Home Dialysis Equipment Delivered

Hi All,
On Tuesday this week (17th Dec 2013) the plumber and electrician arrived to get the house ready for home dialysis.Then Thursday (19th Dec) my dialysis machine, water softener and reverse osmosis machine arrived. This is about 4 weeks behind the most recent schedule and promises we were given and this caused much stress as we'd booked time off over Christmas and expected to be home dialysing by now.

We were given a cast iron guarantee we would be dialysing at home by Christmas by several senior people - but that's not going to happen :( So we'll be at the hospital dialysing for 6 hours every other day over Christmas. The new plan is to be home by 6th Jan - lets hope this becomes a reality.

After several conversations and letters to hospital senior managers over the past month we've finally managed to get the kit delivered.

Next step is to set the equipment up and then take a water test. The test results will take a week so the sooner the test is taken the better. We're waiting for a technician to come and do the setup now. Providing the test comes back OK we can begin dialysing.

The water goes through 5 processes to get it clean. There is a particle filter, then a water softener, then a carbon filter to remove chlorine, then a reverse osmosis process and finally a special filter in the dialysis machine to get the water clinically sterile ready to go into my blood stream during dialysis.

It has felt like this day would never come - we originally were offered home dialysis in February 2013 and were accepted for home treatment in March. We were told it would be 2-3 months to setup. Well that 2-3 months has been a real journey with much frustration but 10 months later its actually beginning to feel like it might happen.

Home dialysis will make our lives so much simpler. Joy has done over 550 journeys to and from the hospital since she started training to needle me on dialysis in March! So a big time and petrol saving but that's just the start. Instead on being tied to specific days and time we will be free to dialyse whenever we like. So we can do extra shorter sessions and fit them around our busy lives. I will be free to work full days on Mon, Wed & Fri and this will help our income as we've been on half pay for the hours I've not been able to work. Also when I see Joy and Jake my kids I will actually get to see them for more of the time rather than spending some of my limited time with then down at the hospital without them. Becki has also been home alone a lot 3 days a week so she will be glad to have us around in the house with her more.

Roll on a better life in 2014 - can't wait to start using the machine.

Keep praying for a kidney transplant and for no more delays to home dialysis.

Thanks for reading and for your support.

Merry Christmas & Happy New Year

Rob & Joybelle

Home Dialysis is nearly here!

We had a meeting last Friday with the dialysis provider and their installation contractor.

We converted our garage 3 years ago for the kids to use as a games room - now we've reclaimed half of the room to use for dialysis. 

The contractor surveyed our home and was very positive about there being enough space and having really easy access to water and electrical supplies. 

They will need to bring water into the games room but thankfully the downstairs toilet is immediately behind the wall. The waste will also go through the wall and amazingly our toilet already has the facility to connect an additional waste pipe into the sewer - easy!

There is also a need to connect up a new electric circuit for the dialysis machine but that's easy too as there is already a route from the electric box to the room.

The contractor needs the next two weeks to setup a home dialysis training room at the hospital but once that's done he will plan to come and do the work at our house in readiness for our equipment. He says it will only take a day to get us all setup.

We will start training in the home dialysis trainng room as soon as its available. Joy already sets up the machine, connects the pipes and dialyser filter. She also inserts my needles (which are now blunt needles :s) and completes my paper work and then removes everything from the machine when I finish. But we have a few extra things to learn and become competent in before we can go home.

My machine has been ordered from Germany and we are being setup for monthly deliveries of supplies. We will get special weekly waste collections from the city council to take away machine waste pipes and used filters and also sharps bins. 

The dialysis provider will be contacting the water, electric, gas and telephone suppliers to our home to inform them that we need to be listed as critical users who require constant supply for my 'life saving treatment'. This ensures they notify us of any service disruption and check we are ok with it. It also means if there is an unexpected outage our street will be top priority to have service restored ahead of other areas.

We are getting HDF dialysis which is significantly better than standard haemodialysis - not many UK home haemo services can offer this. If we'd taken a service from Bristol we'd not have got HDF.

HDF has an additional process to standard haemo which takes extra fluid off my blood as it goes around the machine and replaces it with fresh perfectly balanced fluid. This means extra nasty toxins get removed and I get to feel much better. It does require extra equipment such as a reverse osmosis water filter (whatever that is!) plus the water needs to be comprehensively filtered to make it clinically sterile.

I am hoping I will be able to dialyse more than three times a week as you get the best results from dialysis during he first two hours. So instead of 3 lots of 4 hours I will aim to do 4 lots of 3 hours or 5 lots of 2 1/2 hours. I have to do a minimum of 12 hours per week with a minimum of 3 sessions.

It will be great to have the flexibility of being able to dialyse whenever I like instead of being tied to fixed times. This should give me a massive amount of freedom back :)

Dialysing more often also means some of my fluid and diet restrictions can be relaxed. I'm looking forward to being able to drink more than 1 ltr per day although I won't be rushing to eat more vegetables!

I should be home dialysing in time for Christmas - a brilliant Christmas present!

I'm really really well at the moment and loving life. Working hard at work and spending evenings and weekends developing the church computer network. From next week I'm planning to work 4 hours Monday, 8 hours Tuesday and Thursday and 4 hours Friday so a total of 24 hours.  Will go up to full days on Monday and Friday in the new year once home dialysis is all up and running.

Thanks agin to everyone for your support. Keep praying. 

