Sunday, 23 December 2012

Books read in 2012

My target I shared in a Facebook post at the start of this year was that I was aiming to read 6 books this year to stretch and develop me. I also said if I could even manage one per month that would give a great total of 12.

Well I've surprised myself by managing to read 12 books which is brilliant especially as I couldn't read very much for 4 months of the year because my kidney disease has impacted my ability to concentrate. I also hit my target of reading through all 21 books of The New Testament.

Need a bigger target for 2013 so am aiming for 20 books + 39 books of The Old Testament.

Now I'm on dialysis I feel a lot better and more able to concentrate which is excellent news.

Below is the list of books I've read this year. All great reads (except for the last two you have to be a techie!)

Why not aim to read one of them yourself this year?

The book that has helped me become more effective with my time is Getting Things Done.
The book that had the biggest emotional impact on me was Tuesdays with Morrie.
The book that I believe will have the most potential to impact my life in the future is 21 Irrefutable Laws of Leadership.

1. IT: How Churches and Leaders Can Get It and Keep It
By Craig Groeschel
Amazon Link

2. Getting Things Done: How to Achieve Stress-free Productivity
By David Allen
Amazon Link

3. 21 Irrefutable Laws of Leadership
By John C. Maxwell
Amazon Link

4. Courageous Leadership
By Bill Hybels
Amazon Link

5. Amplified Leadership
By Dan Reiland
Amazon Link

6. Tuesdays with Morrie: An Old Man, a Young Man, and Life's Greatest Lesson
By Mitch Albom
Amazon Link

7. StrengthsFinder 2.0
By Tom Rath
Amazon Link

8. Please Understand Me II
By David Kiersey
Amazon Link

9. TA Today: A New Introduction to Transactional Analysis.
By Vann Joines, Ian Stewart
Amazon Link

10. The Me I Want To Be
By John Ortberg
Amazon Link

11. Asterisk: The Definitive Guide
By Leif Madsen. Jim Van Meggelen, Russell Bryant
Amazon Link

12. Beginning iPhone 3 Development
By David Mark, Jeff LaMarche
Amazon Link

Already on the list for 2013

1. Winning with People
By John Maxwell
Amazon Link

2. Adventures in Missing the Point: How the Culture-controlled Church Neutered the Gospel
By Tony Campolo, Brian D. McLaren
Amazon Link

Monday, 17 December 2012

Dialysis Week 2

Well week one of dialysis went very well. It was something I guess I'd feared it and wanted to avoid needing it - but actually it all seemed very simple and well organised.

I am now committed to dialyse three times per week until I get a new kidney from the national transplant waiting list or God works a miracle and my kidneys spring back into life!

I had thought dialysis would be something I had to endure and keep my eyes looking toward a future hope when I got a new kidney and could start living life normally again. It's felt a bit like that this year as we've waited for tests on people who offered to donate. I feel like I've spent 2012 waiting for the right result - life's been on hold - and I never got the result I was expecting.

But I've realised this thinking is flawed. If I choose to limit my life until I am dialysis free I will not achieve all that I could. I have made the decision that rather than looking at freedom from dialysis as my destination - I will accept today as my destination. Dialysis will be a part of my life but it will not define what I am capable of. I intend to enjoy the journey over the coming weeks.

So I have 4 hours on.a Monday, Wednesday and Friday where I have to be connected up to a machine. This gives me more time than ever to read books, catch up on email, relax and watch a bit of TV. Bet you wish you had all this free time!

My consultant thinks it could take up to 6 weeks before I start feeling the full benefit of dialysis. Currently my haemoglobin levels are very low. This is being addressed with weekly EPO injections (, fortnightly Iron infusions and daily vitamin D supplements to help my calcium levels improve.

Currently I dialyse via a neck line, but on the 27th December 2012 I have a fistula operation booked. ( The fistula will take 4-6 weeks to mature and once ready my neck line will be removed and I will dialyse via the fistula. Eventually after about 6 months it is possible to have a Haemodialysis machine installed at home to avoid the hospital visits. We may consider this in due course,

At the end of January 2013 we plan to ask about having surgery to remove one of my very large polycystic kidneys. If possible it would be good to get this done ASAP as it would reduce pain and enable me to eat bigger meals. But if there is still residual function the hospital are likely to be reluctant to take one out until its doing absolutely nothing useful.

Thanks for all your support its been brilliant knowing so many people care about us and are standing with us in prayer.


Rob & Joy

Just a Thought...
Don't put life on hold and wait for circumstances to be perfect - they never will be. Make today your destination not some future time when you think everything will be perfect. Take that step of faith now and do something new. Live life to the full now. We all have issues in our lives - not letting them define us is a challenge I encourage you to take up with me today.

Tuesday, 11 December 2012

First dialysis

I saw a consultant for my fistula operation on Monday and have an ultra sound booked for Thursday lunchtime. Hopefully I will have a fistula operation on 27th Dec.

Today I had a central venous catheter installed - not an especially pleasant procedure. Then I had an X-ray and my first 2 hours of dialysis. It took all day. I start dialysis properly tomorrow. The only available dialysis slot was Mon Wed Fri 4-9pm that should be ok especially when I'm back at work which is good news.

I don't feel much different after today but hopefully after Friday's dialysis I will start feeling better.

I've got a free hospital parking permit which is a bonus as parking costs a fortune at the hospital.

All in all not a bad day really.

Amazing that our tiny kidneys that God created in us can do a 10x better job that all this man made equipment. We are living miracles, thank you God

Monday, 10 December 2012

Dialysis Begins

I saw a surgeon today about a fistula operation. I have an ultrasound scheduled for Thursday to map the best fistula location on my arm.
The surgeon has an available slot to conduct the operation on the day after Boxing Day - 27th December. It will take about six weeks for the fistula to mature and become usable.

Whilst at the hospital we saw my consultant and explained my increasing symptoms which now include sore feet, ankles and hands due to the increased level of toxins in my bloodstream and some breathlessness when climbing stairs etc. My kidney function has slightly improved its likely this is due to the fact I am eating less. My Haemoglobin and White Blood Count have all dropped and I am now slightly anaemic. In view of this he agreed it's time to start me on dialysis via a line in my neck.

This is scheduled for tomorrow - Tuesday 11th Dec at 11am. They will insert the neck line and give me two hours dialysis. I will then attend one of Gloucester's two dialysis centres 3 times per week. We still need to work out how this will fit into our life as its a significant change in routine.

Once my fistula is usable the neck line will be removed.

Thanks for everyone's support and prayers so far. This next stage in my kidney failure is rather scary and daunting as we adjust to the change this will bring to our family life, so we would both appreciate prayer for protection over us and your prayers that all goes to plan and I avoid infection whilst I have the neck line in as these are prone to infection which can be serious.

Still believing for a transplant - in God's timing.

Rob & Joy

Friday, 7 December 2012

Kidney Function Update

Was thinking I would begin dialysis Monday or Tuesday next week.

