depressed and the pain was often unbearable. They tried several times to let me eat again but it just kept coming back out of the hole in my stomach and at one point due to my dressings being done incorrectly resulted in a collection in my wound so it had to be re-opened and drained again which prolonged my healing time.
The final plan in July was to leave me nil by mouth again until September and to remain in hospital on TPN until that time as it was not practical to send me home on TPN or to put an NJ. However, they gradually decreased the feeding time which allowed me to be free to go out during the afternoons and to go home for a few hours every weekend. Midway through August my PICC line started to become very sore and it looked like it was becoming infected so they decided to take it out and scheduled me for another PICC line insertion but because the waiting lists were so long they estimated I would be waiting for a couple of weeks so they eventually decided to give me another shot at eating and thankfully nothing was coming out anywhere and I was keeping it down although I did feel nauseas at first but never threw it up and as they days passed and I managed a whole weekend at home my appetite was slowly getting better and so when I came back from my weekend leave they decided that they were happy to discharge me given that I promised that I would try to eat more as I could only tolerate spoonfuls at that point and my stomach has been used to not being fed for months.
I have been home 3 weeks today and all is going great, my appetite is almost completely back to normal. I have a lot more energy and my pain levels have subsided immensely, my main problem at the moment is the pain in my legs due to the arthritis and osteoporosis. Due to my stomach problems now my doctors have discontinued my medication for the osteoporosis as it causes stomach ulcers therefore my legs are getting worst, but I am trying to go back to physio and doing daily exercises to strengthen my bones. Also another thing that sometimes gets me down is my enlarged stomach as I look heavily pregnant and it’s just so uncomfortable and not attractive at all. Anyway, I try to look at it from a positive point of view and the main thing is that I’m alive!
I am now feeling more positive about life and I’m eager to get my life back on track and hopefully start to build a future and career for myself. Although for the rest of this year I just want to finish it taking it easy to fully recover but at the same time enjoy life and so am in the process of booking my holiday to the US for Christmas before I get stuck back into work and studies again next year as I am completely done with hospitals. I think I’ve had my fair share of struggles that it’s time for me to be happy as that’s the reason why I fought to survive...
On the afternoon of April 5th 2008 I went into theatre, the operation lasted 4 hours and I was brought straight to LITU to come round. Luckily I was not intubated when I woke up as that was what I was dreading the most. Everything seemed to be going well, I was moved to the ward the next morning and everyday I kept getting stronger and feeling great and I was please at how my stomach looked. I was recovering so well that I was due to be discharged the next week.
However, bad luck decided to strike again unexpectedly that weekend. I was in immense pain that the pain relief was not helping so they put me back on the PCA which eventually helped slightly, however I then started leaking from my wound so I had numerous emergency scans which showed that I had a perforation within my stomach and that it needed to be fixed by surgery. I was immediatly put on the emergency surgery list for the following morning. After a restless night of immense pain I went into theatre early the next morning. After the surgery I was brought back to LITU for another day before transferred back to the ward again. Unfortunately that was not the end of my bad luck as it just kept getting worst over the next few months. 3 days later my stomach perforated yet again, which meant back into surgery for a third time but unfortunately for me it didn’t work again so they gave up on doing anymore surgery and tried another technique which involved me having to go on long term TPN and be nil by mouth for a few months until my stomach heals naturally.
Weeks and months were passing by and I was becoming so frustrated and depressed and the pain was often unbearable. They tried several times to let me eat again but it just kept coming back out of the hole in my stomach and at one point due to my dressings being done incorrectly resulted in a collection in my wound so it had to be re-opened and drained again which prolonged my healing time.
The final plan in July was to leave me nil by mouth again until September and to remain in hospital on TPN until that time as it was not practical to send me home on TPN or to put an NJ. However, they gradually decreased the feeding time which allowed me to be free to go out during the afternoons and to go home for a few hours every weekend. Midway through August my PICC line started to become very sore and it looked like it was becoming infected so they decided to take it out and scheduled me for another PICC line insertion but because the waiting lists were so long they estimated I would be waiting for a couple of weeks so they eventually decided to give me another shot at eating and thankfully nothing was coming out anywhere and I was keeping it down although I did feel nauseas at first but never threw it up and as they days passed and I managed a whole weekend at home my appetite was slowly getting better and so when I came back from my weekend leave they decided that they were happy to discharge me given that I promised that I would try to eat more as I could only tolerate spoonfuls at that point and my stomach has been used to not being fed for months.
