For a change i thought i'd write something positive here whenever i have the chance to despite how small a deal it may seem, as long as it makes me happy i want to share it with everyone.
Firstly and most importantly i am going to Philippines TODAY for 1 MONTH!!!! YAY!!!
Yesterday at clinic Prof Heaton finally added me to the waiting list for my surgery! YAY again!!!
Finally my liver fuunctions are all PERFECT! YAY for a very happy liver!!!
Thursday, 17 February 2011
Thursday, 20 January 2011
Finally some answers
Today i had an important meeting with the man himself, Prof Heaton. He finally gave me some reassurance and sees things from my perspective and can tell how important this surgery means to me and for once i was not compared against Aneisha as he realises that i am an individual and deserves the same chances as everyone else.
I was so anxious going into the appointment as i had a lot of questions in my head that i need to be answered but as usual, typical me when i get there i am lost for words and go totally go blank. However, he still managed to answer most of them as he explained what the surgery entails and his views and opnions on what i should do. I think he could see through me and feel how hungry i am for life and that i deserve some sort of normality and pain free life. He also thinks that i would benefit a lot from the surgery if all goes to plan but have to also be prepared for the worstt as it comes with very high risks.
His plan for now is that he wants me to have a barrium swallow procedure to check for any obstructions in my bowels. When he told me that i was more concerened about having that procedure more that the surgery itself because out of all the procedures one can have that is my worst nightmare, last time it took them 2 days to actually get gastro graffin down me. I guess i just have to suck it up and do it somehow without passing out.
Once he has the results from the procedure i need to go back to see him at clinic where we will discuss the surgery in more detail and put a date aside for when he and Parthi can both do the surgery.
The best thing that came out of today was knowing that Prof was on my side and is giving me that chance. I have every faith that i am under the best care.
I was so anxious going into the appointment as i had a lot of questions in my head that i need to be answered but as usual, typical me when i get there i am lost for words and go totally go blank. However, he still managed to answer most of them as he explained what the surgery entails and his views and opnions on what i should do. I think he could see through me and feel how hungry i am for life and that i deserve some sort of normality and pain free life. He also thinks that i would benefit a lot from the surgery if all goes to plan but have to also be prepared for the worstt as it comes with very high risks.
His plan for now is that he wants me to have a barrium swallow procedure to check for any obstructions in my bowels. When he told me that i was more concerened about having that procedure more that the surgery itself because out of all the procedures one can have that is my worst nightmare, last time it took them 2 days to actually get gastro graffin down me. I guess i just have to suck it up and do it somehow without passing out.
Once he has the results from the procedure i need to go back to see him at clinic where we will discuss the surgery in more detail and put a date aside for when he and Parthi can both do the surgery.
The best thing that came out of today was knowing that Prof was on my side and is giving me that chance. I have every faith that i am under the best care.
Wednesday, 19 January 2011
A New Year! 2011!
We are almost at the end of January and so far the new year hasn't been great. As usual at this time of the year i end up in hospital but this time i refuse to be admitted and just soldiered through my illness. Initially i thought it was swine flu until i started getting all the typical symptoms for cholangitis and my transplant co-ordinator was also convinced it was cholangitis (liver infection). I went to my GP and she started me on a course of ciprofloxacin although i know i really needed ivabs. Thank fully the oral kicked it and worked so as soon as i was feeling better i went back to work as i was getting bored and frustrated. Yesterday was my first day back and so far it is going well apart from the pain which is nothing new.
Tomorrow morning i have the important appointment with the man himself, Prof Heaton as the issues of this surgery has been going on for far too long now and i just need some answers and confirmation from him that i can still go ahead with the surgery before i get to the point were i wont be fit and well enough to have it. I realise it comes with major risks but they are all risks that i have thought about thouroughly and am ready to take and i'm trying to stay positive.
I am feeling very anxious about tomorrows appointment. I just hope he gives me the green light after all this wait. I need my life back and pain to go away.
