As I write this it’s Thursday morning and I’m currently sitting on my hospital bed in Ward 206 at the Royal Infirmary of Edinburgh. I still find it hard to believe that last Wednesday I underwent a pre-emptive live donor kidney transplant with my mum donating one of her kidneys for me – that’s just over a week ago! To look at me right now you would easily mistake me as a visitor – there are no tubes, lines or catheters sticking out of my body, I’m fully clothed, able and active, plus I look so healthy! For once, I’ve actually got colour in my cheeks instead of the peely-wally colour I usually have. Within myself, I feel like a totally new person – it’s like somebody has flicked the power switch back on as I feel so energized plus my mind is so clear instead of the usual fuggy headachy confused state of renal failure.
My whole experience of renal
failure has been a rollercoaster of emotions and events. I was born with a faulty reflux valve which
damaged my kidneys. I was operated on at
At the beginning of 2005, we started discussing the possibilities of transplantation (even the hope of transplantation before dialysis) and if I had any family members willing to donate one of their kidneys for me. I am extremely lucky in that both my sisters and mother wanted to do this but in the end, Raigmore and Edinburgh chose to put Mum through the tests first.
As luck would have it, Mum was an excellent match and our visits to the Royal Infirmary of Edinburgh started. At first, they did everything to put her off donating to make sure she understood the full implications of what she’d be doing – the fact that she could develop renal failure herself or die on the operating table … let’s face it, why would/should anybody who is perfectly healthy go through a live donor operation they don’t need and which has a chance of endangering their life when they don’t need to? But once they realized Mum was adamant that she wanted to do this and had always hoped she could since she first knew I had renal problems, they accepted her decision and started her on a full set of tests to make sure she is 100% fit and healthy (these tests included an MRI scan which for Mum was the most difficult thing she had to endure as she’s claustrophobic but she did it).
In the meantime, I was going
backwards and forwards between hospital appointments at both Raigmore and
During August, we were told that we would have the operation either in September or October – we chose October – and were given the date as the 12th October. At our last Edinburgh appointment for the final cross match tests we decided to bring the operation forward by a week because my kidneys were failing faster as I’d suffered a bout of ‘flu at the end of September (one of the hazards of working in a school!)
On Monday 3rd October
I was admitted into
The day of the operation had finally arrived and Mum and myself were in positive spirits about it all. I was feeling like I needed the operation – for the last week or so I had really been feeling totally exhausted all the time … it was as if somebody had forgotten to charge my batteries and I was getting a bit embarrassed asking to push the shopping trolley around Tescos as I needed it to hold myself up or I’d collapse!
At
At
Fifteen minutes later, I was
being wheeled down to the anaesthetic room.
I admit I was feeling a bit apprehensive but not worried as everything
had been fully explained to me beforehand.
But thanks to the excellent
The last thing I remember was chatting about skiing with the anaesthetic staff and before I knew it, I was out for the count.
Next thing I remember was waking up in the recovery room with this desperate need to go to the toilet (a common reaction to having a catheter). After arguing with the poor nurse that unless he let me up and let me go to the toilet I was going to flood the place and with his amazing patience and assurance that I wouldn’t, I suddenly remembered where I was and what I must have just gone through. I immediately wanted to know how Mum was and where she was, and the nice nurse pointed her out to me across the room. I don’t think I’ve ever been so glad to see her wave back and see for myself that she was ok.
We were both transferred up to the High Dependency Ward 117 and had beds next to each other. Our initial assessments of ourselves were excellent – Mum said she felt great with no pain at all but very tired (which she felt was probably due to her having had an epidural). I felt amazing – I was in absolutely no pain (I thought I’d feel like I’d been hit by a bus or something similar) and what really surprised me the most, was the clear uncluttered feeling in my mind or rather the total lack or absence of anything clouding or confusing my thoughts. Plus the feeling of having so much energy! It really did feel like the transplant surgeons had finally found the missing power switch in my body and had finally turned it on.
Before we knew it, Dad and the rest of our family had arrived and there were lots of tears and smiles of relief and happiness. Jen our wonderful transplant co-ordinator had been keeping them informed or our progress throughout the morning but I don’t think they truly believed her in how well we were doing until they actually saw us for themselves. I think what surprised them most was how wide awake, energetic and alert I was – my family had always joked that they hoped Mum’s kidney would clam me down a bit as I’ve always been a chatty active person who never sits still for 5 mins … how wrong they were!
That night once our family had gone home and because Mum was feeling tired, I watched a video and then finished the book I’d been reading … I don’t know whether it was the adrenaline from going through the operation, or the effects of the steroids, or this feeling of being totally reborn anew that kept me awake wanting to experience every second of it.
Next day, our family was shocked to see both Mum and me out of bed sitting in chairs beside each other chatting plus I had three less tubes removed from my body (I was off the oxygen, the arterial line in my wrist was removed and my wound drain had been taken out). Also, they all said that it was the first time they saw colour in my cheeks and my eyes looked white rather than the hint of yellow they previously had. That night I got my first cup of tea (Mum missed here as she was sleeping!) and believe, me it was the best cup of tea I’ve ever had!