I have been home 3 weeks today and all is going great, my appetite is almost completely back to normal. I have a lot more energy and my pain levels have subsided immensely, my main problem at the moment is the pain in my legs due to the arthritis and osteoporosis. Due to my stomach problems now my doctors have discontinued my medication for the osteoporosis as it causes stomach ulcers therefore my legs are getting worst, but I am trying to go back to physio and doing daily exercises to strengthen my bones. Also another thing that sometimes gets me down is my enlarged stomach as I look heavily pregnant and it’s just so uncomfortable and not attractive at all. Anyway, I try to look at it from a positive point of view and the main thing is that I’m alive!
I am now feeling more positive about life and I’m eager to get my life back on track and hopefully start to build a future and career for myself. Although for the rest of this year I just want to finish it taking it easy to fully recover but at the same time enjoy life and so am in the process of booking my holiday to the US for Christmas before I get stuck back into work and studies again next year as I am completely done with hospitals. I think I’ve had my fair share of struggles that it’s time for me to be happy as that’s the reason why I fought to survive...
Friday 14 March 2008
Emotional Journey
With illness comes a whole seperate emotional journey and the last year and a half has been an emotional rollercoaster.It all started the day i was told that i needed a second transplant. As my health deteriorated so did i emotionally as i was becoming frustrated with being in hospital, scared with the thought that a liver might not come in time, depressed because i felt like my world had come crashing down on me again when i was feeling great. I could'nt understand why this was happening again and there were many a times that i wanted to say enough is enough i can't go on anymore and i wanted to give up.
As the weeks and months passed and still no sign of a liver and becoming more ill by the day i often thought to myself, is all this suffering worth it? As i said before i don't remember much of what happened to me during those critical days but all i can remember was many sleepless and tearful nights of pain both physically and mentally. I also hated the light, and the sound of tv or music. I just wanted to be in a quiet dark room cos that is how i felt at the time. Even as i write this little memories come flooding back and am feeling quite emotional and tearful.
Although i had loads of support from my family, friends, colleaugues and hospital staff i still felt i was all on my own and no one could help me. I left my fate in God's hands and never have i felt so close to him than i did during those dark days. It was like no matter how bad the situation got he was holding me close and even though in my head i wanted to give up he never let my body give up on me.
During my stay i saw numerous psychologists and phsychiatrics and a counsellor but nothing really helped me as no matter what people said to me i didn't change the way i felt about myself and could'nt accept what was happening to me and i started to hate myself because i felt like such a burden to my family especially my mum and to the hospital staff and when i became totally immobile and helpless that was the worst part and i was filled wih guilt and thats when i felt that i had totally lost control of everything in my life.
After all my surgeries i was left with a big open wound which had to heal naturally and everytime i looked at my stomach i thought to myself no one will ever accept me with this. I felt like the ugliest and fattest person in the world. I always tried to remind myself that there are alot of people who are worst off than me and that i must be grateful that i am still alive but still i hated myself and looking at all my pictures from before my transplant was just so hard as i know i'll never get back what i had and that i have to accept the new me.
When i was finally discharged you would of thought that after 10 months in hospital i would be excited to come home but when i got home because my mobility was still restricted alot i had to be carried upstairs to our flat and as soon as i got in i just wanted to be back in hospital. It didnt feel like home anymore and i didn't have the safety of having the nurses and doctors around and i had to depend on my mum and cousin for everything which i hated. I hated myself for putting all this on them as i am a very independent person.
Looking in the mirror again was one of the biggest challenges i had to deal with. It may sound like nothing but i could not look in the mirror since i started becoming jaundiced and i had no motivation to dress up or make an effort to look a little bit respectable because i just felt so ugly inside that i thought no matter what i do or wear will make any difference and it was eating me up inside and thats when i began to shut people out. I would not answer phonecalls, texts and i didn't want visitors and that was when i found out how my true friends were, because some could not understand and thought that i had changed intentionally therefore changed their attitudes towards me too, but my true friends have stuck by me no matter what i did they were patient with me although i did get a few lectures and still do.
I was finally convinced by my social worker and transplant co-ordinator to try counselling again, so i did for 9 weeks and i had a lovely counsellor who managed to boost my self esteem up a bit and help me deal with relationship issues with my friends and family. Sadly she left the hospital and since then i have not have the courage to go and see someone else, but without her i think i still would be an emotional wreck.
