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 - http://m.youtube.com/#/watch?v=o6XXNrik5AI
More on HD - http://www.kidneypatientguide.org.uk/HD.php

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 - http://m.youtube.com/watch?v=Lreqo-teOhk
More on PD - http://www.kidneypatientguide.org.uk/pd.php

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