When the going gets tough, the tough get going
By ella | June 28, 2009
Although I am a very sad person generally at the moment, on the surface I am, of course, functioning pretty well. But every morning I wake up and for that fraction of a second everything is fine, until I remember that we have a new normal in our family life these days.
So yes, I am a very sad person about everything relating to William’s illness. And I don’t want to be sad, even if it is underneath the surface.
So this morning, after another day yesterday at the hospital, where blood results were disappointing and there was worry that dehydration might hospitalise William again today, we decided to get away. Just like that, no planning, no advance notice (which is quite liberating because there is no time to worry over lists and so on, we will just get up in the morning, throw everything into our hastily purchased roofbox, including one or more of any badly behaved children, and go).
This week will be about being a proper family, not simply parents or siblings to a very poorly boy. It will be a week by the beach, even if it is raining because the kids won’t care. It will be a week of change - although possibly not much rest because we will be self-catering most of the time to accommodate our kidney diet. We will have fun, even if our little fella gets very tired.
It’s not a holiday - at least not until the children are in bed and two exhausted parents might get a minute or two in a hot tub with a glass of wine - because there is no such thing as a vacation when you have small children, it’s just more of the same somewhere else, isn’t it? But the children will love it. We get a change of scene. And that hot tub sounds good, right?
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Categories: Playtime
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Eight words
By ella | June 25, 2009
He’s in a terrible mood: insomnia, bone pain in his feet, kidney pain and prednisolone rages are all combining this morning to make it, well, tricky is the least awful word I can think of to describe it. But if it’s tricky for me today, it’s an ongoing battle for him.
As we drop off Ben at preschool it is just me, him and the baby. He is quiet, tired, clearly in pain. He walks beside me down the hill to the car and whispers, ‘I wish the world wasn’t here any more‘, and I am floored by the sum of everything he is experiencing and feeling, expressed in those eight words.
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Categories: FSGS
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Complications of kidney disease: heart disease
By ella | June 24, 2009
It’s a terrible thing to write but, presuming he survives any life-threatening complications that arise from having nephrotic syndrome or from being immuno-compromised, and presuming he survives any kidney transplant he has to face, my son will probably die of heart disease, probably around the age of forty.
I am forty.
It’s not an age to die.
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There is every possibility Matthew and I will outlive him. It’s another terrible thing we try not to think about because however terrible the prospect of losing your child is, the thought of what he may have to face in his own life is very much worse.
It’s all relative really, isn’t it?
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Most kidney patients, especially post-transplant patients, die of heart disease because the medications they are on lead to such severe cardiovascular disease that their life expectancy is reduced by half.
Your total cholesterol to HDL ratio (TC:HDL) (shown by a blood test) can indicate the likelihood of developing heart disease. Less than 5.0 is desirable. Over 8.0 is considered very high risk. William’s TC:HDL is 11.0.
If you are in the UK, you can help our family and anyone else who is affected by heart disease. Please sign the British Heart Foundation’s petition demanding a better future for our heart health and insisting that a proper plan is committed to and put in place.
The petition will be delivered directly to the Prime Minister, so every name counts.
If you are clicking over there to sign now, thank you.
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Categories: Heart disease, FSGS
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