70 pills a week...

Keeps the....

...at bay!

Intensive care PART ONE

To balance the five or so days of memory loss prior to operation, recuperation in the ICU provided me with countless adventures: imaginary and actual, existing outside of time with brilliant rapidity and painstaking languor in differing measures. I have organized such events into some form of comprehensible narrative, yet the actual occurrence of which remains questionable, for whilst I clearly remember being instructed by a cluster of doctors crowding my bed to respond to their voices, the reward of which being to have the mystery tube withdrawn from my oesophagus and replaced with an oxygen mask, I still managed to invent the scenario as being that if one slipped into unconsciousness, without the mask firmly in place, then you simply would not wake up. It was terrifying. In fact, a good fifty percentage of my pre-compos mentis dealings were mesmerizing in their abjectness, equilibrated only by other wondrous, imagined scenarios. Little time had elapsed, but the whole world had been presented to me; something raw had been unearthed in the interim between my sedation and continued consciousness.

Medication: Tacrolimus

Tacrolimus (the biggie):

After undergoing a liver transplant it is necessary to take a certain amount of medication, this is so that your body can accept the invading foreign entity: a new organ.

Tacrolimus is, in general, the universal medication taken post transplantation - "Tacrolimus lowers your body's immune system. The immune system helps your body fight infections. The immune system can also fight or "reject" a transplanted organ such as a liver or kidney. This is because the immune system treats the new organ as an invader." (Taken from doublecheckmd.com)

Taking tacrolimus may increase your risk of developing certain types of cancer, especially skin cancer. The risk may be higher in people who are treated over long periods of time with drugs that weaken the immune system. Talk with your doctor about your individual risk.

Avoid exposure to sunlight or artificial UV rays (sunlamps or tanning beds). Use a sunscreen (minimum SPF 15) and wear protective clothing if you must be out in the sun.

There are many other medicines that can interact with tacrolimus. Tell your doctor about all the prescription and over-the-counter medications you use. This includes vitamins, minerals, herbal products, and drugs prescribed by other doctors. Do not start using a new medication without telling your doctor. Keep a list with you of all the medicines you use and show this list to any doctor or other healthcare provider who treats you.

Do not consume grapefruit or grapefruit juice during treatment with tacrolimus unless your doctor has told you do. Tacrolimus can have a dangerous interaction with grapefruit or grapefruit juice.

Tacrolimus can lower the blood cells that help your body fight infections. This can make it easier for you to bleed from an injury or get sick from being around others who are ill. To be sure your blood cells do not get too low, your blood will need to be tested on a regular basis. Your kidney or liver function may also need to be tested. Do not miss any scheduled appointments.

Some people receiving tacrolimus after a kidney transplant have developed diabetes, most often in people who are Hispanic or African-American. Talk with your doctor about your individual risk of diabetes.

Read more information on side-effects HERE...

Transplantation Scars.....

Just a few images...

Introduction

On the 28^th April 2006 I had a liver transplant. Not odd enough I was only nineteen, but stranger still is the fact that it was here, at transplantation, where this all began. The first indication that I had anything but a healthy liver occurring in the February of the same year; a spell of jaundice that peaked with me looking like something out of a science-fiction story, often receiving public heckles of “oi, mate, love the St Tropez!” or “shit, look at green guy over there”, only to relent, donning my natural complexion by March. However, Easter heralded another type of resurrection; bouts of seemingly inexplicable stomach cramps, to an extent appeased when forced to retire to the familiarity and security only a bed can provide, a remedy gratefully received in bouts of unwittingly easy, meta-conscious sleep.

Healthy Liver

A weighted déjà vu, coupled with an unusually high number of untouched chocolate goods, won out over a defining, personal, ‘everything-is-fine’ ethos. It turned out everything was not fine, and now, fast forward four years, I am at pains to conceive the defining points of a personal equilibrium: ‘fine’ changes dramatically upon receiving another’s vital organ, the experience itself residing within a microcosm both complex and personal. I have no clear, conscious memory of being told a transplant was necessary. No, not even necessary, vital – a mere two months after being privy to the legendary regenerative powers of the liver everything crashed. On the 20th April 2006 I passed through the looking glass, the other side. Boundaries became blurred between the possible and permissible, recollection falls now into falsity for all intents and purposes. What was happening? A question, due the nature of liver degeneration, that can only be contemplated now.

