Carrie White is a beautiful and bright 24-year-old woman studying psychology at Glasgow University. She is also a kidney patient who has been helped by Ewen Maclean – our Advocacy Officer for West Scotland. We went along to Largs on the West Coast of Scotland, to talk to Carrie about her experience.
Getting diagnosed
“I suppose we knew I would have kidney problems way back when I was a baby. I kept getting urine infections and hot flushes and so my parents took me to see the doctor. I was diagnosed with Alport Syndrome (AS).
Unusually and unluckily for me, both my parents carried the AS gene and this coincidence meant I was diagnosed with a particularly aggressive form. Autosomal-recessive is the form that tends to affect boys and usually means the carrier will have kidney failure by the age of 18. This is the form of AS that I have.
All through my school years I went to the hospital every 6 months for a check-up. But I don’t remember anyone actually telling me I might have kidney failure one day; I just enjoyed the afternoon off school. My mum died when I was 8 so it was just me and my dad left to monitor things. But, apart from losing her, which was awful, things just ticked over until I was about 17 and I left school. It was 2014 and my last appointment at the hospital with the paediatric renal team was in the April of that year, I left school in the May and went on holiday abroad with a group of friends in the August.
My friends thought it was really funny and that I was just hung-over.
I knew, as soon as we all arrived on holiday that I wasn’t well. I was so tired and lethargic all the time and just wanted to sleep. My friends thought it was really funny and that I was just hung-over. So they left me to sleep through the days and went out without me. But the longer it went on the more I realised something serious was wrong. I wanted to go home early but I managed to hang on until the end of the holiday to travel back with my friends. But at the airport, I collapsed. I did start to feel a bit better when I got home – I even fancied chips so my dad was reassured for a while that the bad spell on holiday might have been just a phase. But for the rest of that month I couldn’t get out of bed. I felt so ill.
It had all crept up so slowly on us that I don’t think my dad or I really knew how ill I had become. It took visits to two of my aunties where they both said to my dad ‘you need to get that girl to a doctor, I’m telling you, she’s not well’ to make us both realise that other people were seeing what we were not. My dad arranged for me to see our GP, but at first they did not do any blood tests.
Because I was in bed all day I spent hours trying to Google my symptoms to come up with a diagnosis. I remember telling my dad that I was sure I had Legionnaire’s disease! Dad was sitting on the sofa watching TV when I pointed to my phone and told him that I knew what was wrong with me. He laughed and told me not to be so ****ing stupid! The surgery had at first diagnosed tonsillitis and then treated me for glandular fever when the antibiotics they had prescribed to treat the tonsillitis didn’t work. But then dad started to insist that I see the head GP at the surgery and that I was to have my blood tested to get to the bottom of why I was so ill. He just didn’t believe that I had tonsillitis or glandular fever anymore and that was the big turning point for me.
I did start college in the September. My class was up four flights of stairs and by the time I got to the top flight I could hardly stand up, I was so out of breath. When I got off the bus at the end of the day, sometimes I would vomit on the pavement because my body just could not keep up with the routine of going to college, working all day and the travelling involved.
Then one day at college I noticed in my break that I had two missed calls - one from the surgery and one from my day. I called my dad back straight away. He said that the surgery had called him to say they couldn't get hold of me and that he needed to leave work right away, get into his car and come to collect me to take me into hospital immediately. I remember he was so worried because they could not tell him any details as I was now an adult. I called the surgery and they told me to go with my dad to the hospital and that I should expect to be admitted immediately as my kidneys were functioning at only 5% capacity.
At the Western Infirmary, which now no longer exists, I had a groin line put in and they dialysed me immediately. It was so frightening. It was October 2014 and I was in for about 6 weeks. I didn't know it at the time but as soon as my dad saw me settled in he went straight to the nurse and told her he wanted to donate one of his kidneys to me. His whole work-up to become a living donor took longer than it usually would because he carries the AS gene and everyone involved in the transplant had to be happy that this would not be an added complication for me if I had one of his kidneys. I went home and settled into a routine of 3 sessions of haemodialysis a week. I was still passing a bit of urine. I really started to feel better.
Six months after this I had my PD line (peritoneal dialysis catheter) put in. I started PD while my dad was being worked up to become my living donor. I know we're all different but PD really suited me and apart from having to dialyse, life went on pretty much as normal.
On 13 September 2015, I was transplanted with one of my dad's kidneys. After a short period of recovery, when he did say he felt like he'd been hit by a bus, he was back to his usual great health and fitness. He even went back to his open-water swimming from the coast out to the islands here, and only a few months ago swam across the Clyde!
Those first three months post-transplant were just great for me. When I recovered sufficiently, I went off travelling around Europe with my friends and it felt so good to be free of dialysis. But now, When I look back on that first year I can see that I never managed to go more than three weeks without having to go back to the transplant clinic because my bloods were all over the place and my creatinine was steadily creeping up higher and higher.
In September 2016, I got a UTI (urinary tract infection). My creatinine had risen to over 300. And by December my nephrologist confirmed what I already suspected - that this kidney wasn't going to last. Then, when I was diagnosed with BK (BKV - BK virus) I reacted badly to the drugs I was prescribed to try to tackle the virus. I felt so unwell one day at my boyfriend's place that I took myself to hospital and they tried everything to bump-start the kidney into action. That was January 2017. But nothing worked and I had a PD catheter put back in. We had to use it as soon as it had settled in. Not long after this they took the kidney my dad had donated out.
I started by doing 4 PD exchanges a day, but soon transferred to nocturnal APD (ambulatory peritoneal dialysis) because I needed to dialyse. I was soon doing 9 and a half hours a night plus two manual bags during the day. I had to call time and ask to go back to haemodialysis so that I would achieve a better quality of dialysis and at least, I had a day off in between sessions.
So, this is where I am today. I go to Inverclyde Hospital three times a week - a Tuesday, Thursday, and Saturday for four hours of dialysis a time.
Getting help from Ewen
When I was dialysing first time, my dad got worried that I did not have anyone in my life who could share my experience. And, of course, I have no mum. It was just me and him and he was trying to be mum and dad to me. He contacted Kidney Care UK to find out if they could help us. Dad spoke to Ewen, Kidney Care UK advocacy officer for Scotland. He is now just like a really good friend to us. First thing Ewen did was to set up a meeting with another young girl, Becca, who is my age, for me to talk to. Ewen and Becca turned up at a cafe and then my dad and Ewen went off and had a cup of coffee away from us so that we could talk about dialysis, transplants, immune-suppressant drugs and generally life in your 20s with CKD. Becca and I got on really well and now she is just like a regular friend and we talk a lot.
Ewen also helped me apply for a grant from Kidney Care UK so that I could take driving lessons and get back some independence. Passing my driving test meant I could at least get myself to dialysis. He also organised for a grant to cover my first year's car insurance.
So, yes, life is tough with CKD and dialysis. I think I took my first transplant for granted a bit because I hadn't been too unwell on dialysis first time around. But everything is different this time. I need dialysis now because I am not passing any urine at all, so the fluid just collects in my body and I really have to watch what I eat and drink now between dialysis sessions. If I am lucky enough to get another kidney I know it will make such a difference this time. I need dialysis now because I am not passing any urine at all, so the fluid just collects in my body and I really have to watch what I eat and drink now between dialysis sessions. If I am lucky enough to get another kidney I know it will make such a difference this time. But at least I can now drive myself around and I have a great friend in Becca thanks to Ewen."