My Story

Andrew and Jackie's story of kidney failure

It was a bleak day in May 2012 when our world started to collapse as we were told that Jackie had progressed from chronic kidney disease to end stage renal failure. The outcomes aren’t great with a much shortened life expectancy with complications increasing as the disease progresses. Married 23 years with 2 children, much to live for but with a big question mark over our lives together, moments like this really focus the mind as to priorities. As a family we did close in, pull together, our son instantly volunteered but was refused as he was too young.

Jackie took the bad news really well that day, she was a little tearful when the young doctor told us that her kidney function had now gone and while the shock set in and the senior doctors assembled, there was a barrage of questions about her diet and lifestyle. All that seemed irrelevant to me; I had watched Jackie deteriorate over the last 12 months. In an almost out of body experience I listened to them ask about what she ate, appetite issues and discovered the reason she suffered breath issues was because ammonia was being released into her saliva leading to bad breath. They explained her blood markers were seriously high and that it was unsurprising that her appetite for meat was zero as her creatinine levels were close to 1000; they should have be about 90 in a normal person. The saving grace was our consultant; dissatisfied with the care from our local trust he instantly referred us 25 miles down the road where he also practiced.

The issue was that 12 months prior to this he had told us that he needed to see us every 3 months as there were some changes and Jackie need more intensive monitoring. From the September that year she had religiously presented herself at outpatients to be told that our Dr was booked up and that if he needed to see her we would be notified. It took 9 months and a rather snotty email to the dear Dr for them to react and get us an appointment within 24 hours of contact. I don’t blame him but I do blame the local NHS Trust in deleting us from the system (together with 19K other chronically ill patients). You would have thought that at some stage someone would have mailed the department and done a name check……

Anyway, there we were eGFR (estimated glomerular filtration rate) of 5 diagnosed at end stage renal failure. In the lighter moments we joked about funeral plans and the fact that she wouldn’t make the age of 50. It’s hard to build in tracks from Grease (such as you’re the one that I want) when you don’t want to think about losing the one you love so much. The new hospital really moved mountains and we were at clinic every few days from the start, learning more about Jack’s condition, kidney function and what was going to happen over the coming weeks and months. The pre-dialysis team came home to talk us, to reassure us that they would do anything to help manage our problems and to talk through the options open to us. Jackie was in urgent need of dialysis to filter out the toxins building up in her blood every day. We had 3 options, CAPD (continuous ambulatory peritoneal dialysis) where Jack would have to fill her peritoneum 4 times a day with 2 litres of fluid, the idea is that the toxins pass from the body to the fluid through the peritoneum; this sits in the body for a period of time and is then drained out. The other option is APD (automated peritoneal dialysis) this takes place overnight where a machine by the bed fills and drains the peritoneum at pre-set times, normally 7-9 times per night, leaving the day free to live normally. Finally there was Haemodialysis, where the machine does this directly through the blood.

Jackie works for the Blood and Transplant Authority so is NHS, she loves her job and even though she was seriously ill, she had no plans to stop working so we needed a system which allowed for that. We went with a home option of APD and waited for the letter from the hospital for the Tenchkof catheter to be fitted, within a few weeks Jack went in and had the catheter fitted, under local anaesthetic; in and out in a day. She was coping with this really well and demonstrating a remarkably strong character. When the first prescription was delivered in July 2012, we were gobsmacked. The arrival was the size of a small car; thank goodness we had a double garage to swallow the sheer size of the delivery….and this was to come every month!

Our dialysis nurse came round to show Jack how to plumb into the system and off started the next step in our journey, she started on the 1st weekend of August 2012 with 10 Litres passing through her every night, the machine gurgled and burped its way through every night and we probably didn’t sleep for a month, we looked at each other, ignored each other or chatted through the night for the first month. As in any condition we started to sleep through and eventually adapted to the new way of life. Jack took to dialysis like a duck to water; the only limiting factor was being in bed at 10:30 so that the programme completed by 7am. 4 months had passed by now and I could see a change in Jackie, she was starting to feel better, her energy levels improved and the anaemia improved as she started on EPO as her kidneys had stopped producing and she did suffer breathlessness due to the anaemic status. Jackie dialysed for almost 12 months to the day of the transplant. We entered the live donor programme in July of 2012 with 3 potential live donors, me, the husband, a good friend of mine and his wife; this was the hardest thing that I faced as there were no family members that even wanted to talk about it. I have to respect my in laws but would have really appreciated the conversation on why they couldn’t donate to their sister, so, with 3 of us in the frame, we started the screening process.

The first steps were lots of blood tests to look who was the best match. Of the 3, I wasn’t the best but the most local and as we had been married for a long time and had 2 children, there was the view that if Jackie was going to build immunity to me, she would have done it by now. There was another donor, James who was better, but 250 miles away and probably 12 months away from completion of the tests.

We decided that I was enough of a match to progress, then the tests started in earnest, x-rays, scans, CT scans to make sure that my kidney function was sufficient to donate. We were complete and ready by Easter. A visit to my parents lead my blood pressure to be too high, so removing salt and reducing stress stalled out the planned date out by another 3 months by which Jackie felt great and considered a life on dialysis.

After a very stress-less day on a 24 hour blood pressure machine, basically having it fitted in hospital and then going back to bed for the next 24 hours, I passed the final test and we were given the date of the 14th August, 6 weeks to go and the date came forward a week to the 7th.

We worried about the possibilities for what could happen and looked at each other as we signed the consent form. Okidi, one of the surgical team at Manchester Royal Infirmary warned us both: “we have been looking at your notes and would like to make you aware that you may die, suffer long term pain and loss of nerves round the wound”.

Having 2 growing up kids (19 and 17) we discussed the next steps but my view has been that I wanted to grow old with Jack and as such was willing to do whatever I needed to do even if it meant me not coming back. That in mind we headed off for surgery, frog in throat, tears in eyes and a quick kiss.

8 hours later (4 each) we both were sorted and the kidney had been removed from me in the morning and repositioned in Jackie in the afternoon. Hospital was a week of enforced rest for me but Jack stayed in 10 days, the last 5 days were the most frustrating for Jackie as I was at home recovering.

The first weeks post op were quite a stress as rejection was always on the cards and each week there was the regular blood tests which, thank God, all stayed constant showing that the kidney was working and, more importantly, Jackie wasn’t rejecting it.

As the weeks and now months have passed, Jackie has made a miraculous recovery, now feels back at full health, like she did 10 years ago. My plans to grow old together now feel a reality. We are now planning on booking a holiday, our first in 4 years and now we have the chance to get back the life we once had and hopefully we can grow old disgracefully, together.

We’re both fully aware that my kidney is treatment for Jackie, and not a cure. Our future is a carefully managed one, looking after the donated kidney for as long as we can. It is not unknown for a donated kidney to last over 20-30 years. That in mind we should live into happy old age and see our children grow into adulthood and take their place in the world. Anyone in our position should take strength from this. Face it together, look forward and think positive.

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