Life with kidney failure; a guest post by my friend Jamie

Like it says, the following was written today by my friend Jamie. It needs no further introduction.

So, as you will have seen Geoff has taken a big step into becoming a live donor for me.  He asked whether I would be willing to write a guest blog, to explain my story, so here it is.

When Geoff messaged me to tell me he was willing to become a live donor for me, I can’t begin to tell you the emotions that come rolling over you.  I showed my mother the message and cried.  I think it’s a massive decision for anyone to even think of becoming a live donor, let alone actually go ahead with it.  It’s a wonderful gift of life!  It’s overwhelming.

To take you back to the beginning, this journey has been one big emotional rollercoaster.  I won’t bore you with the full history but the first signs of problems appeared in 2016 after my trip to Kilimanjaro.  I should have returned in the best shape of my life, but extreme fatigue and loss of appetite wiped me out for months.  But the New Year arrived and I started to recover my fitness, so much so that by the summer of 2017 I was back to the level of fitness before Kilimanjaro.  I was keen to take on more challenges, indeed I’d already applied for the Cardiff Half Marathon in October.

But then extreme fatigue and loss of appetite came back, as this was happening at the same time as a stressful period in work, I thought nothing more of it.  Blood tests were taken, visits to the doctor occurred regularly and trips to the hospital were seemingly happening every other week.  And then the moment that changed everything happened.

Out of the blue a Renal Nurse came to see me in the house to set out “treatments,” basically I had reached chronic kidney disease stage 5, i.e. renal failure, and the only treatment available now would be a transplant or dialysis.  She then went on to explain the various different types of dialysis and transplants, but in all honesty my mind was screaming “my life is over.”  I wrote a short story about this moment, it is very dark but captures the feelings and emotions perfectly, friends have said it’s very powerful.

Since that moment life has changed so much, I have good days, I have bad days.  I’ve had suicidal thoughts, I’ve had moments when I’m up for this fight, at the moment I’m determined to turn this situation into something positive.

People who meet me now all say, “you’re looking good,” if only.  Or the other one I get regularly is “do you feel better after dialysis?”  To clarify dialysis can only do 10% of your kidney function, and that, in my case, is only for 9 hours a week, basically dialysis is keeping you ticking over, no more.

So that’s where I am, dialysis happens every week on a Tuesday, Thursday and Saturday.  I’m still waiting to get on the transplant waiting list.  My life feels on hold.

This glorious summer is great, but it also leaves me sad.  I loved being in the outdoors, especially walking and cycling, but as I get out of breath just going up the stairs these days I can no longer enjoy our beautiful country.

But I will keep fighting and bounce back, and when I’m better I shall do a challenge with Geoff, cycling or walking, and we’re going to have a great time!

Geoff here: I've removed moderation on my blog for a while. Feel free to respond to Jamie and he will, if he wishes, be able to reply.

Bless you Jamie.

Olight H2R torch/headtorch, important update to review

I had a quick night out camping last night.

Waking at 1:30am I thought I'd see what the torch was like in proper darkness. I switched in on and selected the Turbo mode (2300 lumens). It pierced the darkness.

I put the torch down in the tent, lamp pointing down so as not to dazzle myself, and got up on my knees to better assess the distance it lit. It was amazing.

Taking the tent down this morning I noticed a hole burnt in my groundsheet. It took a few minutes for me to realise what had happened. In the less than two seconds the torch was on my groundsheet it had burnt a round hole clean through it. When I unpacked the torch at home I found residue of the groundsheet fabric on the lens. Trying it again I realised how hot the lens gets in Turbo mode.

It's important to state there is no warning of this anywhere in the torch instructions.

I am not pleased.

I WILL be informing Olight.

It is important that anyone reading this reads the further update here.

