FSGS is a rare kidney disease. It is a condition for which there is no proven treatment. Despite the use of cytotoxic agents, steroids, immunosuppressants and plasma exchange, approximately 50% of those who do not respond to medication progress to renal failure, half within 2 years and the majority within 5 years. Many sufferers will be looking at a transplant within 20 years. For a child this can mean multiple transplants in a lifetime because they don’t often last more than 10 years. Worse, in FSGS the disease often returns in the new kidney, sometimes within hours of the transplant, resulting in another decline towards end stage renal disease and dialysis before another transplant.
Life expectancy for kidney transplant patients is lower than the average life expectancy (life expectancy is reduced by 20-40 years), mostly due to cardiovascular complications resulting from taking ciclosporin to prevent organ rejection. My son is already on ciclosporin, so I assume he already falls into this category although we don’t kow how long he’ll be able to take ciclosporin for.
It’s a gloomy picture for a five year old boy.
Additionally, there are often problems before the onset of renal failure secondary to complications of the nephrotic state which often accompanies FSGS, some of which are life-threatening (we make an emergency trip to the hospital most weeks, sometimes ending in hospitalisation).
Remission of proteinuria (protein in the urine), either complete or partial, is a strong indicator of increased renal survival rates. (William is not showing any signs of remission despite nearly three months of treatment although we remain hopeful he will. Our biggest hope now is that he can get a long enough remission so that he doesn’t have to face dialysis or a transplant while he is a child.)
Nephrotic syndrome, along with the side effects of the very powerful drugs he is on, make him feel really crappy. So crappy that he has not been to school at all since Christmas. So crappy that he rarely wants to play outside. There are bad headaches and lots of vomiting. And lots of unpleasant medicines to take several times a day. His appearance has changed so much due to the corticosteroids that some of his former classmates barely recognise him. There are dietary restrictions which means some of his favorite foods are off-limits. Then there are weekly routine visits to the hospital for bloods and other tests.
He is 5 and his childhood has been taken away from him. His future is likely to be very hard. We will learn to deal with that, but we can’t just yet.
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I think of you so often but I can’t begin to find any words to help…..
You are so strong – especially with the other boys too. Poor William. I hope he shows some progress soon.
x
Thinking of you and all that you are going through.
My son is 12, has had FSGS since he was 7 and has not responded to any treatments. Everything you say applies to him/us. None of the other kids in the clinic respond to the meds with the headaches and vomiting like my son and yours and so even the doc, who is great, does not understand just how bad it is to watch your child have so little quality of life.
Reading your comments is like talking to myself. Hang in there. Every so often I think, how can we/he carry on and yet 5 years have passed and even though life for him is very hard, he still laughs, has a great sense of mimicry and humour and things he enjoys, be they much, much fewer than other kids.
Hi Ella,
I read your story and can say without hesitation that you are a brave mom. I cannot imagine what you go through every day with your precious son. I feel your pain, even though my sons are healthy I cannot bear the thought of going through something like this. I am almost scared to think about how I would deal with a situation like yours. I can barely handle my little boys getting sick with the flu, as I break down and therefore useless.
You are an inspiration and an example to all moms who are going through similar situations. Good luck to you and your family and I hope from the bottom of my heart that your son gets healed. You will all be in my prayers.
my son is 14 i found out he has fsgs for the pass 3 years its killing me to no there nothing we can do i pray to god everyday is there anything we can do or start some type of program to help find a cure i cant live with out my son he is my world please help me understand why him… a MD told me that they only give 2 transplant per person is that true ???? i have lots of questions please contact when u can…. Thank u
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