Wednesday, 13 March 2013

Progress Update

I've been using my fistula for dialysis for 2 weeks now. The first two times it was used the vein blew and I ended up with a very fat arm full of blood. I've still got huge bruises on my arm nearly two weeks later.
I've been using my fistula without too many problems for dialysis 3 times per week until today. Today when I got up I noticed that I had a large lump in my fistula and it had stopped buzzing. I went into hospital (like I've not seen enough of the place recently!) and the lump eventually dispersed and blood started flowing again. I've got to go in tomorrow for an ultrasound investigation to ensure everything is ok. They aren't sure if there is an aneurysm in the vein or if blood has just leaked out of the vein into surrounding tissue. This means they can't put needles into it yet and they've had to cancel my dialysis tonight - I will get dialysed after the scan in the morning.

On 5th March I got a second infection which resulted in very high temperature, shivering and heart palpitations. I got sent to A&E and spent one night in their being monitored and given lots of antibiotics - then had to stay in a further night on Acute Admissions ward. I didn't get very much sleep at all over the two days and was really glad to come back home.

Because of the infection my consultant decided it would be best if I had my neck line removed as this is often how infection is acquired - so I had a mini operation on Thursday to remove the line in my chest. It's nice that its gone - but does mean I have no backup if my fistula has further problems.

I had a CT scan on 7th March - a surgeon has asked for this so that he can better understand my anatomy and make informed decisions about how to remove my very large kidneys. If the CT scan shows no complications he might take both kidneys out in a single operation. Having no kidneys at all will mean I am totally dependant on dialysis to regulate chemicals and fluids in my body. My kidneys need to be removed so that there is space for a new kidney when one gets offered from the national waiting list. I am also in significant pain in my back and sides from my kidneys pushing other organs out of place in my abdomen - so removing them should result in an improvement in pain symptoms.

I have an appointment on 25th March to discuss my CT scan and agree an operation date sometime in May to have one or both kidneys removed.

It does feel like my health has got more inconsistent over the past two months with several complications caused by my kidney disease. I'm still not working proper hours and until I get more stable I can't see that changing. From April I will drop to half pay which will present yet another set of challenges. But I'm remaining positive confident my issues will right themselves and all things will work together for good for those who love The Lord.

Thanks for all your ongoing support and prayers - its your support that keeps us going.

Rob & Joy

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