June wild camp on Kinder

In and amongst stuff to do with my transplant journey and prep for France, there's the small matter of my trying to get a wild camp in every month of the year. I'm not at all sure I'll manage a wild camp in France, but I'll try. But in case I don't Islay and I dashed up to a favourite hideway on the lower slopes of Kinder last night. Nowt much else to say except that Islay recognised it as the location of her very first wild camp a little over two years back. She's grown a lot. Then she sat barking at me as I made camp. Last night she sat contentedly...and watched. She's a treasure.

Nice little trip.

Smile.

My journey as a potential living kidney transplant donor, part 4

Today I had an hour long interview with Suzanne, my living transplant donor coordinator, over the phone. She took great care in checking information she had on me and talking me through the rest of the process, or workup as it's called, towards, hopefully, a transplant.

The information was comprehensive and echoed much of what I'd learnt already but with plenty of time for me to ask questions. I found the process helpful and reassuring.

Suzanne's posting me some information and bottles to get samples for blood cross matching. When I get these I need to contact my local hospital to have the samples taken. It's hoped this can be done before I go to France on the 15th so I can post them to Suzanne. There then follows tests which can take up to three weeks, and an assessment will be made as to whether Jamie and I are a close enough match. All this will go on while I'm cycling through France. It's really good to know those five weeks won't be "wasted" time in this process and all credit to Suzanne for getting things moving along in anticipation of my trip.

I await the parcel...

...and, as ever, send Jamie my best wishes.

To read the whole story go to my kidney donation page which you can access on the left side of this blog.

Olight H2R Nova torch/headtorch, a review

I was recently approached by Olight to see if I'd consider reviewing one of their products. I agreed, having first checked out some of their stuff on the internet. I was offered a small selection of their products and went with the H2R Nova since it seemed best suited to my needs as a hillwalker and backpacker and, thereby, of most interest to readers of this blog.

The H2R is a small handheld torch which comes with a headband, allowing its use as a headtorch.

Opening the package I first checked the weight of the torch. For backpacking I currently use a Black Diamond Spot headtorch; a now superseded model, which weighs 91g. The H2R weighs 102g on its own but 172g including the headband.

I confess to feeling a little sceptical given the weight and cost (it's widely available for around £70). However, further examination revealed it far exceeds the performance of the Spot. This may be an unfair comparison as will be seen, it felt valid though since the Spot is the torch I have most recent experience with.

On first look it's clear that the H2R is a well engineered piece of kit. It looks and feels high quality, having a machined metal body.

The model I'm reviewing is the Cool White version. it's also available as Neutral White which is slightly less powerful.

You can read the detailed spec of the H2R here on Olight's website. I'll try to give an overview of features and usage.

The torch is powered by a rechargeable battery and comes with a neat, USB charging lead with a magnetic connection to the torch. Spare batteries are available.

There's also a pocket clip supplied.

There are 5 light output settings ranging from Moon, giving out just 1 lumen, for use in darkness where only minimal light is needed, to Turbo which gives a staggering 2300 lumens. Don't point it at your eyes in this mode! Turbo can be enabled quickly by tapping the switch twice. Between Moon and Turbo are three default brightness settings which are easily accessed when you turn the light on. By the way, my Spot has a maximum output of 200 lumens.

An interesting feature is the SOS mode. Tapping the switch 3 times has the torch emitting 3 short, 3 long then 3 short flashes (morse code for SOS) until you turn it off. Clever. Hope I never need to use it.

Since being sent the torch I've taken it on two short motorhome trips and an overnight camp.

The torch proved more than capable on van trips for late night, pre-slumber wanders with the pups. One evening, Chrissie wore a Petzl Myo XP we had in the van and we found the least powerful of the three standard settings on the Olight gave more light than the most powerful on the Petzl.

On my overnight camp I was able to read easily on my Kindle app on my phone with the Olight on its Moon mode for background light. I took Islay out in the darkness, again using the lowest standard setting, ie not the Moon mode, and it was great.

After three modest uses the torch was fully recharged at home in less than an hour.