Healthy vs. Cirrhosis

During my previous spell on what was then named the Hassell ward I had been educated in some of the pitfalls and plights associated with liver disease, pertaining to both viruses of the blood, the lettered Hepatitis, for example, which I learned ranged far beyond A-C, and ailments by proxy, often the result of a non-liver specific disorder such as Wilson’s disease. As thus encephalopathy existed in the periphery of my knowledge as something indicating exceptional damage to the liver, as well as an ailment capable of reducing any strong constitution to child-like stupor. Basically, for there is much more to it than this, being a topic that for reference sake can be built upon later, when the liver cannot break down dangerous toxins any longer they have a damaging effect on the brain, in particular inciting memory loss upon the recipient. I do remember my coordinator telling me a transplant had become a possibility, yet I met any negativity with a well-nurtured ‘everything-is-fine’ facade, supporting my emotional state with an uncanny vigour in the revision required for imminent first year university exams. The onset of encephalopathy is one of only two true memories I can recall in the five or six days preceding transplantation, besides snippets here and there. I remember a consultant asking me to hold both arms in front of me with wrists bent back so that my fingers were pointing towards the ceiling, a healthy candidate should be able to close ones eyes and maintain this position, your wrists falling otherwise My penultimate memory, therefore, was, to be frank, “shit”, for when I opened my eyes I could see my wrists disobeying my wishes and the doctor’s face momentarily move from ambivalence to sympathy. I also remember being anesthetized, consciousness being forcibly denied and wanting nothing more for my parents to explain why.

I apologize. In producing a physical account of the events preceding, and for that matter since, the transplant it is hard not to utilize literary devices beyond any wholly descriptive means. I don’t want this endeavour to blast ‘me me me’, but I am using personal experience as a marker. I could be more sterile, equally there is an emotive subtext that cannot be ignored.

I guess the point I am simply trying to put is this: I had no understanding of the context surrounding a transplant, liver or otherwise; an understanding, I contend, which continues to eludes me to this day. The operation itself marked both an initiation into the deep seated world of organ donation and transplantation, whilst also having to approach said world as a nineteen year old. The scenario quickly transcended the corporeal, begging answers, or at least something, to moral and psychological dilemmas. Intending not to be dramatic, but in hindsight the series of events surrounding the event truly became my own, personal Inferno. I had not lived the life of one with serious liver disease: trips to hospital, bouts of severe illness or that moment of being told your future depended on the demise of another, privy to the criteria of the National Health Service and human morality – a list where 300 recipients of a new, healthy liver die each year.

I want to raise awareness, not simply for public understanding, but those young people that, or at at least I imagine, are undergoing a life renewed.

Aims, objectives and endeavours...

Like I said, I don't want to create a blog lamenting on my personal experiences, albeit you will be privy to such to some extent, more over I want to create a forum exploring liver transplantation from a less recognised, and publicly regarded, perspective: 'young people', those who do not necessarily fit the demographic traditionally associated with organ transplantation, in terms of both age and circumstance.

Here I will outline exactly what it is I intend to explore. The overall idea is to unite in one place personal experiences and testimony, objective information and simple fact pertaining to liver transplantation amongst young people: a public forum. However, such a feat requires defining terms employed, such as 'young people', as well as the specific circumstances surrounding such a demographic when having to become the recipients of a new, healthy liver:

1) 'Young People' - Stereotypically, as well as statistically, the recipients of a liver transplant are middle aged, with a host of different possible reasons for the actual act. 'Young people', therefore, relates specifically, albeit not exclusively, to people aged 30 years and below. I have picked this demographic in consideration of specific emotional and psychological repercussions: having to live the majority of ones life as a 'transplantee', existing within the shadow of losing part of oneself and having ones own death prevented by the demise of another.

2) Context: reason and experience - Naturally, people undergo liver transplantation for a number of very abstract, and altogether complex, reasons. To explore all scenarios, experiences and conditions would be a fool hardy project, even within the bracket of 'young people', and detrimental to providing a comprehensive hub of information, a forum of shared experience with the aim of helping those of similar, yet still unique, backgrounds. I plan to explore those who experienced acute liver failure, like myself, meaning that within the space of a number of weeks, what was thought to be a healthy liver, degenerated to the point of requiring an emergency transplant lest die, as thus, jumping the NHS transplant register, let alone experiencing it. I do, however, want to contrast this with young people who experienced prior knowledge of needing, at some point, an organ transplant in order to continue their lives but not necessarily focus on those suffering from the more acknowledge and discussed liver diseases, i.e. diseases of the blood such as Hepatitis A, B and C, but Seronegative Hepatitis, an inflammation of the liver caused not by a blood disease and therefore not liable to experience such an attack on the new, healthy liver received. I feel the difference between knowing and not about ones transplantation obviously has differing psychological and emotional consequences.

3) General information & myth busting - To provide information common to all those that have undergone a liver transplant, such as medication, side-effects, general and future experiences and complications. Also, attention will be placed on raising awareness of the true meaning of the term 'hepatitis', blasting aware preconceived, and often incorrect, associations and beliefs the general public maintain.

4) My personal experiences - Having already given a backdrop to the events preceding my own transplant I will continue to retell what, and how, I have experienced in that last four years: those keys moments that can prove useful to others who are perhaps yet to experience, or currently doing so.