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.