NHS Blood and Transplant are running a competition to produce a short film promoting organ donation. The winning film will be used during National Transplant Week July 8th-13th. Our Becki produced a film for the competition and did so well her film got short listed with 7 others. We hear the result early in July.
Becki's video is on you tube www.youtube.com/watch?v=aCQLyFPHNVY
You can see the other entries at this website www.youtube.com/transplantweek
But don't watch the other entries too many times - we want Becki's to get as many views as possible to give her the best chance of winning!!!
The shortlist press release is here http://www.organdonation.nhs.uk/
Once the winners are announced it will be on these websites
www.transplantweek.co.uk
www.organdonation.nhs.uk
Well done to our clever Becki - we're really proud of her.
Tuesday, 18 June 2013
Wednesday, 5 June 2013
Update
I ended up with another infection just after the last post on 9th May and was in hospital for over 2 weeks.
The hospital did numerous blood cultures but none definitively showed infection.
They tried to send me home on two occasions by moving me off IV antibiotics and giving me tablets. Both times within 24 hours my temperature soared to over 40C and they had to put me back onto IV antibiotics.
Whilst in hospital I had another CT Scan, chest X-ray, back X-ray and they tried to give me an MRI scan. Luckily the radiography asked the right questions and found out I had metal clips after my kidney removal operation. He said if they'd gone ahead with the scan the magnets could have pulled my clips out of place and caused an internal bleed. The MRI did not go ahead!
I eventually got out of hospital on Saturday 24th May with a combination of two antibiotic tablets and have been ok since.
My operation scar is healing well but is still painful if I stand up for too long. My energy levels are really low. I could sleep all day quite easily but I usually manage to get up by 10am.
We managed to go to an Israel Houghton concert on Sunday evening this week in Birmingham which was really good - nice to get out and do something normal.
I've been waiting over 2 months for a call from the home dialysis team.
We hope to begin dialysing at home as soon as they can get it organised.
I've managed to find out that there is currently a stand off between the hospital and the home dialysis company because of changes to how payments are made. This has resulted in the home dialysis service being temporarily suspended for new patients. I've written a formal letter to the service commissioner to ask them to try and break the deadlock.
I now have a wheelchair which I use if going a long way on foot. I get tired quickly and have very bad back ache. I'm still on morphine patches to help reduce the back pain. I can manage shopping in a supermarket because I am able to lean on the trolley - but for walks and trips into town we will use the wheelchair until my pain reduces. It's been nice to go out for walks in the sunshine - in the wheelchair!
My haemoglobin level today is now 93 the highest it's been since the operation - but it really needs to be 120 so that I'm not anaemic and have more energy. But at least its increased from after the operation when it was 70 and they wanted to give a blood transfusion.
I've been out of hospital for 12 days now. But tonight on dialysis my temperature has been high, I have kidney pain, am shivering and my infection markers are high. (C-Reactive Protein [CRP] is 34 when it should be under 3)
It was looking like I was in for another hospital stay and haven't even managed 2 weeks at home. We got lots and lots of people to pray and by the end of dialysis my pain had gone and temperature was back to normal so they let me go home. Amazing Miracle! Hoping all stays normal overnight as we had planned to go away for a few days over the weekend - really don't want to mess up the break we've so been looking forward to.
If these infections keep happening I think they will have to get on and remove my remaining kidney.
Thanks for your support and prayers.
Please continue to pray
1. Haemoglobin levels rise
2. Energy levels rise
3. Current possible infection comes to nothing overnight
4. That the issue with home dialysis is resolved quickly
5. That I get offered a matching kidney from the national organ donor system :)
Rob & Joy
The hospital did numerous blood cultures but none definitively showed infection.
They tried to send me home on two occasions by moving me off IV antibiotics and giving me tablets. Both times within 24 hours my temperature soared to over 40C and they had to put me back onto IV antibiotics.
Whilst in hospital I had another CT Scan, chest X-ray, back X-ray and they tried to give me an MRI scan. Luckily the radiography asked the right questions and found out I had metal clips after my kidney removal operation. He said if they'd gone ahead with the scan the magnets could have pulled my clips out of place and caused an internal bleed. The MRI did not go ahead!
