Creatinine 256

Adrian’s monthly blood test results are showing a pretty steep elevation in creatinine. From 209 at the beginning of September to 256 as we start into October.

The consultant here in Norfolk is aware, and the results have been passed on to the team at Nottingham. I haven’t heard anything further,  and there seems very little I can do except worry, and watch his diet and fluids very carefully.

Although Adrian has Chronic Kidney Disease – Stage 5, he doesn’t exhibit many more symptoms than at the stages before. Increased tiredness perhaps being the only noticeable difference just lately. Luckily Adrian is easily comforted by a two-hour + nap every day. Just before lunch, he’s out like a light in his pram. It ties us to the house, but is necessary to avoid a cranky and whining little lad.

I have started thinking about what to pack in our hospital bags. Adrian’s not even onto the national transplant waiting list yet. I have been told it can take around four months to get a patient “worked up” and ready for surgery. We are yet to meet the transplant team in Nottingham, who I’m hoping can give us more information on who could be likely candidates for potential kidney donors within the family. I’m hesitant to put my name forward first, purely because i’m Adrian’s main carer, and feel I need to be there for him from the moment he opens his eyes post op. Because he’s just a baby, and is under a children’s hospital, any adult donor’s operation would take place at a different nearby Adult hospital/unit. It’s possible for it to be several days at least before the donor can visit the organ recipient. Not my favourite option so far.

If we fail to find suitable donors in the family, the deceased donor list will be Adrian’s best option, and the start of the excruciating wait for an organ that matches. I read yesterday that there are currently 69 children in the UK waiting for a kidney.
During the wait, Adrian’s kidney function could of course fall to dangerously low levels, which will require an emergency hospital stay to initialize dialysis.
Packing bags is really one of the only practical things I can achieve. The rest feels like pure luck.

Kidney Transplant Letter


Last week Adrian and I went back to Nottingham to have a nephrology review following our stay on ward back in July. The one day trip was a success in as much as both planned tests were completed, bloods taken and he was reviewed by Dr Evans. I was told then that Adrian’s rapid decline in filtration was quite a surprise to them, as he’d been doing a lot better than it was ever anticipated for over a year. The upshot of his filtration decline however is seemingly irreversible and has simply sped up the need for further treatment. Dr Evans told me he would get a transplant letter sent out to me in the next couple of weeks, and yesterday it came.

Just an ordinary looking envelope, but the contents knocked me sideways. Most of the detailed information within I did actually know, but to see the words laid out in black and white made me feel hopelessly scared for the future.
Adrian ‘s eGFR is now as low as 14% in his single remaining kidney, meaning he is now at stage 5 Chronic Kidney Disease. Dr Evans went on to plot graphs of his expected decline and estimates that Adrian will reach ESRF (or 5%GFR) in approximately 12 months time. It is at this point that Adrian will need to receive life saving treatment such as dialysis, if a pre-emptive transplant isn’t performed.
When I think back on the flurry that was the last 12 months, and how quickly it seems to have passed us by. I can’t even believe that Adrian only has that time left before something so major needs to be done to sustain his little life.

Since yesterday, I just can’t stop thinking of all the possible complications and dangers that surgery faces. The terrible distance from home we will be if dialysis is suddenly required, and just how unfair it is that Adrian won’t be able to enjoy a carefree childhood.