I had a blood test at the start of this week and still haven't got all the results but I phoned the hospital to ask for my creatinine level.

Last blood test I had creatinine of 593 and 9% kidney function.

We were expecting it to have increased and my kidney function reduced but as of this week my creatinine is 517 which is a kidney function of about 11% so an increase of 2% - amazing :)

Not sure if its down to the fact I'm eating less and therefore there is less for my kidneys to process but it means no dialysis for me this side of Christmas :)

One very Happy Household here in Bittern Avenue ;) ;) ;)

Monday, 26 November 2012

Sandra's Results - Part 2

We finally got Sandra's results today and it was bad news :'(

Sandra's kidney has blood vessels that would make it too difficult to remove and the hospital rightly have to consider her health as a priority. An operation to remove her kidney could be dangerous for her.

We are obviously gutted and so too is Sandra.

We've put forward five potential donors and none of them have been able to progress to donation.

It's hard to find words to express our disappointment after a whole year of testing it feels like we've not made any progress.

But it begs the question WHY. Why have none of the donors been successful? Why have we made no progress? Why have we gone through this? Why do we believe in a God who has the power to heal in an instant and yet not seen healing?

And if we've made no progress in terms of health what progress have we made in other areas of life as a result of our journey so far?

We have a good understanding of kidney disease. We understand better the impact of a disease on life - and I hope as a result we will be more sympathetic and supportive to people we meet in the future. No one asks to be ill or have the physical, psychological and practical impact on their lives.

In comparative terms kidney disease is not the worst illness to have to deal with - it is treatable with dialysis and (hopefully) transplant.

We are both independent people who don't like to have to 'need' others - so one thing we've learnt is to ask for help, to depend on our friends and family more.

Joy was healed by God a few years ago so she is helping keep us strong and reminds us regularly that God loves us and has a plan for us.

Our faith is challenged some days but as we push through each day we draw strength from God's promises that he will be our provider.

Genesis 22:14 (NLT)
Abraham named the place Yahweh-Yireh (which means "the Lord will provide"). To this day, people still use that name as a proverb: "On the mountain of the Lord it will be provided."

The next step is to get onto dialysis and wait for a kidney from the national transplant waiting list which could take a number of years.

Joy is convinced that God wants me to have a better matched kidney. Sandra was only 1 match - Joy believes I will end up with 5/6 matches when I eventually get a kidney. I'm living off Joys faith some days. I am still working through the why questions?

Our Connect group at church are great in their support - they are all praying and fasting this week. It means so much to have their support.

The hospital are now planning a scan of my arm so they can decide on the best place to put a fistula. An operation to put in a fistula will then be scheduled. The fistula takes 6 weeks post operation before it can be used for dialysis.

If I need dialysis before my fistula is ready the hospital will install a temporary access line into my neck.

Dialysis will be three days per week once I begin. It should give me some of my energy back and help me feel better.

Thank you everyone for your love and support - we couldn't get through this without your support.

Rob & Joy

Monday, 19 November 2012

Sandra's Results - Part 1

Sandra called today to tell us the hospital have told her she has 78% kidney function which is sufficient for her to donate - good news.

The only concern raised was on her CT scan which hasn't been checked by a radiologist. The nephrologist at Bristol wasn't sure whether the kidney would be easy to donate because of complex blood veins.

So we are now waiting until Wednesday for the decision on whether Sandra can donate.

I'm only eating small amounts and Occupational Health last week suggested I stop work altogether because of the tiredness and increasing weakness.

Last week Simon and others at church started eating a biscuit every hour and praying for me. Some people have continued to do this and are probably blaming me for their increased biscuit consumption! Thanks for supporting me in this.

Today the church leaders prayed for me and anointed me with oil. Was prompted to ask them to do this after reading James 5:14-15 which says
'Is any one of you sick? He should call the elders of the church to pray over him and anoint him with oil in the name of the Lord. And the prayer offered in faith will make the sick person well; the Lord will raise him up.'

I might not receive instant healing but to keep going and for a transplant to succeed will need lots of mini miracles.

The renal dietician from the hospital has sent through ideas for snacks which include scones with jam and cream, biscuits with butter on them, crisps and dips, cream cakes, pies and pizza. Joy doesn't think that's a normal diet - but she might try it next week and see if she looses any weight!

Next Update on Wednesday when we hear one way or the other if Sandra is able to donate.

Thanks for your prayers and support.

Rob & Joy

Monday, 12 November 2012

Consultant Appointment

We saw my Gloucester based nephrologist today to discuss progress.

He was (as always) very good, taking the time to listen to our concerns and questions.

We asked about dialysis and he was keen we wait as long as possible leaving it to the very last minute before starting. He wants me to wait until my kidney function is around 7/8% or potassium levels become unmanageable or I see an increase in breathlessness.

My kidney function is just still at 10% but right on the edge of 9%.

He also said providing Sandra's tests are positive and she is able to donate rather than put me on PD or HD he would want me to be dialysed via a temporary neck line. This is exactly what I wanted - so good news.

We asked about physical space for the transplanted kidney which is all disappearing due to my growing polycystic kidneys. He has taken an action to contact the surgeon in Bristol with a view to agreeing either removal in December ahead of potential transplant in Feb 13 or alternatively a double op in Feb with removal and transplant done in one go.

Because my kidneys are so large I'm hardly eating and over the past week have been loosing 1lb a day. He will ask the dietician to call me to discuss protein shakes as a way to keep my weight up so I am strong for the operation.

Sandra is off to Bristol Tuesday & Wednesday this week so we should know by next week if she is ok to donate. If she is we think it will be an operation in Feb next year. If she can't donate then I will probably go onto HD proper dialysis and just wait for a kidney from the national transplant list.

Hoping Sandra can donate - just a week to wait until we know. Just 12 weeks until a potential transplant operation - not that I'm counting!

Ideally I need to keep going without dialysis for another 6 weeks - so please pray for strength to keep going.

I popped out to Morrisons earlier today for a load of bread and bumped into an old friend. I couldn't stop her taking and after 15 minutes I was feeling really ill so I made my excuses. By the time I got home I was totally worn out. Just standing up for 15 minutes wiped me out. It's taken an hour of rest in bed to recover.

So strength to keep going is all I need - we're on the home straight - final few weeks until transplant and health.

Saturday, 10 November 2012


Lots of people have commented that I look so well / normal and you wouldn't know I was ill.

But I do have lots of symptoms.

Here is list of symptoms :-
1. Tiredness - need lots of sleep and rest to get through the day.
2. Kidney pain - because they are so large they are pushing against my other organs.
3. Back pain - caused by kidneys pressing onto my spine.
4. No appetite - kidneys have cramped my stomach so there is little room for food.
5. Hiatus hernia from acid reflux pushed out of stomach by kidneys.
6. Heartburn and burning in oesophagus from acid reflux.
7. Weight loss from not eating.
8. Really dry mouth most of the time.
9. Metallic taste in mouth most of the time.
10. Sore feet and flabby calves - from fluid retention.
11. Sore fingers and aching arms - again from fluid retention.
12. Difficulty sleeping - unable to get comfortable as kidneys cause pain when lying down.
13. Wake up lots at night for toilet as kidneys work overnight catching up on fluid removal.
14. High blood pressure linked to kidney disease.
15. Unable to stand up for long periods as kidney pain increases when stood up.
16. Difficulty focusing on anything for very long - means I can't even use the time off work for reading books.
17. Feel really cold most of the time - hence I often wear two jumpers!
18. Very itchy skin especially at night.
19. Hiccups - caused by reflux and it usually takes ages to go!

