Plumbing problems (part II)
20 January 2010
Patients with terminal illnesses go through difficult times, and this piece reflects that. Some people may find the graphic nature of this entry distressing, particularly if they or somebody close to them has been affected by a serious illness.
I came home from hospital to die.
I was too weak to stand, every sip of water I took I vomited back.
My son went out and bought me some ice lollies, with the flavours and artificial sweeteners they tasted unimaginably vile.
He got some ice lolly moulds and made me lot of apple juice and pineapple juice lollies, I could tolerate those without being immediately sick. My friends scoured shops for pure juice ices and ice cream.
My catheter bag still hung flat and empty, my head drummed, my eyes were dry.
I woke each morning in shock, opening my eyes on a familiar room that was somehow still there. I was still sucking ice, some small tastes of food, things that didn’t smell so that I could be in the same room without vomiting. When my mother cooked for herself and my son all the doors in the house had to be sealed so that I wouldn’t be sick again.
On the third day there was about a hundred ml of urine in the catheter bag when I woke.
By the end of the week I was strong enough to help the carer when she came to wash me in the morning, and there was 500 ml of urine in my catheter bag overnight.
After three weeks I was strong enough to wash myself. They gave me a catheter bag I could strap to my leg so that I could go out and about. Most people strap them to their lower leg, but I’m quite tall so the tube wasn’t comfy stretched that far. I wear mine strapped to my thigh, like Lara Croft wears her guns.
Wearing a catheter was great. I didn’t have to keep getting up all through the night to try to wee, and most of the time I wasn’t leaking from my fistula. Sometimes I would wet the bed if I lay in the wrong position, but I was dry standing upright or sitting.
When I say sitting I really mean lounging. Sitting upright on radiation burns, scar tissue, and a catheter tube isn’t really an option. To sit upright in a chair for more than ten or fifteen minutes I need painkillers to cope. I’ve spent too many months muzzed out of my head on painkillers to want to take them if I can avoid it by avoiding chairs. I sit with my back supported at 45 degrees and my feet up, and I am comfortable and drug free. Waiting rooms are hell.
After the kidney failure my kidneys were not producing the hormone my body needed to tell it to produce new blood cells, from the July to the September 2008 I was needing a blood transfusion every three weeks, but as I stabilised so did my haemoglobin levels and so far I haven’t needed another transfusion.
After living happily with a catheter for a few months I went to move my bowels one day and the catheter came out, with the balloon that was meant to hold it inside my bladder still fully inflated. Ouch!
After that had happened several times, they changed the 10ml balloon sized catheter to one with a 20 ml balloon. That was fine for a few months then the same thing started happening again. Yow!
I went to see my gynaecologist, she thought I might try 30ml. Problem, none in stock at the hospital. Never mind. The catheters were made of pretty sturdy material, perhaps she could over inflate one? Obviously she should check that before she tried it on me. So a range of catheters were got out of their packets and over inflated to 30ml. Then she took hold of each fully inflated catheter and used it to wallop her desk repeatedly as hard as she could. I was fitted with the survivor, obviously not the actual one that was walloped off the desk, but the same brand. I was a bit leaky as the balloon didn’t inflate evenly and spherically but it lasted me until a more suitable catheter arrived from the suppliers.
After that I always took my own spare catheters with me on doctor and hospital visits as they were not likely to have my size in stock.
I’m having routine operations every six months to replace the kidney stents.
The 30ml catheter mostly stays in place, the balloon bursts inside me sometimes, like having a rubber band twanged on your skin, only inside my bladder. A sharp sting, makes me bleed a bit.
My next option to that is to have a hole through my belly to thread the catheter through. What they call a pre pubic catheter. I’m not a hundred per cent keen on that idea.
I get water infections easily, if I catch a cold it often affects my kidneys as well. I get rid of a cold in a week like anyone else, but it often leaves me so weak it takes a few days for me to be strong enough to walk again. It does weird things to my blood, too much ferratin, too much creatine, not enough haemoglobin. I was told last time I was in hospital that if an otherwise healthy person was given the level kidney function that I had at the time, they would die almost immediately, because I have had sub optimal kidney function for so long my body has learned to tolerate the toxins.
At the time I’m writing this, one of my stents blocked again, and then again, a few weeks ago, so I had to have a nephrostomy tube on my right side. I have urine bags strapped to both legs at the moment. I had my routine stent replacement operation on the 15 Jan 2010 and I was hoping to get rid of the nephrostomy tube then but they kept it in as a precaution, which was the right thing to do because they couldn’t get the right hand stent to go in. There is either a blockage or curvature in the tube so it wouldn’t thread through. They are hoping they can thread the stent in from above through the hole in my back when they change the nephrostomy tube. At least my creatine levels came down enough for me to have a general anesthetic. It’s not much fun under local.
So I should be having another minor op in the next few weeks.
It just a question of patching up the plumbing!
Read other posts in Val’s diary here:
2 June 2010 – Hooray for corsets
3 March 2010 – It’s your funeral
24 February 2010 – So what is a stent?
10 February 2010 – A nice cup of tea
3 February 2010 The joys of negative thinking
26 January 2010 – My secret tattoos
20 January 2010 – Plumbing problems (part I)
6 January 2010 – Of vampires and vaccinations
29 December 2009 – Beauty and fashion
17 December 2009 – How the Doctor kept me going!
11 December 2009 – Why am I not depressed?
4 December 2009 – Why I didn’t want to attend Severn Hospice!
