I found out something today. My Dad had asked me whether I could seek out some more information about the transplantation process - the hospital has told us next to nothing, which is not unusual, but certainly frustrating. My Consultant duly arrived this afternoon before I was attached to the machine, and told me this: for a couple of reasons, the antibodies present in my blood mean that I am an incompatible match for 90% of the kidneys that become available through the national donor list.
"So that means I only have a 10% chance of getting a kidney?" I asked, waiting for him to reply that of course that was NOT what he meant, I had misheard, my C in GCSE maths was a lucky get. But he said, "Yes, 10%."
"That's a pretty small chance," I said. He had come to me with no other information whatsoever, and he left after I told him there was not really much more to say.
My first thought was that I was done. I have had enough. I have tried with every fibre of my being to stay positive and resolute, but with the creeping doubt that being "at the top of the list" actually means jack shit now confirmed, I asked myself: what is the point? I do not want to continue to live like this. Bitter and nihilistic as it sounds, all the plans I have been making for the future, from completing my Masters to buying a coffee table, have drifted off into the void. I have already lost five year of my life to this disease; I have had to resign myself to that. Yet if there is such a small chance of getting my future back, of living it the way I want, without restriction, without pain and sadness, then perhaps it is not a future I truthfully desire. There is no guarantee that a transplant would even work: I might wait another five years only to receive a dud. Were I to stop going to dialysis tomorrow, I would live for roughly another week, and have a pain free death. These were the thoughts going through my mind.
And now, given a few hours to reflect...I feel nothing much. I have enjoyed sparks of optimism: perhaps I could look more seriously into home dialysis? Maybe my Dad, initially discounted for an unspecified reason, could donate after all? Could I bring myself to canvas my friends..? I'm ashamed to say there are issues of pride here. But I would be ashamed to be labelled a quitter, too.
I suspect I am still paddling in the shallows of denial; things are no different from how they were this morning, after all. I am angry it has taken the hospital until now to impart this information: I have been labouring under the pretence that it was a matter of time and probability until a kidney presented itself, and both elements were now, finally, stacked in my favour. Had I known when I started my wait that the likelihood of my getting a kidney this way was so slim, I would have, without doubt, looked into all the alternatives. I might have reclaimed valuable years. Or I might have thrown myself under a bus.
"No regrets," people say, and, "Everything for a reason." But what is the reason for all of this? This is actually not a question I have wrestled with greatly over the past five years, but it seems pressing tonight. All I can think to do is readjust my expectations: don't expect to recover; don't look beyond this; be the dialysis patient that you are. The unit, with its elderly, greying residents, with its needles and nurses and negativity, is where I belong - it has just taken me until now to understand that. And, perhaps, there is the answer I am looking for.
"So that means I only have a 10% chance of getting a kidney?" I asked, waiting for him to reply that of course that was NOT what he meant, I had misheard, my C in GCSE maths was a lucky get. But he said, "Yes, 10%."
"That's a pretty small chance," I said. He had come to me with no other information whatsoever, and he left after I told him there was not really much more to say.
My first thought was that I was done. I have had enough. I have tried with every fibre of my being to stay positive and resolute, but with the creeping doubt that being "at the top of the list" actually means jack shit now confirmed, I asked myself: what is the point? I do not want to continue to live like this. Bitter and nihilistic as it sounds, all the plans I have been making for the future, from completing my Masters to buying a coffee table, have drifted off into the void. I have already lost five year of my life to this disease; I have had to resign myself to that. Yet if there is such a small chance of getting my future back, of living it the way I want, without restriction, without pain and sadness, then perhaps it is not a future I truthfully desire. There is no guarantee that a transplant would even work: I might wait another five years only to receive a dud. Were I to stop going to dialysis tomorrow, I would live for roughly another week, and have a pain free death. These were the thoughts going through my mind.
And now, given a few hours to reflect...I feel nothing much. I have enjoyed sparks of optimism: perhaps I could look more seriously into home dialysis? Maybe my Dad, initially discounted for an unspecified reason, could donate after all? Could I bring myself to canvas my friends..? I'm ashamed to say there are issues of pride here. But I would be ashamed to be labelled a quitter, too.
I suspect I am still paddling in the shallows of denial; things are no different from how they were this morning, after all. I am angry it has taken the hospital until now to impart this information: I have been labouring under the pretence that it was a matter of time and probability until a kidney presented itself, and both elements were now, finally, stacked in my favour. Had I known when I started my wait that the likelihood of my getting a kidney this way was so slim, I would have, without doubt, looked into all the alternatives. I might have reclaimed valuable years. Or I might have thrown myself under a bus.
"No regrets," people say, and, "Everything for a reason." But what is the reason for all of this? This is actually not a question I have wrestled with greatly over the past five years, but it seems pressing tonight. All I can think to do is readjust my expectations: don't expect to recover; don't look beyond this; be the dialysis patient that you are. The unit, with its elderly, greying residents, with its needles and nurses and negativity, is where I belong - it has just taken me until now to understand that. And, perhaps, there is the answer I am looking for.
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