If you think I look like there is nothing wrong with me then I'm doing a good job. Despite the symptoms I am doing my best to stay positive as much as possible - we have God on our side.

I see my Gloucester consultant this week and expect to set a date for beginning dialysis.

Keep praying.

Tuesday, 6 November 2012

Latest Graphs

Here are the latest kidney function and creatinine graphs.

Appointments Scheduled

Amazingly Bristol hospital have managed to schedule three appointments next week for Sandra's tests. These include a GFR kidney function test, a CT scan and an appointment with a nephrologist.

Perhaps my complaint has helped because its unusual to get appointments that are so soon - normally appointments are at least a month away when they get scheduled.

Got updated kidney results from Mondays blood test - these results put me on 10% with a creatinine level of 561 and Urea has increased by 30% to 19.2. Dialysis is too close for comfort.

Tonight the UK parliament discussed PKD and a health minister (Anna Soubry) agreed to meet up with representatives from the PKD Charity which is excellent news and may result in some funding for research. The current UK government investment into PKD research is £0 which is astounding when its thought to affect up to 60,000 people in the UK.

A comment by health minister Anna Soubry was that 'PKD patients can require special consideration for dialysis and transplant treatment.'
I've sent this comment through to NHS Gloucestershire in the hope it helps them push Bristol to schedule my operation.

Watch the discussion here if you're interested...

Transplant before dialysis - still needs a miracle - but it might just happen.
Keep watching this space - we should have Sandra's results within the next fortnight.

Keep praying.

Friday, 2 November 2012

Progress - or lack of...

Had a bit of a bad week - Joy is unable to donate as her kidney function is 68% and she needed at least 80% to be able to donate. A bit gutted - another 3+ months of tests wasted.

Bristol have now agreed to revert back to Sandra my original donor - who has done half her tests already in January this year. Even so they are saying it will take until at least January before she will be able to donate. I asked if there was anyway they could speed things up - but no - the process is the process.

Sandra has been saving for a cruise for two years and its booked for April next year. As she will need 3 months recovery the latest she could have the op and still go on holiday is December.

But Bristol say no chance of operating in December - they just don't work that fast. Although they do manage quick operations with deceased donors whose kidneys they transplant within 48 hours.

So Bristol have said to plan for dialysis and a transplant in May 2013 after Sandra is back from holiday.

MAY 2013!!! Oh dear.

I've now been referred to Bristol for transplantation for nearly a whole year - I was originally expecting to be all sorted by April this year.

Got a bit fed up today with Bristols attitude so wrote to their complaints department, also contacted my consultant in Gloucester, my GP, my MP, the Prime Ministers office and NHS Gloucestershire's commissioning arm to complain. Might have over reacted but I'm desperate to make something happen.

If Bristol transplant me I could avoid cost of dialysis for the NHS, reduce the risk of me getting infections and have a better quality of life.

NHS Commissioning have already responded and agreed to investigate as too has my MP who suggested Jenny Dalimore could make some calls on my behalf. :) Hopefully some pressure will help Bristol have a more patient centric approach.

It's a real shame I never got referred to Oxford who complete many transplants within 3 months.

My kidney function has remained stable for the past 4 weeks at 11%. I have another blood test booked for next Monday.

Still believing for a transplant before dialysis - but time is shorter than ever - hence me taking some drastic action to try and create a catalyst for action.

Keep praying.
God is still in control.

Thursday, 27 September 2012

Further 2% drop in 10 days

Had more blood tests this week and found that in 10 days my kidney function has dropped from 12 - 10%.

PD or HD?

Saw my Gloucester consultant today - he was apologetic that Bristol had not yet completed my transplant.

He is going to contact Bristol and see if he can speed things up. In the mean time he has asked for a decision by tomorrow morning on whether I want to go on PD or HD dialysis.

HD - Haemodialysis
This form of dialysis requires a fistula to be created on my arm for access for use during dialysis. A fistula joins an artery and vein to create a hard blood muscle on the arm providing fast blood flow for dialysis. A fistula takes 6-8 weeks to form after an operation which is done under general anaesthetic. This should have been done well before now so it may be too late for this option and a short term work around could be a direct line into my neck.
This dialysis would need to be done at the hospital for about 6 hours three times per week.
HD Explained -
More on HD -

PD - Peritoneal Dialysis
This uses your peritoneum to help dialyse - a small tube is inserted into the stomach via an operation. After a few weeks this can be used.
Basically 2 litres of fluid is pumped into my tummy and it sits there for about eight hours and is then pumped out with all the bad stuff the kidneys used to remove. This can be done overnight but has higher infection risks and I still have to retain 2 litres of fluid in me 24x7 - not comfortable with my massive polycystic kidneys already cramping my body. But because this form of dialysis is done 7 days a week from home it means slightly less fluid and diet restrictions compared to HD.
PD Explained -
More on PD -

Currently thinking if we go PD we have a few more weeks for a potential miracle transplant ahead of dialysis.

It's a tough decision.

It reminds me how amazing our bodies are to do all this without machines for most people.

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

Smile every time I go to wee at the moment!

Keep praying.
Still not given up on getting a transplant before dialysis - but time is getting short.

Rob & Joy x

Sunday, 16 September 2012

Saturday, 15 September 2012

Joys Tests

We got Joys cross match tests back yesterday - a few days earlier than expected.

Joy was 1 tissue match out of 6 the same as her sister Sandra. Joys antibodies are very weak meaning I would need little desensitisation.

The hospital were clear that taking a single match could make it difficult in the future if i needed a new kidney as I would need 5 out of 6 matched next time around.

They suggested the paired matching scheme but they have only found 3 matches using this method over the past 6 years.

Otherwise they suggested taking Joy to the next level of testing so that they could compare her with Sandra her sister - hopefully making it clear which would be the best option.

We are believing in faith that either Joy or her sister will be able to donate - but this is a huge leap of faith and will need a future miracle to either:-
1. Keep the kidney working for the rest of my life
2. Improve technology enabling me to accept a wider range of kidneys in the future
3. Miraculously heal me.

We will move forward positively and if we are not taking the right steps believe God will redirect our steps and provide an alternate solution.

We were encouraged by reading Genesis 22 today where God provided an alternate sacrifice for Abraham. God can do this for us too if He needs to.

