Friday, 20 November 2015

Kidney Transplant

At 4am on Monday 14th September 2015 we got 'the call'

The call to say a kidney was on offer from the national transplant waiting list. And I was first in line to have it provided all my blood tests and health checks were on target. We'd been waiting 3 1/2 years for 'the call'

The kidney was up on the ward when I was due to go for my operation so they gave it to me to carry down to theatre.

The kidney was from a 20 year old - our major thought once offered the kidney was for the family and friends of such a young person who had died - I felt very privileged that they were willing to agree to donation in the midst of their shock and grief. One day we'll write a letter and pass it via the hospital to them to say a huge thank you.

Dialysing five evenings a week have really started to tire us out and having virtually no free time often frustrated any plans we tried to make. During July & August my health was getting worse. The doctors were unable to bring my blood pressure (90/50) up to normal and my hemoglobin  (Hb) was never above 90 when the target was 130 so I was constantly anemic on top of having high levels of toxins in my system. I was injecting erythropoietin (EPO) each week to encourage my bone marrow to manufacture more red blood cells - but even this couldn't get my Hb  up to where it needed to be. I felt constantly tired and exhausted.

We were desperate for a transplant. It couldn't have come at a better time. 

We got to Southmead at 7am (thanks to my parents for getting up early to take us down) and went through a series of tests. Because a previous blood test (which I did monthly for the transplant team) showed unusual antibodies they decided to be sure they needed to carry out a full cross match on my blood and the donor's blood - this took a good 6 hours. Eventually all tests came back good so I was ok to proceed with the transplant operation.

I went down to theatre at 6pm and the  operation took 3 hours. My potassium level in recovery after the operation was very high 7.4 so I had to stay in recovery for 3 hours whilst they took action to reduce it. I eventually got back up to the  ward at 1am - where I met up with Joybelle and the rest of the family - I was amazed they'd stayed so long - but the nurses said they had entertained themselves in the seating area outside the ward - they also entertained the nurses who'd been watching on the CCTV!

I stayed in hospital for 7 days so that doctors could monitor the kidney function but it seemed to start working almost straight away. Others on the ward (there were 7 transplants that week) seemed to have to wait several days for kidney's to start working so my kidney was obviously special!

The day after my transplant operation my blood pressure returned to normal 130/80. My potassium was still very high so I had 2 hours on a dialysis machine on Tuesday to help reduce it. I've not needed to dialyse since which is amazing.

Joybelle and many family and friends visited every day whilst I was in hospital and a friend Paul who works at Southmead came in first thing each morning.

We left Southmead on the Sunday after my operation.

Initially I needed to attend a transplant clinic in Bristol three times each week.

This reduced to twice a week after a month.

And once a week now that its been two months.

All of the team in Bristol were fantastic, so helpful and caring and willing to spend time to talk things through so I fully understood everything.

I'm on lots of different drugs - but have stopped a whole load of others that supported me whilst on dialysis. The antibiotics will finish in a months time - good job as one of them is £40 per day for two little tablets! 

Notice the price on the Valganciclovir - this is 3 weeks worth
and I've been taking them for 3 months - thank you NHS!

I started off on high doses of steroids and anti rejection medicines - these have now reduced significantly. The steroids are now at a maintenance dose of 7.5mg which I need to take forever. The anti rejection medicine is taken twice a day - 2 hours after food and 1 hour before food and at the same time each day 12 hours apart - this means I need to think carefully about when I can and can't eat. The anti rejection levels in my blood are still variable but hopefully they will stabilse over the next month.
The most noticeable side effect of the drugs is that my hands shake quite a lot especially if I try and hold them still -  so using a key to unlock a door takes a few seconds longer than normal.

My various blood levels (calcium, potassium, phosphate, Hb, WBC, Creatinine and blood pressure) are all now normal. My kidney is generating natural EPO causing my Hb to keep rising - increasing oxygen levels and energy. I can survive on 4 hours sleep some nights without feeling tired - whereas previously without kidneys I would sleep for 10 hours and wake up exhausted.
It's incredible what a small kidney can do to keep your body healthy.

Today the plumbing and electrics used for dialysis at home were removed so the house is getting back to normal. We now need to re decorate the room to make it usable again.

We now have 7 evenings a week free.
We can't remember what we used to do with our evenings before dialysis.
Two weeks ago we took Joyful & Becki to the pub one evening for a drink & snacks - it was a great time talking and laughing together and special because we'd not had the freedom to do things on the spur of the moment - everything had to be planned into the diary and the free evening that week allocated.
Now I'm free to see Jake more often - we going to the cinema or just spend time together.

Suddenly we're not constrained and I feel so much better.
Joybelle was exhausted from setting up and cleaning up dialysis five evenings a week - now she's free from that too.

I'm planning to return to work in December so life will really get back to normal.

Thanks for sticking with us and supporting us on our journey.

This started out as a kidney transplant blog - but became a blog about dialysis and a longer than expected journey to transplantation. I appreciate life more than ever and have a better understanding and sympathy for people with illness than perhaps I had before.

The NHS is a brilliant organisation - I can't complain about the care I've received over the last 5 years. They allowed me to dialyse at home to give us more flexibility which was invaluable when I lost my second kidney and needed to dialyse more often.

Thank you to the family who selflessly gave me this gift of renewed life when in such difficult circumstances. 

Keep praying that the kidney lasts me forever.

There are people around who've had kidney transplants last for over 30 years.

I'll be following all the rules about when to take tablets and the foods and drink restrictions in the hope if I do my best to look after the gift I have received that it will last me for the rest of my life.

Rob, Joybelle & family

Thank you for making me so wonderfully complex!
Your workmanship is marvelous—how well I know it.
Psalm 139:14 (NLT) 

How good are these graphs...
Evidence overnight of the miracle kidney !!