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...
Monday, 21 May 2012
Sunday, 13 May 2012
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.
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.
Tuesday, 8 May 2012
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.
Going to Bristol with Pete (my potential donor) tomorrow to begin his tests.
On Thursday I see my consultant to review my results.
Thursday, 3 May 2012
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.
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.
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!
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.
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.
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.
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