No matter how much information I had or how ready I felt, nothing could have prepared me for that phone call. It was 6:00 am, I was bleary eyed, and despite the calm voice on the other end of the line, I was visibly shaking. My girlfriend, Katie, was sat next to me on the end of the sofa bed, reassuringly rubbing my back; she immediately knew what was happening. A quick round of goodbyes, after little more than 7 hours visiting friends in London, and we hit the road. With Katie driving, I only then had a chance to really think about what was happening.
My story technically begins with my mum, my granddad before her and before him generations of family members that I never. I was born with Polycystic Kidney Disease (PKD). PKD is a fairly common genetic disorder, about 64,000 people or 1 in 1000, have the disease in the UK, many of whom may never need treatment. A faulty gene causes cysts to form and grow in the kidneys, reducing their efficacy. The fluid filled cysts can grow to amazing sizes and the kidneys with them, becoming ever less effective with their growing mass. Typically a kidney will be fist sized, or 12cm long, currently mine measure about 30cm each, filling the majority of my abdominal cavity, front to back.
Kidneys are most commonly cited as removing urea, other waste products and excess fluid from your blood through the creation of urine. However, their functions spread far wider; instigating the creation of red blood cells, regulating blood pressure, controlling your bloods the acidity and synthesising an active form of vitamin D that enables your body to absorb calcium, strengthening your bones.
Along with my brothers I was regularly taken to hospital for ultrasound scans while growing up. I enjoyed watching the screen and always felt that a bit of gel spread over my abdomen was a small price to pay for a morning off school. I knew about the multitude of cysts in my kidneys, but they never impacted on my life. As the doctors became happy that the cysts weren’t growing rapidly, my scans became less regular, until eventually I headed off to university without a thought passing through my head about my underlying genetic disorder.
Five years later, in 2010, I found myself on the renal ward of Ysbyty Gwynedd (Gwynedd Hospital), having been passing blood in my urine for three days. Despite the cause being linked to over-frivolity in a small flat, ending with me falling over a chair, the doctors were diligent and requested blood tests. The results were not good. My kidney function was about 30%; my cysts had grown while no one was watching.
Returning home after my time in Bangor, regular blood tests were scheduled at The Countess of Chester hospital, and so I watched my kidney function drop. My medications started to pile up, covering for my failing kidneys; pills for lowering blood pressure, providing vitamin D, reducing the acidity of my blood and reducing phosphate. All the while my kidneys were getting worse, my red blood cell count was falling, my blood was becoming more and more toxic. I had to watch the amount of potassium I ingested – tomatoes, mushrooms, potatoes, bananas and many other fruit and veg were now heavily restricted – phosphate – that’s dairy products, meat, pulses and many fish gone – protein – covering any meat and fish not already restricted – and be careful to consume high quantities of water. I consider the effects I suffered mild; I was chronically tired, never feeling awake or alert irrespective of how much sleep I had, and my kidneys ached on a daily basis as they were squeezed by the rest of my body. My sides and back experienced sharp pain as my bladder was forced to one side by the kidneys.
All this might sound miserable. It wasn’t. I changed my diet over time and got creative in the kitchen, so I barely noticed the foods I was missing. Every time I had a blood test where my potassium or phosphate was within normal ranges I was awarded a great sense of satisfaction. However, try as I might to make my kidneys last forever, their function continued to drop and discussions about dialysis started taking place.
There are a range of options for dialysis. Haemodialysis requires half a day being spent in hospital while your blood is pumped from your body, through a filtration machine and back in, repeated three times a week. I did not want haemodialysis. Peritoneal dialysis requires that you empty a bag of specially designed fluid into your abdominal cavity a few times a day, draining the previous session’s fluid each time. Not ideal, but at least I could continue to maintain a degree of normality. I had watched my mum teaching a full timetable at school while on peritoneal dialysis, my life could fit around the 30 minutes spent draining and filling fluid. When my kidney function dropped below 10% the prospect of dialysis became ever more real, with various meetings, tests and scans taking place to ensure my suitability for my chosen method of blood cleansing.
