“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.
“If he doesn’t respond to the medication, which is a high possibility? 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 his favourite film. 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 my kidneynotebook blog.
{ 9 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….
I know Im 2 years late on this response but I have a 14 year old with FSGS and now my 2 1/2 year old just started showing signs of the same disease. At 3 years old my 14 yr old did not respond at all to steroids or cyclosporine. Dr then put him on Zestril and he totally stopped losing protien in his urine. The past month he started spilling a little protein and got a really bad case of eczema all over his body. My 2 1/2 year old also has eczema on upper arms and lower legs. Just wondering if your son ever had any skin problems.
Hi Jessica, thanks for stopping by and sorry to read that you have two affected with FSGS
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William only ever had mild eczema before he was diagnosed and as soon as he went on immune suppressing drugs it disappeared. He’s still on those drugs so we haven’t seen any more eczema on him. It runs in our family and one of our other children has quite bad eczema and another skin condition called oral allergy syndrome.
Thank you so much for responding to me.I quickly looked through some of your posts. What I got from it was that your son is now in remission but is still on immuno suppressing meds. May I ask which one? And if your Dr ever tried an ace inhibitor? Zestfulness was a blessing to Justin(the 14yr old) once they started him on it all the sicknesses and hospital stays ended. The only time symptoms of his disease comes back is when he stops taking it. Does any kind of kidney disease run in your family. I don’t have any history n my sons have different fathers. Both presented with disease at 2 1/2 . I also have a 1 ye old daughter and my Dr is concerned she may developed it also.
Hi Jessica, William is in an unsteady partial remission and is still on Ciclosporin (prednisolone didn’t work for him). He is currently tapering his Ciclosporin because he is on such a high dose and we wait to see what the future holds.
He was on the ace inhibitor Enalapril but had to come off it recently because of high blood potassium levels. His blood pressure has not been high since he came off that which is good.
No kidney disease runs in our family but we have been told that all our other children are potentially at risk and we monitor them regularly. We have not had genetic testing yet but we did join a genetic study program which would tell us if we are at risk and we have not heard anything yet from them.
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