I've come to the conclusion that I'd be more than happy to walk off a hill in darkness with this lamp and will most likely use it for one and two night backpacking trips. Longer than this I'd prefer a battery lamp where I can easily replace the batteries. You could of course buy a spare battery pack for the Olight for around £18 and I may well consider doing this.

In summary, I didn't pay for this lamp but was given it by Olight for review. I'd never have considered buying one, primarily because I'd never heard of Olight. Having had time to try it I think it's a very high quality lamp with excellent performance and I'd definitely consider buying one next time I'm in the market. And if weight's an issue, take a look at their H1R Nova, which is substantially lighter yet still appears to have a very usable output.

Addendum: I subsequently had an accident with this torch, meaning I would not recommend it. It has the potential to cause serious damage and injury. Read more here

My journey as a potential living kidney transplant donor, part 3

The first hurdle.

This afternoon I got the result of testing for my blood group. It's O, which is excellent news since that group is compatible with all other blood groups. So, no matter what Jamie's group, we'll be ok.

I phoned Suzanne to let her know but she's on holiday until Monday. I left a message though and I've no doubt she'll get back to me. In the meantime, I'll pick up a printed report from my GP surgery tomorrow and will email it to her.

Needless to say, I've already let Jamie know that little piece of good news.

Another step along the way...

To read the whole story go to my kidney donation page which you can access on the left side of this blog.

My journey as a potential living kidney transplant donor, part 2

Small steps.

This morning I had a blood sample taken by one of the nurses at my GP's surgery. The nurse wasn't familiar with the process re transplants but decided to use a practice form as well as the one sent by Suzanne. My little drop of blood will be sent to a local lab to ascertain my blood group and I'm to check in a week with the surgery. I'll get a printed report which I can send to Suzanne.

Hancock fans will be relieved to hear I didn't have to give an armful.

I cycled back home, over a steep hill, into a headwind and reminded myself that it wasn't as tough as enduring dialysis three times a week. Jamie is, in fact, an inspiration to me; retaining his sense of humour and stoicism through his illness. Amongst other things I'm hoping this thought might help me through any difficulties on my ride across France.

At home, the information pack from Suzanne had arrived. I began reading some of the stuff over lunch. In a list of questions was one not included in the questionnaire I'd completed the other day. Had I ever had Lyme Disease? Well, yes, in 2014 when I'd had a bulls-eye rash around one knee. This being a classic sign of the condition, my GP prescribed antibiotics, which meant no alcohol right through the Christmas of that year. Oh dear! But that's not as bad as dialysis three times a week, eh?

I phoned Suzanne. She was unsure, but doubtful this was a contraindication. She'd need to check with the consultant nephrologist (kidney specialist). We had pleasant chat though and it seems, once the blood test is done, I'll have a phone consultation with her re the whole process. Shortly after this I'll be passed over to the Living Donor Transplant Co-ordinator local to me who'll oversee the rest of the testing process. It was also mentioned that, if all goes well, Jamie and I will be interviewed by an independent assessor appointed by the Human Transplant Authority who will check all is in order legally. This will take place either local to me or in South Wales but we both need to attend, so one of us will need to travel. But that's a long way away right now. And when I returned from walking the dogs just now I found an email from Suzanne reassuring me that the Lyme Disease wasn't a problem. Phew! Talk about ups and downs.

Following yesterday's post (click older posts below this to find it) I've received lots of compliments. I've been very touched by these but I'm really not fishing for praise in writing. Rather, I'm hoping to raise awareness of the effects of chronic kidney disease and, in particular, the concept and process of becoming a living kidney donor. I'm grateful for the lovely comments though. Thanks to you all.

Watch here for the next update. You can get that in a number of ways. If you follow me on Twitter you'll see a Tweet linking to each blog post. You can, if you wish, follow by email, typing your email address in the box on the left side of my blog; in which case you'll get an email alert for each new post. If you're a Blogger user you can follow my blog by using the button below the pictures relating to my existing followers, again on the left side of my blog.

