Serendipity?

Today was my third trip back to Addenbrooks to continue the investigations to see if I am a suitable live donor for Mr rGr.

Bloods, urine samples, X-rays, ecg and ultrasound done.  Today was all about eGFR….the filtration rate of my kidneys.  Basically how well they are functioning.  

So an early start to get to outpatients, bloods done, pop in for my radioactive injection.  (Mr rGr was slightly disappointed it didn’t glow flurogreen…). Cannula inserted, then up to the live donor office to drop off urine samples.

My co-ordinator wasn’t available straight away so another one sat with us for a few minutes catching up.  We were happily joking about our situation.  Mr rGr stating that “with any luck I’ll get the call and won’t need hers”, at which point his phone rang.  He looked at me it’s Addenbrooks ringing me….. on the other end was Jim , my co-ordinator saying, Simon we’ve found you a Kidney!

You can imagine the state of or our jaws…… how long do you think it’ll take you to get here?

“Well.  I’m sat out side your office, so about 2 minutes”

I’d love to say that I’m writing this now with Mr rGr happily in recovery, and sadly that’s not so.  

Finding a Kidney is the start, then they check the recipient to make sure you’re ready to accept and healthy to go to op.  They also have to take receipt of the organ and check it out.  Sadly while on paper this looked like the perfect match, further examination showed the kidney to be too damaged to proceed.   

Quite the roller coaster, focus on one then the other, shock, excitement, denial, acceptance, grief  I suppose (we’re gutted!).  

I have to thank rGr-son for his insight…”You must be near the front of the waiting list… this is great news”.   

We truely hope the other transplant Patients waiting today got lucky and are on their way and can’t wait until it’s us one way or another.

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Living donor…..,

Are you a donor?  Have you registered? Discussed your wishes with your nearest and dearest?

 

i am. I have. And now I am planning to donate a kidney.

Mr RgR has reached that stage…. we’re 6 months on the transplant waiting list, about to kick off dialysis to keep him alive and in that hiatus if waiting .

So today I visited my living donor office and started the tests.  Round 1 urine bloods, blood pressure, tissue typing  ecg and chest X-rays.

As Jim told us there are 2 questions to be answered  an I healthy enough to undergo the operation  and do I have a suitable kidney to donate that by doing so won’t adversely impact my life.

Mr. RgR would rather I didn’t donate, we’re still hoping to get a deceased donor. But that is in the lap of the gods .

It is slightly terrifying but I can’t imagine the alternative so for me it’s the right thing to start the journey.  I’ve always felt that this would be inevitable but the tests will tell us.  This is a few months of tests so more to come .  Frankly I’m proud of the fact I didn’t faint when they took vial after vial of blood today (thanks to the expert administrations of Tony who swears it was his first day on the job!)

If you haven’t registered as a donor after you die yet, think about it, talk about with your loved ones.  What would you do if they needed that help?

 

 

 

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XRunner Survivor

This gallery contains 6 photos.

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All Change

Do you ever have that moment where you feel that the whole world is spinning madly around you?  The one where you feel like you are the character on film slowing down watching it all blur as you have that moment of clarity?

Yep – had that … in spades over the past few weeks!

So much change, so little time.

It’s ironic really.  Mr rGr and I have a mantra that is all about squeezing as much as possible out of every second.  But we also know how important it is to have that pause for breath.  That pause and acknowledgment is absolutely as important if not more so, to really be mindful of everything and also take in some calm, make some adjustments before we dive in again!

Over the past few weeks, we have had some amazing trips both with fabulous friends and family.  Also a wonderful european road trip together, starting us on the road back to just being a couple again.  We packed teenR off to university with a good sendoff.  In the background I have changed jobs, Mr rGr has restructured his business.    Mr rGr’s racing passion with Time Attack UK closed out his racing season with a round win after two traumatic rounds with major mechanical failures.  We’ve acquired Farrah Fiat to the rGr auto fleet, started building Mr rGr a proper man-cave so that there’s room for all the automotive developments.  Oh and I’ve started learning Pole fitness!