Tomorrow morning i have the important appointment with the man himself, Prof Heaton as the issues of this surgery has been going on for far too long now and i just need some answers and confirmation from him that i can still go ahead with the surgery before i get to the point were i wont be fit and well enough to have it. I realise it comes with major risks but they are all risks that i have thought about thouroughly and am ready to take and i'm trying to stay positive.
I am feeling very anxious about tomorrows appointment. I just hope he gives me the green light after all this wait. I need my life back and pain to go away.
Heaven has gained another liver angel
It's with a heavy hard that i write another about another big loss. Mallory Smith, a very young, vibrant and brave lady lost her battle after 2 liver transplants and numerous complications passed away on Jan 2th 2011 after doctors suggested that it was best that they discontinue her life support as there isn't anymore they could do for her.
Mallory was such an inspiration to many other fellow patients and anyone who came in touch with her. She fwas a fighter and never gave up until her last breath. Mal we will miss you but at least we know where you are and you're free from pain and suffering.
R.I.P sweet girl.
Mallory was such an inspiration to many other fellow patients and anyone who came in touch with her. She fwas a fighter and never gave up until her last breath. Mal we will miss you but at least we know where you are and you're free from pain and suffering.
R.I.P sweet girl.
Friday, 17 December 2010
Surgery Dillema
Plans and talks of my next surgery to repair my hernia, close my wound and revise my scar have been going on for almost 2 years now and is getting me more frustrated and depressed as the pain is getting worst, my mobility is being compromised and i no longer have a social life. The intial plan was to wait for my scar to heal more and wait for my surgeon Prof Rela to come back from India this September. However as usual things never go my way and when Mr Rela returned to the UK he decided to resign so now the dilemma is who is willing to do thhe surgery??? Being such a complicated case most of the surgeons didn't want to take me on and so now i am hoping the other top surgeon, Prof Heaton will take me on and finally do my surgery. However, after Aneisha passing they were all hoping that it would of put me of the idea of going ahead but it hasn't as at the end of the day we are still individuals and what happened to her may not happen to me but i am willing to take the risk as i can't see myself coping with this life for much longer without becoming very depressed and having to take painkillers every 2-4 hours in order to function.
Jo the liver co-ordinator has been absoloutely amazing in helping me, supporting me and just being there all the time. After Holly my counsellor left i thought i wouldn't be able to cope and if it weren't for Jo i would have probably gone down hill so fast.
The plan now is after speaking to Prof Heaton he said he will look into my notes and have a word with Jo and try to come up with a proper plan that he will follow through. In the meantime they are worried about my mentals state again so Jo is working with the new psychologist and the adult team and the Maudsley to put together a care package for me. They feel it will benefit me to have that guidance again that way i won't go back to my darkest place.
So as you can see that i have been trying to cope with everything and get things rolling as next year i want to get my life back and concentrate on my nursing career.
Jo the liver co-ordinator has been absoloutely amazing in helping me, supporting me and just being there all the time. After Holly my counsellor left i thought i wouldn't be able to cope and if it weren't for Jo i would have probably gone down hill so fast.
The plan now is after speaking to Prof Heaton he said he will look into my notes and have a word with Jo and try to come up with a proper plan that he will follow through. In the meantime they are worried about my mentals state again so Jo is working with the new psychologist and the adult team and the Maudsley to put together a care package for me. They feel it will benefit me to have that guidance again that way i won't go back to my darkest place.
So as you can see that i have been trying to cope with everything and get things rolling as next year i want to get my life back and concentrate on my nursing career.
Thursday, 16 December 2010
Tribute to a great friend...
It is with great sadness and a heavy heart that i am writing this post as my very good friend lost her battle with liver disease on the 03/12/2010. Since she was diagnosed with wilson disease at the young age of 13 she never gave up on herself and never let her illness get in the way of living a normal life. She went on to having 3 transplants and it was during her wait for her third transplant that i had the pleasure of knowing her while i was waiting for my second transplant. We quickly became good friends and after both our surgeries we went through similar, almost identical complications and was often inpatients at the same time. It was like we were sisters medically and thats what our friendship blossomed into.