Genesis 22:13-14 (NLT)
13[Then Abraham looked up and saw a ram caught by its horns in a thicket. So he took the ram and sacrificed it as a burnt offering in place of his son.] 14Abraham named the place Yahweh-Yireh (which means “the Lord will provide”). To this day, people still use that name as a proverb: “On the mountain of the Lord it will be provided.”

I got my latest blood test results today and my kidney function has dropped 3 points to 12% - this is a fairly big deterioration since my last test 5 weeks ago. My Creatinine has increased from 378 up to 468.

Joy has her second round of tests on 2nd October.

We now need the hospital to perform the miracle of getting all the tests done and the transplant before I need dialysis. Please continue to pray for us - we really appreciate your support.

Rob & Joy

Tuesday, 4 September 2012

Waiting for Joys Test Results

Two weeks ago Joy (my wife) was tested for kidney donation.

It takes 4 weeks for the cross match results to become available - so on 19th September we'll call the hospital for the outcome.

We are still believing for a transplant before dialysis - although Pete's unexpected results were a shock - we're staying faithful.

It's been over 8 months since referral for transplant. My kidney function continues to decline so to get the transplant before needing dialysis is going to require a miracle.

So please pray for :-
1. Great cross match result for Joy.
2. Rapid further testing to get Joy to the point of being able to donate.
3. An early transplant operation date and space on the desensitisation programme to fit ahead of the operation.
4. My kidneys to keep me going until the operation.
5. For operations to go well, for rapid healing and avoidance of infections.
6. For brother Pete (who can't donate due to having the same kidney disease as me) to remain in good health.

Thanks for your ongoing support.

Rob & Joy

Monday, 20 August 2012

Prayer & Fasting Update

Thank You everyone for your prayers today. We've felt very loved and supported and at peace with our current situation.

Encouraged by these verses today :-

1 Corinthians 1:7-9 (The Message)

Just think - you don't need a thing, you've got it all! All God's gifts are right in front of you as you wait expectantly for our Master Jesus to arrive on the scene for the Finale. And not only that, but God himself is right alongside to keep you steady and on track until things are all wrapped up by Jesus. God, who got you started in this spiritual adventure, shares with us the life of his Son and our Master Jesus. He will never give up on you. Never forget that.

Sunday, 19 August 2012

Prayer & Fasting

Many people at One Church will be supporting us by fasting and praying tomorrow.

See below excerpt from Chas & Ann :

On Monday 20th August we are committing to fast and pray for Rob, and would like to invite you to join us in prayer and fasting on that day.
We firmly believe in the power of prayer and take God at His word where it says in James 5:15 that “the prayer offered in faith will restore the one who is sick”, and in Mathew 18:19 “Again I say to you, that if two of you agree on earth about anything that they may ask, it shall be done for them by My Father who is in heaven.”
Our God is able and His grace is sufficient.

Monday, 13 August 2012

Unexpected Results

Hospital informed us today that Pete will be unable to proceed with donation because they believe he has some small cysts in his kidneys.

It's over 8 months since we got referred to Bristol and well over 14 weeks of tests specifically on Pete. So it's a major disappointment to find out that even with very high (98%) kidney function he can't give one away.

Even more devastating for Pete to think its possible he may have the same disease as me and could have passed it to his children.

About 50% of people who offer to donate don't get through the tests successfully.

I'm obviously gutted. Last week I was only a month away from beginning the daunting desensitisation treatment ahead of a transplant operation. Now that's not going ahead.

It's a rollercoaster of emotions and I have felt very low over the past weekend - even before getting these results.

Last week was tough enough but this week it's just got even tougher.

Thankfully my confidence is not in how or when or a hospital test or a surgeon it's all placed in Jesus. 100% all in - that's the only option.

Keep Praying.

Monday, 6 August 2012

Transplant Update

We saw the surgeon today and he gave us the good news that it was likely Pete would be able to donate a kidney once the CT Scan had been properly reviewed by a radiologist.

This is great because we got confirmation of the two specific things we needed which were for Pete's kidney function to be high and his kidneys to be of equal size.

Petes kidney function is 98% which is brilliant - mine is between 14-16% at the moment. When he donates a kidney his kidney function will reduce by half as he will be operating on a single kidney.

There are still lots of further steps in the process but the news today is positive - although it would have been really good to know if the CT Scan was ok - perhaps I still need to develop more patience.

We will hear if Petes scan is clear next Monday 13th August. They want to ensure there are limited veins in his kidney as this simplifies surgery to disconnect and transplant the kidney. Over the past few months they have aborted several transplants because the donor had too many veins.
They are also checking there are no stones or cysts so they can be sure they will leave Pete with a good kidney and will transplant me a good kidney to make the effort worthwhile.

Provided Petes CT scan is ok then we will get a joint appointment with the desensitisation consultant - he will explain the process in more detail and make a decision if I am suitable for desensitisation. I need desens treatment because Pete and I are different blood types. This treatment is similar to dialysis and requires around six weeks, 3 days per week of treatment to remove antibodies from my blood so I don't reject Petes foreign blood in his kidney that gets transplanted.

Because desens is fairly new to Bristol they are very careful about who can have it. It significantly reduces my immune system which when added to the imunosuppressant and anti rejection drugs post transplant means my ability to fight infection will be near zero. So they've said if I get any more kidney infections they may choose to not allow me the treatment because of the high risk. (I had an infection in June this year)

The surgeon felt my kidneys and said he thinks they have got quite a lot bigger since January but he thinks there will be sufficient space for the transplanted kidney. If space becomes a problem they would proactively remove a kidney and put me onto dialysis for a while before transplant - but this would significantly delay my transplant and evidence shows people who have never had dialysis do better and last longer on a transplant.

Bristol think they may be able to arrange desens treatment in September with an op possible in October.

So here's a list of things to pray for :-
1. Thank God that Pete has very good kidney function and equal sized kidneys which means he can donate.
2. For perfect CT Scan results - few veins making operation simpler and no cysts or stones in either kidney.
3. For me to stay infection free and for super natural ability to defend infection whilst antibodies are low.
4. That the desens consultant agrees to provide the treatment I need.
5. That my kidneys don't grow any bigger and I have room for the transplant.
6. That we get dates quickly for appointments and the start of treatment.

I turned 40 in July - this op marks the start of my next 40 years which I know are going to be brilliant.

Thanks to you all for your ongoing support and care - we really appreciate you all.

Friday, 3 August 2012

Petes Tests Complete

Pete had his tests on Wednesday this week. All went well even if Pete did end up with over 7 needle marks on his arm from half hourly blood tests!

He seemed to like being centre of attention as he does a lot of charity work to help run Gloucester St Johns ambulance so he enjoyed being the patient instead of the nurse for once!

Next appointment is this coming Monday 6th August 2012 at Bristol to discuss the results of Petes tests with the surgeon.

Praying they agree to use Pete as a donor and get on with scheduling the transplant operation.

Thursday, 26 July 2012

Next Appointment

After Petes appointment next Wednesday we have a joint appointment with the surgeon on the following Monday 6th Aug.

