“Will my son live to 20? 40?” I ask our nephrologist who just a couple of hours earlier had given us the diagnosis that we had been dreading most: FSGS.
He shrugs his shoulders. “None of us knows whether or not we will get run over by a bus tomorrow,” he says dismissively, a flicker of a smile on his face. I look at him and feel pure hatred rising up like malignant bile and I imagine what it would feel like to punch him in the mouth, to inflict reciprocal pain.
Sensing his error he goes on. “Possibly. Probably. We can’t know for certain.”
“But statistically,” I say.
“There just isn’t enough data.” He says it ‘dah-ta’, and it sounds as pretentious and affected as his bow tie looks.
We talk for several more minutes but I don’t feel I get a straight answer out of him. Maybe there isn’t one. Or maybe he’s fobbing me off. But I feel like someone has punched me in the stomach. Then punched me again. And then again.
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I ask him about how long William might have before he would have to go on dialysis.
“At best, probably ten years, at worst, possibly two. But he would only go on dialysis with a view to having a transplant.”
This morning my son had simply been poorly with nephrotic syndrome. Now we were facing the news that his future was very uncertain. We had gone from simply talking about the side effects of prednisone to discussing transplants. Transplants that are frequently unsuccessful because the FSGS often returns in the new kidney. We talk about the mobidity and mortality rate associated with nephrotic syndrome, FSGS, dialysis and transplants. We discuss him starting Cyclosporin, an immunosuppressive drug they use to prevent kidney transplant rejection, in order to try and reduce the protein levels in his urine. It doesn’t have a good success rate and it carries a risk of causing lymphoma, skin cancer and nephrotoxicity, damage to the kidneys – even though it’s trying to stop damage to the kidneys. Matthew and I struggle to take it all in, but we have to trust the nephrologist because what else is there?
My son lies quietly across the room, his eyes questioning. I know he knows that all is not well. So I smile though I’m crying, wipe my tears and when I am composed I turn to him and talk about High School Musical. Because there will be FSGS in our lives forever, this massive dark cloud of uncertainty and danger. And it will rule our lives but I will do everything I can, everything, not to let it rule his.
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For more information on kidney disease, nephrotic syndrome and FSGS, visit the kidneybeans pages.
{ 5 comments… read them below or add one }
How frightening for you all. Hopefully things will get easier as you are able to accept the diagnosis. It’s hard for our children not to see how worried we are when times are difficult, they sense it too. Hope you are able to make the adjustments you will need to and carry on moving forward.
How awful…sounds like you’re doing everything you can, though, so keep going…he seems like a brave boy too
It’s heart-rending to read your beautiful words and feel your pain. We can never truly understand what you’re going through, but there are many of us walking alongside you xx
“I don’t feel I get a straight answer out of him. Maybe there isn’t one. Or maybe he’s fobbing me off. But I feel like someone has punched me in the stomach. Then punched me again. And then again.”
Ah – I remember having a conversation just like that with a geneticist about 7 years ago
I cried for days! We never went back to see him – switched to another hospital instead and found someone much more supportive!
My BIL was in kidney failure for several years and AFAIK the doctors never really figured out what might have caused it. From diagnosis to needing dialysis was perhaps 5 years. My sister (his wife) donated a kidney to him in November and so far he is doing well. There are no guarantees as to his long-term prognosis. I believe they told her that IF the transplant worked it MIGHT buy him up to 10 years of relatively healthy life. Their attitude was if they got ‘only’ 10 years, that would see their kids into college and some degree of independence . . . I suspect the doctors are fairly convinced that the problem will return. We just have to hope that it will be later rather than sooner.
I honestly can’t imagine what you are going through right now, but I wish you much strength!
I don’t know what to say. A terrible situation and I wanted to punch the Dr even reading it 2nd hand. You have to take it in and be strong for all your boys. And get 2nd and 3rd opinions. And try not to dwell on the worst case scenarios.
Easy to say….
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