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 !!



Wednesday 13 May 2015

Progress Update

WORK
Work is going really well and I'm working four full days with a rest day on Wednesday.

At points during the work day I do feel exhausted (usually around lunchtime) but once I get through that difficult hour I feel fine. So I'm trying to build rest into he middle of my days. I've felt dizzy and feint at times but my team are excellent and look after me well.

I tend to start early and finish late - in an ideal world I'd like to get all of my hours for a 5 day week into 4 days. Work have been very supportive and accommodating. 

HEALTH
My key stats are positive although my potassium and phosphate levels vary quite a lot so I'm needing to manage my diet more closely. My dialysis fluids have been modified a few times to keep my potassium levels correct and I'm taking phosphate binders at times to manage phosphate levels down.

Chemical blood levels and my health are more difficult to manage now that both kidneys have been removed - its amazing how much our little kidneys do to mantian a healthy body and precise balance of many chemical levels as well as removing toxins and waste.

Home Dialysis is going well. We rarely have issues and we seem to have a good routine - I'm so glad we have everything at home it has had and is having a profoundly positive impact on family life. We now do five evenings a week which is a bind and severely reduces social life - but I couldn't imagine having to go into hospital five evenings a week. Our life works well around dialysis and it just feels normal now.

My blood pressure is low and I'm taking tablets to try and push it upwards.
Often after dialysis my BP is at 90/50 or lower and on about 6 occasions I have completely blacked out and crashed to the floor - most recently on Saturday last week and for the first time when my wife Joybelle wasn't around - so this shocked my children.
As a result of these falls I seem to have permanent large bruises on the right side of my body - falling to the right seems to be what usually happens. We'll monitor this and try and resolve by increasing my BP  It was less than 3 years ago that I was on medication to reduce my BP! Now I need it to go up.

I still struggle with very sore feet and hands at times and this means I walk very slowly due to the pain. Sometimes I can't even lift my arms in the mornings if I've had dialysis the evening before.

I'm sleeping well most nights which is positive and that's enabling me to get to work. My Haemoglobin levels have risen after increasing EPO injections so this is also helping with my energy levels.

I recently had a significant skin problem (Guttate Psoriasis) which covered my whole body with sores and my skin was flaking off all over the house much to Joybelle's annoyance. I saw a consultant this week who said my condition was severe and although much improved gave suggestions which included a holiday in the sun! Good job we're off to Spain soon for a week of sunshine! :)

Six months ago I had an ultrasound which showed a fatty lump under my arm called a Lipoma. It is annoying as it puts pressure on a main nerve so I can't have my arm close to my body so sleeping on one side is difficult at times. My doctor did refer me to a consultant to have it removed but Gloucester hospital rejected my appointment and said there was no funding - a sign of the times we live in.
The NHS just doesn't have the funding to fix everyone because of the increasing population. 

LIFE
This year we said we wouldn't let dialysis stop us doing things - so we are going to Spain twice, London for a weekend (Hillsong Conference) and a weekend in Bournemouth over the Airshow weekend. Having home dialysis means we can dialyse anytime we like - so we can do it early in the morning or very late in the evening to enable us to get out and about and live as close to normal a life as possible. We're having dialysis in different hospitals whilst on holiday - this is funded by the NHS which is amazing and we're grateful that this provision allows us to go away on holiday like a normal family.

I've now been on he national transplant waiting list for over 3 years. The average wait for a kidney is about 3 1/2 years so we are getting closer - let's hope I'm an average person!

Every night I go to bed hoping that I'll get that call from the Bristol transplant coordinator in the middle of the night!

Thanks to everyone who still asks how we are - we really appreciate your support and prayers. 

Keep praying for the perfect kidney transplant & also for my blood pressure to behave itself.

Rob & Joy

Saturday 24 January 2015

Back to Work

I'm feeling much better and am preparing to return to work.

We have reverted to dialysing every day which can be hard work as we need to juggle 2 hours dialysis (which takes 3 hours inc setup/set down) as well as try and have a life where we can actually go out some evenings. We found that dialysing alternate days caused me to feel more ill due to no blood filtration.
Once back at work this will become increasingly limiting as we won't have the option to dialyse during the day.

My hands are no longer blue. phew!
We think they went blue becuase we took off too much fluid during dialysis and there just wasn't the blood or pressure to get to my hands. Whilst my hands are a normal colour they are often cold and have pins and needles.

When I last wrote I was suffering low blood pressure and regular feeling feint or on a few occasions blacking out completely. Most people feel feint whilst on the dialysis machine if too much fluid is coming off - for some reason I don't and therefore it can be easy to take too much fluid off if we're not careful.

Managing my fluid levels  and blood pressure is more critical and more difficult now that I have no kidneys at all.

I'm still suffering sore feet and hands, lowish blood pressure (100/60) and restless leg syndrome which stops me sleeping. But I do feel so much better than 4 weeks ago.

I want to return to work and have an appointment next week to see Occupational Health (who are very cautious!) and my boss (who is very cautious) but the doctor has signed me off as fit for work - so I just need to convince them next! 
I'm sure most employers would be almost forcing me back to work - so I guess I should appreciate having such a kind accommodating employer!

I've spent my days over the past 3 1/2 months resting and also developing a leadership development website when I had the strength.


This week I spent a day creating a very simple website for my sister-in-law who is trying to raise money to modify their home so that my very ill brother can return home and live with his family. It's been 18 months since he was at home because of post op complications causing paralysis. He's currently in Stanmore hospital in London and the therapists are doing great work with him.We're praying for a miracle recovery for him - so that he can be a father to his children again.


If you'd like to buy a brick to help with his house modifications please go to this website


At home my Joy has been the ill-est I've ever seen her with a terrible virus that has turned into Tonsillitis - poor her. Really want her to get better but she's still feeling very sick today even after the GP changed her medication. She has spent several days not even drinking a cup of tea all day - how bad is that!

Please pray for :-
Joy to recover from her illness
For strength so I can return to work (and that they would let me!)
For strength to keep going with daily dialysis
That we would be able to manage our time to actually have some social time!
For that perfect kidney that we are desperate for

Thanks for reading.
We appreciate your thoughts and prayers.

Rob & Joy

Sunday 4 January 2015

Blue Hands

3 months post second kidney removal health is taking a dip. 

Life was much better with kidneys as God designed. All the man made dialysis technology doesn't compare.

After the ups and downs of the op in October things had settled down and I began to feel quite well with strength  returning in November. 

But towards end of December my strength dropped. On dialysis yesterday my hands went blue - not sure why. 

We called the kidney ward and asked if they would get the on call kidney consultant paged. We spoke to Dr Morriaty - a fab kidney doctor. He said not to worry and we've booked in for a dialysis slot during the day on Tuesday for assessment. 

So much for returning to work next week...
That's quite frustrating - as work are expecting me and I'm expecting to be back. 
Hopefully this will be a short recovery blip once treatment settings have been tweaked. 

We're still trusting for a kidney in the near future to put my body back into natural balance. 

Keep praying - the journey continues - and God is still in control (thank goodness)

Pretty photos of my hands follow :-