Hoping for a Go decision,

Extra day off work today because of sharp kidney pain. Hope it's not another infection.

Not long till new kidney I hope :)

Wednesday, 11 July 2012

Food is boring

So I've been back at work a few hours a week for the past two weeks. I get tired quickly so rest most of the time.

It's a bit annoying to have lots of spare time on my hands but not be able to use it effectively because I just can't concentrate on anything for very long.

Another side effect of being in stage 5 kidney failure is a lack of appetite - so I'm eating a lot less because I just don't feel like it - but I'm drinking lots of Lucozade in the mornings not just for energy but also to try and push up my calorie intake.

Sometimes I wonder if I'll ever get my operation scheduled - seems there is one delay or excuse after another. From next April kidney transplants will be targeted by the government to get hospitals to move from referral to surgery within 18 weeks. I've been waiting 30 weeks so far.

When I get tired of waiting sometimes I feel my faith in God is moving down a level. Come on God! But all I need to remember is Jesus loves me - the bible says :-

And God is able to make all grace abound to you, so that in all things at all times, having all that you need, you will abound in every good work. (2 Corinthians 9:8)

Staying faithful
I'll soon have my strength back and a story to tell. Keep Praying.

Sunday, 1 July 2012

Update : Back to Work

Got the all clear to go back to work Monday - but only for two hours per day and only for three days this week.

Blood levels still not great due to poor kidney performance - this means my iron, calcium, potassium, phosphates and creatinine are all over the place causing tiredness.

Was frustrated I couldn't be more involved the the One Church Community Weekend but I only last for about 90 minutes before being exhausted. Constantly feels like I'm jet lagged. Had a morning and afternoon snooze today to keep me going.

Tuesday, 26 June 2012

Fallible Me

Got very ill a week and a half ago. I still wanted to go into work but Joybelle wouldn't let me. Was really quite annoyed I had to miss going into work.

I had pain in my kidneys, high temperature, very high blood pressure and breathing was hard work compared to normal.
When the doctor arrived she sent me straight into hospital where I stayed for two days.

On arrival at casualty the triage nurse did my pulse - i had a resting pulse of 250 - that got me into a bed within a minute which beats the usual 4 hour wait in casualty!
I spent several hours in a resus bed with a dedicated doctor and then got moved to the majors bed bay. Eventually I got moved into a ward where I stayed a couple of nights.

I had SEPSIS which is a severe internal infection in my kidneys -

After lots of antibiotic I'm all sorted again.
One of the side effects of infection is further damage to my already damaged kidneys. Over the week my kidney function dropped from 17% down to 14% which puts me into kidney failure.

Pete my brother has tests at the start of August to see if he can donate me a kidney - if he can I just need the hospital to get on and plan my operation before I need dialysis.

My next appointment with my consultant is 19th July so should get an update on kidney function then to see how it's doing.

Thanks for all your ongoing support and prayers.

Monday, 21 May 2012

Blood Pressure oops

My consultant told me to stop taking blood pressure tablets at my recent appointment - even though my blood pressure was high (138/88). I raised my concerns but he said not to worry they never went by blood pressure readings in the clinic.

Unsurprisingly I saw a sudden blood pressure rise by Tuesday last week (160/98). So I hardly slept early part of last week.

After we got hold of the consultant on Thursday he apologised and told me to start taking the tablets again!

Fun and games...

Sunday, 13 May 2012

Progress Update

Blood test results show that over the last 4 weeks my kidney function has remained constant at 17% which is brilliant.

When I saw my consultant on Thursday I expected him to be quite happy with me - but he was concerned about other results.

Kidney function is estimated by measuring creatinine a waste product that is removed by the kidneys.
Whilst my creatinine stayed constant other measurements did change, for instance my potassium levels increased, calcium fell, phosphates fell and iron fell. So kidney % is not the only thing that matters I need all these measures to be on target too.

In response to these result my consultant has taken me off one of my blood pressure tablets. This will increase the flow of blood through my kidneys and force them to work harder. This should improve levels of the various chemicals being measured. The downside to this is it will cause more damage to my kidneys and result in them deteriorating more quickly. But given they are working so poorly now and we are planning a transplant my consultant wanted to move out of 'protect my kidneys' to 'get the best performance possible' mode.
The other downside is that I might see a rise in blood pressure. In the clinic it was measured at 137/87 and I need to measure it regularly at home and ask for some different blood pressure tablets it it rises above 130/80 which it already was in the clinic!

I discussed the fact my kidneys were so big and that I couldn't eat very much. My consultant doesn't think they will remove one of my failing kidneys until 3 months after the transplant operation. He said my polycystic kidneys would continue to grow cysts and get bigger - but the new kidney wont grow cysts. So small meals for a while to come and possibly a second operation. My biggest concern is about cysts rupturing as people who have large polycystic kidneys often get this happen and end up in hospital on morphine for several weeks.

On Wednesday I visited the transplant coordinators in Bristol with my brother Pete who is being tested to see if he can donate. The surgeon is happy to use Pete's kidney - so now it's down to whether Pete's health and kidney function are good enough to allow him to donate to me.
They explained to me that because I wasn't the same blood type as Pete I would need to undergo desensitisation treatment for 1 month prior to the transplant. This involves having a line put into my neck and blood taken out washed of antibodies and then put back into me - a process that takes around 4 hours each time it's done. By the time it's been done three times a week for a month they hope my antibody level will be so low that my body won't recognise Pete's kidney is not a blood type match.
This process does have a downside - my platelets will be very low after desensitisation and so my blood clotting function will decrease - this does add some complications for the operation and will affect how quickly my body heals. Amazing what they can do in medicine these days. A few years ago taking a kidney from a non blood matching donor wasn't possible.

Bristol are still quoting 4-6 months until transplant. I'm hoping it will be sooner. I wanted to be off work during the Olympics!!!

Next appointment is a kidney transplant recipients information day in Bristol next Tuesday 6-9pm. I usually go to bed by 7pm most nights so it gonna be a late night for me next Tuesday!

Thanks to everyone for your ongoing support.

Tuesday, 8 May 2012

Blood Tests

Several blood tests today. Now waiting for the results.
Going to Bristol with Pete (my potential donor) tomorrow to begin his tests.

On Thursday I see my consultant to review my results.

Thursday, 3 May 2012

Polycystic Kidneys

Here is a photo of a polycystic kidney and a normal one.
Both my kidneys look like the one on the left. Getting constant pain due to the size of my kidneys now. Hoping they remove one to give me some space when they do the transplant.

Sunday, 29 April 2012


Feeling much better since my increase in kidney function.
Without this increase I could b gettin close to needing dialysis - so ths is a gift from God to keep me from needing dialysis.

Have had some pain because of the size of my kidneys so taking regular pain killers so that I can sleep. On Saturday night I had some acute pain in my right kidney - think this was a small cyst popping - but was ok a few minutes later.

Hospital have said they want to progress with testing my brother Pete and use him to donate providing all tests go to plan. First appointment is a week on Wednesday.