So…. you can understand why I feel I am spinning literally and figuratively.

image image

This morning is definitely one of those calm ones to be mindful and share that.  Every opportunity we have to be thankful and grateful for this amazing life is one we take with great joy!

Yesterday I drove to my new job, smiling.  Enjoying the sunny drive with the roof down.  At work, while the chaos whirled around, I enjoyed the focus and energy.  There is such a hopefulness towards the great possibilities we can get done.  Last night grocery shopping, Friday steak night and a family phone call closed out another incredible week.

Today, I know we have another busy weekend, and yes that takes energy too, but I sleep well and feel truly alive so all that effort and dizziness is so so worth it!

Your life is yours to live as you choose, are you really doing yourself justice and living it the best that you can?

 

Club RWD Round winner

Club RWD Round winner

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..more madness…. staying fit to donate a kidney…..

My journey is full of so many twists, turns, up and downs.  My path is never straight, flat, easy or boring!  Even if I swore blind that I wanted it to be; I am my own worst enemy as I put more challenges ahead to aim for.

I am middle aged!

I am getting older and slower!

and YES and I am losing my sanity!

I have been talking about doing the Rat Race Dirty Weekend at Burghley for three years!  Tuxman would not allow me to enter on my own.  I am not entirely clear if that is fear for my safety of for that of others (probably both!)

This time, equally unhinged (I hope) friends have come up trumps to take part with me.  

For that, their madness bravery and commitment I give you “Team Insane”:  “Screw loose” Steve, “Idiotic” Ian,  “Beserk” Belle, “cracked”  Tim, “Erratic” Emma, “Lunatic” Lee and me “Deranged” Dawn.    

For the uninitiated: this delightful event will see us tackle 20 miles around the Burghley estate, split into muliple obstacle zones with over 200 obstacles.  There will be water (loads, there’s a huge lake to get across), mud (glorious mud), the worlds longest monkey bars (my shoulder sockets ache just writing that down), and much more.  Some of my wonderful pals have already achieved this – you know who you are and so you know – I admire that and am desperate to tick this one off my list too!

To appease my lovely Tuxman, I will be training towards this!  I can run distance, but probably couldn’t hold my bodyweight past 2 handswaps on the monkey bars!

As usual I really want everyone to know why I do these mad things! 

Aside from hoping for beautiful glowing skin post mudbath and working to maintain my fitness so I am ready to donate a kidney to Tuxman in the coming months; I really want everyone to be aware of the dangers of Kidney Disease.  It is a silent killer!  

This awful disease affects so many many people, a huge many who are completely unaware.  Often someone you know who has had a heart attack or a stroke or suddenly collapsed with lost kidney function, has probably been living with a Kidney problem far far longer than they were aware.

Interactive kidney disease health check  (Source : http://www.kidneyresearchuk.org)

Around 3 million people in the UK are under threat of chronic kidney disease, many of these people are not aware they have the condition. This is because there are little or no symptoms until the disease is quite advanced and can often come as a shock to those who are first diagnosed. Kidney disease affects anyone at any age although certain factors may mean you are a greater risk of developing the illness.
Use KIdney Research UK ‘s health check to see if you’re at higher risk of developing kidney disease and should have your kidney function checked.

https://www.kidneyresearchuk.org/health-information/kidney-health-check

All information given in the interactive health check is not stored by Kidney Research UK or any third party.

These days for those that have it and need dialysis or transplant, most will have to turn to friends, relatives and strangers for the possibility of a live kidney donation.  So many people are waiting and there are not enough people who have expressed wishes to donate organs before they die.  

If you have ever considered donating organs after you die, please consider signing up  http://www.organdonation.nhs.uk/

You can of course consider a “live” donation of a kidney http://www.organdonation.nhs.uk/how_to_become_a_donor/living_donation/living_kidney_donation/

On my journey towards May 2016,  I will be tackling other events to help me get there, including:  mini mud races, longer running races and other things… hopefully more entertaining blogs (or at least ridiculous photos humilitaing myself to share!)  

