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 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. 

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. 

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 :-

Wednesday, 5 November 2014

Great Blood results

I came out of hospital very ill on 24th October due to high levels of toxins in my blood because I no longer have any kidneys. I've dialysed 10 out of the past 11 days and look what its done for my blood results!



These blood levels (particularly Urea, Creatinine & eGFR)  from 4th Nov 2014 are about the same as they were in December 2012 when I started dialysis - not felt this good for a while.

Dialysing everyday is a chore though and I'm not sure how it will work out when I'm back at work. I should get back to work once my Hb has got to about 115 again - this might take until January.

Hoping for a kidney in the Christmas transplant rush…Keep praying.

Sunday, 2 November 2014

Kidney 2 Removed

Finally feeling better after having my second kidney removed on 7th October 2014.
I now have no kidneys so am 100% reliant on my haemodialysis machine for blood filtration.

The operation went really well but there were quite a few post op complications.

I spent about 6 hours in recovery because my blood pressure was far too low. I nearly ended up with needing a blood transfusion but narrowly avoided this. I had been clear with staff ahead of the operation that I didn't want a transfusion because it has an impact on future kidney transplant options.

I eventually made it down to Dept. of Critical Care (DCC) in Cheltenham.
Almost straight after I arrived in DCC a blood test revealed my Potassium at 7.1 which was far too high. Rapid treatment to reduce my Potassium had an immediate impact on my blood sugar and I began to loose consciousness. They soon reverted my hypo state by feeding me lots of dextrose tablets.

A few days after the op the Dr noticed my fistula (fast blood access for dialysis) wasn't beating and had clotted. This was probably caused by me coming off daily aspirin as they wanted my operation site to clot and heal.
By the end of the day an emergency operation was booked with vascular surgeons to try and save my precious fistula. I had keyhole surgery and they eventually used tiny balloons to collect the blood clot and also to blow up and stretch the collapsed artery. Not very comfortable but totally amazing work. My fistula was fully healed. 

I was given lots of blood thinning/anti clotting medicine as a result of my fistula clotting but this lead on to the Dr discovering I had a significant internal bleed at the operation site. To resolve this a further operation was booked for a drain to be inserted into my back - thankfully I don't remember much as I was given some very good relaxation medicine of some kind. 

Whilst in DCC I was dialysed on a filter machine which runs much more slowly than a normal dialysis machine. Unfortunate staff were not well trained on the machine and on two occasions the machine clotted and I lost all the blood that was in the machine. 
This further reduced my haemoglobin levels and pushed me closer and closer to a transfusion again. We managed to get them to delay the transfusion and eventually they agreed I was stable enough to not need the extra blood - phew! It was annoying as we had seen the signs of the machine clotting and when we asked to be removed from the machine before I clotted and lost blood again, the response from the staff was that the filters on the machine cost lots of money and therefore they wanted me to be on it as long as possible. I wish they saw my blood as more valuable than their blessed filters but never mind - I lost blood for the sake of a filter....

After 10 days in DCC I was moved to ward 7B in Gloucester. A great place during the day with many top kidney experts. But at night it's a scary place. No where near enough staff for the number of very ill patients on the ward. On the second night the man next to me who was delirious and very unwell kept climbing out of his bed and whenever other patients pressed the nurse call button no one came. After waiting ten minutes I wondered up and down the ward looking for staff, still very unstable on my feet. Only 1 nurse was on the ward. No one else at all! I think the other three staff went on a joint break. Needless to say the gentleman next to me died due in part to a lack of nursing capacity on the ward. Lesson - avoid being on the ward unless you really have no choice.

We checked ourselves out of the hospital the next morning!

Two 1/2 weeks after the operation I still wasn't eating or drinking and had serious stomach pains. My GP came to see me and wanted an ambulance to take me back in to hospital. It took 7 hours for the ambulance to arrive and once in A&E they eventually put my pain down to not enough dialysis & the toxins in my body were increasing daily. After a night in ACUA (Acute Admissions ward) and getting very poor treatment we self discharged again on Saturday morning in between Joybelle getting her hair done for Kye & Emily's wedding, putting me on dialysis and actually being the registrar at their wedding. Don't know how my amazing wife managed to fit so much in that morning. 

