We finally got Sandra's results today and it was bad news :'(
Sandra's kidney has blood vessels that would make it too difficult to remove and the hospital rightly have to consider her health as a priority. An operation to remove her kidney could be dangerous for her.
We are obviously gutted and so too is Sandra.
We've put forward five potential donors and none of them have been able to progress to donation.
It's hard to find words to express our disappointment after a whole year of testing it feels like we've not made any progress.
But it begs the question WHY. Why have none of the donors been successful? Why have we made no progress? Why have we gone through this? Why do we believe in a God who has the power to heal in an instant and yet not seen healing?
And if we've made no progress in terms of health what progress have we made in other areas of life as a result of our journey so far?
We have a good understanding of kidney disease. We understand better the impact of a disease on life - and I hope as a result we will be more sympathetic and supportive to people we meet in the future. No one asks to be ill or have the physical, psychological and practical impact on their lives.
In comparative terms kidney disease is not the worst illness to have to deal with - it is treatable with dialysis and (hopefully) transplant.
We are both independent people who don't like to have to 'need' others - so one thing we've learnt is to ask for help, to depend on our friends and family more.
Joy was healed by God a few years ago so she is helping keep us strong and reminds us regularly that God loves us and has a plan for us.
Our faith is challenged some days but as we push through each day we draw strength from God's promises that he will be our provider.
Genesis 22:14 (NLT)
Abraham 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."
The next step is to get onto dialysis and wait for a kidney from the national transplant waiting list which could take a number of years.
Joy is convinced that God wants me to have a better matched kidney. Sandra was only 1 match - Joy believes I will end up with 5/6 matches when I eventually get a kidney. I'm living off Joys faith some days. I am still working through the why questions?
Our Connect group at church are great in their support - they are all praying and fasting this week. It means so much to have their support.
The hospital are now planning a scan of my arm so they can decide on the best place to put a fistula. An operation to put in a fistula will then be scheduled. The fistula takes 6 weeks post operation before it can be used for dialysis.
If I need dialysis before my fistula is ready the hospital will install a temporary access line into my neck.
Dialysis will be three days per week once I begin. It should give me some of my energy back and help me feel better.
Thank you everyone for your love and support - we couldn't get through this without your support.
Rob & Joy
Monday 26 November 2012
Monday 19 November 2012
Sandra's Results - Part 1
Sandra called today to tell us the hospital have told her she has 78% kidney function which is sufficient for her to donate - good news.
The only concern raised was on her CT scan which hasn't been checked by a radiologist. The nephrologist at Bristol wasn't sure whether the kidney would be easy to donate because of complex blood veins.
So we are now waiting until Wednesday for the decision on whether Sandra can donate.
I'm only eating small amounts and Occupational Health last week suggested I stop work altogether because of the tiredness and increasing weakness.
Last week Simon and others at church started eating a biscuit every hour and praying for me. Some people have continued to do this and are probably blaming me for their increased biscuit consumption! Thanks for supporting me in this.
Today the church leaders prayed for me and anointed me with oil. Was prompted to ask them to do this after reading James 5:14-15 which says
'Is any one of you sick? He should call the elders of the church to pray over him and anoint him with oil in the name of the Lord. And the prayer offered in faith will make the sick person well; the Lord will raise him up.'
I might not receive instant healing but to keep going and for a transplant to succeed will need lots of mini miracles.
The renal dietician from the hospital has sent through ideas for snacks which include scones with jam and cream, biscuits with butter on them, crisps and dips, cream cakes, pies and pizza. Joy doesn't think that's a normal diet - but she might try it next week and see if she looses any weight!
Next Update on Wednesday when we hear one way or the other if Sandra is able to donate.
Thanks for your prayers and support.
Rob & Joy
The only concern raised was on her CT scan which hasn't been checked by a radiologist. The nephrologist at Bristol wasn't sure whether the kidney would be easy to donate because of complex blood veins.
So we are now waiting until Wednesday for the decision on whether Sandra can donate.
I'm only eating small amounts and Occupational Health last week suggested I stop work altogether because of the tiredness and increasing weakness.
Last week Simon and others at church started eating a biscuit every hour and praying for me. Some people have continued to do this and are probably blaming me for their increased biscuit consumption! Thanks for supporting me in this.
Today the church leaders prayed for me and anointed me with oil. Was prompted to ask them to do this after reading James 5:14-15 which says
'Is any one of you sick? He should call the elders of the church to pray over him and anoint him with oil in the name of the Lord. And the prayer offered in faith will make the sick person well; the Lord will raise him up.'
