One determined woman – placing an ad in the local paper for a kidney donor


Sometimes in my line of work I come across some truly amazing people. Aside from

jan Bell - remarkable woman

jan Bell – remarkable woman

dealing with community issues, court cases, crime, scandals and planning issues, on a weekly basis I have the honour of coming into contact with some of Cheshire’s most determined, selfless and brave people. Hearing their stories is always a mind-blowing and humbling experience, but every so often there is a person whose bravery, coverage and determination leaves you in utter awe – so much so that it really puts your own troubles into perspective.

I don’t often talk about work on this blog, but I just have to share this story will you about a woman who seriously made me take a hard look at myself, my life and encouraged me to get cracking with my challenges. It is also one of those stories that restores your faith in humanity – until moments later someone lets a door swing shut in your face that is!

This week I had the pleasure of talking to a truly remarkable woman. Jan Bell is 43-years-old and has already had two failed kidney transplants. She relies on daily dialysis to survive, but after her second transplant failed she is facing a race against time to find a live kidney donor to keep her alive. Her veins have been so badly damaged by years of intensive treatment and dialysis that she now relies on a neck line to keep her alive – if this narrows and fails she will have months to live. Time is rapidly running out, and without a stranger giving her a kidney she could be dead by Valentine’s Day.

Remarkably despite years of illness – with her face and joints swelling up until she was often unrecognisable; often being so weak she couldn’t climb stairs; and dealing with septicemia and infections following operations – Jan has remained a successful and well-respected businesswoman within Cheshire, winning numerous awards for her beauty clinics across Chester and Frodsham. Speaking to Jan it was difficult to remember I was speaking to someone who was so seriously ill, that she might be dead in a matter of months, she was just so positive, chatty and upbeat. Her bravery and positive attitude was astounding. In fact we had such a long chat about hospitals and treatments that I told her I had Crohn’s – she said she would hate to have such a horrible condition and sympathised with me – and this lady’s been on the transplant waiting list for almost two decades!

While on the phone we spoke of how Janet (Jan) wanted to stay alive for her customers, how she wanted to keep her business going and of her dreams for the future. Suffering from Crohn’s/Colitis myself and knowing how difficult it can be to hold down a full-time job while trying to manage a chronic condition, it was astounding to hear how Jan managed to pull off a string of successful businesses on her own while dealing with the ongoing side effects of kidney failure for the past 17 years. Jan told me she felt a little bit like a failure when she was forced to abandon some of the branches of her beauty clinic over the past few years due to feeling weaker after the second kidney transplant failed. Despite understanding her feeling of failure due to illness (having to abandon many things and miss out due to my IBD) I couldn’t disagree with her more. This woman is a true heroine….running a self-made business and standing behind that counter every day while dealing with kidney failure – if that doesn’t deserve a slap on the back I don’t know what does.

Last week, after being told she had to find a live kidney donor or she would die, Jan did something completely unprecedented. After exhausting all options, having asked customers, friends and family to no avail, Jan placed a personal ad in The Chester Chronicle asking for a live kidney donor. It was a tiny ad, bizarrely placed among adverts for parrots and stairlifts, but the response she received was amazing.

The advert

The advert

When i spoke to Jan on Tuesday she had already received 64 responses from total strangers all across the country and even the world willing to see if they were a match to give her a kidney. I was shocked. And when I spoke to the agent who helped her place the ad they said the help line for Jan was overflowing with around 100 responses. In fact every time I rang it to talk to Jan it was so full it wouldn’t accept any more messages. Unbelievable. Ok, many of you are probably thinking (cynically or realistically) there must be a cash incentive involved? And Jan admitted some people had emailed asking for cash, but true to her ad Jan insisted she was not willing to pay any money for the kidney – she is relying on human kindness.

And man she’s had a bucket load of strangers willing to save her life. If that doesn’t change your opinion on humanity I don’t know what will.

Jan says she is realistic about the process. She understands that the probability of more than a handful being a match is very small, and also realises that the reality of donation may lead to many pulling out, but she wants to live and is willing to try anything to find a donor to stay alive. I admire that. it makes you wonder what you would do in that situation, what you would do if you found out you had months to live if you didn’t find someone willing to give up an organ for you. Would you give up, or would you fight and try everything possible, no matter how desperate or unconventional it may be? I like to think I would…but who knows.

Photo by Ian Cooper

Photo by Ian Cooper

Ok, so hundreds of people didn’t come forward just because of the tiny advert hidden within the local paper. The national press caught on to it and Jan’s story was seen by tens of thousands of people on Daybreak, Granada, The Mirror and the Daily Mail, as well as in the story I did for the Chronicle.

But, as Jan said, it just shows how such a simple thing can work. And I think she was right when she said that if the NHS put adverts in local papers they could have more people signing up to be donors that ever. If it works for her it might work for anyone, who knows?

This month Jan has a pioneering operation to put a bolt in her neck line to stop it from narrowing as quickly. This should buy her much-needed time to find a donor. I hope it does, and I hope something comes from all this. Not just for her, but for all the people she has encouraged to sign on to the register to become live donors. In her words not mine, if she helps just one other person on that waiting list “it will all be worthwhile”.