Dealing with my mental state has been just as hard as dealing with my physical health issues, sometimes it feels harder cos it's inside my head all the time and i can honestly say that sometimes it got the better of me and i've done some stupid things. I like to think that i'm much better these days and i hope that someday i can say that those were the hardest times of my life but i got through it.
To everyone out there no matter what life throws at us just hold on to hope and you will get there and if you know anyone who is dealing with anything in their life that is making them depressed whether it be illness or any other problems please be just be patient and be there for your friend.
As the weeks and months passed and still no sign of a liver and becoming more ill by the day i often thought to myself, is all this suffering worth it? As i said before i don't remember much of what happened to me during those critical days but all i can remember was many sleepless and tearful nights of pain both physically and mentally. I also hated the light, and the sound of tv or music. I just wanted to be in a quiet dark room cos that is how i felt at the time. Even as i write this little memories come flooding back and am feeling quite emotional and tearful.
Although i had loads of support from my family, friends, colleaugues and hospital staff i still felt i was all on my own and no one could help me. I left my fate in God's hands and never have i felt so close to him than i did during those dark days. It was like no matter how bad the situation got he was holding me close and even though in my head i wanted to give up he never let my body give up on me.
During my stay i saw numerous psychologists and phsychiatrics and a counsellor but nothing really helped me as no matter what people said to me i didn't change the way i felt about myself and could'nt accept what was happening to me and i started to hate myself because i felt like such a burden to my family especially my mum and to the hospital staff and when i became totally immobile and helpless that was the worst part and i was filled wih guilt and thats when i felt that i had totally lost control of everything in my life.
After all my surgeries i was left with a big open wound which had to heal naturally and everytime i looked at my stomach i thought to myself no one will ever accept me with this. I felt like the ugliest and fattest person in the world. I always tried to remind myself that there are alot of people who are worst off than me and that i must be grateful that i am still alive but still i hated myself and looking at all my pictures from before my transplant was just so hard as i know i'll never get back what i had and that i have to accept the new me.
When i was finally discharged you would of thought that after 10 months in hospital i would be excited to come home but when i got home because my mobility was still restricted alot i had to be carried upstairs to our flat and as soon as i got in i just wanted to be back in hospital. It didnt feel like home anymore and i didn't have the safety of having the nurses and doctors around and i had to depend on my mum and cousin for everything which i hated. I hated myself for putting all this on them as i am a very independent person.
Looking in the mirror again was one of the biggest challenges i had to deal with. It may sound like nothing but i could not look in the mirror since i started becoming jaundiced and i had no motivation to dress up or make an effort to look a little bit respectable because i just felt so ugly inside that i thought no matter what i do or wear will make any difference and it was eating me up inside and thats when i began to shut people out. I would not answer phonecalls, texts and i didn't want visitors and that was when i found out how my true friends were, because some could not understand and thought that i had changed intentionally therefore changed their attitudes towards me too, but my true friends have stuck by me no matter what i did they were patient with me although i did get a few lectures and still do.
I was finally convinced by my social worker and transplant co-ordinator to try counselling again, so i did for 9 weeks and i had a lovely counsellor who managed to boost my self esteem up a bit and help me deal with relationship issues with my friends and family. Sadly she left the hospital and since then i have not have the courage to go and see someone else, but without her i think i still would be an emotional wreck.
Dealing with my mental state has been just as hard as dealing with my physical health issues, sometimes it feels harder cos it's inside my head all the time and i can honestly say that sometimes it got the better of me and i've done some stupid things. I like to think that i'm much better these days and i hope that someday i can say that those were the hardest times of my life but i got through it.
To everyone out there no matter what life throws at us just hold on to hope and you will get there and if you know anyone who is dealing with anything in their life that is making them depressed whether it be illness or any other problems please be just be patient and be there for your friend.
Monday 10 March 2008
My liver Journey in pics & thanks
Here is a montage of my liver Journey in pics throughout my 10 months hospital stay.
I'd like to take this opportunity to say THANK YOU to everyone who has been part of my journey and who has stuck by me through it all.
Thank you to my wonderful Todd Ward family, where i spent the majority of my stay. You all looked after me so well and made my stay bearable. It makes such a difference to be in a ward where everyone is lovely and you feel comfortable and that surely was Todd ward (my second home). Also to LITU, you all did an amazing job during those crucial moments and one could not ask for a better team!