I might not receive instant healing but to keep going and for a transplant to succeed will need lots of mini miracles.
The renal dietician from the hospital has sent through ideas for snacks which include scones with jam and cream, biscuits with butter on them, crisps and dips, cream cakes, pies and pizza. Joy doesn't think that's a normal diet - but she might try it next week and see if she looses any weight!
Next Update on Wednesday when we hear one way or the other if Sandra is able to donate.
Thanks for your prayers and support.
Rob & Joy
Monday 12 November 2012
Consultant Appointment
We saw my Gloucester based nephrologist today to discuss progress.
He was (as always) very good, taking the time to listen to our concerns and questions.
We asked about dialysis and he was keen we wait as long as possible leaving it to the very last minute before starting. He wants me to wait until my kidney function is around 7/8% or potassium levels become unmanageable or I see an increase in breathlessness.
My kidney function is just still at 10% but right on the edge of 9%.
He also said providing Sandra's tests are positive and she is able to donate rather than put me on PD or HD he would want me to be dialysed via a temporary neck line. This is exactly what I wanted - so good news.
We asked about physical space for the transplanted kidney which is all disappearing due to my growing polycystic kidneys. He has taken an action to contact the surgeon in Bristol with a view to agreeing either removal in December ahead of potential transplant in Feb 13 or alternatively a double op in Feb with removal and transplant done in one go.
Because my kidneys are so large I'm hardly eating and over the past week have been loosing 1lb a day. He will ask the dietician to call me to discuss protein shakes as a way to keep my weight up so I am strong for the operation.
Sandra is off to Bristol Tuesday & Wednesday this week so we should know by next week if she is ok to donate. If she is we think it will be an operation in Feb next year. If she can't donate then I will probably go onto HD proper dialysis and just wait for a kidney from the national transplant list.
Hoping Sandra can donate - just a week to wait until we know. Just 12 weeks until a potential transplant operation - not that I'm counting!
Ideally I need to keep going without dialysis for another 6 weeks - so please pray for strength to keep going.
I popped out to Morrisons earlier today for a load of bread and bumped into an old friend. I couldn't stop her taking and after 15 minutes I was feeling really ill so I made my excuses. By the time I got home I was totally worn out. Just standing up for 15 minutes wiped me out. It's taken an hour of rest in bed to recover.
So strength to keep going is all I need - we're on the home straight - final few weeks until transplant and health.
He was (as always) very good, taking the time to listen to our concerns and questions.
We asked about dialysis and he was keen we wait as long as possible leaving it to the very last minute before starting. He wants me to wait until my kidney function is around 7/8% or potassium levels become unmanageable or I see an increase in breathlessness.
My kidney function is just still at 10% but right on the edge of 9%.
He also said providing Sandra's tests are positive and she is able to donate rather than put me on PD or HD he would want me to be dialysed via a temporary neck line. This is exactly what I wanted - so good news.
We asked about physical space for the transplanted kidney which is all disappearing due to my growing polycystic kidneys. He has taken an action to contact the surgeon in Bristol with a view to agreeing either removal in December ahead of potential transplant in Feb 13 or alternatively a double op in Feb with removal and transplant done in one go.
Because my kidneys are so large I'm hardly eating and over the past week have been loosing 1lb a day. He will ask the dietician to call me to discuss protein shakes as a way to keep my weight up so I am strong for the operation.
Sandra is off to Bristol Tuesday & Wednesday this week so we should know by next week if she is ok to donate. If she is we think it will be an operation in Feb next year. If she can't donate then I will probably go onto HD proper dialysis and just wait for a kidney from the national transplant list.
Hoping Sandra can donate - just a week to wait until we know. Just 12 weeks until a potential transplant operation - not that I'm counting!
Ideally I need to keep going without dialysis for another 6 weeks - so please pray for strength to keep going.
I popped out to Morrisons earlier today for a load of bread and bumped into an old friend. I couldn't stop her taking and after 15 minutes I was feeling really ill so I made my excuses. By the time I got home I was totally worn out. Just standing up for 15 minutes wiped me out. It's taken an hour of rest in bed to recover.
So strength to keep going is all I need - we're on the home straight - final few weeks until transplant and health.
Saturday 10 November 2012
Symptoms
Lots of people have commented that I look so well / normal and you wouldn't know I was ill.
