Three Kidneys And A Big Smile

Every now and then you have an accidental chat that leaves you feeling so damned humbled it reinvigorates your zest for life and reminds you to be thankful for the hand you’ve been dealt.  This happened to me recently when I bumped into my old Farmers’ Market pal, Pam Milner.  Pam was the face of the Scottish Liqueur Centre back in the early noughties and as the hard working market co-ordinator at the time, she was always one of my go-to stalls when I needed to see a cheerful face at 7am. 

Just recently our paths crossed again; we were filming the 50^th celebration video for Live Active Leisure and Pam was minding her own business in the Leisure Pool café.  A quick blether and I was to discover that she was a regular at the GP Referral Class and had been attending since her physio referred her some three years earlier.  Of course, I talked her into appearing in the video and sharing her poolside secrets and arranged to catch up to find out more about a challenge she was about to start for the National Kidney Federation.

What followed was the story of a gutsy, no-nonsense woman; one that I had no idea lay behind the early morning smiles and cheerful mitten clad waves.  This is Pam Milner, uncovered.

Pam was born in Liverpool in 1974 and was diagnosed almost immediately with Spina Bifida, a disorder where the spine does not develop properly. The oldest of three girls, the family moved back to Scotland – Mum is Scottish – when she was four and she recalls a normal childhood, entirely unaffected by her condition for the first few years of her life.

“I wasn’t really aware of it until I was meant to start school.  My Mum wasn’t one for wrapping me in cotton wool and her attitude was very much ‘we can all only do what we can do’.  I had walked at an average age even though there was a hole in the bottom of my back but I ended up missing primary one because they thought I might need an op.”

It turns out the op came with a 50/50 chance that Pam wouldn’t walk again and with possibility of life in a wheelchair a real threat, her Mum decided that she'd rather take her chances with life without the operation.

“My mum didn’t make any differences between me and my sisters.  I was exactly the same as everyone else.  Well, almost! I had funny feet and walked a bit differently but apart from going to hospital appointments now and again I never questioned anything.   I suppose the first real clue came when I moved from Cally Road School to Viewlands.  They just couldn’t cope with my additional needs and so I had to find a better fit.”

Pam and I are sitting tucking into lunch in Parklands front lounge, her signature ‘fab hair’ framing her ever youthful face.  She looks exactly the same as she did ten years ago, defying her 42 years with ease.  What were her additional needs, I ask?

“Well I had a catheter and occasionally I had to wear nappies.  Back then Viewlands was the only school that could deal with kids with those sorts of needs.”

She is so matter of fact about this, so completely unfazed that I almost think I’ve misheard her.  But she carries on, reinforcing that fact that it wasn’t until she walked through the doors of her new primary school that she full appreciated Spina Bifida meant she was ‘different’.

“I had a brilliant time though.  I got to go horseriding in the summer and swimming in winter – that was the standard for kids with special needs in the late seventies!  I just thought it was a great scive so there were no complaints from me!”

And then at around nine years old things became a little more complicated.  Pam had repeated urinary infections which led to a urostomy, where part of her bladder was removed meaning she had to urinate into bag.  Nine years old.

“It didn’t bother me that I remember.  The type of school I went to meant that everyday kids mixed with kids who had special needs and it was just a given that some of us were a bit different.  I was never picked on or bullied and at home I was just Pam – exactly the same as my sisters.

Secondary though, hit me hard.  I was at Crieff Road Academy and, the same as every other teenage girl, I soon started to become aware of my body, my image and what I was wearing.   That’s when I realised that I was restricted; I couldn’t do the pencil skirts or leggings of the eighties.  I was more puffballs and A-line. 

I remember one day getting a backie on someone’s bike and I fell off. My skirt came up and everyone saw my bag.  It was terrifying for a few seconds and then someone said ‘what you doing hiding a pint of beer?’ and suddenly the tension broke and it was fine.  I chose my friends well though – they didn’t treat me any differently.”

And what about boyfriends?

“Ah well… I had a couple of boyfriends but I was very good girl if you know what I mean.  Kissing only!”

