Sunday 29 April 2012

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!

Wednesday 18 April 2012

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.

Thursday 12 April 2012

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.