Blue Hands

3 months post second kidney removal health is taking a dip. 

Life was much better with kidneys as God designed. All the man made dialysis technology doesn't compare.

After the ups and downs of the op in October things had settled down and I began to feel quite well with strength  returning in November. 

But towards end of December my strength dropped. On dialysis yesterday my hands went blue - not sure why. 

We called the kidney ward and asked if they would get the on call kidney consultant paged. We spoke to Dr Morriaty - a fab kidney doctor. He said not to worry and we've booked in for a dialysis slot during the day on Tuesday for assessment. 

So much for returning to work next week...

That's quite frustrating - as work are expecting me and I'm expecting to be back. 

Hopefully this will be a short recovery blip once treatment settings have been tweaked. 

We're still trusting for a kidney in the near future to put my body back into natural balance. 

Keep praying - the journey continues - and God is still in control (thank goodness)

Pretty photos of my hands follow :-

Great Blood results

I came out of hospital very ill on 24th October due to high levels of toxins in my blood because I no longer have any kidneys. I've dialysed 10 out of the past 11 days and look what its done for my blood results!

Date		Urea	Creatinine	K	Ca	PO4	Hb	wbc	plats	eGFR
04/11/14		3.70	398	3.70	2.20	1.03	87.00	3.80	198	14
24/10/14		10.50	1010	5.10	2.05	1.71	78.00	6.70	422	5

These blood levels (particularly Urea, Creatinine & eGFR)  from 4th Nov 2014 are about the same as they were in December 2012 when I started dialysis - not felt this good for a while.

Dialysing everyday is a chore though and I'm not sure how it will work out when I'm back at work. I should get back to work once my Hb has got to about 115 again - this might take until January.

Hoping for a kidney in the Christmas transplant rush…Keep praying.

Kidney 2 Removed

Finally feeling better after having my second kidney removed on 7th October 2014.
I now have no kidneys so am 100% reliant on my haemodialysis machine for blood filtration.

The operation went really well but there were quite a few post op complications.

I spent about 6 hours in recovery because my blood pressure was far too low. I nearly ended up with needing a blood transfusion but narrowly avoided this. I had been clear with staff ahead of the operation that I didn't want a transfusion because it has an impact on future kidney transplant options.

I eventually made it down to Dept. of Critical Care (DCC) in Cheltenham.
Almost straight after I arrived in DCC a blood test revealed my Potassium at 7.1 which was far too high. Rapid treatment to reduce my Potassium had an immediate impact on my blood sugar and I began to loose consciousness. They soon reverted my hypo state by feeding me lots of dextrose tablets.

A few days after the op the Dr noticed my fistula (fast blood access for dialysis) wasn't beating and had clotted. This was probably caused by me coming off daily aspirin as they wanted my operation site to clot and heal.

By the end of the day an emergency operation was booked with vascular surgeons to try and save my precious fistula. I had keyhole surgery and they eventually used tiny balloons to collect the blood clot and also to blow up and stretch the collapsed artery. Not very comfortable but totally amazing work. My fistula was fully healed. 

I was given lots of blood thinning/anti clotting medicine as a result of my fistula clotting but this lead on to the Dr discovering I had a significant internal bleed at the operation site. To resolve this a further operation was booked for a drain to be inserted into my back - thankfully I don't remember much as I was given some very good relaxation medicine of some kind. 

Whilst in DCC I was dialysed on a filter machine which runs much more slowly than a normal dialysis machine. Unfortunate staff were not well trained on the machine and on two occasions the machine clotted and I lost all the blood that was in the machine. 

This further reduced my haemoglobin levels and pushed me closer and closer to a transfusion again. We managed to get them to delay the transfusion and eventually they agreed I was stable enough to not need the extra blood - phew! It was annoying as we had seen the signs of the machine clotting and when we asked to be removed from the machine before I clotted and lost blood again, the response from the staff was that the filters on the machine cost lots of money and therefore they wanted me to be on it as long as possible. I wish they saw my blood as more valuable than their blessed filters but never mind - I lost blood for the sake of a filter....

After 10 days in DCC I was moved to ward 7B in Gloucester. A great place during the day with many top kidney experts. But at night it's a scary place. No where near enough staff for the number of very ill patients on the ward. On the second night the man next to me who was delirious and very unwell kept climbing out of his bed and whenever other patients pressed the nurse call button no one came. After waiting ten minutes I wondered up and down the ward looking for staff, still very unstable on my feet. Only 1 nurse was on the ward. No one else at all! I think the other three staff went on a joint break. Needless to say the gentleman next to me died due in part to a lack of nursing capacity on the ward. Lesson - avoid being on the ward unless you really have no choice.

We checked ourselves out of the hospital the next morning!

Two 1/2 weeks after the operation I still wasn't eating or drinking and had serious stomach pains. My GP came to see me and wanted an ambulance to take me back in to hospital. It took 7 hours for the ambulance to arrive and once in A&E they eventually put my pain down to not enough dialysis & the toxins in my body were increasing daily. After a night in ACUA (Acute Admissions ward) and getting very poor treatment we self discharged again on Saturday morning in between Joybelle getting her hair done for Kye & Emily's wedding, putting me on dialysis and actually being the registrar at their wedding. Don't know how my amazing wife managed to fit so much in that morning. 

When we got home we were phoned by one of the Consultants from 7B who advised us that we needed to dialyse more frequently as I have 0% kidney function now, shame they didn't tell us that before we left the hospital. We're dialysing daily for the next two weeks and then will try and go to alternate days. So glad I have an amazing wife who's also my amazing nurse.

I'm home now and feeling much better.  We both picked up a nasty bug in hospital which has taken a week to recover from. But we're on the up now.  All future issues we'll call a kidney consultant directly as GPs just don't have the experience and respond by hospital admission when it's not always the right answer.

Thank you everyone for your ongoing support. We really appreciate all of your prayers.

My faith has been challenged. How can a mighty God who can make the impossible happen let me be this ill. But I guess you could ask why not me. Why should anyone else have to go through this - rather me than someone else. 

Some photos below :-

Care in DCC at Cheltenham was excellent. 

Pretty wound - most bruising has gone down now.

Operation site after clips were removed.

Back drain was a pretty picture too.

Back once the drain was removed.

Had a groin line for temporary blood filtration.

Who knew the groin line was a foot long under the skin!

Pizza delivery to critical care - at least I was eating!

The big escape from hospital - grateful to be going home.

This was the first kidney removed in April 2013.

This was the second and most recent kidney removed October 2014 - still a fair size.

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