I eventually got out of hospital on Saturday 24th May with a combination of two antibiotic tablets and have been ok since.
My operation scar is healing well but is still painful if I stand up for too long. My energy levels are really low. I could sleep all day quite easily but I usually manage to get up by 10am.
We managed to go to an Israel Houghton concert on Sunday evening this week in Birmingham which was really good - nice to get out and do something normal.
I've been waiting over 2 months for a call from the home dialysis team.
We hope to begin dialysing at home as soon as they can get it organised.
I've managed to find out that there is currently a stand off between the hospital and the home dialysis company because of changes to how payments are made. This has resulted in the home dialysis service being temporarily suspended for new patients. I've written a formal letter to the service commissioner to ask them to try and break the deadlock.
I now have a wheelchair which I use if going a long way on foot. I get tired quickly and have very bad back ache. I'm still on morphine patches to help reduce the back pain. I can manage shopping in a supermarket because I am able to lean on the trolley - but for walks and trips into town we will use the wheelchair until my pain reduces. It's been nice to go out for walks in the sunshine - in the wheelchair!
My haemoglobin level today is now 93 the highest it's been since the operation - but it really needs to be 120 so that I'm not anaemic and have more energy. But at least its increased from after the operation when it was 70 and they wanted to give a blood transfusion.
I've been out of hospital for 12 days now. But tonight on dialysis my temperature has been high, I have kidney pain, am shivering and my infection markers are high. (C-Reactive Protein [CRP] is 34 when it should be under 3)
It was looking like I was in for another hospital stay and haven't even managed 2 weeks at home. We got lots and lots of people to pray and by the end of dialysis my pain had gone and temperature was back to normal so they let me go home. Amazing Miracle! Hoping all stays normal overnight as we had planned to go away for a few days over the weekend - really don't want to mess up the break we've so been looking forward to.
If these infections keep happening I think they will have to get on and remove my remaining kidney.
Thanks for your support and prayers.
Please continue to pray
1. Haemoglobin levels rise
2. Energy levels rise
3. Current possible infection comes to nothing overnight
4. That the issue with home dialysis is resolved quickly
5. That I get offered a matching kidney from the national organ donor system :)
Rob & Joy
Wednesday, 8 May 2013
2 Weeks Post Op
All going really well since my operation. I'm up and about and almost pain free. I've been getting out and about in a wheel chair - Joybelle pushed me all the way to the Ridge & Furrow yesterday evening in the sunshine for a meal and a pint.
The one issue since the op is my haemoglobin levels which have still not returned to normal. It's currently 7 when it should be closer to 12. This has the effect of making me feel very anaemic and tired and is the result of significant blood loss during the op.
During the week after my operation my daughter Joy was able to stay at my house which meant she was free to visit and facetime me every day. She also stayed for the first few days when I got out of the hospital which made it a really memorable and special time.
Last week I had my back assessed because I was still getting some pain. The consultant arranged an xray which was quite ammusing as you could see all my metal clips - there are a bunch inside me where the surgeon cut my kidney away as well as the 34 down my front holding my wound together. I'm hoping to get a copy of the xray and will post it here when I get it.
From the xray the consultant could see that between lumber 4-5 my disc has significantly eroded, he thinks this has been caused by my lack of mobility and having to sleep on my back over the last two years due to my enlarged kidneys. No repair is possible so I just need to adjust my lifestyle to live with this, but he has suggested a course of 'core strengthening physio' once i have recovered from my op. But since having my kidney out the back pain has significantly reduced although I might have episodes of more severe pain on occasion in the future.
I'm currently on dialysis at GRH but later on after dialysis I have an appointment up on the renal ward to have some of the staples in my tummy removed.
Thank you for all your ongoing prayers, the following were all answered
That swelling and bruising went down quickly, pain manageable and Blood pressure back to normal.
Please continue to pray for:-
1. Haemoglobin goes back to normal quickly avoiding the need for a transfusion
2. Energy levels increase.
3. That physio course can commence soon.
4. That back pain does not increase and that the disc improves against medical opinion.
Love Rob & Joy
The one issue since the op is my haemoglobin levels which have still not returned to normal. It's currently 7 when it should be closer to 12. This has the effect of making me feel very anaemic and tired and is the result of significant blood loss during the op.