While all this was going on and with my ever decreasing kidney function, I was activated on the kidney transplant list in October 2017. It was the next step on the ladder, the next treatment, the day I had pretended might never come. Once activated on the transplant list travel opportunities became somewhat reduced, as I needed to stay relatively near the transplant centre, Liverpool in my case. There was the possibility of being temporarily removal from the list should I need to travel abroad, but I couldn’t live with the thought of missing a transplant just for holiday so, as my mum did before me, I planned to stay within 2-3 hours of Liverpool until I was called. I had watched my mum wait for years before a suitable kidney was found for her. With an average waiting time of 944 days for a kidney, I wouldn’t really have to worry about it until I had been on the waiting list for at least a year, right?
Wrong.
And here we are, back to my unexpected wakeup call on May 12th 2018, not quite seven months after my name first appeared on the transplant list.
Fortunately for us the motorways are fairly clear at 6:00am on a Saturday morning, so as Katie drove north I started making phone calls to family. Although as I start with mum I knew could count on her to spread the news faster than I ever could. I can remember very little of the car journey, my thoughts awash with what was going to happen next; would I be fit enough for the operation? Would the kidney be suitable for transplant? Would the operation go to plan? What about my recovery?
It was around 9:30am when we arrived in Liverpool and no time was wasted in rushing me up to the ward and starting the tests required to confirm both my suitability for the kidney, and its suitability for me. Despite having had my blood taken every three months for nearly eight years, I still seriously dislike it, and know that I will never quite get used to that ‘little scratch’. Before the transplant they filled well over 10 vials to check the current activity of my immune system, whether I was fighting any illness or recovering from one; my general health; and the all important cross-match which determines whether the kidney is suitable for me. Cross-match is the final test used to confirm viability of a donor kidney for a particular recipient, cross checking blood from the donor and recipient to make sure the patient has no antibodies to the kidney. Potential illness and the need for a positive cross-match result are the main reasons that two people are often called in for any one kidney, ensuring that if the intended recipient isn’t suitable for an organ it can go to the back up. I had already been told that there was no back up this time; the kidney was so well matched, so I waited patiently for the results to come back.
When you are activated on the transplant list there are two main tests taken that will match you to a suitable organ when it becomes available. Firstly, donor and recipient blood type must match, which is the most straightforward match. Next comes tissue type, which is somewhat more complicated and relates to the human leukocyte antigen which is part of the major histocompatibility complex (MHC). The HLA is a collection of protein structures found in and on cells that are essential for acquired immunity from disease and allows your body to determine its own cells from foreign cells. The testing for transplant suitability matches six sites at which there are in total over 2500 different alleles, or versions of the proteins, and many more possible combinations, although some alleles are more common than others. The transplant list is points based, using age, time on the transplant list and various other things to dictate someone’s position on the list, however, the quality of the match, especially the tissue type match, outshines all with relatively few transplants matching all six alleles.
The reason for my short wait on the transplant list, and the lack of a reserve recipient, was that they had found a zero mismatch for me, that means, a full match on blood type and all six alleles of the HLA. I was lucky. This is not a common occurrence and kidneys will still be transplanted with as few as three matches at HLA sites, often with great success, but the closer the match, the less the chance that antibodies are created to attack the new organ, would could lead to it being rejected.
With all the tests done and the results now in, it was confirmed, I would be having a kidney transplant today. I was amazed to learn that a clear set of results didn’t prompt them to wheel me to the operating theatre, the kidney still wasn’t in the hospital yet. When it did eventually arrive after lunch, the surgeon came to let me know it was in the building and they would check it over for damage. I felt another hurdle appear in front of me and the operation. During the day I had plenty of time to think about what was going to happen, although didn’t spend much time doing so. The doctors and nurses at Liverpool Royal made it all seem so run-of-the-mill, why would I worry about it? I spent the day focussed on the tests, where I would be having my chest X-ray, how hungry I was, whether I could have a mouthful of water and generally quizzing every healthcare professional that came near me.