Have a couple of gratuitous pup pics to make you smile...

...then spare a thought in your busy day for my friend Jamie and others like him.

To read the whole story go to my kidney donation page which you can access on the left side of this blog.

My journey as a potential living kidney transplant donor, part 1

I'm off on a big journey in a coupla weeks (see here) but this week I made the decision to embark on an even more significant journey.

My friend Jamie is suffering with chronic kidney disease. This has reached the stage where, for months now, he's been taking a trip three times a week to be hooked up to a dialysis machine at Morriston Hospital, near his home in South Wales. The process each time takes three hours but that doesn't include the waiting time before Jamie is connected to the machine, nor his travelling time each day. In short, on each of the three visits, Jamie's day is pretty much done. Thank God though for the efforts of the team at the hospital, without which I can't imagine Jamie's plight.

I first met Jamie over two years ago. He contacted me via Twitter for some help with outdoor kit. At the time he was beginning Mountain Leader training. Jamie came over to our home in the Peak District a couple of times. On his second visit we enjoyed a short backpack together, which you can read about here. Both Chrissie and I hit it off with Jamie as soon as we met him. I was struck by his openness, sincerity and kindness. Jamie does a lot of work helping charities, especially Chron's and Colitis UK. Be assured, Jamie is one of the good guys.

Here's a couple pics of Jamie enjoying the outdoors with me back in 2016.  Our aim is to be out there again together, soon.

Since that trip in 2016 I haven't seen Jamie, but we've kept in contact as I've sadly, watched his health fail from a distance. As soon as I realised Jamie was on dialysis I began to wonder if I could offer him one of my kidneys. I knew nowt about the process but, on Monday this week, I spent some time researching it on the internet. After an hour or so, I shared the thoughts with Chrissie. I'd not mentioned it to her before, so she was surprised but, as ever, being the epitome of kindness, supportive. I grasped the bull by the horns and contacted Jamie, by direct message on Twitter. I felt too emotional to phone him. And, within 24 hours, I was in contact with Suzanne, the Renal Live Donor coordinator at Morriston Hospital.

This morning I had a lovely chat with my friend Jamie. He was in the dialysis unit, waiting. We shared some thoughts and I checked with him that he was happy for me to blog about this journey and for me to refer to him by name. Both Jamie and I are of the same mind. Anything that can be done to raise awareness of the effects of chronic kidney disease and the concept of a live donor transplant is fine by both of us. Hence my writing. In my book, if we can help persuade just one more person to embark on such a journey it'll be a job well done.

I'm not gonna detail the stuff about live donor transplants cos it's all here on the NHS website. Read it at your leisure. All I'll say is, most of us have two kidneys...but we only need one of 'em. What I would like to do is take you on this journey with me. I'll try my best to give you a step-by-step walk through the process as it happens to me.

I hope for a good outcome. I'm looking forward to a series of tests to make sure:
a. I'm a compatible donor for Jamie and
b. I, and especially my kidneys, are in good enough health for a transplant to take place.

Two other key bits of info here:
1. You can donate a kidney without specifying a donor. It's known as being a non-directed altruistic kidney donor and
2. If I don't match Jamie but everything else is ok, Jamie and I can be paired with another donor and recipient who have the same problem and effectively, swap donors. In that case, the end result is the same. Jamie gets his transplant AND a bonus - someone else does too!

So, the start of my journey.

Having contacted Suzanne by email and phone on Wednesday, she sent me a health questionnaire which I've completed and returned. She also, with my permission, contacted my GP who will also be sent a questionnaire. Today, I received a package in the post to get a blood sample locally. I have an appointment with a nurse tomorrow at my GP surgery for this and the results will be sent to Suzanne.

Jamie and I only know that the process of testing will take "months". And of course I'm in France for 5 weeks, when little can happen. But join me, if you will, by following my blog for further updates. Warning, you may have to put up with my lesser journey across France along the way. I hope it might make you smile.