Sadly after what was suppose to be her last surgery to remove adhesions and close her wound she didnt make a full recovery and there was nothing more the surgeons or doctors could do for her. The decison to turn off life support was agreed by the family. That day i will never forget how i broke down and wishing it was myself in that position and not her.
Aneisha sweetheart where ever you i know your in peace and no longer suffering but i miss you everyday and thanks for being a great friend. You was always the strongest and positive one and i hope someday we will see each other again. Love you babes...R.I.P
Sadly after what was suppose to be her last surgery to remove adhesions and close her wound she didnt make a full recovery and there was nothing more the surgeons or doctors could do for her. The decison to turn off life support was agreed by the family. That day i will never forget how i broke down and wishing it was myself in that position and not her.
Aneisha sweetheart where ever you i know your in peace and no longer suffering but i miss you everyday and thanks for being a great friend. You was always the strongest and positive one and i hope someday we will see each other again. Love you babes...R.I.P
Thursday, 4 November 2010
Not so good news... :(
As you all know that i have been waiting for further surgery to repair my hernia, wound muscle closure and scar revision and i was aware that it was risky operation because of my past medical history but i never knew how high the risks where and the likelihood of them happening unti last Thursdaay when i went to clinic.
I went in all prepared with a list of my issues and questions in regards to the surgery and boy was i not prepared for the answers i got. I saw one of the consultant surgeons who did my transplant and he was very nice and sensitive in the way he told me and when he saw my reaction of fear and dissapointment i could tell that he was very emotional and was even holding back the tears as i was doing too.
These are the answers he gave me:
- it's almost definate or a very high risk that they may perforate another organ or even more during the surgery which will put me back into a critical condition
- a high chance that my recovery time and hospital stay will be very long
- if they perforate another organ(s), i may not make a full recovery or may not survive.
- if i don' have the surgery my quality of life will gradually go down again and may have to resign from my job and not be able to pusrsue my nursing career.
- Long term painkillers will eventually destroy my liver and will result in a third transplant where the chances of me surviving is probably about 10%
- will have to live with hernia and pain and my scar which is for those of you who have seen it is so ugly.
- there is a risk of the hernia blocking my intestines
So as you can see i don't have much choice, either way i go i will eventually need some sort of intervention and if i dont do it know i'm just prolonging the inevitable and the suffering with the pain so i see the best option is to go ahead now, whilst i'm more fit, LFT's are all stable and am stilll mobile so i will have a better chance of recovering after. Although the thought of anything going wrong scares me and i don't know if i have any fight left in me.
Any thoughts???
I went in all prepared with a list of my issues and questions in regards to the surgery and boy was i not prepared for the answers i got. I saw one of the consultant surgeons who did my transplant and he was very nice and sensitive in the way he told me and when he saw my reaction of fear and dissapointment i could tell that he was very emotional and was even holding back the tears as i was doing too.
These are the answers he gave me:
- it's almost definate or a very high risk that they may perforate another organ or even more during the surgery which will put me back into a critical condition
- a high chance that my recovery time and hospital stay will be very long
- if they perforate another organ(s), i may not make a full recovery or may not survive.
- if i don' have the surgery my quality of life will gradually go down again and may have to resign from my job and not be able to pusrsue my nursing career.
- Long term painkillers will eventually destroy my liver and will result in a third transplant where the chances of me surviving is probably about 10%
- will have to live with hernia and pain and my scar which is for those of you who have seen it is so ugly.
- there is a risk of the hernia blocking my intestines
So as you can see i don't have much choice, either way i go i will eventually need some sort of intervention and if i dont do it know i'm just prolonging the inevitable and the suffering with the pain so i see the best option is to go ahead now, whilst i'm more fit, LFT's are all stable and am stilll mobile so i will have a better chance of recovering after. Although the thought of anything going wrong scares me and i don't know if i have any fight left in me.
Any thoughts???
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