Tomorrow i'm off to Harefield Hospital, again.
It is merely appointment to check on my progress, or lack thereof; and decide how closely i need to be watched by the transplant team, or if i can be discharged for the forseeable future. I would very much like to think it will be my last visit to this hospital for some time, but think with hindsight i will be glad i have begun a relationship with the team at this stage, and not merely when i desperately need their help. It's an early start as the hospital is some 3 hours away, but i am being chauffered by my wonderful partner- and will try and squeeze some nice food and girly magazines out of it!
I know i'm one of the lucky ones, and have many friends who only visit this hospital to be told their time is running out, and their transplant can't come soon enough.
This week is National Transplant Week, and because I can't think of a more apt or articulate way of making this plea, I am going to steal Emily's wording:
Please do something to help. People like my friends Jess and Tor are relying on us. They need us to do it now, not to put it off till tomorrow, because their tomorrows are looking very uncertain indeed. Let's give them a tomorrow.
http://www.uktransplant.org.uk/ukt/default.jsp

Long overdue update

As i was 'prettifying' this blog, i thought i ought to update some content also, it is long overdue.

This blog was initially a vehicle to communicate with friends about my health issues, whilst removing some of the awkwardness and energy sapping rambling explanations. I found it nurtured a degree of silent understanding and unquestioning acceptance, that i hadn't experienced before. I know people read it, and never said another word. Since I was told (on Christmas Eve!) that i didn't need to be listed for transplant yet I have been riding a rollercoaster of emotions. I found myself despairing at being told I wasn't going to be listed, in contrast to my family's happy delirium. This may, to many, appear ungrateful, confused and an altogether odd response. In my defence, I have been assured I am not the only one to have reacted like this.

I felt that being told i was 'too well' to be listed was cruel, and left me hanging. Holding onto the thought of transplant assessment, and the process and support network which surrounds it, had been what i had been holding onto for some time. The process of being referred for the transplant assessment took almost a year from when it was first mentioned, and as time went on it became more and more consuming.
Having this outcome sprung upon me, after such a build up felt like having my hand-rail removed whilst i'm still unsteady.
I feel this has been something of a guilty secret since i received the outcome, as those friends who are involved in the transplant world and are desperately, torturously waiting for their call will feel they would do anything to be in my position and be 'too well'; and outsiders from this strange and surreal world appear to see it as an 'all clear', rather than a delaying of the almost inevitable.

To be continued...

Transplant assessment

So, i've had my assessment for a double lung transplant- outcome to be announced next week, so tune in for that. It was a very intense week, packed with tests and information. Despite this intensity, i felt as though it was happening to someone else and i was watching through a lens. I never expected to feel as entiely disattached as i have done.
I am lucky in that i have had an enormous amount of support from some very special people, some of whom have been where i am now, some who simply realise i need my friends now more than ever, and are able to get over their own awkwardness to reach me.
I suspect that some people feel very alienated by the whole process, and unsure of what to say. I understand that it is not an easy subject to broach, nor to understand, but a simple 'thinking of you' would mean more to me than you seem to realise.
For those who may have a transplant assessment on the horizon, and those who are not brave enough to speak to me in person, here is some information on transplants, assessments and the whole process:
During my hospital incarceration, i was subjected to a barrage of tests:

• ECG
• 24 hour heart tape
• 24 hour urine collection
• 6 minute walking test
• Abdominal ultrasound
• Chest CT
• Bone scan
• Impedence study (tube up the nose and down the throat, into the osopheagus)
• Psychosocial assessment
• Chest x-ray

There was a great deal of opportunity to ask questions, have conversations and discuss the upcoming events. I had an interesting discussion with the transplant co-ordinators about the shortage of donors, myths surrounding organ donation, different types of donor organs, and the issues which arise from transplants.