During the week after my operation my daughter Joy was able to stay at my house which meant she was free to visit and facetime me every day. She also stayed for the first few days when I got out of the hospital which made it a really memorable and special time.
Last week I had my back assessed because I was still getting some pain. The consultant arranged an xray which was quite ammusing as you could see all my metal clips - there are a bunch inside me where the surgeon cut my kidney away as well as the 34 down my front holding my wound together. I'm hoping to get a copy of the xray and will post it here when I get it.
From the xray the consultant could see that between lumber 4-5 my disc has significantly eroded, he thinks this has been caused by my lack of mobility and having to sleep on my back over the last two years due to my enlarged kidneys. No repair is possible so I just need to adjust my lifestyle to live with this, but he has suggested a course of 'core strengthening physio' once i have recovered from my op. But since having my kidney out the back pain has significantly reduced although I might have episodes of more severe pain on occasion in the future.
I'm currently on dialysis at GRH but later on after dialysis I have an appointment up on the renal ward to have some of the staples in my tummy removed.
Thank you for all your ongoing prayers, the following were all answered
That swelling and bruising went down quickly, pain manageable and Blood pressure back to normal.
Please continue to pray for:-
1. Haemoglobin goes back to normal quickly avoiding the need for a transfusion
2. Energy levels increase.
3. That physio course can commence soon.
4. That back pain does not increase and that the disc improves against medical opinion.
Love Rob & Joy
Thursday, 25 April 2013
Operation Complete
I had my operation yesterday afternoon. Sadly there were complications removing the left kidney because blood vessels were difficult to get to because they were buried under large cysts. This resulted in the left kidney taking 3 hours to remove and at this point the anaesthetist brought a halt to the operation as she felt a further 3 hours for the right kidney would be too long for me and the surgeon to cope with. So its possible I will need another operation in the future to remove my right kidney.
But without the left kidney I should have significant pain relief and hopefully most of my back pain will be gone.
I stayed in recovery overnight after the operation as my blood pressure was very very low averaging 80/35. At one point they thought I might have a bleed and considered returning me to the operating theatre - but a surgeon was called out and decided there was no bleed.
My haemoglobin levels fell significantly after the operation due to blood loss and they ordered 2 pouches of blood to transfuse into me - thankfully I woke up as they were setting this up and managed to bring a stop to this. The nurse looking after me was unaware that a transfusion could limit my chance of getting a kidney in the future. Hopefully over the next few weeks my blood levels will return to normal without any blood transfusions.
The surgeon took a photo of my left kidney that he removed. It's here for your delight! Notice the ruler which is 15cms long and he said the kidney was actually bigger than in the photo when it had blood flow in it. I'm glad that's not in me any more and am keen to get rid of my right one if its anything like this one.
I had an epidural for my pain relief so am relatively pain free. This gets removed tomorrow so I hope alternate pain relieve is sufficient. Here's a few things to pray for :-
1. Thanks for the success in removing my left kidney
2. That swelling and bruising goes down quickly
3. Effective pain management
4. That Blood Pressure and Haemoglobin goes back to normal quickly
Thanks all for making this possible so quickly
And for your ongoing support and prayers.
Rob & Joybelle
But without the left kidney I should have significant pain relief and hopefully most of my back pain will be gone.
I stayed in recovery overnight after the operation as my blood pressure was very very low averaging 80/35. At one point they thought I might have a bleed and considered returning me to the operating theatre - but a surgeon was called out and decided there was no bleed.
My haemoglobin levels fell significantly after the operation due to blood loss and they ordered 2 pouches of blood to transfuse into me - thankfully I woke up as they were setting this up and managed to bring a stop to this. The nurse looking after me was unaware that a transfusion could limit my chance of getting a kidney in the future. Hopefully over the next few weeks my blood levels will return to normal without any blood transfusions.
The surgeon took a photo of my left kidney that he removed. It's here for your delight! Notice the ruler which is 15cms long and he said the kidney was actually bigger than in the photo when it had blood flow in it. I'm glad that's not in me any more and am keen to get rid of my right one if its anything like this one.