Friday saw my neck line removed and all the blood pressure, pulse, oxygen saturation leads and stickers off. But what totally gobsmacked my family when they were visiting, was when the nurse asked if I wanted a shower and I walked myself (shadowed by a nurse) down the corridor to the shower room – and so did Mum! That night I was transferred out of high dependency and back up to the transplant ward 206 – I had been ready to go since lunchtime but there wasn’t room due to an emergency transfer from another hospital but I didn’t mind waiting as I could keep Mum company (Mum was staying in 117 as they wanted to rule out a chest infection first). Next day at lunchtime Mum joined me up in Ward 206 although she had her own single room across the corridor from me.
We continued to progress extremely well over the next couple of days with my fluid line being removed as well as my catheter – I was now totally free of all tubes and stuff. The Transplant Staff continued to be amazed at how fast we were recovering but I think it was down to the fact that both Mum and me are very active people (mum swims and cycles and I swim, cycle and kayak) so were relatively ‘healthy’ and fit beforehand plus both of us do have very positive attitudes as well as from all the excellent care, support and attention we were receiving from the Transplant Unit’s nursing staff.
By Monday, there was talk of Mum going home on Tuesday with me following her mid week – it sounded too good to be true. That night around ten, the registrar came to see me to let me know my creatinin levels had jumped up and that this could be the first signs of rejection. He wanted to give me intravenous steroids and on Tuesday I’d be going downstairs for a renal ultrasound and renal biopsy to find out for sure what was wrong. This was when the transplant team proved their worth in gold. Mum and me were obviously upset and worried and wanted to know all the implications, treatment, and what to expect over the next few days. Also we wanted to know if we’d done anything wrong and were assured that we’d done everything right and they were kind of expecting there to be a chance of rejection between days 3 and 5 as I’m relatively young with a very strong immune system. They assured us there was nothing to worry about as there were lots of things to try to sort it. That’s easier said than done and with a cocktail of steroids in my bloodstream and my emotions off the scale, I really appreciated the kindness of one of the night shift nurses who gave me a great big hug when I broke down in floods of tears.
Next morning, my creatinin level had climbed again but not by much probably due to the intravenous steroids the previous night. Mum got news that she’d be staying another night as her blood tests had shown changes in her liver and they wanted to do a liver ultrasound to rule out any problems. It proved to be an interesting day and I can honestly say I wasn’t too worried about what was going on – I’d clamed down from the night before, my doctors didn’t appear overly concerned about what was happening to me and they’d dispelled all my fears plus I had the feeling that at least we were doing something to sort this as the first lot of steroid treatments had already made a difference.
The renal ultrasound was brilliant (if a bit cold and sticky!) as the doctor turned the screen to let me see my new kidney. It looked great – no blockages or damage ... it just looked like a perfectly healthy kidney. Then he showed me the blood supply to it and the whole screen lit up with red and blue flashes showing an excellent blood supply. He turned the volume up and I could hear the blood pumping though my new kidney and see the pulse running across the screen. He next gave me some local anaesthetic and I watched on screen (but felt no pain) as he inserted a needle into my new kidney to do a biopsy – it was truly fascinating. Next came the really hard bit. Because there is a risk of internal bleeding, you need to lie completely still and flat for 4 hours followed by another 4 hours lying flat but raised a bit to help prevent this from happing. Eight hours lying still?! I didn’t think I could do it. And neither did my family until they saw me that night during visiting. They were real stars as they got me a cheese salad baguette to eat while I was lying flat as I’d missed lunch during the tests.
The next good news was when Mum came back from her ultrasound as it had shown there had been no damage to her liver. Apparently donor patient’s blood tests always change several days afterwards for unknown reasons and they like to rule out any other factors that could be causing this. This meant that Mum could go home on the Wednesday. Later that night, one of the renal doctors came through to let me know that it was 1A rejection which is the mildest form of rejection and hopefully by tomorrow my creatinin levels would be decreasing. They did and later on yesterday, Mum went home.
I’ve now been through my three courses of intravenous steroids treating this rejection and today my doctors have just told me that if tomorrow’s creatinin levels have decreased again like today’s ones, I can go home. I can’t believe it. Last Wednesday I had my transplant operation and tomorrow I could be going home.
It’s hard to describe the emotions I’m going through right now … I’m eternally grateful to my Mum for giving me the chance of a new fantastic active life and for all her love and support throughout this traumatic period of both our lives; for the patience, love and support from my Dad, sisters, family and friends (Dad and my sisters travelled daily from Glasgow to Edinburgh to come and visit us); and for the amazing care, support and attention given to both Mum and me by the Transplant Unit Nursing Staff during our stay here – they truly are angels! And of course I can’t thank enough Jen my transplant co-ordinator and her team, the renal doctors and surgeons for totally transforming my life for the better – there’s nothing holding me back now!
June McMillan