A BIG THANK YOU to the wonderful surgeons who saved my life numerous times, Prof Heaton & Mr Rela and their team, without you i wouldn't be here today. Also to all the wonderful doctors who have come and gone over the past 2 years and have treated me and become my friends.
To the liver co-ordinators,social worker, dieticien and physios who made my life alot easier during my stay and comforted me when i was down, thank you to you all. I will never forget how much you've done for me. You never gave up on me even when i gave up on myself.
Now to my wonderful family and friends, it's times like these you find out whou you're real friends are so to those of you who supported me throughout everything i love you and i will always treasure our friendships.
Last but not least the biggest thanks goes to my wonderful mum, who never left my bedside, who cried with me through the tough times, who supported and loved me all the way and whom i cherish and love very dearly. You're the BEST mum in the world!
Well, as you know i had a tough year but for every bad thing there is always something good that comes out of it and this time i am blessed to have met so many wonderful people and formed many friendships which i will treasure forever.
I'd like to take this opportunity to say THANK YOU to everyone who has been part of my journey and who has stuck by me through it all.
Thank you to my wonderful Todd Ward family, where i spent the majority of my stay. You all looked after me so well and made my stay bearable. It makes such a difference to be in a ward where everyone is lovely and you feel comfortable and that surely was Todd ward (my second home). Also to LITU, you all did an amazing job during those crucial moments and one could not ask for a better team!
A BIG THANK YOU to the wonderful surgeons who saved my life numerous times, Prof Heaton & Mr Rela and their team, without you i wouldn't be here today. Also to all the wonderful doctors who have come and gone over the past 2 years and have treated me and become my friends.
To the liver co-ordinators,social worker, dieticien and physios who made my life alot easier during my stay and comforted me when i was down, thank you to you all. I will never forget how much you've done for me. You never gave up on me even when i gave up on myself.
Now to my wonderful family and friends, it's times like these you find out whou you're real friends are so to those of you who supported me throughout everything i love you and i will always treasure our friendships.
Last but not least the biggest thanks goes to my wonderful mum, who never left my bedside, who cried with me through the tough times, who supported and loved me all the way and whom i cherish and love very dearly. You're the BEST mum in the world!
Well, as you know i had a tough year but for every bad thing there is always something good that comes out of it and this time i am blessed to have met so many wonderful people and formed many friendships which i will treasure forever.
Friday 7 March 2008
Round 2...
Tragedy struck for the second time this time by complete suprise. All was going great. I was working, having a good time and was in my final year of my degree that i never saw i coming. I had just been offered a new job and did my first day and the next day i fell ill with the flu. Days went pass and i refused to go to the hospital as i was convinced it was just a very bad case of the flu. I had a routine clinic appointment the week later and as soon as my surgeon saw me and examined me he said he wanted to admit me as something didn't feel right. I remember it was March 14th 2006 that my life changing journey and battle to survive began.
Days and weeks passed and i was hoping to be discharged so that i can get back to my new job and concentrate on my most important year at uni but every day any hope i had was getting less. I was getting jaundice and filling up with ascites by the day and pain and itching eventually took over my body and i my apetite was decreasing until i couldn't tolerate anything due to the pain.
Two weeks into my admission i was told that scans and bloods revealed that my liver was failing again and i was in desperate need for a transplant and my bilirubin reached a high of 800. This came as a complete shock and was not at all prepared again but i had no time to think about it as it was a matter of urgency that they list me on the priority list
More days and weeks passed and no liver and i was deteriorating and was unable to eat as the pain was so severe that not even two doses of morphine shots would kill it so my surgeon made the quick decision to operate to see what was causing the pain as all my scans didn't show anything except for liver failure. After the operation he came to talk to me and my mum and explained that my bowel was obstructed and kinked from all the adhesions from previous surgeries which in turn caused the pain and inability to eat. He also said that my liver was so badly damaged that it's vital that i get a new liver asap. However due to the major bowel surgery they had to disable me from the transplant list as i had to recover as i wouldn't have much chance surviving going into transplant being so ill. So after 3 weeks i slowly got some energy back and was eating a bit more so they re-activated me on the list. Again, time was passing and still no liver, by this time i was getting frustrated, i was becoming malnourished, my stomach was getting bigger, i was getting more jaundiced and my mobility was being compromised. Everyday would be a routine of blood transfusions, potassium, alubumin, insulin and other infusions. My veins were becoming weak due to all the bloods, canulas and central lines and my body was turning black blue from all the bruises of painkiller and heparin injections. The pain got so bad that i was asking for pain relief every hour which meant sleepless nights an alot of hallucinations. I can't remember much of what happened to me during those long dark days, all i know is what i was told by my family, friends and hospital staff. I was told that at one point when i collapsed from bleeding my kidneys had shut down for a while so i was put on diyalisis when they transferred me to LITU. Also that i became slightly enclopathic (sp?).