Rob & Joy

Back to Work

Had a meeting with occupational health a 3 months ago and they agreed I could go back to work. I then had to wait a month to meet with my boss - but managed that finally and so I started work in August. Next week I increase to two full days which it good progress. 

My Haemoglobin levels have returned to normal. It took 3 months to rise from 70 to 90 and in the last 3 weeks it jumped from 90 to 129 which has meant I'm feeling better now than I have done for the last year.

We are now getting me on and off dialysis without a nurse - so we are getting ready for home dialysis. Inserting the needles has been challenging but we are used to it now.

Today I heard that the company who used to provide home dialysis have been let go by the hospital and they're now trying to get agreement from a different company. My consultant hopes we will be home dialysing by Christmas which will be brilliant. It's been a long time coming and it's taken lots of letters to various people to get things moving. The hospital stopped paying the previous company over a year ago and it caused a contract breakdown - its taken a year for both sides to start talking again!

Most of my blood levels are normal which is great and I'm feeling very well.

Thanks for all your support and prayers. Next leg of the journey is getting a transplant and that could happen anytime. 

 

National Transplant Video

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.

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

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

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

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

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

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

Nephrectomy Operation Planned

I've been on dialysis 8 weeks now. I'm still getting tired very quickly and work has said they are unhappy with me doing more than 6 hours per week.
I was hoping I would be getting back to work full time by now - but I still don't have he energy and my back pain often makes it difficult to stand up straight.

I had an operation to create a fistula at the end of January and hopefully it will be ready to be used sometime in the next 5 weeks. Using a fistula will enable the dialysis machine to run at a much faster pump speed which means I should get better filtration in my 4 hours on the machine as the blood will go round faster and therefore get more filtering. I'm now pinning my hopes on feeling a lot better once I dialyse via my fistula.

The fistula is very cool - it buzzes the whole time.

I had an appointment with a Urologist this week to discuss removing one of my large polycystic kidneys. This should ease my significant pain and will also ensure there is room for a transplanted kidney when one gets offered from the national transplant waiting list.

The Urologist was happy to remove one or both kidneys depending on my anatomy and the complexity of the operation.
He said there was a chance they may need to remove my spleen and whilst this is not a major problem it would mean I would have to take antibiotics every day for the rest of my life to maintain my immune system. Another miraculous body part that filters blood, manages red blood cells and reacts to illness in the body sending healing cells and extra blood to the right place - clever God.

So next on the list is a CT scan - which I am keen to have as it will also allow me to see how badly impacted my liver is - currently I have not been formally diagnosed with polycystic liver disease but on ultrasound scans in the past the radiologist has been fairly sure I have cysts on my liver. Thankfully polycystic liver disease rarely leads to liver failure.

My nephrectomy (kidney removal) should take place sometime in May this year.

So looks like I will be off work for even longer and I'm now close to having used 6 months sick pay so I will reduce to 50% pay which will need some serious adjustments in our monthly budget.

Please pray
1.That polycystic liver disease will be at an early stage when undergo my CT scan with no likely consequences in my lifetime.
2. For a quick nephrectomy operation so I can start getting better ASAP.
3. That my spleen won't need to be removed.
4. That on half pay we can manage our finances to stay out of debt.

The more I learn about my body the more in awe of God I am. I am definitely made in a wonderfully and complex way.

Thanks for reading.
Rob and Joy

Dialysis Progress

Dialysis is going well. I'm feeling much better and have more energy. I'm not sleeping in the afternoons anymore and am hoping to go back to work soon.

I've just finished a course of vitamin B12 injections which should help my energy levels improve further.

The fluid restrictions are quite harsh - I can't drink more than about a litre of fluid each day - and that includes gravy, soup, jelly, yogurts, etc. That's probably the worst thing. Most of my other blood levels are fine so the rest of my diet is unaffected at the moment.

My fistula operation was cancelled on 27th Dec because the ultrasound showed my veins were too thin in my left arm. I have another scan next week on 24th Jan to scan my right arm. Hopefully they will get on with the operation quickly after this.

The line in my neck that is currently used for dialysis is now 5 weeks old. At times blood flow is very slow through it. A fistula will allow much faster blood flow and therefore better filtration during dialysis.
Yesterday my line completely stopped working at the end of my dialysis session - it took a hour to get me off the machine - during which a very large blood clot was extracted from my line. My blood flow is still poor so its possible there is still some blockage in the line.
They have started using a special lock to try and clear the blockage and yesterday I had an infusion of something (I think is was Urokinase but don't quote me!) to try and help ease the blood flow. The idea of large blood clots in my line doesn't exactly thrill me but I'm still breathing so I've got to believe God is in control.

I'm hoping to get a urology appointment with a surgeon soon so that I can discuss a nephrectomy to remove one of my failed kidneys.

I'm trying to get the most out of the rest time I have on dialysis. I am reading books and email and watching iplayer etc. Everyone is very friendly at the dialysis centre and all of the nurses are brilliantly helpful. It's not as daunting as I thought it might me.

I'm still believing for a transplant from the national waiting list - but this does limit how far I can travel from Bristol. So no trips abroad for me in the near future.

We have decided to plan a holiday this year and have booked a week in an apartment in Torquay. This was complicated by needing to also book holiday dialysis but we are all sorted now and have something to look forward to in the summer - just praying for a week of sunshine when we go away to the wonderful English Riviera!

Thanks for all your support and prayers.
Looking forward to the day I receive a kidney.

Rob & Joy