Best wishes to my friend Jamie.

To read the whole story go to my kidney donation page which you can access on the left side of this blog.

Cycling, camping, fettling, getting hot...and thinking a lot.

This trip was planned for May...but it snowed...again.

So here we go, me an' Dale, on the hottest weekend in the history of Geoff...on bikes loaded up to the gunwhales...up the steepest of Peak Districty hills...to infinity and beyond.

I'm taking much of the kit I'll be using in France (see here) so my beautiful Thorn and Dale's lovely Sonder MTB are heavy. Leaving Hayfield we plod up Highgate Road before tackling the climb up to Rushup Edge.

We pause at the top to congratulate ourselves...

...then skim down to the Cafe Adventure in Hope, for refreshments. They have the finest of refreshments.

From there, we wind our way to a secret location where we camp, for the night.

This is meant to be a shakedown trip pre-France. I've adjusted the gears in the past week and all seems fine save for the chain's willingness to come off the inside of the chain wheels. At camp I tweak the low limiter screw, with fingers crossed.

In the morning we enjoy a blissful ride down a rough track by some secret reservoirs.

Video by Dale

Stopping again at Cafe Adventure, we leave to battle long uphilly bits from Bradwell to Tideswell, then from there via more uphilly bits and a nice, bowling, downhilly bit, to our campsite in Flagg. Here we stop, erect wet tents (did I forget to tell you how wet Hilleberg Enans get in nice, dry, warm weather, despite leaving the door fully open all night long? Well they do, they get very, very, very wet)...and chill, in the sun.

Photo by Dale

Pleasingly, my chain hasn't fallen off to where it shouldn't be today and I swell with pride at having mastered another of the mysteries of bicycle maintenance.

It's hot though, and I wonder at the prospect of every afternoon in France being hot like this, with no shade...anywhere. I begin to consider buying a tarpy thing to rig some shade on a campsite, twixt bike and tent.

Also, my new Sony phone is not charging from my dynamo as I ride. Dale and I have meaningful discussions about this and many other important issues of the day.

We are forced to got to the pub (by an unseen, unknown entity) where we continue solving all the world's problems...at a stroke.

Photo by Dale

Morning brings more sun...but more wet Enans!

We munch the laziest of breakfasts before setting out for Buxton and a final cafe stop.

We make a final climb up Long Hill, stopping at the top for a breather...

...before an exhilarating swoosh down t'other side.

And our trip ends with a gentle pootle along the canal into New Mills...

...and the Sett Valley Trail back to Hayfield.

A truly wonderful weekend of cycling in the sun.

Over lunch, we check the charging of my phone from the dynamo, with the bike on my maintenance stand, and find neither mine nor Chrissie's identical one will take a charge. Dale's will. But, with Dale's expert electronic input I decide to concentrate instead on topping up the charge on my Anker Powercore whilst riding, using this to charge my phone and satnav in the evening.

And, with a little persuasion from Chrissie, I order a simple, lightweight tarp, provision of shade for the use of. Oh...and a new pair of light, Keen sandals.

Life is good.

Many thanks to the fine folk who've so far sponsored me by donating to Cancer Research UK. If you'd like to do so, please follow the link at the beginning of this post. 

Chrissie is off on the TGO Challenge in a couple of days. I wish her and all the other participants a fine, safe and enjoyable crossing.

Smile!

Supporting Cancer Research UK on my Channel to Med ride

It's in the title really.

As with my LEJOG ride back in 2015, I'm hoping to raise some cash for Cancer Research UK whilst I'm, admittedly, having fun on my summer excursion across France.

I've already detailed my plans in this post so I'll not go over the details, save to say it's 1000 miles through France this June and July.

Here's a link to the JustGiving page I've started.