To read Jan’s story in full visit: http://www.chesterchronicle.co.uk/news/chester-cheshire-news/frodsham-woman-overwhelmed-response-after-6302516

 

 

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Meeting Olympic legend Sir Steve Redgrave – a true Ulcerative Colitis hero


Last week I met Sir Steve Redgrave. Many people know him for being an Olympic rowing legend – one of the most decorated Olympians in history, but few know that he has suffered from Ulcerative Colitis for the past 11 years.

Me and Sir Steve Redgrave - legend

Me and Sir Steve Redgrave – legend

When he first showed symptoms in 1992 he had no idea what it was. Just like all of us with IBD it came as a total shock to his body, but for him as a world-class athlete who was about to compete in the Olympics I can only imagine what that sort of pain would have done both physically and mentally. I mean if a pain like that can floor me and leave me screaming to die I wonder what it did to someone like Sir Steve, who surely was the fittest he had ever been in his life…he says he was doubled-up in pain, we’ve all been there, why didn’t he just curl up in a ball and give up?

I remember when I first found out that Sir Steve had IBD. It was when Darren Fletcher – Man United footballer – first revealed that he was going to take a break from the sport as he had been diagnosed with Ulcerative Colitis. The Daily Mail ran a story on Sir Steve Redgrave having the condition. My first reaction was, that can’t be true, that’s totally made up (and I’m a journalist!), my second thought was WOW, my third was WHAT’S YOUR EXCUSE???

I know that everyone is different. If we were to compare notes I think I would win hands down for how much my illness has effected my life…I think I would be able to say that it has stopped me doing more things, caused me more pain and caused me more humiliation in life. But from one story how do I know that? How do I know that he’s not sugar coating this illness when he says he never suffered from vomiting or uncontrollable diarrhoea…I don’t, and this isn’t a ‘who’s bowel’s the most destroyed competition’, it’s an unbelievable story, from a unbeleivable human being who has shown me that anything is possible no matter what.

It took doctors four months to diagnose his condition. Why? Because unbelievably he carried on training for the Olympics despite the crippling pain and his bowel disintegrating into a blood bath, he simply refused to stop rowing, and because of that some specialists simply refused to believe that he could have anything as debilitating as IBD – he was superhuman and they thought it had to be something else:

“One specialist had ulcerative colitis as the last thing on his list because he couldn’t believe anyone with the disease could do strenuous Olympic training, says Sir Steve in the Daily Mail article.

Sir Steve Redgrave won his third Olympic Gold medal in Barcelona, destroying the opposition with his partner Matt Pinsent – and he did it in a boat in the middle of the water with his bowel screaming with pain and probably at the back of his mind constantly that he could need the toilet at any second.

He almost didn’t get there though. He almost got pulled from the team – imagine how different our sporting history would have been then. He almost didn’t do it, but he did, he refused to let it stop him, he could have lain down and said I’m too ill, I’m not doing it, but he didn’t, he battled on. He refused to miss one training session because of his Colitis, even when he was doubled-up with pain, and because of that we have arguably the best Olympian of all time – and if that doesn’t inspire you what will?

“I told him I’m living proof that however bad it seems, there is potential to come out the other side. I hope he doesn’t feel so isolated as he may have felt before, (Sir Steve Redgrave speaking to the Mail about talking to Darren Fletcher about IBD). 

Just weeks later he had 12 pieces of his bowel removed. Before going on to become the greatest Olympian of all time, while battling Colitis and developing Diabetes – something which some doctors said was because of his IBD medication.

I don’t care who you are, where you are from, or what you do for a living, you would have to be inhuman not to find this story remarkable, not to find him an inspirational human being. So read it, it could change your life and make you realise there is a light at the end of this very dark tunnel – it did with me:

http://www.dailymail.co.uk/health/article-2076304/Steve-Redgrave-misery-colitis.html

Sir Steve Redgrave rang Darren Fletcher to offer support

Sir Steve Redgrave rang Darren Fletcher to offer support

That’s why when I saw him stood outside Chester Town Hall waiting for the full Council meeting to determine the future of the student village, of which his sporting institute – The Redgrave Institute – was a part, I just had to go and say hello. I wish I could say that I told him how much of a hero he is to me, I wish I could say that he has helped me in more ways than he will ever know, and I wish I had said so much more. But I dissolved into a bit of a wreck…I think I got starstruck – you know that thing where you are overwhelmed and just can’t say anything. Ok, so I realised in a professional capacity that it wasn’t the time or place to talk about bowel obstructions and blood, poop and tears, and it definitely wasn’t the time to start gushing and crying. So I didn’t do any of those things – just as I didn’t get my boyfriend an autograph when I met Sir Alex Ferguson at the race course when we welcomed back the troops – it would have been unprofessional and inappropriate.

But I met him, I spoke (even if my voice did come out as a little girl’s giggly whisper) and I shook his hand. I even had my picture taken with him. He could have told me to do one, but instead moments before he needed to speak in front of a packed room about something very important he stood and had his picture taken with me. And yes he was a lovely man, very friendly, very approachable and very tall.

