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.

Update

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!

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.

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.

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. (http://en.wikipedia.org/wiki/Desensitization_(medicine))

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.

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.