Finally, at about 17:00, with Katie and my family standing around my bed, I was wheeled out of the ward and up to the top floor of the hospital, where the operating theatres are. Lying on my bed in the ante room to the theatre I was surrounded by anaesthetists. Everyone I came across at that, the most nerve-racking of times, was amazing; whether they cracked a joke or just engaged me in small talk and inane conversations, I remember feeling that there couldn’t possibly be a friendlier group of strangers to be surrounded by. The moment came for the anaesthetic to be administrated. First a syringe of cold water was emptied into my veins, creating a most unusual sensation as it chilled the blood in my hand, then it was time for the anaesthetic. This being only my second general anaesthetic I was determined that when asked to count down from ten I would hold out to at least five. I didn’t even get close.
I woke up with beeping all around me, in an empty ward with a nurse sat by my bed. It was 23:00 and I was in the high dependency ward. The operation had gone well, but groggy doesn’t even come close to describing how I felt. I could barely move any part of my body, my throat was dry and sore, and my head was swimming with a mixture of morphine and the effects of the anaesthetic. I had lines in my arms and neck, a catheter inserted and a drain in the surgical site. I was lifted up and a pillow put behind me so that I could have a sip of water, having gone nearly 24 hours without a decent drink and well over that since I last ate. Once awake I didn’t stay put for long and was soon wheeled up to the renal ward, where my family were sat waiting.
Exhausted and somewhat delirious from the cocktail of drugs rushing around my body, I fell into a fairly unsettled slumber before too long. Unable to reposition myself I spent the night drifting in and out of sleep, occasionally reaching for my morphine button. Waking up on Sunday morning, I didn’t feel quite back to myself and any movement was difficult, although I still felt very little pain. I managed to eat some breakfast, my hunger overriding the difficulty of getting the spoon to my mouth. Next came the drugs cart. I didn’t count how many pills were given to me, but it took a few mouthfuls to gulp them down. Unable to focus on a book and unable to get out of bed I was glad when anyone called by the side of my bed, only to remember that my throat still hurt. The morning visit from the consultant to see how I was faring informed me that the donor was close to my age, 31, and that the kidney had suffered a physical shock. These two bits of information sent my mind whirling and brought into sharp focus the tragedy on the other side of my good fortune. A mother, father, partner, children; I would never know who this man left behind. Loved ones who, while my family were thankful of the success of my operation, were grieving for the loss of a loved one. Yet they had made the brave decision to allow his organs to be donated and change my life completely. In the afternoon, following a hearty lunch – my appetite was most certainly back – I had a few visitors which helped take my mind off things.
That night was more restless than the previous, the morphine starting to make me feel ill, and in the quiet, darkened ward I found myself picturing my donor, his accident and his family. Through bouts of sickness and my emotions riding high I waited out the night, still feeling trapped in my bed, pinned down by my various tubes and intravenous lines. When the nurses came on the first round of the morning I was taken off my morphine drip and given IV paracetamol, I soon felt better and slept the rest of the morning, with a small break to make sure I didn’t miss breakfast.
In total I spent six days in the Liverpool Royal hospital. After the first two days I felt like I would never be able to get out of the bed, let alone leave the hospital. However, milestones started coming thick and fast. On Monday the best I could muster was to stand by the side of the bed while an orderly changed my sheets. On Tuesday the nurses removed my neck line, one of the IV lines in my arm and the drain from the surgical site, leaving my catheter and a single drip attached to me. When two nurses appeared to remove the drain I was unsure why. I had never had major surgery before, and therefore had no idea what would be involved in removing a surgical drain. One nurse held the side of my abdomen, while the other pulled on the tube, the tube that I naively thought would be just under the skin. This was the most painful moment of my time in hospital. A surgical drain goes to the bottom of the wound, obvious when you think about it; in my case about 6 inches. A few days after surgery the flesh was starting to heal around the drain and therefore when pulled you can feel it inside. Still, the pain lasted all of 10 seconds and soon subsided; the joy of removing more medical equipment from my person far outweighed any discomfort.