I have blood tests this week to check my Hepatitus inoculations were successful.
Then next week I see my consultant so will have tests to check my kidney function.
Also have an evening support group in Bristol in a three weeks time for Kidney recipients.

My work continue to be supportive so everything is going as well as possible.

Saw my boss at work this week and he said he knew of two people who'd had kidney disease and by my state he said they were very ill and certainly not still working. I must have someone watching over me :)

Thanks for all your prayers. They are working!

Wednesday, 18 April 2012

Kidney function improves

The consultant said when I stopped taking Bendroflumethiazide (water tablets) I would see an improvement in my kidney function by a few %.

This week I got blood test results back that showed a two percent improvement in kidney function from 15% up to 17%.

This is great news - I am loosing about 1% function per month so this has effectively extended the life of my kidneys by two months.

Just need the hospital to get a move on and plan my transplant before I drop too far under 15% function.

Still hoping for a op by summer this year.

Thursday, 12 April 2012

Test Result Finally Arrive

Finally got news of test results today.

Last week they called to say they were discounting Pete because his blood type was too different to mine for desensitisation to be successful - so we told Pete he got to keep both his Kidney's!

Today we got cross match results back for both Pete and Andy as follows :-

Andy - blood type match and 2 out of 6 tissue type matches
Pete - no blood type match but 3 out of 6 tissue type matches

Sandra was previously a blood type match with 1 out of 6 tissue type matches

The hospital now will reconsider their decision to take Pete off my list of potential donors because he is the best tissue match. A better tissue match would make it easier in the future if I needed a second kidney but the plan is for this transplant to last the rest of my life - so 30+ years.

The hospital have said I am really lucky to have so many potential donors - most people don't even have 1 and end up on dialysis.
They've also said they will review my case next week and will make the decision who to proceed with - so it looks like the decision it out of our hands now.

Sandra is really keen to donate and is furthest along the pre op tests so could transplant quickest.
Pete has the best cross match tests but isnt a blood type match so I would need to undergo at least two weeks of desensitisation in order for him to donate - this involves pumping my blood through a machine to alter its structure and chemical properties - which will leave me feeling pretty I'll.
Andy has two matches and wouldn't need desensitisation, but he's under 40 so can't be officially confirmed disease free until he's over 40 so he will need extra tests to try and be 95% sure he is ok to donate.

Both Pete and Andy have young families which makes the impact of the Op more significant because they won't be able to help look after their kids for 6 weeks after the op.

No easy choices but trusting God the right decision will be made - perhaps its a good thing the hospital want to make the decision.

Feeling tired most of the time - often sleeping at lunch time if not in work - someone will probably find me asleep at my work desk sometime soon!

Kidney function at 15% so officially have kidney failure. Believing I will get a transplant before needing dialysis. Some people go on dialysis at 15% others last until 8% but I'm loosing 1% per month so I need a transplant ASAP.

Lots of people praying - hence why I'm doing so well - long may it continue!

I'm still smiling and learning patience.

Thanks everyone for your support.

Sunday, 25 March 2012

Waiting for Test Results

Had cross natch tests on Tuesday this week - they say it may take up to four weeks to get results.

Both my brothers Pete and Andy were tested - so now the wait until results come through. No doubt Joy will chase them on the phone and hopefully we'll get results within a few weeks.

Andy is a blood type match so if he has good cross match results he would be the recommended donor by the hospital. Pete isn't a blood type match so to take his kidney I would need to undergo desensitisation treatment. (

Have stopped leading prayer and I.T. at church as I try to reduce my commitments. At times this has left me feeling a bit lost with no role. I'm working from home at least one day per week which is helping with the tiredness.

Often in bed early and if I get the chance for a sleep in the day I take it! Today I managed church and then went to sleep at lunchtime totally exhausted - what a wimp!

Have felt low and emotional at times this week but have lots of positive people supporting me.

The brilliant Ann Paul suggested I read Psalm 121 this week which was perfectly timed and very encouraging.

I look up to the mountains; does my strength come from mountains?
No, my strength comes from God, who made heaven, and earth, and mountains.
He won't let you stumble, your Guardian God won't fall asleep. Not on your life!
Israel's Guardian will never doze or sleep.
God's your Guardian, right at your side to protect you - Shielding you from sunstroke, sheltering you from moonstroke.
God guards you from every evil, he guards your very life.
He guards you when you leave and when you return, he guards you now, he guards you always.
(Psalm 121:1-8, The Message Translation)

Pray for strength physically, emotionally and spiritually and for rapid results from tests so that we can make a decision on how best to proceed.

Wednesday, 7 March 2012

Ultrasounds Complete

My two brothers have had their ultrasound tests to ensure they are free from PKD. These test results need to be examined by my renal consultant before we get referred for cross match tests.
Hoping this will be quick.

Saw consultant last week on Thursday and reviewed blood test results from a blood test done on Tuesday. My kidney function is at 16% - so sill falling at 1% per month. He agreed to write to the transplant unit and ask them to try and organise a transplant within the next 3 months.

My calcium levels are dropping so I'm now on calcium tablets - this will help reduce aching. I've been taken off water tablets because they are no longer effective at my kidney function level - apparently coming off these should give me a slight improvement in overall kidney function.

I'm getting regular kidney and back pain because of the size of my kidneys which are around 4x bigger than normal - but doctor has given me an ample supply of pain killers.

Plan now is to get my brothers cross match testing underway ASAP so that we can make a choice on which donor kidney to use - tough choice - incredible to have three potential options.

Praying for speedy action from the hospitals involved and wisdom to make the right choices.

Wednesday, 29 February 2012

Estimated GFR (kidney function %)

To calculate kidney function there are a large number of methods and equations.
Estimated GFR (eGFR) using Modification of Diet in Renal Disease (MDRD) formula is the most widely used in the UK by the NHS.

This method estimates kidney function using four variables: serum creatinine, age, race, and gender. This equation has been validated in patients with chronic kidney disease; however it is likely to be inaccurate in healthy patients with over 60% kidney function.

Creatinine is a break-down product of creatine phosphate in muscle, and is usually produced at a fairly constant rate by the body (depending on muscle mass).
Creatinine is chiefly filtered out of the blood by the kidneys. If the filtering of the kidney is deficient, creatinine blood levels rise. Therefore, creatinine levels in blood are used to calculate kidney function.

The formula

186 x Serum Creatinine (in mg/DL) ^ -1.154 x Age ^ -0.203 X [1.212 if black] x [0.742 if female]

^ = to the power of

So for me today it looks like this :-

My Creatinine level is 371 micromol/L so need to divide it by 88.4 to get mg/L

186 x (371 /88.4) ^ -1.154 x 39 ^ -0.203 = 16.8%

Hospital is reporting me at 16% function so either they round down or their calculation is more complex and more accurate.

