Life as a donor

My name is Charlotte, I am 37 years old. I am a marathoner, an ultramarathoner, ironman and kidney donor.

In 2015 we found out that my brother had end-stage kidney disease and was started on renal replacement therapy.  His life changed in an instant, no longer footloose and fancy-free he would now be governed by ‘The Machine’ in order to function with home peritoneal dialysis.  He was 37 years old.  Without a second thought, I offered my kidney.  If we were a match – perfect! If not then we would put mine into the pool and hope for the generosity of others and the karma of my good deed to find a match for him.

I am a keen runner and had just stepped up to marathon distance (+) events.  Living overseas in New Zealand, I was touched and pleased to learn of a reciprocal international agreement that the countries in which a living donor lives perform donation work up as specified by the recipient’s country donation standards for free.  I started my work up as soon as was possible.

I had been considering doing a full Ironman prior to the donation question.  My decision to enter was made when I learned of my brother’s illness.  I was determined to ‘share my spare’ with my brother and that he was going to have an ‘iron’ kidney. If the operation date should fall before the race – then I would be fit for him; and if after – I could give him an Iron kidney!

Choosing to donate changed my focus.  My Iron distance event now needed to deliver a fit and healthy, unscathed me at the end of the 140.6 miles.  Hydration and nutrition were now keys to my successful finish which was more than the red carpet, Mike Reilly and the finish line.  Many Iron distance events weigh you immediately before and after your race, a deficit or gain of more than 5% of your pre-race body weight means that you have not managed your fluid status well and initiates an immediate medical assessment at the finish line. Not being one to step on the scales much I now needed to really pay attention.

My Ironman journey became so much bigger than ‘just’ 224km – it was my athletic goal; it was vitally important that I nurtured my kidneys and health throughout the process and potentially it might be my only shot at such an endurance feat.  I wanted to do it and needed to do it right.

A series of events lined all my ducks up – I was lucky enough to win my race entry and coaching thanks to a local elite athlete, Dylan McNeice and his sponsors, Clif bar; I also won a nutrition session with a sports nutritionist and a supply of the on-course nutrition, Pure Nutrition. The universe was telling me that this was my race, and it was on. I have continued to use Clif bars and Pure Nutrition.

My ironman dream was really born out of a position of no skills and no idea!  I was a ‘runner’ and hadn’t ridden a bike since I was 10 years old.  Although I enjoyed swimming, my predominating swim experience was snorkeling and a bit of ocean swimming between neighbouring anchored boats during my year at sea.  The upshot of this reality translating into confidence and experience on the bike – the traditional time to ‘fuel up’ and enjoy the ‘rolling buffet’ of the 180km bike course was going to be more challenging by my lack of confidence taking my hands off the handlebars to access my nutrition and drink bottles.

Nonetheless, race day was fast approaching as was my growing excitement and fear.  A week out from the race I received a flurry of appointments and a projected transplant date for the following month back in the UK. Big week. Race day came. Full of all the ridiculous emotions that such a first race day brings came the responsibility to stick closely to the race plan – specifically the nutrition plan. It wasn’t the race I’d hoped for; high winds made for a challenging swim course which slowed the average age-grouper by 15-20mins, but I survived the swim.  I was knocked off my bike by another competitor’s flying water bottles and later got stung by a bee, but I managed to take nutrition from the aide stations on the move and I survived the bike.  The marathon – my favourite part of the day – I remember my rising excitement on the bike on the way back to transition – ‘I’m nearly an Ironman’! My run was challenged by a heavy monthly and 8-minute toilet queue.  At 30k I felt cold and shivery in 25 degrees centigrade and despite taking on fluids at each drink station I was overheating. I stuffed my sports bra and cap with ice and poured several glasses of water over myself I set off again. My support crew had made massive glittery signs reading ‘Do this for Charlie’ (my brother) and each pass of it brought a lump to my throat, goosebumps, and renewed focus.  The red carpet and Mike Reilly welcomed me with my heart full of pride and achievement.  I leaped for joy over the finish line (and almost didn’t land it)! Too exhausted to cry – my real race achievement would be measured when I hopped onto the finish line scales. Miraculously I had nailed it – negligible weight change.  I rang my brother, who had been following on the Ironman tracker app in the UK with the blubbing news that his kidney is safe and an Iron one! I was more proud of this than the race!

A few weeks later I was flying back to the UK with 3 months off work in NZ.  The month before the operation was dedicated to completing my work up with appointments to meet the renal physician’s; transplant surgeons; further extended tissue typing and cross-matching and the all-important consent.  On the morning of the surgery, I was suddenly struck by the enormity of the operation and the process and the first time in my life that I had considered mortality.  What if my brother died on the table? What if he suffered from rejection and the donated kidney perished and he was back on dialysis and the waitlist?  All of these questions I had been able to rationally work through in the psychologist’s assessment performed many months before suddenly replayed in my head and my nerves rose.  I’m a pragmatist and a doctor so very aware of the odds.  The wonderful transplant nurses calmed my nerves and I sought great comfort in knowing that one would be in the theatre watching our operations.

My surgeon was sensitive to my athletic desires and decided to change his usual incisions to one that he believed would be better suited to a fuller recovery with a better return of core strength; albeit a more painful and slower recovery from his proposed approach.

The month of appointments pre-operative kept us busy as a family back and forth to our transplant centre 50 miles away in Birmingham.  A tradition of running a race with my home running friends needed to be upheld and the only compatible race was a 50km trail ultra.  This seemed like a great idea – I’d ticked off the Ironman and could do the ultra pre-op too!

The post-op period

The operation was a success. The Iron kidney had some mean housekeeping to attend to and peed gallons for the first 5 days sorting out its new host.  My brother and I now share similar creatinine values and he is now captain of the tennis team.

