Happy World Kidney Day! Apt that we are at Guy’s today for Andrew’s weekly checkup. It is now three months since he received his new kidney. He has graduated today to fortnightly appointments and another big step, he is starting his phased return to work on Monday! All this is thanks to his amazing donor and the brilliant team at Guy’s. #worldkidneyday#yesidonate
Chronic Kidney Disease
We have got very good at waiting. So good that we know where to find the good seats in the surgical admissions lounge! Back row lazy boys for the win!Andrew is doing really well still. Today he is having a very small operation to remove the catheter that was put in his stomach at the end of November when they were planning for him starting dialysis. They will take that out and the stent that was put in during his kidney transplant op. When he has recovered from this op he will be able to pick the children up again something they are very excited about! With the dialysis catheter in he has only been able to lift up to 15kgs so been a long few months of no daddy pick ups! Tuesdays blood test showed a good up tick again in his kidney function. Was a relief after 10 days of it plateauing and creatine slightly creeping up again. This was due to his immunosuppressant level not being quite right. After a couple of changes to the tablets he seems to be on the right track again.
Andrew’s creatine has come down to 249 which is incredible. This is a GFR (measure of kidney function) of 25 – the last time it was that high we think was around May 2017. It puts him out of end stage kidney failure. The day of his operation his GFR was 7.His tac level today was a little low so they have increased one of his immune suppressants. Tac or Tacrolimus level is the measure of treatment needed to prevent organ rejection. They have to find the optimum balance of suppressing his body from attacking the new kidney, whilst still allowing it to function. During the early stages after a kidney transplant getting this balance right can sometimes see a change in the kidney function. He’s been asked to increase his tac drug to raise that level, therefore lowering risk of rejection. It might be at the next test it shows the tac level higher and the kidney function a bit lower but eventually they will find that balance! Andrew is very pleased with how his new kidney is functioning and enjoyed being able to eat some chocolate over Christmas! I got given a job at the clinic today of taking his urgent bloods over to the lab amazing to think these little bottles can tell us so much! (Probably a sign I’ve been there too much too now they are giving me jobs!)
Best feeling to have him home!! This mornings blood test showed a drop in the creatine! What we had been waiting to hear, the new kidney it seems has started to work The CT scan showed a healthy new kidney and no kidney stone which they had thought he might have. He was discharged this afternoon and will be back at Guys on Monday. The tests on Monday will hopefully show a continuing drop in the creatine So amazing to think that just a week before we had walked into Guys unsure what to expect. To see him walking out just a week later is just incredible
Not home today unfortunately. Rather than going down, his creatine has gone up! One doctor thinks the kidney isn’t sleepy and there is something a miss, another thinks everything is fine still! So a few more tests today a CT and ultrasound. Drinking lots of water and another review tomorrow morning with the mornings blood test. Andrew’s certainly rattling about with the amount of tablets he is now on. The amounts will change over time depending on how the kidney is working with his body. One of the most important ones is the immune suppressants. That is what stops his body attacking the kidney and rejecting it. He will be on these for the rest of his life. He’s had two infusions of immune suppressants as well as having three different oral immune suppressants to take throughout the day. He’s also on steroids at a low dose that also act as a suppressant and a tablet to help prevent him getting chest infections. His immune system has essentially been wiped out by this combination and we’ve seen people return to the ward who had been discharged earlier in the week having now caught an infection. The early months after transplant it is so important to limit your exposure to germs that would normally not have affected him. They recommend no public transport for 3 months. No eating in restaurants or takeaways for 6-8 weeks, so he’ll have to put off that kebab for a while. I’m off home now to go and wrap Annabelle and Lukie’s presents ready for Tuesday. We were due to be going on holiday tomorrow for Christmas week but have obviously had to cancel that. We are keeping everything crossed we still get to enjoy a quiet Christmas at home together. Annabelle and Lukie got to see Father Christmas today and the dog seems to have got a job at the local pub so it’s safe to say they are in good hands. But it will be lovely to be back home together.
All reports were good again today – no sign still unfortunately of Andrew’s creatine going down though. I have a tin of celebrations on standby in the ward ready to celebrate when the new kidney kicks in! The doctors remain completely positive still.
The ward was a lot quieter today as they are hoping to get everyone home for Christmas and a lot of people have been discharged already. Firmly crossing our fingers that Andrew will be home soon too, maybe even as early as leaving tomorrow!
No change to report from up here I’m afraid. I imagine it’s a bit like waiting to hear confirmation you’ve won the lottery. The new kidney is still sleepy and not yet showing signs of functioning. This was making me feel anxious but the doctors have repeatedly reassured us that there is no cause for concern. They did another ultrasound of the new kidney today and blood is flowing round it well still, so the doctors are happy. We are waiting to hear that Andrew’s creatine has come down. This will show in a blood test and if it comes down it’s an indication the kidney has started working. So every blood test result we hold our breath and hope to hear it’s gone down! But when it finally does it will feel all the sweeter I’m sure. We heard today about someone whose kidney didn’t start working until 2 weeks after it was transplanted – so it’s still very early days.
6 years ago, on 16th June 2012, Andrew and I got married. In his speech Andrew talked about all the struggles we had already overcome in the time we had been together. I framed a quote from his speech for our first wedding anniversary, never knowing how much we would put it to the test.
“Challenges are what makes life interesting. Overcoming them is what makes life meaningful.” Joshua Marine