Pam’s attitude started to change drastically at around sixteen when her move from children’s clinics to adult clinics had her kicking back against things for the first time.  She didn’t want to make the move into this new environment and to make matters worse, adult wards at that time were mixed gender.  Perhaps it was this, alongside the news that her kidneys had started to go, that made things so difficult.  She tells me she’s blocked out a lot from around this time.

By her late teens was she was dating seriously and at the tender age of twenty she found out she was pregnant. 

“So Sasha wasn’t planned! I was meant to be married at the time and my health wasn’t great but nevertheless there we were.  Stuart and I were so excited when I found out – we were young, in love and already planning to get married - but Mum of course was terrified.  She knew the complications that lay ahead.

And boy were there complications! We were married in April 1994, they took me into ninewells and started me on dialysis about two months later and a month after that Sasha arrived 13 weeks premature.  She weighed 1lbs 10 and ¾ oz and at the time she was the smallest baby ever to have been born and survived in Ninewells.  It was really scary.

She was in an incubator for three months – from the July to the October – and we certainly kept the doctors and nurses on their toes.  I was on dialysis and they were looking after my tiny baby.  Being in the maternity ward was tough.  I could hear everyone else’s baby crying and then I'd see the mums comforting them.  I think out of everything I’ve had to do, that was the hardest.”

Sasha gained strength and apart from damaged vocal chords – ‘she can’t really shout now’ – she grew into a strong, healthy toddler.   Pam wasn’t quite so lucky and continued on dialysis three times a week while raising the baby. 

“Stuart and I stayed with his parents at first but it was still hard – having a baby and making the trips up and down to Ninewells takes it out of you.”

But this is exactly what she did, until 1996, when she was offered a kidney transplant.

“I was given a pager so we knew I could be called in at any time.  It’s a strange thing to wait for.  Everyone is always hopeful, you want that match so badly but you know that in order to get it, someone else has to die.

For my experience, I justified that in my head by reminding myself that someone carried a card so that they could help.  They gave their permission.  It was their gift to me. 

I remember the call vividly.  I’d been at dialysis the night before and the next day the phone rings.  ‘Pamela? This is Dr blah blah blah.  We’ve got a kidney.’  And then I hung up. I was in state of shock. I’d known people who had waited years and so in some way I suppose you always brace yourself for it never happening.  Anyway he called back and said ‘Do NOT hang up! We have a kidney for you!’

I phoned my husband to tell him and the news spread around his work site so quickly. I could hear them shouting ‘Get Clint, Pam’s getting a transplant!’.  I’ve no idea how he made it home that day!”

Pam tells me she went from being excited to the she-devil as apart from having nothing to eat or drink she had to go through a dry shave which was hellish! Her stress levels were tested as emergencies piled in the door and her time waiting stretched into hours. By then her anxiety had convinced her the kidney wouldn’t work.

“I was convinced the kidney wouldn’t keep but looking back they’d never have allowed that to happen.  I was so scared and went from being cool, calm, unflappable Pam to this nutter.”

Of course, the kidney did work and it is now twenty years since that miraculous day that changed Pam’s life.  The positive effects on her life were immediate.  Simple things like not having to watch how much fluids she was consuming, planning a holiday with her family, having three days of her life back every week to spend with her two year old child mae every minute of that day worth it. 

“It is the simplest of things that made it all worthwhile for me.  To be there for my daughter, while she ran around, to say yes to a meal out and a few drinks.  It wasn’t extraordinary things I suddenly started to do – I just got to enjoy life again and it was amazing.

I don’t know anything about the person who made my life possible, or the relations who agreed to honour their wishes.  I tried so many times to write to them but it took me two years in the end.  I started about two weeks after the transplant but I threw away every attempt I made.  It was Sasha starting school that done it for me.  I knew it was time to let them know how I was doing and what that gift meant.

The thing was, there are just no words to ever thank someone enough or to express just how much their gift meant to me.  It allowed me to grow up with her without being tied to a dialysis machine. It gave me the energy and time that I needed to be a good Mum.”

Nowadays, you might know who gave you their kidney.  You can meet the family and see the faces of the people who changed your life. But she has never known, and in many ways she is thankful for that.  The letter was handed into the hospital and passed onto the family with no names mentioned. 

