New kidney transplant like new set of batteries! 

New Kidney....New Future!

 

2002 First kidney transplant (K1) thanks to my amazing sister Sally Bornhoft

Last 2 years living with end stage renal failure, ended up on dialysis in April 2015

2015!!! Incredible gift of life with a second kidney transplant (K2) from donor list!

LATEST UPDATE. Just back from Prasonisi! New kidney performing well - feel incredible to be normal again. This gybing shot was taken 7 weeks post transplant...Being back on the water and feeling vaguely human after 2-3 years, feels incredible. I haven't really free sailed for 2 years, so I intend to work much more on my own sailing in the future and will also have even more energy of all our forthcoming Windwise sessions for 2015 and beyond! 

 

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As many of you know, I have lived and worked with a genetic kidney disease for the last 15 years. 12 years ago my kidney's failed and my amazing sister Sally gave me a kidney (K1).

Whilst this doesn't cure the original disease, Sally's amazing kindness and gift of a life enabled me to live, work and enjoy life to the 'full' over the last 12 years - we've have been to some incredible places, had wonderful experiences and made the most of life. None of this would have been possible if it wasn't for Sally.

Sadly, over the last 2 years, Sally's donated kidney (K1) started to slowly fail and over the last 18 months, despite somehow managing to continue working, I have been on the kidney transplant waiting list.

AMAZINGLY IN JUNE THIS YEAR I RECEIVED A NEW KIDNEY!

It's like getting a new set of batteries! I'm now right back up to speed and feel amazing! Read the full story below.......

Living, windsurfing and traveling with kidney disease and dialysis! 

I have spent the last two years, living and working running UK and overseas clinics, NWF shows and seminars with end stage kidney failure, which has been pretty tough with many limiting symptoms (see Kidney Failure The Facts below). You're incredibly low on energy, oxygen, strength and constantly in a toxic, painful uncomfortable sate. But somehow, for me at least, keeping active, positive and motivating others was 'my way' of dealing with this chronic condition. Although I tried to delay going onto dialysis as long as possible, directly after our recent Windwise trip to Bonaire in April 2015, my sisters donated kidney had completely failed - daily dialysis was the only option. I opted for PD dialysis, which is 9 hours EVERY night until you get another kidney! This is a permanent catheter into your peritoneal, which cannot get wet or infected. Living on PD dialysis is not pleasant, it's very restrictive and only a temporary solution, so long term I desperately needed a new kidney.

From our trip to Tenerife in Feb to the end of June, I had to run courses without getting the dialysis catheter wet - So no falling in! I managed over 3 months on the water, and only got wet above the waist once, so no playing around but it enabled me to keep coaching! We even travelled to Alacati in mid June - complete with full portable dialysis unit!

A couple of amazing friends (you know who you are...) had incredibly offered to donate a kidney, but one didn't work out due to matching issue and the another kind friend was being lined up as a possible donor for this Autumn........BUT THEN WE HAD THE CALL FROM QA HOSPITAL IN PORTSMOUTH.. a new kidney had come up from the transplant list!!!!!!

New Kidney Transplant 30th June 2015

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I was called at 3am in the morning with the chance of a new kidney from a donor card carrier. It is truly humbling and life changing, I cannot convey or describe how grateful I am for the kindest gesture from the donor and his family. Pretty much all the debilitating symptoms suddenly go, the new kidney (K2) has settled in well and it is literally like getting a new set of batteries! 

I'm a zillion times better than when I last saw you.........So watch out!

Thank You

We're now able to plan for the future, get back on the water and the hassles, constraints and hurdles of especially the last 2-3 years have been lifted. It is both incredible what the NHS at Portsmouth surgical team have done for me, and the gift of life I have received. As you can imagine the last few years has been an incredible tough in so many ways, but if it wasn't for my sisters original kidney donation, my truly gorgeous wife Karen, my loving family, wonderful friends, and the generosity and loyalty of our Windwise clients and support of my sponsors,this whole journey would not have been possible – THANK YOU ALL!!!

 

Back On Board....The future looks bright!

Whilst I sadly had to miss our Windwise Fuerteventura trip due to the op and recovery (Tom did a fab job standing in and continuing the Windwise Skills Training System and mantra's). Amazingly I sailed every day in Prasonisi 5th-12th Aug and we are all set for Cornwall, Lanzarote & Mauritius this Autumn! I now have far more energy, drive and the luxury of being able to plan further ahead - so lots more to come! 

I'm both lucky and eternally grateful to have this 'second' chance. I look forward to sharing this with you on our Windwise adventures -  I can't wait!

Kidney Failure The Facts

The symptoms of kidney failure are pretty extensive and incredibly debilitating - you miss them when they fade away! For the last 2-3 years, I'd been at end stage (4-5) renal failure, this means suffering from continuous fatigue, anemia with 35-40% less oxygen capacity than normal (due to low red blood cell production), extensive muscle mass/strength loss, severe cramps, constant itching, always feeling cold, constant tiredness, gout, sleeplessness, massively restricted diet (low potassium / low phosphate & low protein), lack of concentration, risk of infection and no sense of 'well being'. Most kidney patients don't or can't work, barely exercise, they look 'grey & yellow' and feel awful. I too had these symptoms, felt and looked this way and had some pretty dark times. Between all the trips, coaching and just keeping going, I spent about over 60 days in and out hospital with treatment and tests over the last 3 years. Although you're never 'cured', thanks to my new kidney (K2) the symptoms have gone!

