I ended up with another infection just after the last post on 9th May and was in hospital for over 2 weeks.
The hospital did numerous blood cultures but none definitively showed infection.
They tried to send me home on two occasions by moving me off IV antibiotics and giving me tablets. Both times within 24 hours my temperature soared to over 40C and they had to put me back onto IV antibiotics.
Whilst in hospital I had another CT Scan, chest X-ray, back X-ray and they tried to give me an MRI scan. Luckily the radiography asked the right questions and found out I had metal clips after my kidney removal operation. He said if they'd gone ahead with the scan the magnets could have pulled my clips out of place and caused an internal bleed. The MRI did not go ahead!
I eventually got out of hospital on Saturday 24th May with a combination of two antibiotic tablets and have been ok since.
My operation scar is healing well but is still painful if I stand up for too long. My energy levels are really low. I could sleep all day quite easily but I usually manage to get up by 10am.
We managed to go to an Israel Houghton concert on Sunday evening this week in Birmingham which was really good - nice to get out and do something normal.
I've been waiting over 2 months for a call from the home dialysis team.
We hope to begin dialysing at home as soon as they can get it organised.
I've managed to find out that there is currently a stand off between the hospital and the home dialysis company because of changes to how payments are made. This has resulted in the home dialysis service being temporarily suspended for new patients. I've written a formal letter to the service commissioner to ask them to try and break the deadlock.
I now have a wheelchair which I use if going a long way on foot. I get tired quickly and have very bad back ache. I'm still on morphine patches to help reduce the back pain. I can manage shopping in a supermarket because I am able to lean on the trolley - but for walks and trips into town we will use the wheelchair until my pain reduces. It's been nice to go out for walks in the sunshine - in the wheelchair!
My haemoglobin level today is now 93 the highest it's been since the operation - but it really needs to be 120 so that I'm not anaemic and have more energy. But at least its increased from after the operation when it was 70 and they wanted to give a blood transfusion.
I've been out of hospital for 12 days now. But tonight on dialysis my temperature has been high, I have kidney pain, am shivering and my infection markers are high. (C-Reactive Protein [CRP] is 34 when it should be under 3)
It was looking like I was in for another hospital stay and haven't even managed 2 weeks at home. We got lots and lots of people to pray and by the end of dialysis my pain had gone and temperature was back to normal so they let me go home. Amazing Miracle! Hoping all stays normal overnight as we had planned to go away for a few days over the weekend - really don't want to mess up the break we've so been looking forward to.
If these infections keep happening I think they will have to get on and remove my remaining kidney.
Thanks for your support and prayers.
Please continue to pray
1. Haemoglobin levels rise
2. Energy levels rise
3. Current possible infection comes to nothing overnight
4. That the issue with home dialysis is resolved quickly
5. That I get offered a matching kidney from the national organ donor system :)
Rob & Joy