Back when I started dialysis at the center, I met this family whose nineteen year old daughter was the patient. Our association with each other bordered on saying hello or goodbye to each other, the occasional “How are you?” and talking about what’s on the news or the weather. You know, the usual chitchat. I noticed that the girl’s access was also still an IJ catheter, usually indicating that she is also new to the condition. She’d play with her tablet, read, chat with friends or family who accompany her. Sometimes I wonder, how can someone so young be shackled by this condition? Then I see a ten year old boy, then again another one of eight years waiting for their turn to get dialyzed.
You see all kinds. From all walks of life. Young and old, ambulant or otherwise, fit or sickly-looking, heavyset or lean. I think CKD patients on dialysis and our caregivers and companions share a certain understanding. We know what each has gone or is going through. An experience shared. A kind of bonding. Or maybe we share a common stigma. Yes, let me talk about that some more. The greatest fear I had, after the physician told me that I required regular dialysis, was not the hours I will spend undergoing that procedure, it was not the real threat of added expense to the already depleted cash flow, it was not the thought that I cannot not travel again. But the shame I will face because I am in this condition. I will be boxed and labelled as someone who is ‘sick’. It had a way of making you feel guilty and everything was your fault. Especially if you were perceived to have lived an active life engaged in fitness, sport and recreation.
But then you are bombarded with all these information about your condition, And the more you know and understand, the more you adjust to the new routine. The clinical aspects of kidney failure and dialysis, the laboratory results, the medications prescribed, the diet. As you do that, you also begin to know and understand your body more, as you are the one who feel any of the effects, good or bad, first hand. And you begin to take some control of your treatment. Unless you allow it to stay, gone is the shame you feared most as you face the world with chin high. You become transparent and could freely talk about your condition with others. The information doesn’t stop there. The idea of a possible transplant is breached and a whole bunch of information come flowing in. Blood types, tissue matches, cadaver lists, Philhealth(Medicare) packages, clearances from other specialty physicians. Sometimes, you just need to take a break.
Going back to the nineteen year old girl, I heard through the buzz last week at the center that she was all prepped up for a transplant. That she was in the main hospital and it was just a matter of time that she gets a new kidney. Then a couple of hours into my session, she was wheeled in for her dialysis. Her father later informed me that everything was already in place when her final check up indicated fluid in her lungs. So she was disqualified for that round. And the two healthy twenty one year old kidneys went instead to two other recipients who were below her on the list.
But like the mythical phoenix, you go through the trauma, you go through the stigma. Then you do not want people looking at you like you were ‘sick’ anymore, like you were dependent on other people around you. You have to tell them that the reason for your weight loss is not because you were sick, but because you follow a disciplined diet. In earlier posts, I call myself and other people with the same condition as dialysis patients. I believe we’d like to be recognized as dialysis persons who are capable of living normal lives.