I had an epidural for my pain relief so am relatively pain free. This gets removed tomorrow so I hope alternate pain relieve is sufficient. Here's a few things to pray for :-
1. Thanks for the success in removing my left kidney
2. That swelling and bruising goes down quickly
3. Effective pain management
4. That Blood Pressure and Haemoglobin goes back to normal quickly
Thanks all for making this possible so quickly
And for your ongoing support and prayers.
Rob & Joybelle
Tuesday, 23 April 2013
Operation Tomorrow
Lots has happened since my last blog.
On 3rd April I got admitted to hospital overnight because of severe backpain. I was in hospital for 5 days until I eventually got strong enough morphine patches to control the pain.
By the second day in hospital Becki's fundraising site had hit the target of £6k - which meant we could start planning the operation. Amazing.
If you've not seen Becki's video here is the link.
http://www.youtube.com/watch?v=jPVA0rgR8HA
Since seeing this video the surgeon who will be removing my kidney's has asked if Becki would be willing to help produce some patient information videos.
Since being discharged from hospital we have managed my pain using the patches which I change every 3 days. I've spent most of my time resting and sitting up for more than an hour results in me having a lot of pain. Walking is still difficult at times.
Joy has managed to contact the hospital and get me booked in for an operation to remove my kidneys which is scheduled for tomorrow - 24th April 2013. The surgeon has agreed to remove both kidneys if he can - providing the first kidney comes out easily. I'm in hospital tonight and have had some pre op tests and an extra session of dialysis to prepare me for tomorrow.
Here are a few things to pray for :-
1. That the operation goes well and the surgeon is able to remove both kidneys.
2. That I don't have to have a blood transfusion - as this will impact my options in respect of future kidney donation.
3. For good pain management and a speedy recovery.
4. That Joy and the kids cope with everything this week.
Hopefully I'll be out of hospital by next Wednesday but until then Joy has given me a ton of sweets to keep me going. Although I can't have any after midnight tonight - so by my operation tomorrow afternoon I'll be starving!
We know we have lots of support from family and friends who are praying like mad for us - thank you all for all you're doing.
We're all still smiling because of your support and love.
Thanks
Rob & Joybelle
& the kids xx
On 3rd April I got admitted to hospital overnight because of severe backpain. I was in hospital for 5 days until I eventually got strong enough morphine patches to control the pain.
By the second day in hospital Becki's fundraising site had hit the target of £6k - which meant we could start planning the operation. Amazing.
If you've not seen Becki's video here is the link.
http://www.youtube.com/watch?v=jPVA0rgR8HA
Since seeing this video the surgeon who will be removing my kidney's has asked if Becki would be willing to help produce some patient information videos.
Since being discharged from hospital we have managed my pain using the patches which I change every 3 days. I've spent most of my time resting and sitting up for more than an hour results in me having a lot of pain. Walking is still difficult at times.
Joy has managed to contact the hospital and get me booked in for an operation to remove my kidneys which is scheduled for tomorrow - 24th April 2013. The surgeon has agreed to remove both kidneys if he can - providing the first kidney comes out easily. I'm in hospital tonight and have had some pre op tests and an extra session of dialysis to prepare me for tomorrow.
Here are a few things to pray for :-
1. That the operation goes well and the surgeon is able to remove both kidneys.
2. That I don't have to have a blood transfusion - as this will impact my options in respect of future kidney donation.
3. For good pain management and a speedy recovery.
4. That Joy and the kids cope with everything this week.
Hopefully I'll be out of hospital by next Wednesday but until then Joy has given me a ton of sweets to keep me going. Although I can't have any after midnight tonight - so by my operation tomorrow afternoon I'll be starving!
We know we have lots of support from family and friends who are praying like mad for us - thank you all for all you're doing.
We're all still smiling because of your support and love.
Thanks
Rob & Joybelle
& the kids xx
Tuesday, 2 April 2013
Operation Needed
We were due to meet my urology consultant Monday last week but when we arrived for the appointment we found that he was on holiday and instead we saw his registrar.
