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.