On September 30th 2006 i got a visit from the transplant co-ordinator to tell me that there may be a suitable liver for me but it was a non-heartbeating donor therefore if it was a match for me i would have to go into surgery almost immediately. After a few minutes my consultant and the co-ordinator came back and said that it was all go as it was a perfect match, all what was left was my consent to go ahead which i gave and minutes later was being wheeled to theatre.
The operation lasted a little over 10 hours but a few hours after being transferred to LITU i had hepatic atery thrombosis and was brough back to theatre to undergo an aterial conduit which lasted a further 4 hours in surgery. Due to the double anesthetic i did not wake up until 6 days post transplant and was still so sedated that everything was a blur to me. I was finally transferred to the ward on my 11th day and tests showed that the graft was working well and i was making good progress.
However, a few weeks later bad luck struck again and one night my mum noticed that the stuff that was draining into my bile bag had turned black so she notified the doctor and one of my surgeons came to see me and said that i was to go back into theatre asap as it was obvious that my bowel had ruptured. It was then back to LITU for a further week post surgery and then things started to look positive again and i my main goals now was to get myself eating again so i could come of he TPN and get back on my feet after month of being bed bound. As the weeks passed i was making small and slow progress on both the eating and mobility as i was still in pain. I know i was giving both the physios and my dieticien a hard time but i was so demotivated as it wasn't like my first transplant where i started to feel better days after surgery, this time i felt just as bad as i was pre-transplant.
Christmas was fast approaching and i wanted to be home so i decided i had to pull myself together and do my best to get my energy back if there was to be any hope of me going home for Christmas, so i started to take my physio sessions seriously and tried to eat. Things started to go well and i was getting excited about going home but as usual the bad luck fairy decided to pay me a visit again. I had a routine angiogram to see how well the graft was functioning and the news was not good.
I remember one of the SHO's come into my room and very bluntly said 'i'm sorry you need another transplant as your hepatic atery is blocked again.' I was in shock and my mum had popped out to get something and when she got back i told her and she could'nt say anything to me all she did was cry. After the 5 O' clock doctors meeting the consultant came down to explain to me properly and confirm that i needed to be listed again followed by the transplant co-ordinators and my social worker who all held my hand and cried with me. No one could believe how much bad luck i have had. By this time i couldn't face another transplant, i was tired, in pain and i just wanted it all to end and was thinking of giving up as i don't think i could stay strong again, all my hopes and dreams and the thought of making it home for Christams all went out the window. It was like someone had switched of the light at the end of the tunnel and all i could see is darkness.
A few weeks passed and still no liver and suddenly you'll be glad to know there was a sudden turn around and finally some good news....I DIDN'T NEED ANOTHER TRANSPLANT!!!! How relieved and happy i was, i could'nt believe it, suddenly my liver was getting oxygen and blood through colletoral veins, the only downside was that i would need to be on warfarin indefinately, but that was something i could definately live with. However, my consultant came to talk to me and made me aware that there is a high chance that i will need a third trasplant later in life. I didn't care much as long as it was not now i was happy and i could again begin to look forward to going home for Christmas so i started to work hard on my eating and physio again.
A few days later scans showed a stricture in my bile ducts....OMG NOT AGAIN!!! They inserted a stent and ptc drain and bag which i had to keep in for a further 6 weeks. I thought to myself this can't be happeing again. I keep taking one step forward and 3 giant steps back...When is the end???
Anyway, it was Dec 24th and i had a fever and fluid in my lungs but i was so desperate to be at home with my family for Christmas that the consultant made a deal with me that i could go home and come back the next day for bloods but on a condition that if at anytime my temp goes higher than 37.8 to come straight back in. So i agreed and thankfully i was okay and went back the next day for bloods and they let me out again until New Year and when i came back on Jan 2nd 2007 they fully discharged me....YIPPEE, HALLELUJAH!!!