The registrar dashed our hopes of a quick operation and told us my name wasn't even on the list yet for my operation to have my kidneys removed. Plus, he said he couldn't add me to the list until the urology consultant returned from holiday which isn't until next week. It could be 3 months or more before I get an operation scheduled.
The good news was that he believed both kidneys cold be removed at once by looking at the CT scan. The scan revealed that my kidneys completely fill my abdomen space - they are huge.
Over the last 3 weeks I've had increasing back pain and moved from cocodamol to a stronger codine pain killer, then on to tramadol and I'm currently on morphine patches and also tramadol - although after 3 weeks this is no longer dealing with the pain and I am in serious pain every time I move. Sleeping is difficult. Moving in and out of bed causes excruciating pain. I tried to go to church on Good Friday but the pain was too much and we came home. I managed church on Easter Sunday because my daughter was coming with me - but it was very painful and tiring so until I get some better pain relief I'm not moving very far and am housebound other than for dialysis sessions. The doctor has just doubled my morphine prescription and added diazepam - lets see if this has any effect tonight.
We have discussed having home dialysis which was seen as a very good step for me by my nephrology consultant and the dialysis team - so we'll have a meeting to check out the house and may get the equipment installed by June. This will enable me to dialyse every day for two hours which will give me better blood filtration and reduce some of the restrictions in my diet and fluid intake. Home dialysis will require Joybelle to be my carer as you're not allowed to home dialyse without someone else present to support you.
Becki (my step daughter) saw me struggling to get out of bed today and has decided to try and do something to help. She wants me to get the kidneys removed ASAP in a private hospital. She doesn't want me to put up with the intense pain or have to wait 3 months or more for an operation. We've found out a cost of £6000 and she's setup a donations page on the Internet. If she manages to raise the money then I will go private for the kidney removal operation.
This is the link for the fundraising website Becki has setup - http://www.youcaring.com/medical-fundraiser/raising-for-rob/50815
Thanks for your continued support and prayers.
Rob & Joybelle
The registrar dashed our hopes of a quick operation and told us my name wasn't even on the list yet for my operation to have my kidneys removed. Plus, he said he couldn't add me to the list until the urology consultant returned from holiday which isn't until next week. It could be 3 months or more before I get an operation scheduled.
The good news was that he believed both kidneys cold be removed at once by looking at the CT scan. The scan revealed that my kidneys completely fill my abdomen space - they are huge.
Over the last 3 weeks I've had increasing back pain and moved from cocodamol to a stronger codine pain killer, then on to tramadol and I'm currently on morphine patches and also tramadol - although after 3 weeks this is no longer dealing with the pain and I am in serious pain every time I move. Sleeping is difficult. Moving in and out of bed causes excruciating pain. I tried to go to church on Good Friday but the pain was too much and we came home. I managed church on Easter Sunday because my daughter was coming with me - but it was very painful and tiring so until I get some better pain relief I'm not moving very far and am housebound other than for dialysis sessions. The doctor has just doubled my morphine prescription and added diazepam - lets see if this has any effect tonight.
We have discussed having home dialysis which was seen as a very good step for me by my nephrology consultant and the dialysis team - so we'll have a meeting to check out the house and may get the equipment installed by June. This will enable me to dialyse every day for two hours which will give me better blood filtration and reduce some of the restrictions in my diet and fluid intake. Home dialysis will require Joybelle to be my carer as you're not allowed to home dialyse without someone else present to support you.
Becki (my step daughter) saw me struggling to get out of bed today and has decided to try and do something to help. She wants me to get the kidneys removed ASAP in a private hospital. She doesn't want me to put up with the intense pain or have to wait 3 months or more for an operation. We've found out a cost of £6000 and she's setup a donations page on the Internet. If she manages to raise the money then I will go private for the kidney removal operation.
This is the link for the fundraising website Becki has setup - http://www.youcaring.com/medical-fundraiser/raising-for-rob/50815
Thanks for your continued support and prayers.
Rob & Joybelle
Wednesday, 13 March 2013
Progress Update
I've been using my fistula for dialysis for 2 weeks now. The first two times it was used the vein blew and I ended up with a very fat arm full of blood. I've still got huge bruises on my arm nearly two weeks later.