Kidney disease stages
0) Normal kidney function – above 90%
1) CKD1 – above 90% function but with evidence of kidney damage
2) CKD2 (Mild) – 60% to 89% function with evidence of kidney damage
3) CKD3 (Moderate) – 30% to 59% function
4) CKD4 (Severe) – 15% to 29% function
5) CKD5 Kidney failure - less than 15% function
Some people add "D" to patients on dialysis so CKD5 becomes CKD5D although many patients in CKD5 are not yet on dialysis.
Some people add a "T" to patients who have had a transplant regardless of stage.

More Info :-

Tuesday, 28 February 2012

Blood Test Result

Had blood test Monday this week which puts me at 16% kidney function as expected.

Consultant on Thursday afternoon to discuss it.

Sunday, 26 February 2012

Kidney Function Graph

Here is my current Kidney Function Graph.

Latest Kidney Function Report

I logged into the patient results system on Tuesday this week to find that Bristol had uploaded results from 17th Jan.
They reported my kidney function as 17% a 2% drop since my last test result from 22nd November last year. This means I'm still loosing 1% function per month.

The consultant in Gloucester wanted me transplanted by 15% so I'm now only 2 months away from this. Not sure the system is currently making things happen fast enough.

Pete has an ultrasound scheduled for Friday this week, Andy has one the following week.

Hopefully we can get cross match tests scheduled in Bristol ASAP.

Last Tuesday I had my last Hepatitis B immunisation jab. (it is a course of 3 injections) I get tested at the end of April to check its worked. If not I can have one more course of injections. Apparently you have to have Hep B before transplantation because it's not possible to have it once I'm on anti rejection and immune suppressant drugs. Given after transplant I'll be on these drugs for life I needed to have it as it would never be an option in the future and I I may need it in future jobs, travel, etc.

This Thursday I see my renal consultant locally for a check up - hoping to encourage him to get things speeded up so that I get a transplant before I need dialysis. Apparently the transplant has better and longer success rates if you have it before ever having needed dialysis.

Also if I end up on dialysis I'll need minor operations to set me up and will then need to stay on dialysis for a good 6 months before they will consider transplant. Dialysis is an inconvenience I'd like to avoid.

Still feeling very tired but my boss is being very supportive and understanding so couldn't have a better employer for this present time in my life.

Am trying to drop commitments outside of work to allow me more time for rest.
No longer involved in running prayer at church but keeping busy with Church IT systems as I'm keen to get them all in tip top condition so that everything runs smoothly whilst I'm off.

Praying for a positive week in terms of rest/energy and pain and a good response from my consultant to get things moving along with a bit more haste this week.

Sunday, 19 February 2012

Blood Types

Pete has had his blood group result back and is an AB+ so not a blood match but could still donate if I undergo desensitisation treatment.

Both Pete and Andy have ultra sound tests booked first week in March.

Next week I have my next kidney function test.

So Sandra and Andy are blood group matches with me and Pete and Joybelle are both AB+

Tough week with increased pain and tiredness - aim to be in bed by 8pm most nights with Tuesdays and Sundays being my 6pm early to bed nights!

Looking toward to being totally healed and full of energy again soon.

Need hospitals to get on with tests do that I get a transplant ahead of needing dialysis.

Used to think I was positive and full of faith - now feeling weak emotional at times. Frustrated that I am not well like I should be.

Still believing it won't be long till I'm all fixed up.

Keep praying!

Monday, 13 February 2012


Pete and Andy also need to have an ultrasound before cross matching can be done to ensure thy don't have PKD. Previously the hospital said we couldn't consider them for donation because there was a high risk they had the disease.
But after talking to the surgeon we are fairly certain I am the first in the family with the mutant gene as my parents have been screened and told they do not have polycystic kidneys. This makes me a mutant!

Apparently we all have 5 or 6 mutant genes but often they have no impact on our life's.

The PKD gene cannot skip a generation. If you have there is a 50/50 chance each of you kids will have it. If you don't have it then it stops in your generational line at that point. Hence the surgeon saying if my parents are clear there it is unlikely my brothers will have it.

After ultrasound there are some other tests that can be done to give a high degree of certainty that Pete and Andy are PKD free. Genetic testing can be done but presently only 60% of tests find the gene so is not guaranteed and it takes months because thy have to look through the entire Chromozone 16 manually which is as much as 200 telephone directories. Thankfully they don't have to look through all 23 chromozones as this would be like 4000 telephone directories! Only some hospitals do genetic matching but there are other tests which can be done.

I guess I am a little concerned for my children as here is a 50/50 chance they could inherit PKD from me.

Lots of kidney pain today - gonna start on the cocodamol and get off to work.

Sunday, 12 February 2012

More Blood Tests

After a week of disappointment and thinking about what next both of my brothers have offered to be tested to see if they are a blood match with me - if they are we'll arrange some for more cross match tests to see how many tissue matches they are.

Pete (my older brother) had a blood test to find out his blood type last week but they couldn't read the label written by the person who took his blood so wouldn't process it - he's going to give more blood again this week.

Andy (my younger brother) will have a test too this week - he is fairly certain of his blood type already as its on his blood donor card. He's an A+ same as me - if his test confirms this it would be good.

I've explained the process to them both and sent them these links to kidney transplant information leaflets that detail all the steps involved.

Sandra has continued with tests and spent 4 hours in hospital having tests last week - all of which seemed to go to plan. Currently Sandra is still favourite and the best option I have (until I know my brothers results) - and I'm ever so grateful for her willingness to donate to me.

I have an appointment with my Nephrologist locally at the start of March so will have blood tests in two weeks time to monitor my kidney function. The transplant surgeon said it was unlikely my kidneys were deteriorating as fast as we thought - so this test will give us the actual current position. Last time I was tested i was at 19% function.

It's been a difficult few weeks and I've had various feeling - some of upset and frustration that Sandra was not more tissue matches - felt let down by God (is this wrong?), have felt down because of the increased tiredness and am having more pain around my kidneys that sometimes makes it difficult to sleep - I guess tiredness also makes you see things out of perspective or feel more emotional. But it's fantastic news my brothers are willing to be tested for donation - a better tissue match will give me more chance in the future of having another kidney if needed.

Still believe I am in Gods hands.
In the bible it says that in all things God works for the good of those who love him, who have been called according to his purpose (Romans 8:28, NIV)
I believe he will heal me - he has it all sorted. Maybe I'm too impatient!
It would be amazing to be miraculously healed and not need an operation - but maybe God wants to heal me through a transplant.

One great bit of news is that occupational health were very supportive of me working from home on Wednesdays and have written to my boss saying he needs to make reasonable adjustments to my work to support me through my illness. So I'm working from home every Wednesday for now and may increase this depending how tired I feel. This is really good because I'm in bed by 6pm several nights per week just to try and recover my energy levels.

Next Appointment is 1st March.
Hope to have blood results for both by brothers blood types by this appointment.

I'm really grateful to have so many friends around me supporting me and encouraging me. Thanks all for your love and support. My wife is just amazing - not sure how I could have ever got through this without her by my side - regardless of my dodgy kidneys my life is brilliant because of my fantastic wife.