Believe it or not that is the short version of a very lonnnnnng story and thats not the end as the story continues so keep checking in....
Days and weeks passed and i was hoping to be discharged so that i can get back to my new job and concentrate on my most important year at uni but every day any hope i had was getting less. I was getting jaundice and filling up with ascites by the day and pain and itching eventually took over my body and i my apetite was decreasing until i couldn't tolerate anything due to the pain.
Two weeks into my admission i was told that scans and bloods revealed that my liver was failing again and i was in desperate need for a transplant and my bilirubin reached a high of 800. This came as a complete shock and was not at all prepared again but i had no time to think about it as it was a matter of urgency that they list me on the priority list
More days and weeks passed and no liver and i was deteriorating and was unable to eat as the pain was so severe that not even two doses of morphine shots would kill it so my surgeon made the quick decision to operate to see what was causing the pain as all my scans didn't show anything except for liver failure. After the operation he came to talk to me and my mum and explained that my bowel was obstructed and kinked from all the adhesions from previous surgeries which in turn caused the pain and inability to eat. He also said that my liver was so badly damaged that it's vital that i get a new liver asap. However due to the major bowel surgery they had to disable me from the transplant list as i had to recover as i wouldn't have much chance surviving going into transplant being so ill. So after 3 weeks i slowly got some energy back and was eating a bit more so they re-activated me on the list. Again, time was passing and still no liver, by this time i was getting frustrated, i was becoming malnourished, my stomach was getting bigger, i was getting more jaundiced and my mobility was being compromised. Everyday would be a routine of blood transfusions, potassium, alubumin, insulin and other infusions. My veins were becoming weak due to all the bloods, canulas and central lines and my body was turning black blue from all the bruises of painkiller and heparin injections. The pain got so bad that i was asking for pain relief every hour which meant sleepless nights an alot of hallucinations. I can't remember much of what happened to me during those long dark days, all i know is what i was told by my family, friends and hospital staff. I was told that at one point when i collapsed from bleeding my kidneys had shut down for a while so i was put on diyalisis when they transferred me to LITU. Also that i became slightly enclopathic (sp?).
On September 30th 2006 i got a visit from the transplant co-ordinator to tell me that there may be a suitable liver for me but it was a non-heartbeating donor therefore if it was a match for me i would have to go into surgery almost immediately. After a few minutes my consultant and the co-ordinator came back and said that it was all go as it was a perfect match, all what was left was my consent to go ahead which i gave and minutes later was being wheeled to theatre.
The operation lasted a little over 10 hours but a few hours after being transferred to LITU i had hepatic atery thrombosis and was brough back to theatre to undergo an aterial conduit which lasted a further 4 hours in surgery. Due to the double anesthetic i did not wake up until 6 days post transplant and was still so sedated that everything was a blur to me. I was finally transferred to the ward on my 11th day and tests showed that the graft was working well and i was making good progress.
However, a few weeks later bad luck struck again and one night my mum noticed that the stuff that was draining into my bile bag had turned black so she notified the doctor and one of my surgeons came to see me and said that i was to go back into theatre asap as it was obvious that my bowel had ruptured. It was then back to LITU for a further week post surgery and then things started to look positive again and i my main goals now was to get myself eating again so i could come of he TPN and get back on my feet after month of being bed bound. As the weeks passed i was making small and slow progress on both the eating and mobility as i was still in pain. I know i was giving both the physios and my dieticien a hard time but i was so demotivated as it wasn't like my first transplant where i started to feel better days after surgery, this time i felt just as bad as i was pre-transplant.
Christmas was fast approaching and i wanted to be home so i decided i had to pull myself together and do my best to get my energy back if there was to be any hope of me going home for Christmas, so i started to take my physio sessions seriously and tried to eat. Things started to go well and i was getting excited about going home but as usual the bad luck fairy decided to pay me a visit again. I had a routine angiogram to see how well the graft was functioning and the news was not good.
I remember one of the SHO's come into my room and very bluntly said 'i'm sorry you need another transplant as your hepatic atery is blocked again.' I was in shock and my mum had popped out to get something and when she got back i told her and she could'nt say anything to me all she did was cry. After the 5 O' clock doctors meeting the consultant came down to explain to me properly and confirm that i needed to be listed again followed by the transplant co-ordinators and my social worker who all held my hand and cried with me. No one could believe how much bad luck i have had. By this time i couldn't face another transplant, i was tired, in pain and i just wanted it all to end and was thinking of giving up as i don't think i could stay strong again, all my hopes and dreams and the thought of making it home for Christams all went out the window. It was like someone had switched of the light at the end of the tunnel and all i could see is darkness.