When we got home we were phoned by one of the Consultants from 7B who advised us that we needed to dialyse more frequently as I have 0% kidney function now, shame they didn't tell us that before we left the hospital. We're dialysing daily for the next two weeks and then will try and go to alternate days. So glad I have an amazing wife who's also my amazing nurse.

I'm home now and feeling much better.  We both picked up a nasty bug in hospital which has taken a week to recover from. But we're on the up now.  All future issues we'll call a kidney consultant directly as GPs just don't have the experience and respond by hospital admission when it's not always the right answer.

Thank you everyone for your ongoing support. We really appreciate all of your prayers.

My faith has been challenged. How can a mighty God who can make the impossible happen let me be this ill. But I guess you could ask why not me. Why should anyone else have to go through this - rather me than someone else. 

Some photos below :-

Care in DCC at Cheltenham was excellent. 

Pretty wound - most bruising has gone down now.

Operation site after clips were removed.

Back drain was a pretty picture too.

Back once the drain was removed.

Had a groin line for temporary blood filtration.

Who knew the groin line was a foot long under the skin!

Pizza delivery to critical care - at least I was eating!

The big escape from hospital - grateful to be going home.

This was the first kidney removed in April 2013.

This was the second and most recent kidney removed October 2014 - still a fair size.

Monday, 6 October 2014

Progress update - Second Kidney Removal Planned.

Been a long time since I last wrote an update so here's a catch up

We all love Home Dialysis
So home haemo dialysis (HHD) is going really well - the freedom and flexibity it has given back to us is priceless.

Joy is doing a fantastic job as my nurse and I feel so privileged to have such a wonderful wife who is willing to do this for me.

We dialyse 4 or 5 times each week and the increased frequency is paying dividends in me feeling so much stronger and healthier. Joy takes monthly bloods which are then processed by the hospital so we can keep check on the following electolytes (Calcium, Potassium, Phosphate, Haemoglobin, liver and kidney function)  To prepare for my operation this week Joy had to take 7 tubes for pre-op,1 for Transplant updates and 1 post-dialysis to check the effectiveness of the session.

At the start of March I had several cyst ruptures which resulted in lots of pain and blood in my urine for 2 weeks.

On Friday 21st March I had a CT scan to investigate the current status of my remaining kidney - this was good timing given the recent cyst rupture.
The scan results were provided by my consultant the following Monday and are provided below :-

CT Renal with contrast Both :
Non-contrast and 120 seconds images of renal area.
Previous portal venous phase CT  11th May 2013.
Previous left nephrectomy noted.  There are several foci of calcification in right polycystic kidney.
These are all less than 7 mm but in the interval there has been minor increase in the size.
There is no
There are now a few haemorrhagic cysts scattered amongst the numerous simple cysts enlarging right kidney.  Largest haemorrhagic cyst is 2.5 cm. Some of the foci of calcification in the periphery of cysts could be from previous haemorrhage.
There is little normal renal parenchyma. No contrast is seen in the collecting system at 120 seconds.
Associated multicystic liver disease noted.
splenomegaly of 14 cm. Patent splenic and portal vein.
No other abnormality seen.

This is the first time Gloucester Hospital have spotted multicystic liver disease - although from other scans I've seen we already knew my liver has a large number of cysts. At some point it is likely that part of my liver will need to be removed. This report also says my spleen is bigger than it should be - but I don't want a spleenectomy as reduces the bodies natural immune protection system and increases the risk of infection.

My one remaining kidney is getting larger and more painful and on Tuesday this week (7th October 2014) I will be having it removed in Cheltenham hospital.
This will leave me with no kidney function whatsoever. 

The benefits of having the kidney removed are a big reduction in pain in my sides and back and less risk of major infection and significant pain from cyst ruptures.

The disadvantages are that I may feel more tired more quickly and may need to dialyse more frequently.

Prayer Points:
Pray that infections are completely avoided during my stay in hospital.
The operation goes well and my recovery time is quick.
Pray that a new perfectly matched kidney becomes available - soon!

Rob & Joy