Thank you for reading.

If you’d like to help support the research into Kidney Disease, you can donate here: https://www.justgiving.com/Dawn-Roberts7

More of this!

More of this!

  

Unfortunately less of this!

Unfortunately less of this!

   

 

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Rain stopped play!

First event in the Time Attack UK 2015 calendar at Cadwell Race Circuit done!

We got set-up and of course priority went to the Green Machine Hulkster! 

As long as Hulster has a spot for the night!

   

Yes we were kipping in the back of the trailer overnight!  Steak still on the menu and a sweetner for dessert (welldone Cadwell!)  

  

will this make up for having to sleep in the back of a trailer?

 

Saturday went well, good weather, lots of adrenaline and race track smells!  Tuxman good warmup, better practice and great qualifying.

Flying

  

Heading up the mountain

  

Gooseneck

However rain stopped qualifying after a 40 minute wait and assessment.  When you see the safety 4×4 aquaplaning, definitely a good call!

 

it’s raining!

  

   

So with all that a succesful event and a win for team TuxmanRacing

Click me to see all Podiums

For more pics from the day  

 Race report http://www.timeattack.co.uk/round-1-cadwell-park-report-25-04-2015/#sthash.TWAbMpA4.dpbs

flat out racing photography https://www.facebook.com/simon.b.roberts.1/posts/10152692604826688

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….and so it begins but this time the shoes are Mitchellin Cups!

I started my blog a while ago to document my journey losing weight and learning to run!  Running became a way to promote understanding and awareness for Kidney Diease.  

This awful disease affects so many many people, a huge many who are completely unaware.  These days for those that have it and need dialysis or transplant, have to turn to friends, relatives and strangers for the possibility of a live kidney donation.  So many people are waiting and there are not enough people who have expressed wishes to donate organs before they die.

My wonderful husband of 24 years has chronic kidney disease a variant called igA Nepoprathy or Bergers Disease.  It is not curable!  We feel we are the lucky ones as it was spotted in 1990 when he had a motocrossing accident and needed knee surgery.  I say lucky, because we have had it monitored since then, lots of drugs to control symptons, regular checkups and lots of research!  

Over the years we have managed to slow down his decline in kidney function through hard work, exercise and diet mainly. At the start of 2015  Mr RgR aka Tuxman’s kidney function had dropped to 18%.  15% is when the live transplant testing process begins in earnest and dialysis.  Again we feel lucky as Tuxman has grown used to his decline in  function over many years so can mange on much lower levels than say someone who suddenly has a dramatic drop.  (Not unlike someone who learns to cope with longterm pain).  This means that putting dialysis off as late as we can has been possible.

My blog was a way to record my running journey towards the London Marathon while I raised funds for Kidney Reaserch UK.  

This morning we are starting a slightly different journey.

With kidney function getting down to that critical stage, we have over the past few years forced ourselves to take every opportunity and really live in the now, not putting off things we thought we might do in much later years.

One thing of the list for Tuxman was to race his much lover Noble M12 Sportcar!

Anyone who knows us, knows that we are petrol heads and “The Hulkster”, Tuxman’s Noble has been with us for a litlle while now going through many changes each year.  Last year Tuxman took part in a new type of motorsport for the first time.  TimeAttack!   

We loved it!

Everyone made us so welcome.  The old racing motoroil smells, activity around the track and adrenaline hanging in the air on raceday was amazing.

This weekend the 10th season for the UK begins and Tuxman plans to run a full championship season!  Are we a little bit nervous?  Excited?  Yes and Yes!

Tuxman has been packing his kit for the past two weeks, and has been a times a little challenging to live with.  (Grin!)

We love him for it and today we head off the Cadwell for scrutineering and get checked in.  The first round tomorrow is hosted along with Modified Live.

Hoping for sunny dry weather, but packing English style..(jumper, wellies, bikini…)   let’s see what my old man can do!  Driver entered!

  

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