A few weeks passed and still no liver and suddenly you'll be glad to know there was a sudden turn around and finally some good news....I DIDN'T NEED ANOTHER TRANSPLANT!!!! How relieved and happy i was, i could'nt believe it, suddenly my liver was getting oxygen and blood through colletoral veins, the only downside was that i would need to be on warfarin indefinately, but that was something i could definately live with. However, my consultant came to talk to me and made me aware that there is a high chance that i will need a third trasplant later in life. I didn't care much as long as it was not now i was happy and i could again begin to look forward to going home for Christmas so i started to work hard on my eating and physio again.
A few days later scans showed a stricture in my bile ducts....OMG NOT AGAIN!!! They inserted a stent and ptc drain and bag which i had to keep in for a further 6 weeks. I thought to myself this can't be happeing again. I keep taking one step forward and 3 giant steps back...When is the end???
Anyway, it was Dec 24th and i had a fever and fluid in my lungs but i was so desperate to be at home with my family for Christmas that the consultant made a deal with me that i could go home and come back the next day for bloods but on a condition that if at anytime my temp goes higher than 37.8 to come straight back in. So i agreed and thankfully i was okay and went back the next day for bloods and they let me out again until New Year and when i came back on Jan 2nd 2007 they fully discharged me....YIPPEE, HALLELUJAH!!!
Believe it or not that is the short version of a very lonnnnnng story and thats not the end as the story continues so keep checking in....
Wednesday 5 March 2008
My First Liver Transplant
After a successful Kasai and a 'normal' childhood, at the age of 14 my liver function tests started show signs of early liver failure and my consultant told me that i would most probably need a liver transplant within the next few years. It was a slow decline based on my lfts but suddenly after the millenium new year i fell really ill, but all my symptoms were those of the flu so we just assumed it was the very bad cas of the flu. However, 2 weeks passed and i was getting worst and one night i started shaking in bed, was in immense pain and had difficulty breathing so mum decided to take me to A&E and i was admitted on the paedeatric ward at Kings. The following morning i was visited by the nurse specialist and my consultant as they had come to break the bad news that i needed a liver transplant. Although i already knew that i was facing transplant it still came as a shock as it came on suddenly and was not prepared emotionally and had alot going on in my life at the time as i was in my final year at college. It felt like my whole life was crushed and didn't know how to take it, therefore i couldn't give them my consent to list me.
As i was turning 18 that year they transferred my care over to the adult team and this was alot to deal with for me. The transition was very daughting and I had alot of questions that needed to be answered before i agreed to sign the consent form. When they told me that transplant wasn't a cure i did not want to go ahead with it but when they told me that i only had about a year or so of poor quality of life left if i didn't have much of a choice me as i was not prepared to die as much as wasn't prepared for transplant. After three weeks in hospital being treated for cholangitis i went home not yet listed. I spent most of 2000 in and out of hospital with bouts of cholangitis and after alot of persuausion from friends and family i eventually gave in and signed the consent and was listed that June. I also finished my business course at college that year.
It was on the eve of June 4th 2001 when that life changing call came that there was a possible liver for me and that an ambulance was on its way to pick me up. Throughout the journey i didn't know what i was feeling, as my emotions were all over the place. I didnt know whether i was scared, excited that all my sufferings might be over soon or relieved and i prayed all the way to the hospital.
When we got to Kings my transplant co-ordinator brought me to the ward where they prepped me and done all the necessary tests. After all the tests were done it wa a matter of waiting to go into surgery. I finally go the all clear that it was a definate match and went into surgery at 7am the next day. My surgery lasted 14 hours and my body started to respond to my new liver almost immediately. I spent the night in LITU and then was transferred to the main liver ward for a few days until they transffered me to a less critical ward where i spent the rest of my admission recovering.
In terms of liver functions i was doing so well and quickly lost all my ascities and jaundice. However getting back to 'normal' was a longer process as i had to learn how to walk and eat again. I gave my dieticien hell at the time as i was her first patient as a qualified dieticien and she still says to me today that i was such a challenge as i refused EVERYTHING! I then contracted an infection in my wound so they had to take out the sutures and left it open to heal naturally, which took 3 months to completley close and heal.
