I won't lie to you. It has been a difficult time.
There are now nine hours of dialysis to endure each night, and once the Christmas of plain turkey, no spuds, no chocolate and no alcohol has passed, I can expect to be increased to ten hours.
My blood results have continued to disappoint. Where once I was largely left alone by my medical people, there are now phone calls. They speak in urgent and sincerely sad tones about how young I am, how careful they need to be with me.
So as I prepare to head home for Christmas tomorrow, it is with a heavy heart. I have had a few meltdowns in recent days, which is unlike me. A lot of finding myself sitting in the dark, a lot of crying.
The extra hour lost to a machine every night has taken what stubborn fight was left in me after two and a half years and almost 1,000 nights of dialysis.
Robbing time from me. Even more time. Seven more hours every week.
I am entirely spent. Emotionally. Kidney disease has taken so much from me. It has chipped away at my physical health, my mental health, my relationships with my family, my relationships with my friends, my career, my plans, my twenties.
I wonder if this is what they do. If they leave you on the transplant list until you reach the point when death is preferable to this horrible existence.
In my case, they are certainly close to succeeding.
Thursday, December 22, 2011
Tuesday, December 13, 2011
The devil's in the diet
It has been a dreary week. Mostly because I was placed on the strictest of diets by my medical people when they caught sight of my blood test results last Tuesday.
No coffee, no chocolate, limited fruit, limited veg, only a drop of milk daily, no potatoes, no chips, no crisps, no sauces, no alcohol, no processed meats, no nuts, no dried fruit, no herbs, absolutely no bananas or avocadoes.
Those were my orders. Which begs the seasonally appropriate question:
Do they know it's christmas time at all?
I went along with it, of course. It was the repetition of the term "we need to keep you safe" by more than one of them that sufficiently frightened me into submission.
The potassium is the thing. It's high right now, and while I can cope with the far-off possibility of a slow, painful death, the fear of going out like a light because of a fatal irregular heart rhythm challenges the rebel in me, quietens my rage against the medical machine.
I'm in the hospital again tomorrow, for repeat tests. If the word back from the lab is no better, there's talk of putting me up to ten hours a night on dialysis.
If that hurdle presents itself, I am looking at 70 hours of treatment each week, and I have to wonder if at that point it might make more sense to consider haemo-dialysis.
Would I not be better off going into the hospital every other day for four hours of dialysis? Could I bear to have a fistula in my arm? Could I live with quitting work, to quietly and finally ceding to this illness for once and for all?
These are all the questions that will await me in the next new year of groundhog waiting-for-transplant days.
For now, I'll settle for improved results tomorrow and being allowed back on one coffee per day.
Happy Christmas Reg.
No coffee, no chocolate, limited fruit, limited veg, only a drop of milk daily, no potatoes, no chips, no crisps, no sauces, no alcohol, no processed meats, no nuts, no dried fruit, no herbs, absolutely no bananas or avocadoes.
Those were my orders. Which begs the seasonally appropriate question:
Do they know it's christmas time at all?
I went along with it, of course. It was the repetition of the term "we need to keep you safe" by more than one of them that sufficiently frightened me into submission.
The potassium is the thing. It's high right now, and while I can cope with the far-off possibility of a slow, painful death, the fear of going out like a light because of a fatal irregular heart rhythm challenges the rebel in me, quietens my rage against the medical machine.
I'm in the hospital again tomorrow, for repeat tests. If the word back from the lab is no better, there's talk of putting me up to ten hours a night on dialysis.
If that hurdle presents itself, I am looking at 70 hours of treatment each week, and I have to wonder if at that point it might make more sense to consider haemo-dialysis.
Would I not be better off going into the hospital every other day for four hours of dialysis? Could I bear to have a fistula in my arm? Could I live with quitting work, to quietly and finally ceding to this illness for once and for all?
These are all the questions that will await me in the next new year of groundhog waiting-for-transplant days.
For now, I'll settle for improved results tomorrow and being allowed back on one coffee per day.
Happy Christmas Reg.
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