Monday, 30 January 2012

Cross Match Results

Good meeting today with surgeon.
I'm now on the national deceased transplant register.

They've checked out my kidneys and believe there is space on the left for my transplanted kidney. On my right my kidney is too big so there is no available space.

They've also said I am fit and well enough to transplant so another tick in the box.

The only slightly disappointing thing is that I only got 1 out of 6 matches in the cross match testing. 1 is still good enough to proceed but is less than we'd expected. We now need to make a decision. Do we :-
1. Proceed with Sandra's donation - current favourite option
2. Go onto dialysis and wait for a better match from the national organ donation system. Least favourite option. Could be a six year wait.
3. Go on the paired exchange scheme to see if someone wants to swap a better matching kidney - could be a long wait.
4. Go on desensitisation programme and see if Joy is better match - still early days for this technology - probably not an option.
5. Check if blood relations are better match now that genetic screening is an option?

So lots to still think about.
Staying positive - this will all work out.

Sunday, 29 January 2012

Status Update

Status Update

Cross match tests on 17th January were good. They took about 10 lots of blood from me and Sandra. Sandra also had an ECG. Living transplant coordinator was brilliant and her best friend does the same job in the hospital that Sandra will use for all her tests and monitoring after donation. This is really good news because sometimes communication between hospitals is not great - this will ensure it is good. Joybelle's mum came up on the train with Sandra and Brenda and Tim met us at the hospital - great to have so much support.

Transplantation pathology is complex. Here are a few sites that helped a little - but it's still confusing.

Basically there are 6 antibodies that are critical in transplantation.
The crossmatch test will see if my six match Sandra's six. The more that do the better matched and therefore better chance of the kidney lasting longer. Also any that don't match will mean in the future they absolutely have to matc as you can only have a non matching antibody for each of the six once in your life. So the more that don't math the more difficult it is if I ever need a second transplant.

Results for hospital transplants are as follows
Living Donor : 96% after 1 Yr, 94% after 5 Yrs, 90% after 10 Yrs
Desensitised : 90 after 1 Yr, 88% after 5 Yrs, 85% after 10 Yrs
Deceased Donor : 92% after 1 Yr, 86% after 5 Yrs, 65% after 10 Yrs

Even with a perfectly matched deceased donor a living donor with no matches has longer life.
It is also possible for a donor with non matching blood type to donate through using a process to desensitise my body to the blood type difference.

Asked at work if I could work from home on Wednesdays as I'm getting tired by Thursday and this would help me maintain energy levels. Boss has referred me to occupational health - yet another appointment to add to my growing list!

On Friday 27th had heart cardiogram which is basically an ultrasound to ensure my heart looks ok. Feedback was that it looked fine. Likely to get an appointment for a heart stress test next.

On Saturday 28th went to Leciester for the weekend and attended a PKD charity patient information day.
Lots of people there and gained some useful information such as:-
1. Liver unlikely to fail although it will get cysts - if it gets to big cysts can be drained or part of liver taken away
2. Good research is taking place and likely to find a cure soon to slow down cyst growth - lots of clinical trials and studies underway - hope this will be I place for Joy and Jake if they find they have inherited the disease.
3. Got a better understanding of the genetics of the disease - Joy and Jake have a 50/50 chance of having it. :( it is possible that I am the first in the family to have the disease as this happens to 5% of people who have it. If Joy and Jake don't have it then it stops there - it can't skip a generation.
4. Orange Juice is high in potassium so I should avoid drink it if possible. Kidneys regulate potassium and phosphates so should avoid foods high in these such as Bananas etc.

Good to meet others with PKD and people who'd had transplants or donated kidneys and they all appeared to be fit and well.

On Friday night in Leciester we watched a movie called the descendants about a terminally I'll mother - supposed to be humorous but quite depressing and made me wonder what would happen to Joy and Jake if I didn't make it through the operation. What physiological impact would it have on their futures - but gonna stay positive. Have God on my side.

In the bible it says be strong and courageous because God is with you (Joshua 1:9) believing this this week.

Appointments :
30/01/12 : Surgeon
30/01/12 : deceased transplant coordinator
31/01/12 : occupational health

Sandra has several appointments locally for tests - these tests have been booked ahead of knowing the cross match tests which is really good.

Still believing for 6 out of 6 matches in the cross match tests. Lots of people praying.

Status Update

Kidney Function : 19%
Weight : 13' 10"
Symptoms : swollen ankles and feet, difficult to stand and walk at times, hiatus hernia and restricted stomach space due to size of kidneys and liver, sore at times and unable to lie on sides in bed, some back pain, tired by 6pm most nights and if I'm not out will try and be in bed as early as possible. Love sleep!

Don't really like thinking about operation and future. I don't do needles of blood and guts! Have to turn away from TV when Joybelle and Beck are watching Holby City!
Just want operation to be over and get life back to 'normal' what ever that will be.

Amazing that Sandra is Willing to give a kidney - if she didn't I would definitely end up on dialysis whilst waiting for a donor from the national transplant system. Sandra hardly knows me and there is no reason why I deserve her kidney - amazing - like the free gift of life given by God.
God is my provider and sustainer Psalm 23:1 I will not be in want.

Appointments :
17/01/12 - living transplant cross match tests with Sandra
27/01/12 - cardiogram
28/01/12 - PKD patient information day in Leciester
30/01/12 - meeting with surgeon who will do my operation
30/01/12 - deceased transplant team
31/01/12 - meeting with occupational health to discuss home working 1 day per week.

First Post

Planning to blog some stuff here about my journey with Polycystic Kidney Disease (PKD).
Also writing this stuff into a paper journal.

To start at the beginning....

I had a routine medical at work in around 2002 which highlighted very high Blood Pressure (BP) - it was 220/129!

Doctors spent 4 years trying to keep my BP under control and eventually in around 2007 (I think can't remember exactly) sent me for an ultrasound to see if my kidneys were ok. They found lots of cysts on my kidneys and referred me to the renal team at Gloucestershire Royal Hosptial (GRH). I had six monthly check ups to monitor my kidney function. All the time the Nephrologist's said to live life normally as I had at leas 10 years before anything changed.

In October 2010 I married Joybelle - she has made my life complete - I've never been happier. We went together to a renal check up before we got married and the Nephrologist still said it would be 8 years based on my current kidney decline. Me and Joybelle looked at the figures and thought it would be sooner. After we got married and went back to the Nephrologist for a routine appointment he agreed that it was looking more like two years until End Stage Renal Failure (ESRF) - great news - not!

When Joybelle's family heard amazingly her sister Sandra offered to donate a kidney. This was incredible as I hardly knew her and yet she was willing to give me a fantastic gift which would give me life free from dialysis.
If I needed dialysis I would be tied up 3 days a week at least and limited in where I cold travel and the hours I cold work having a massive impact our lives.

This blog will chart the progress of the kidney transplant operation. It is primarily written for Sandra's children so they can get some insight into my journey. I will be forever thankful to Sandra their mum for giving me the chance to continue my life dialysis free.