So I met a true hero of mine. And you know what, he’s not superhuman, he’s not a robot, he’s just a really nice guy who has managed to overcome all odds to do something truly incredible. I hope I meet him again and get to tell him all of this…but you know what I think it would embarrass him – I just hope he knows how inspirational he is.

Perhaps everyone should live by this mentality, and re-reading this story I just think I will:

‘I took the view — as I always did — that whatever the difficulty, someone has got to win the gold medal. Why shouldn’t it be me?’

 

 

A 22 mile bike ride – jelly legs & a bruised bum & hitting streets with Police


Until today the longest bike ride I had done since my ileostomy operation was around three miles. And that had been a struggle. Come to think about it, three miles was probably the furthest I had ridden anything in years, and that was far enough for my skinny little legs.

A quick and much needed break - no I didn't fall off

A quick and much needed break – no I didn’t fall off

So this morning me and Andy (my boyfriend) woke up to a lovely autumnal morning. It was a little cold but absolutely stunning. I woke up fairly exhausted after spending the night on reporting duty trekking around Chester City Centre with some lovely police officers as they tackled drink and drug related crime in the city in the aftermath of the last race of the season. I was with them most of the night running around, trying to keep up with their long strides, and, well trying to not get lost in the crowds of unbelievably drunk women swarming through the city’s streets.

It is a year since I did a very similar operation with the police in Chester. I remember how exciting it was, but how the whole time I was watching the drug dog sniff out wads of cocaine from revellers outside bars and clubs I was constantly panicking about needing the toilet. You see I may not have been in the peak of one of my IBD flares, but I still needed the bathroom around six times an hour, or I would be left gripping my stomach in agony and struggling not to curl up in a ball crying like a baby. I remember managing to throw the pain to the back of my mind until the break – which was after at least three hours – before getting back to the station and locking myself away in the cell-like toilet, and silently sobbing in pain as I tried to ‘let it all out’ before we hit the streets (without loo breaks) yet again. Ok, I hear you say, I should have said something, I’m sure they would have let me pay a pit stop, but I couldn’t and wouldn’t slow them down…I absolutely refused to stand in their way.

townhall_policeThis year was different. With my ostomy bag I hardly had to worry. In fact I made it from 7.30pm until I go home at 11.30pm without having to empty or change Winnie. Yes I did worry I would be caught out, and yes I did worry about needing the toilet – but I don’t think I will ever stop doing that – I’m a bit like Jason Bourne these days when it comes to rest rooms. I did panic when Winnie started going into overdrive at the custody suite while I was looking around the cells where some of the revellers would be sleeping off their booze that night. But she survived and to my relief I didn’t end up having to change Winnie in a cell with no basin and a metal loo!

Anyway, after groggily getting out of bed we made the decision to go for a bike ride. Yes we realised that the 20+ mile round trip was a big ask after hardly stepping foot on a bike since my operation, but after traipsing miles and miles around Rome that didn’t seem like such a leap into the dark for my legs. Oh, and there was a pub to be stopped at on the way…so that helped as an incentive.

I didn’t regret it one bit. The weather was beautiful and cycling along the canal was both exhilarating and peaceful. At first we were forced to weave around walkers, dogs and fellow cyclists as we battled along the canal, but then we finally found ourselves alone, apart from a few ducks and MASSIVE dogs and the scenery became simply something else. For a couple of miles we battled on despite the towpath teetering out altogether leaving me exhausted from the grassy mounds underfoot, or wheel. Then realising I was never going to make it back if we carried on, we finally went onto the road and cycled the rest of the way to the pub…a thousand times easier, apart from the fact Andy got a puncture and we had to stop every-so-often for him to pump up his withering tyre.

The pub itself, The Shady Oak, was quaint. Set on the side of the canal the views were

Waiting patiently for food - I'm screaming inside lol

Waiting patiently for food – I’m screaming inside lol

breathtaking. However the service left a lot to be desired and they didn’t take visas or any kind of cards whatsoever. It was an odd phenomenon going into a cash only pub. That’s when we realised we had cycled 10+ miles and probably could only afford a handful of chips between us!! Luckily we had a bit more and managed to share a buttie and chips – from a ridiculous menu I must add, and a ridiculously long wait of around an hour and a half!

Anyway a few other things happened, but all in all it was a magical day. Now sat on the sofa I feel proud. Ok, I’m no Sir Bradley Wiggins but I dug deep when I thought I had nothing left and managed to complete a 22 mile bike ride, which is amazing when you think six months ago I couldn’t walk up 10 steps without having to stop for breath. I feel healthy, but wobbly. In fact I can’t walk at all without my legs shaking, and my bum feels like it has been head butted by a bull. But it is a good healthy sort of pain, one that I am sure will make me walk like a cowboy for a few days, but one that I can be proud of…this is a pain that means my fitness is coming back…so, I guess I like it!

I can’t wait to do it again. It’s happened, I’ve got the cycling bug!

The last stretch - oh and there is my bessie mate in the car next to me - small world lol

The last stretch – oh and there is my bessie mate in the car next to me – small world lol