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.

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...

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.

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.

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.