I'm well aware that everybody and their aunt is begging for money for charities nowadays so I'll try not to be too intrusive about this and I'll understand if, for whatever reason, you might choose not to support this cause. But, there again, I'll be really happy if you do.

So that's it.

And here are a few random pics from my LEJOG by way of reminding me of what I'm capable of...when I get off my arse.

Smile, and thanks for reading.

Ghost camp 3; Kinder

It's Saturday, in April, and Spring is threatening to bloom after the longest winter in the history of everything.

Crowther Towers is invaded by Dale, Gordon and James, accompanied by the waggy-tailed Reuben. Bacon and egg butties, coffee, tea and chocolate muffins are devoured by all, before the eight of us (including Pebbles, Islay and Reuben) set out, laden with backpacking kit, for the hills. 

We're a raggedy looking bunch.

Photo by Dale

Chrissie points out all the places she and I have been "misplaced" over long years.

                                                                               Photo by Dale

It's overcast, but, by the time we arrive at our chosen, haunted location, the fog is down and it's damp and murky.

Tents are chucked up, willy nilly, 'til they're scattered all about in the mist.

Chrissie goes over our itinerary with the pups, focusing on their role as Primary-Ghoul-Alarms.

"Yeah, yeah, yeah," says Pebbles.

Islay, however, is taking this VERY SERIOUSLY.

Night draws in. The wind is howling, and the five human adventurers are forced to resort to Twitter as a means of communication.

As the wind begins to die away the ensuing silence is shattered by the sound of a woman, wailing mournfully (it's not Chrissie). The Primary-Ghoul-Alarms do not stir.

But there are some weird goings-on in Dale's tent.

 Photo by Dale

                                                                                                                       Photo by Dale

                                                                                                                              Photo by Dale...I think

The rest of us are much too frightened to go to Dale's aid, for fear of falling into the grips of the horrors in his tiny abode. 

"Sod 'im," we cry as one.

I'm far more concerned about the inedible concoction I've brought for my dessert. It is truly foul. I'm not normally a fussy eater, but I can only manage a few spoonfuls before giving in. Yeuk! And yes, Pete, I KNOW it's a breakfast, but most of us eat rice pudding for dessert. The lack of sugar in the recipe makes it taste like coloured gruel!

But, back to the paranormal activity. Throughout the evening there are more sounds; variously of howling dogs, bleating sheep and wailing women. They may, or may not, have something to do with the warped sense of humour which hides in the darkest corners of James' brain (or what passes for a brain). Reassured by the lack of concern by Primary-Ghoul-Alarms, we eventually give in to tiredness...and drift into fitful sleep.

Morning brings brighter weather. The mist has demisted itself...a bit...and there are views.

Breakfast is taken, lazily...

...and the dogs awake, bleary eyed.

We're amazed to see Dale has survived the night. But he appears to have been wandering abroad in the darkness and can find no trace of his tent. James gallantly offers to help him look for it...sadly, to no avail.

Gordon, meanwhile, is gobsmacked at waking to find his new tent is still standing, him being used to flimsy, tarpy things which don't withstand "weather". I point that out that this is normal for a "proper tent".

And soon, we're packed, (except for Dale, who's sobbing, uncontrollably, at the loss of his shelter) and away, down the hill.

All along the way Gordon is waving his arms and shouting prayers of thanks to the Almighty Terra Nova, while Dale puts on a feeble attempt at a "brave face" and James farts, silently...Chrissie, quietly practises her modelling pose.

As the "friends" return, Mother Nature places all manner of obstacles in their way. But being Epic Adventurers they battle, and survive, wild river crossings and treacherous stiles, and Dale (such a hero) still thinks he's fooling us. Bless 'im.

Finally, having conquered Mount Doom and flung the ring into the depths of hell, our heroic band return, weary but happy, to the safety of Crowther Towers, there to consume vast quantities of toast, tea, coffee and lashings of strawberry jam, before finally wending their ways home to their little homes under the hill...

Islay says, "Bollocks!"