I was finally discharged on July 5th, exactly one month after my transplant. I did have a few bouts of cholangitis and rejection post transplant which required admissions but apart from that i had never felt better, it was like i was given a whole new life and i was finally enjoying the rest of my teenage year and started university that year and moved away from home until i got ill again 3 months later and was not able to return to as i had missed out on too much work so i worked for the until the next academic year and started again at a different university but then again the same thing happened 3 months later and so i had to pick myself up again and drag myself back into work till the next academic year. I refused to give up trying as getting my degree is one of my goals in life so in September the following year i enrolled again this time at a university nearer to my home and i was hoping it was going to be third time lucky. This time i did manage to get through the first year, the second year and halfway through the third and final year until....
As i was turning 18 that year they transferred my care over to the adult team and this was alot to deal with for me. The transition was very daughting and I had alot of questions that needed to be answered before i agreed to sign the consent form. When they told me that transplant wasn't a cure i did not want to go ahead with it but when they told me that i only had about a year or so of poor quality of life left if i didn't have much of a choice me as i was not prepared to die as much as wasn't prepared for transplant. After three weeks in hospital being treated for cholangitis i went home not yet listed. I spent most of 2000 in and out of hospital with bouts of cholangitis and after alot of persuausion from friends and family i eventually gave in and signed the consent and was listed that June. I also finished my business course at college that year.
It was on the eve of June 4th 2001 when that life changing call came that there was a possible liver for me and that an ambulance was on its way to pick me up. Throughout the journey i didn't know what i was feeling, as my emotions were all over the place. I didnt know whether i was scared, excited that all my sufferings might be over soon or relieved and i prayed all the way to the hospital.
When we got to Kings my transplant co-ordinator brought me to the ward where they prepped me and done all the necessary tests. After all the tests were done it wa a matter of waiting to go into surgery. I finally go the all clear that it was a definate match and went into surgery at 7am the next day. My surgery lasted 14 hours and my body started to respond to my new liver almost immediately. I spent the night in LITU and then was transferred to the main liver ward for a few days until they transffered me to a less critical ward where i spent the rest of my admission recovering.
In terms of liver functions i was doing so well and quickly lost all my ascities and jaundice. However getting back to 'normal' was a longer process as i had to learn how to walk and eat again. I gave my dieticien hell at the time as i was her first patient as a qualified dieticien and she still says to me today that i was such a challenge as i refused EVERYTHING! I then contracted an infection in my wound so they had to take out the sutures and left it open to heal naturally, which took 3 months to completley close and heal.
I was finally discharged on July 5th, exactly one month after my transplant. I did have a few bouts of cholangitis and rejection post transplant which required admissions but apart from that i had never felt better, it was like i was given a whole new life and i was finally enjoying the rest of my teenage year and started university that year and moved away from home until i got ill again 3 months later and was not able to return to as i had missed out on too much work so i worked for the until the next academic year and started again at a different university but then again the same thing happened 3 months later and so i had to pick myself up again and drag myself back into work till the next academic year. I refused to give up trying as getting my degree is one of my goals in life so in September the following year i enrolled again this time at a university nearer to my home and i was hoping it was going to be third time lucky. This time i did manage to get through the first year, the second year and halfway through the third and final year until....
Tuesday 4 March 2008
The Story So Far...
Well since i am 26 years old i don't think i could go all the way back to the beginning but i will tell you how it began and the main highlights throughout my journey till today and will go into detail in later posts.
I was born on February 5th 1982 at University College Hospital in London. Shortly after birth i was diagnosed with a rare childhood liver disease called Biliary Atresia and required urgent surgery. I was then transferred to Kings College Hospital which specialises in liver diseases to undergo a Kasai procedure which i haad when i was 6 weeks old. After a successful surgery i went on to do very well throughout my childhood. I have always had portal hypertension and an enlarge spleen so every 3-5 years i would go into hospital for endoscopys.
I have had 2 liver transplants to date, 2 bowel surgeries for obstruction and perforation and was diagnosed with osteoporosis as a result of the side effects from the steriod used as an anti-rejection drug post transplant. I am on cocktail of daily medicaton and still awaiting biliary surgery to correct my bile duct which is strictured.
Newborn
1 Year Old
3 Years Old
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