"Re-Framing" & "Filling The Void" 

I coped with my disease (and everyone is different), by what I call 'RE-FRAMING' – Which is basically constantly putting yourself in a different mind space to deal with set backs/difficulties/challenges and fill the the 'void' between where you are and where you want, hope or feel you should be. Whilst it was a real struggle mentally and physically, I was determined to keep as active, positive and as fit as I could be with the symptoms. Basically I tried to be the best kidney patient you could possibly be. It has been tough and challenging, not just for me but for my amazing wife Karen, my kids and family. For those of you who know me well could tell I wasn't myself - but thank you for supporting and sticking by me all the way - it truly made a massive difference to me!

 

Human resolve and our minds are a very powerful tool and sometimes when you're in the biggest dip you're actually quite close to making a positive change - it happens in life (and windsurfing) all the time. It's particularly hard when the 'void' between where we are and where we would like to be or feel becomes really hard work or seemingly impossible. I feel and see that the 'void' is what actually drives and influences most people, most of the time. How we fill and deal with the 'void' is what defines us.

Those who can fill the 'void' with a realistic and positive outlook, lifestyle, diet and activity tend to blossom. Those who struggle and fill 'the void' with negatively biased lifestyle/substances/and limiting beliefs tend to suffer....I think windsurfers are pretty good at the former - windsurfing tests us all at some point and it takes a certain type/attitude to stick with it, preserve and be the best you can be! That has to be a good lesson for life too. When I was diagnosed with kidney failure, I was competing, super fit, healthy and I suddenly found out I had an auto-immune disease that affected my kidneys. So I had to 're-frame' and fill the 'void' to get through some incredibly tough times. Being on the water and motivating others helped me to get through it. This new kidney will hopefully move the goal posts and I can fill the 'void' from a stronger, healthier position! It truly is a gift of life, opportunity and unexplainable change. So, onward and upward!

Sign Up For A Donor Card!

If you would like to find out more or support the national organ donation programme and truly make a difference, then seriously consider signing the national donor card. Although people don't like to talk about a organ donation, it can save many, many lives – I'm proof that someone's generosity and legacy can save, impact and change lives! Equally, like my sister, you can be a 'living donor' and donate to family, friends or even complete strangers who are in desperate need for a transplant. Everyone can live perfectly well with one kidney and 'living donors' are some of the most incredible people on this planet. Intriguingly it's said that living donors have a higher life expectancy (compared to average) as they tend to look after themselves post donation and they feel an incredible sense of purpose and value in life due to their selfless contribution to the wellbeing of someone else.

 https://www.organdonation.nhs.uk/register-to-donate/

 http://www.kidney.org.uk

 

Support The National Kidney Federation – Karen Bornhoft's Tough Mudder!

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If you would like to support the National Kidney Foundation, Karen Bornhoft and her intrepid team are entering the Tough Mudder on Sunday 4th Sept to raise money for The National Kidney Federation, if you would like to sponsor then go to:

https://www.justgiving.com/Bornys-Warriors/

 

2016 and beyond!

We will be announcing our 2016 Windwise sessions very soon. With a new set of batteries, they promise to be even more productive, adventurous and rewarding for you all!

 

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# Graham ORiley 2015-08-17 09:37
Hi Simon,

Wow that is a bolt out of the blue I didn't realise your condition. You are truly an inspiration to us all.

You were a great windsurfer with your condition, what are you going to be like now!! Watch out everyone no let up's on your lessons now!

Good health to you.
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# SB Bornhoft 2015-08-17 14:46
Thanks Graham. The new battery is going well and a huge difference to the past - so yes, watch out! Look forward to sailing with you soon. Are you heading to NWF - If so come and join Team Windwise...All the best, Simon
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# SB Bornhoft 2015-08-03 16:57
Thanks John. I have every intention of falling in A LOT to make up for last couple of years...
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# John Pattison 2015-08-03 16:49
I was so pleased to hear the fantastic news Simon. You can get wet now but it is not compulsory. All the very best John
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# Brian Roake 2015-07-31 00:27
Hi Simon,
I was totally unaware of your circumstances. A truly incredible and remarkable gift from your sister and now a donor. So pleased for you and all your crew. Wishing you a speedy recovery.
Best regards
Brian
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# SB Bornhoft 2015-07-31 18:14
Hi Brian, Thanks for that, it's been a rough old, time, but we can only do the best we can do, with what we've got - and there is always someone worst off. So I'm lucky, grateful to be through the worst of it and appreciative of the second chance - Plan to make use of it. No doubt see you at NWF. All the best Simon
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# drakey 2015-07-30 21:37
Simon,
That's wonderful news. I am ashamed to say I didn't even know you were unwell. Good on you for keeping it all going.
My sister, who is coincidentally also called Sally donated one of her kidneys last year. I hope it helped someone in your position.
Hope to see you in Cornwall.
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# SB Bornhoft 2015-07-30 21:47
Hi David, that is a coincidence! Also, how are you doing since I last saw you - I really hope you;re doing okay??????? Hopefully see you on the water sometime? All the best Simon
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# Liam g Wade 2015-08-16 10:59
Fantastic and inspirational
Wind and Waves a plenty for you here :)
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# SB Bornhoft 2015-08-17 07:58
Hi Liam. Thanks for message. Real game changer so all looking good! Are you still windsurfing? I miss you! Would be great to catch up on a board soon! Lots on the go for 2016!! All the best
Simon
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# Liam g Wade 2015-08-24 21:13
Still on the water Simon ,great windy summer here on Ireland's West coast.
Very welcome to come over for a visit anytime.Beach 5 mins away....
Galway is a great please. Within driving distance some great wave beaches also.:)
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# SB Bornhoft 2015-08-24 21:17
I do enjoy Ireland I did one of the very first ever windsurf trips to West Coast a long, long time ago. We shall return at some point...Hopeful ly catch up there or somewhere else warm and windy! All the best Simon
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