But I do have lots of symptoms.
Here is list of symptoms :-
1. Tiredness - need lots of sleep and rest to get through the day.
2. Kidney pain - because they are so large they are pushing against my other organs.
3. Back pain - caused by kidneys pressing onto my spine.
4. No appetite - kidneys have cramped my stomach so there is little room for food.
5. Hiatus hernia from acid reflux pushed out of stomach by kidneys.
6. Heartburn and burning in oesophagus from acid reflux.
7. Weight loss from not eating.
8. Really dry mouth most of the time.
9. Metallic taste in mouth most of the time.
10. Sore feet and flabby calves - from fluid retention.
11. Sore fingers and aching arms - again from fluid retention.
12. Difficulty sleeping - unable to get comfortable as kidneys cause pain when lying down.
13. Wake up lots at night for toilet as kidneys work overnight catching up on fluid removal.
14. High blood pressure linked to kidney disease.
15. Unable to stand up for long periods as kidney pain increases when stood up.
16. Difficulty focusing on anything for very long - means I can't even use the time off work for reading books.
17. Feel really cold most of the time - hence I often wear two jumpers!
18. Very itchy skin especially at night.
19. Hiccups - caused by reflux and it usually takes ages to go!
If you think I look like there is nothing wrong with me then I'm doing a good job. Despite the symptoms I am doing my best to stay positive as much as possible - we have God on our side.
I see my Gloucester consultant this week and expect to set a date for beginning dialysis.
Keep praying.
But I do have lots of symptoms.
Here is list of symptoms :-
1. Tiredness - need lots of sleep and rest to get through the day.
2. Kidney pain - because they are so large they are pushing against my other organs.
3. Back pain - caused by kidneys pressing onto my spine.
4. No appetite - kidneys have cramped my stomach so there is little room for food.
5. Hiatus hernia from acid reflux pushed out of stomach by kidneys.
6. Heartburn and burning in oesophagus from acid reflux.
7. Weight loss from not eating.
8. Really dry mouth most of the time.
9. Metallic taste in mouth most of the time.
10. Sore feet and flabby calves - from fluid retention.
11. Sore fingers and aching arms - again from fluid retention.
12. Difficulty sleeping - unable to get comfortable as kidneys cause pain when lying down.
13. Wake up lots at night for toilet as kidneys work overnight catching up on fluid removal.
14. High blood pressure linked to kidney disease.
15. Unable to stand up for long periods as kidney pain increases when stood up.
16. Difficulty focusing on anything for very long - means I can't even use the time off work for reading books.
17. Feel really cold most of the time - hence I often wear two jumpers!
18. Very itchy skin especially at night.
19. Hiccups - caused by reflux and it usually takes ages to go!
If you think I look like there is nothing wrong with me then I'm doing a good job. Despite the symptoms I am doing my best to stay positive as much as possible - we have God on our side.
I see my Gloucester consultant this week and expect to set a date for beginning dialysis.
Keep praying.
Tuesday 6 November 2012
Appointments Scheduled
Amazingly Bristol hospital have managed to schedule three appointments next week for Sandra's tests. These include a GFR kidney function test, a CT scan and an appointment with a nephrologist.
Perhaps my complaint has helped because its unusual to get appointments that are so soon - normally appointments are at least a month away when they get scheduled.
Got updated kidney results from Mondays blood test - these results put me on 10% with a creatinine level of 561 and Urea has increased by 30% to 19.2. Dialysis is too close for comfort.
Tonight the UK parliament discussed PKD and a health minister (Anna Soubry) agreed to meet up with representatives from the PKD Charity which is excellent news and may result in some funding for research. The current UK government investment into PKD research is £0 which is astounding when its thought to affect up to 60,000 people in the UK.
A comment by health minister Anna Soubry was that 'PKD patients can require special consideration for dialysis and transplant treatment.'
I've sent this comment through to NHS Gloucestershire in the hope it helps them push Bristol to schedule my operation.
Watch the discussion here if you're interested...
http://news.bbc.co.uk/democracylive/hi/house_of_commons/newsid_9766000/9766683.stm
Transplant before dialysis - still needs a miracle - but it might just happen.
Keep watching this space - we should have Sandra's results within the next fortnight.
Keep praying.
Perhaps my complaint has helped because its unusual to get appointments that are so soon - normally appointments are at least a month away when they get scheduled.
