Wednesday 5 November 2014

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 

K
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.

Sunday 2 November 2014

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.

Monday 6 October 2014

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


Monday 13 January 2014

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