It hurt initially. I woke from anesthetic with ”ow!” This lasts about a week; the PCA (patient-controlled analgesia – iv morphine) was connected for 24 hours and then taken down and switched to oral pain meds.

The pain meds work very well but will constipate you – make sure you have some laxatives available and use them, as with no core strength pushing on the loo is not possible.

My bladder went to sleep (urinary retention).  You are catheterized for the op (put in whilst you are under) and this is removed before you wake from anesthetic. For some, their bladders can take a little while to spring back into action – with 1 litre of Sidney’s finest work in mine I was about ready to burst before the seal finally broke and my bladder woke up.

The realities of the immediate postoperative period for me having just completed a grueling 6 months of Ironman training, race and ultramarathon were huge.  I was exhausted.  I slept 20 of the day’s 24 hours.  This epic exhaustion was my reality for 10 days or so and slowly improved.   As the weeks and months progressed so did the energy levels.

I was counseled that there are several landmarks in recovery.

My core took a beating and being a little lazy historically with all my strength and core work I needed to factor it in and repair myself.  80% of your muscle re-knit is completed by week 6 but it will take until week 12 for the muscle to be fully repaired.  Core work pre-op? Important adjunct but not too much abs work.  A very muscular abdominal wall is a harder surgical canvass than a less muscled one.  Strength and core work was very important to me in regaining my pre-op form.  As my abdominal muscles had been dissected my posterior core had to work twice as hard to maintain my posture and I did find that I had some back issues early on as a result.

Energy levels were reported to continue to improve until the 6-month mark and a year was touted for a full recovery.  Rather arrogantly I had assumed that as I was so fit that the quoted recovery times would not be applicable to me; I’d even flown my bike back with me hoping to join my cycling buddies for a ride or 2!  I found that the quoted recovery times were accurate for me.  I can’t 100% say that there wasn’t a supra-tentorial element to my recovery- I felt considerably different after the 3 months, and 6 months and year milestones.

Where am I now?

We are 18 months on and both mine and my brother’s creatinine is a respectable 100.  Since the operation I have run 2 5km (pb and 1st woman x2); a night trail 10km; an 18km trail run; 3 half marathons (1 x road; 1 x trail; 1x mountain trail); a road 25km; several 3km ocean swims; 3 Olympic distance triathlons and a 70.3 half iron triathlon. In 2 weeks I will be running a 36km trail race and in 2 months another 70.3 half iron triathlon.  I have surprised myself thinking back to calculate that race tally – that’s a full calendar even if you didn’t have a big op and are operating on one kidney!

What have I learned?

I found it hard to come into my fitness again in that first 6 months.  There is a multifactorial component to this though- I’m working a much busier job than the one I left for the operation and I was iron fit pre-op – the fittest I have ever been, ever.

I need to be really vigilant with hydration – I really feel it if I under do it.  I now run with my hydration pack if I’m going to be out for more than an hour. When I’ve messed up my hydration – I feel really exhausted and headachey.  I’ve treated myself to a very comfortable Ultimate Direction running vest that can carry 3.5 litres. Now if I feel like getting carried away on the trail – I can do!

Finish line expectations are different – my focus is not gut-busting and time-centric but a successful course completion with a strong finish where I’ve managed my hydration.  It does mean that I have had to adjust my thinking somewhat.  I’m sure I will continue to learn and improve my race strategies and see a return to my 2 kidney form.  I also have a really positive springboard in which to extricate myself from the long run/ride blackness of negativity which we can all face from time to time.  When the mind screams ‘quit’ I now focus on the celebration of my health and fitness and the opportunities such afford me.  I think about my recipient’s health and fitness and the new lease of life that it affords him.  I think about the fantastic minds trialed the concept and refined the process of organ donation and the fabulous human body for even being able to have this discussion. What a marvel!

I will never take NSAIDs (non-steroidal-anti-inflammatories) such as aspirin, ibuprofen, diclofenac.  Common and readily available these tablets are often used to ease the niggles and injuries that we pick up on route.  These can cause renal damage and now there is only one Sidney (the single kidney) I need to look after him.  I am more careful about what I get up to and have made a few personal decisions about the activities that I will now undertake – I’m less likely to climb aboard the bucking horse and will opt for a more sedate one; I decided that I won’t take boxing any further than sparing in the gym; I have decided not to take up mountain biking and that Maraton de S’ables is off my bucket list.

My take-home messages

Donate – do it – it’s a truly wonderful thing.

It is ok to feel vulnerable and the weight of your mortality before you go into an operation. Any operation.

It will take 6 months to a year to feel fit again.

It hurts like heck post-op for about a week. Pain is temporary.

You will sleep like you have narcolepsy in the immediate post-op period.

With a little consideration to your Sidney in terms of hydration, you can enjoy all your pre-op activities again.

I do believe that my new considered holistic respectful approach to training is actually the approach I should have adopted from the get-go of my fitness journey.  How can we expect the best from our bodies if we neglect to adequately hydrate, feed or rest them?

All of the tests, the discussions, the nerves, the pain, the journey back to fitness – pale into insignificance against the sight or knowledge of the opportunity of new life your gift breathes back into your recipient.  No words can ever adequately describe that pure joy.

What’s next?

I’m currently training as much as I want to and that time will allow me to.  I’m trying to do a HIIT/core/strength workout at the boxing gym x2/week; run 4-5/week; bike 3/week and well – I’m not very motivated at swimming in winter.. hopefully that I will change with the change in our seasons!

What’s next..? well, it seems only right and proper that I should do another Ironman…

I am very happy to discuss all and any of the process with anyone – just send me a message!