A transplant is by no means a cure, it is swapping one set of problems for another. Post transplant, instead of having malfunctioning lungs, i would have a whole new set of issues. Immunosuppresants would need to be tinkered with, kidney function kept an eye on; sunscreen worn at all times to reduce the already raised risk of cancer; lung function and temperature monitored daily to pick up on early signs of rejection, which would need to be treated vigorously and urgently. Immunosuppresants are given to prevent rejection of the transplanted organ, but they also make the transplantee far more susceptible to coughs, colds and other infections, leading to complete hyperchondria in the months of recovery. The transplanted lungs do not have an infinite shelf life- the average survival post transplant is 5 years, but a transplant is about quality not quantity. It should provide a significantly improved quality of life, with the opportunity to do things not now possible with severely damaged lungs.

Before it is even possible to reach this stage of arduous labour during the recovery, it is necessary to be matched with suitable donor organs. This process is not as simple as it may seem, with matches needing to be found for blood group, tissue type, height and weight. There are currently 80 people waiting for donor lungs at Harefield hospital, with less than 30 operations having been done in the last year. Half of all people on the lung transplant waiting list will die waiting for lungs.

I have probably bombarded you with enough information for now, although this post is as much for me as it is for you. I'm trying to make this real.

*Long exhaled breath*

This week has been, well, tough. Emotionally, it has been turbulent. Physically, i have been here there and everywhere. Wednesday saw me visit a distant hospital to meet a completely new team, something which has been in the pipeline for a while- but not overly concerning as i thought i would merely receive a cursory 'going over' and be told to tootle off on my way. Not so.
Apart from being told i am a confusing, bemusing and puzzling patient; i was also told that due to the ferocious and turbulent nature of my decline, a pair of new lungs need to be seriously considered, and sooner rather than later.
After almost falling off my chair (not metaphorically, i do believe i was teetering precariously whilst looking somewhat ghostly), i failed to ask the host of questions i had prepared and silently seethed at just how unprepared i had been.
One thing i had instilled in myself for prior to my visit was the fact that no matter what happened in that room, i would emerge the same person i walked in as. Whether anyone else realises this or not, i've yet to decide.

A late night ramble

I often feel quite lonely, isolated at times. I don't like to talk about my illness to friends, they just accept my daily regimen of being beaten, downing so many tablets i rattle when shaken, and frequent stays in the 'hotel' as they like to call it; but sometimes i wish they could have just a little insight into my life- of what it's like to keep it all in for fear of upsetting those you care about most.
Over the past 12 months my health has deteriorated 'disastorously' (the exact wording used in my hospital notes, which they think i don't sneak a peak at). I have gone from being a largely normal, healthy, happy person with a successful future stretched out ahead of me- to someone who doesn't know what the next day will bring, and doesn't dare to plan for the coming christmas- never mind next year. Some days i simply don't have the energy to leave the house, and people wonder why i don't jump for joy at the thought of participating in a lenghty hike or a muddy music festial. I have watched friends grow more distant as they get on with their lives, family more scared as they try to pretend it's not happening, and doctors more perplexed as i add one complication to another. This decline has culminated in discussion about a double lung transplant- and the chances this might bring. The fact is however, only half of those accepted as ill enough to need such a transplant ever get the chance to recieve one. This country has a chronic shortage of organ donors, leading to the loss of many young lives and the devestation of many others left behind. Perhaps this is why i haven't wanted to be upfront with you about how things have changed; perhaps i don't want to be viewed any differently to how i always have been; perhaps i haven't yet accepted this myself, and therefore am not ready for you to be let into this world.
Thankfully, this is a world you can leave just as quickly as you entered it. For the friends i have, waiting on the kindness of a stranger to allow them to regain their lives, walking away is not this simple.
Please think about joining the organ donor register today, and save people the heartache of having to say goodbye before their time.

http://www.uktransplant.org.uk/ukt/how_to_become_a_donor/registration/consent.jsp

There are many wonderful things going on in my life, and many things i have to look forward to (more of these to follow in further posts); but i felt some of you were owed an explanation, and this- for me at least- is the most painless way of doing it.