With more of the trip hazards removed from me I was encouraged to try and walk. I managed about ten paces before struggling to sit in a chair, having to call for help to get back into my bed when the pain returned. By Wednesday I had lost the remaining drip and so my target for the day became to make it to the shower, nearly five days without a proper wash and I was desperate to feel clean again. I managed the shuffle to the shower and despite needing a little help to remove my socks I was able to wash under my own stream, being exceptionally careful not to tug on the catheter. Thursday finally saw it removed, having had to endure one for five days I don’t think I can express the relief at having it taken out. I was now free. Laps around the ward kept me busy, then a trip to Costa downstairs became the furthest I had walked in nearly a week.
As promised by a consultant the previous day, after six days in hospital I was sent home on Friday. I can’t say I wasn’t glad to be going home, but considering my physical discomfort, boredom and pain, I had enjoyed my stay in hospital more than I would ever have expected. The nurses in particular were fantastic, constantly laughing, joking and in a good mood, despite the tireless work and little thanks they seemed to get from many of their patients. They manage to make the most terrifying of procedures seem completely mundane and the most awkward of situations tolerable. Also, much though many people will complain endlessly about the quality of hospital food, I loved every meal, with plenty of options for a three course lunch, and even more hot meal choices for tea. Okay, so I didn’t brave the chicken dinner, but considering the kitchen has to feed nearly 1000 people every meal they do a damn fine job, and as if to prove that, I even managed to put weight on during my stay!
On leaving hospital I may have stopped being an inpatient, but I still needed to have two visits a week to clinics, with accompanying blood tests. Fortunately my blood results were all good, with the new kidney working well and functioning better than my own kidneys had done in over a decade, and that was all in the first week out. Recovery continued to be straightforward, with my discharge from Liverpool Royal to Wrexham Mealor hospital, cutting the drive for appointments down from over an hour to little more than 15 minutes. Seeing as I wasn’t allowed to drive for the first few weeks, this change also saved Katie and my willing family the same amount of ferrying me around.
The only procedure left was for me to have my stent removed. The stent is placed in the bladder and its function is to ensure that the tube from the kidney to the bladder, the urethra, does not close up as it heals. I won’t go into too much detail other than to let you imagine the easiest way to get into the bladder. Yet another uncomfortable procedure, but remembering back to the surgical drain being removed, it was a walk in the park. It was helped by the distraction of watching the process on a TV screen, seeing what the surgeon saw.
After the first two weeks I started to walk every day; at first 100m would exhaust me, by the third week at home I was managing 2-3 mile wanders, exploring the path network around the village, and by week five I was climbing Moel Famau, a 555m peak in north Wales. I accomplished this with another transplant patient whom I had met during my stay in hospital. It’s a fairly straightforward walk but the weather was appalling; we had a fantastic day, relishing the exposure to ‘real weather’, and by the end of it had planned to tackle Snowdon next.
Before long my checkups had dropped down to once a week, giving me more time reading, walking and generally trying to avoid the atrocities of daytime TV. The minimum time off work that my consultant would allow me was eight weeks; it absolutely flew by.
Everyone’s experience of a kidney transplant will be different. I have been exceptionally fortunate that mine has all been so easy to date, but it is not a cure, just the best treatment available for many people suffering renal failure. A kidney will not last forever, but the difference it makes to someone’s life is huge, allowing the freedom to enjoy food, travel, time with friends and family and the energy to live it to the full. This is the gift of organ donation, this is what you can give to someone. The thought of death is not one that any of us like to dwell on, but it will happen to us all, some sooner than others. My story is about a kidney transplant; every death in the UK could lead to two kidney transplants, that’s two people’s lives turned around. Liver, heart, corneas, skin, the list goes on. Making the decision to donate your organs following death, and making your family aware of those wishes, can change several lives for the better. While those close to the deceased will always mourn, I hope that knowing the good that has come from each tragedy makes their loss a little more manageable.
A year of firsts 