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.

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.

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.

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 :)

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.

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.

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 - http://www.nlm.nih.gov/medlineplus/ency/article/000666.htm

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.