Got updated kidney results from Mondays blood test - these results put me on 10% with a creatinine level of 561 and Urea has increased by 30% to 19.2. Dialysis is too close for comfort.
Tonight the UK parliament discussed PKD and a health minister (Anna Soubry) agreed to meet up with representatives from the PKD Charity which is excellent news and may result in some funding for research. The current UK government investment into PKD research is £0 which is astounding when its thought to affect up to 60,000 people in the UK.
A comment by health minister Anna Soubry was that 'PKD patients can require special consideration for dialysis and transplant treatment.'
I've sent this comment through to NHS Gloucestershire in the hope it helps them push Bristol to schedule my operation.
Watch the discussion here if you're interested...
http://news.bbc.co.uk/democracylive/hi/house_of_commons/newsid_9766000/9766683.stm
Transplant before dialysis - still needs a miracle - but it might just happen.
Keep watching this space - we should have Sandra's results within the next fortnight.
Keep praying.
Friday 2 November 2012
Progress - or lack of...
Had a bit of a bad week - Joy is unable to donate as her kidney function is 68% and she needed at least 80% to be able to donate. A bit gutted - another 3+ months of tests wasted.
Bristol have now agreed to revert back to Sandra my original donor - who has done half her tests already in January this year. Even so they are saying it will take until at least January before she will be able to donate. I asked if there was anyway they could speed things up - but no - the process is the process.
Sandra has been saving for a cruise for two years and its booked for April next year. As she will need 3 months recovery the latest she could have the op and still go on holiday is December.
But Bristol say no chance of operating in December - they just don't work that fast. Although they do manage quick operations with deceased donors whose kidneys they transplant within 48 hours.
So Bristol have said to plan for dialysis and a transplant in May 2013 after Sandra is back from holiday.
MAY 2013!!! Oh dear.
I've now been referred to Bristol for transplantation for nearly a whole year - I was originally expecting to be all sorted by April this year.
Got a bit fed up today with Bristols attitude so wrote to their complaints department, also contacted my consultant in Gloucester, my GP, my MP, the Prime Ministers office and NHS Gloucestershire's commissioning arm to complain. Might have over reacted but I'm desperate to make something happen.
If Bristol transplant me I could avoid cost of dialysis for the NHS, reduce the risk of me getting infections and have a better quality of life.
NHS Commissioning have already responded and agreed to investigate as too has my MP who suggested Jenny Dalimore could make some calls on my behalf. :) Hopefully some pressure will help Bristol have a more patient centric approach.
It's a real shame I never got referred to Oxford who complete many transplants within 3 months.
My kidney function has remained stable for the past 4 weeks at 11%. I have another blood test booked for next Monday.
Still believing for a transplant before dialysis - but time is shorter than ever - hence me taking some drastic action to try and create a catalyst for action.
Keep praying.
God is still in control.
Bristol have now agreed to revert back to Sandra my original donor - who has done half her tests already in January this year. Even so they are saying it will take until at least January before she will be able to donate. I asked if there was anyway they could speed things up - but no - the process is the process.
Sandra has been saving for a cruise for two years and its booked for April next year. As she will need 3 months recovery the latest she could have the op and still go on holiday is December.
But Bristol say no chance of operating in December - they just don't work that fast. Although they do manage quick operations with deceased donors whose kidneys they transplant within 48 hours.
So Bristol have said to plan for dialysis and a transplant in May 2013 after Sandra is back from holiday.
MAY 2013!!! Oh dear.
I've now been referred to Bristol for transplantation for nearly a whole year - I was originally expecting to be all sorted by April this year.
Got a bit fed up today with Bristols attitude so wrote to their complaints department, also contacted my consultant in Gloucester, my GP, my MP, the Prime Ministers office and NHS Gloucestershire's commissioning arm to complain. Might have over reacted but I'm desperate to make something happen.
If Bristol transplant me I could avoid cost of dialysis for the NHS, reduce the risk of me getting infections and have a better quality of life.
NHS Commissioning have already responded and agreed to investigate as too has my MP who suggested Jenny Dalimore could make some calls on my behalf. :) Hopefully some pressure will help Bristol have a more patient centric approach.
It's a real shame I never got referred to Oxford who complete many transplants within 3 months.
My kidney function has remained stable for the past 4 weeks at 11%. I have another blood test booked for next Monday.
Still believing for a transplant before dialysis - but time is shorter than ever - hence me taking some drastic action to try and create a catalyst for action.
Keep praying.
God is still in control.
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