Progress update - Second Kidney Removal Planned.

Been a long time since I last wrote an update so here's a catch up

We all love Home Dialysis
So home haemo dialysis (HHD) is going really well - the freedom and flexibity it has given back to us is priceless.

Joy is doing a fantastic job as my nurse and I feel so privileged to have such a wonderful wife who is willing to do this for me.

We dialyse 4 or 5 times each week and the increased frequency is paying dividends in me feeling so much stronger and healthier. Joy takes monthly bloods which are then processed by the hospital so we can keep check on the following electolytes (Calcium, Potassium, Phosphate, Haemoglobin, liver and kidney function)  To prepare for my operation this week Joy had to take 7 tubes for pre-op,1 for Transplant updates and 1 post-dialysis to check the effectiveness of the session.

At the start of March I had several cyst ruptures which resulted in lots of pain and blood in my urine for 2 weeks.

On Friday 21st March I had a CT scan to investigate the current status of my remaining kidney - this was good timing given the recent cyst rupture.
The scan results were provided by my consultant the following Monday and are provided below :-

CT Renal with contrast Both :
Non-contrast and 120 seconds images of renal area.
Previous portal venous phase CT  11th May 2013.
Previous left nephrectomy noted.  There are several foci of calcification in right polycystic kidney.
These are all less than 7 mm but in the interval there has been minor increase in the size.
There is no hydronephrosis.
There are now a few haemorrhagic cysts scattered amongst the numerous simple cysts enlarging right kidney.  Largest haemorrhagic cyst is 2.5 cm. Some of the foci of calcification in the periphery of cysts could be from previous haemorrhage.
There is little normal renal parenchyma. No contrast is seen in the collecting system at 120 seconds.
Associated multicystic liver disease noted.
Stable splenomegaly of 14 cm. Patent splenic and portal vein.
No other abnormality seen.

This is the first time Gloucester Hospital have spotted multicystic liver disease - although from other scans I've seen we already knew my liver has a large number of cysts. At some point it is likely that part of my liver will need to be removed. This report also says my spleen is bigger than it should be - but I don't want a spleenectomy as reduces the bodies natural immune protection system and increases the risk of infection.

My one remaining kidney is getting larger and more painful and on Tuesday this week (7th October 2014) I will be having it removed in Cheltenham hospital.
This will leave me with no kidney function whatsoever. 

The benefits of having the kidney removed are a big reduction in pain in my sides and back and less risk of major infection and significant pain from cyst ruptures.

The disadvantages are that I may feel more tired more quickly and may need to dialyse more frequently.

Prayer Points:
Pray that infections are completely avoided during my stay in hospital.
The operation goes well and my recovery time is quick.
Pray that a new perfectly matched kidney becomes available - soon!

Rob & Joy

Home Dialysis Commences

We started home dialysis on 6th January 2014. YIPPEE!!

It's absolutely brilliant.

In the three weeks prior to starting at home we'd been spending nearly 20 hours a week at hospital so we never felt like we got a break over Christmas.

But this first week at home has been a revelation. It has been very relaxing and really felt like we've had a rest.

We are dialysing five times a week at home instead of three times at hospital. This means I will get better results with more toxins getting filtered out of my blood and I'll feel a whole lot better. 

Today I went back to work and definitely felt like I had more energy - had such a good day. Plus, because we can dialyse anytime we like, I can start working more full days which will positively impact my life in terms of job satisfaction and bank balance!

My incredible wife Joy is just the best nurse I could possibly imagine. She's better than a real nurse because she takes her time to really care for me. What am amazing gift she is. Joy sets up the machine, inserts my needles and keeps a check on me every 30 minutes. Then she gently removes my needles and tidies up everything. She is a great blessing to my life. I love her completely.

Home Dialysis is brilliant it's the best thing to happen since I became ill.

Feels like we've got back control of our lives. 

Thank You God.

Keep praying :-

1. For Home Dialysis to continue to go well

2. That I continue to avoid infection

3. For a perfect donor kidney in the future

Thanks for reading and for supporting us on our journey.

Rob & Joy

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