I've been using my fistula without too many problems for dialysis 3 times per week until today. Today when I got up I noticed that I had a large lump in my fistula and it had stopped buzzing. I went into hospital (like I've not seen enough of the place recently!) and the lump eventually dispersed and blood started flowing again. I've got to go in tomorrow for an ultrasound investigation to ensure everything is ok. They aren't sure if there is an aneurysm in the vein or if blood has just leaked out of the vein into surrounding tissue. This means they can't put needles into it yet and they've had to cancel my dialysis tonight - I will get dialysed after the scan in the morning.
On 5th March I got a second infection which resulted in very high temperature, shivering and heart palpitations. I got sent to A&E and spent one night in their being monitored and given lots of antibiotics - then had to stay in a further night on Acute Admissions ward. I didn't get very much sleep at all over the two days and was really glad to come back home.
Because of the infection my consultant decided it would be best if I had my neck line removed as this is often how infection is acquired - so I had a mini operation on Thursday to remove the line in my chest. It's nice that its gone - but does mean I have no backup if my fistula has further problems.
I had a CT scan on 7th March - a surgeon has asked for this so that he can better understand my anatomy and make informed decisions about how to remove my very large kidneys. If the CT scan shows no complications he might take both kidneys out in a single operation. Having no kidneys at all will mean I am totally dependant on dialysis to regulate chemicals and fluids in my body. My kidneys need to be removed so that there is space for a new kidney when one gets offered from the national waiting list. I am also in significant pain in my back and sides from my kidneys pushing other organs out of place in my abdomen - so removing them should result in an improvement in pain symptoms.
I have an appointment on 25th March to discuss my CT scan and agree an operation date sometime in May to have one or both kidneys removed.
It does feel like my health has got more inconsistent over the past two months with several complications caused by my kidney disease. I'm still not working proper hours and until I get more stable I can't see that changing. From April I will drop to half pay which will present yet another set of challenges. But I'm remaining positive confident my issues will right themselves and all things will work together for good for those who love The Lord.
Thanks for all your ongoing support and prayers - its your support that keeps us going.
Rob & Joy
I've been using my fistula without too many problems for dialysis 3 times per week until today. Today when I got up I noticed that I had a large lump in my fistula and it had stopped buzzing. I went into hospital (like I've not seen enough of the place recently!) and the lump eventually dispersed and blood started flowing again. I've got to go in tomorrow for an ultrasound investigation to ensure everything is ok. They aren't sure if there is an aneurysm in the vein or if blood has just leaked out of the vein into surrounding tissue. This means they can't put needles into it yet and they've had to cancel my dialysis tonight - I will get dialysed after the scan in the morning.
On 5th March I got a second infection which resulted in very high temperature, shivering and heart palpitations. I got sent to A&E and spent one night in their being monitored and given lots of antibiotics - then had to stay in a further night on Acute Admissions ward. I didn't get very much sleep at all over the two days and was really glad to come back home.
Because of the infection my consultant decided it would be best if I had my neck line removed as this is often how infection is acquired - so I had a mini operation on Thursday to remove the line in my chest. It's nice that its gone - but does mean I have no backup if my fistula has further problems.
I had a CT scan on 7th March - a surgeon has asked for this so that he can better understand my anatomy and make informed decisions about how to remove my very large kidneys. If the CT scan shows no complications he might take both kidneys out in a single operation. Having no kidneys at all will mean I am totally dependant on dialysis to regulate chemicals and fluids in my body. My kidneys need to be removed so that there is space for a new kidney when one gets offered from the national waiting list. I am also in significant pain in my back and sides from my kidneys pushing other organs out of place in my abdomen - so removing them should result in an improvement in pain symptoms.
I have an appointment on 25th March to discuss my CT scan and agree an operation date sometime in May to have one or both kidneys removed.
It does feel like my health has got more inconsistent over the past two months with several complications caused by my kidney disease. I'm still not working proper hours and until I get more stable I can't see that changing. From April I will drop to half pay which will present yet another set of challenges. But I'm remaining positive confident my issues will right themselves and all things will work together for good for those who love The Lord.
Thanks for all your ongoing support and prayers - its your support that keeps us going.
Rob & Joy
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