The big thing for Pam though, was getting back to work. She is a bubbly, gregarious girl, easy company with plenty to say! The market role for the Scottish Liqueur Centre was perfect for her, and I can lay testament to her sales skills having watched her stall at Perth Farmers Market swarm with people looking for a wee taste and a bit banter from the lassie pouring. 

“I loved it. It is one of my all-time favourite jobs.  Meeting folk, chatting to people.  I was built for that sort of job.”

Unfortunately, Pam’s health wasn’t up to the long term stamina of work and family and although her kidney has held up, the original condition of Spina Bifida has brought with it other challenges.  She has been suffering from chronic pain for a number of years now and simple day-to-day things like walking and sleeping began to become increasingly difficult. In a nutshell, everything has slowed down.

She was referred to the neuro consultant who after scans and tests broke the news that there is nothing that can be done to remedy the problems with Pam’s spine.  Vertebrae pushing on her neck cause the pain and this won’t change.

“Chronic pain is tough – I’d rather go through another transplant.  I’ll try anything to help it – I’m currently trying seeds in my ears that you rub up to twenty times a day.  They’ve been in two weeks and so far they seem to be working!

I hate to sit about feeling sorry for myself but last year I hit a wall.   I think it had been building since they’d told me there was nothing they could do.  When you’ve gone through the things I have you begin to believe you’re invincible.  My attitude has always been ‘throw it at me – I can take it’.  There has always been a fix; the catheter became a urostomy, the dialysis become a transplant, but this is different.   With this there is no fix.

I had some counselling and that was a great help.  Someone talking to you helps.  And of course I have my time at the pool which helps me mentally and physically… and it makes me get up and go! That’s huge when you’re feeling low.”

The pool.  Three years ago Pam’s physio told her about the Activity Referral programme run by Live Active Leisure.  She had – her words – started tripping over thin air and had begun to give herself bumps and bruises, rattling her ribs on more than one occasion. 

“When she first mentioned it I was unsure – I mean, I’m short, I’m lopsided and I hate the gym!  However, she said I could do the whole thing at the pool and I was signed in for one of the activity referral classes.  I’ll give it a bash, I thought. And what do you know, I’ve never left!”

(See Pam's star turn at 13 mins 23 secs!)

Pam has been through the original programme and is now in maintenance and, for her, this means classes three times a week with a group of people she has come to consider her friends. 

“I love it. The class is great and it’s a bit like being back at that brilliant primary school.  No one would ever dare to judge a book by its cover.  I know I walk a bit funny but people would never guess what I’ve been through to earn the right to that walk and in the pool, no-one even notices.”    

It is this glorious attitude that makes Pam’s story so damn heartwarming.  She admits there are dark days, there are times when she feels a bit sorry for herself but all in, she is grateful to have the life that she does.  She’s been married for 22 years now, Sasha is a grown woman with her own job and her own car, those carefully chosen friends from school are still at the end of a phone if she needs them or they need her.

“The kidney is twenty years old for me but I have no idea how old it was when I got it.  It might be over 100 for all I know. Do you know the average person can donate seven different organs so you could save up to seven lives?  And it’s not just the person you’re saving – my wee girl had her Mum because of one person’s decision.

I’m not one of those people who had a transplant and became a crazy adventurous sort of woman.  I’m happiest in my jammies with a glass of wine or two, chatting to my friends and family.  It's a simple life and I’m perfectly happy with that."

Pam has decided that with the operation’s 21^st anniversary looming large she would do something to raise awareness of renal failure, dialysis and the donor card.  One of the toughest things she remembers about dialysis was the close monitoring of what you ate and what you drank.  This dietry restriction is the same for all renal patients and three years ago the National Kidney Federation launched Choctober. 

The idea is simple; many kidney patients have to give up chocolate for 'life' and so the Choctober Challenge is a way to show support by giving up chocolate for 31 days during the month of October. It is Choctober’s third year with £9000 raised in 2015 and Pam hoping to add to that total this year.

“I’m feeling so much better now – mentally that is.  I don’t open up much but the counselling helped hugely and getting up and going to the pool has been a life saver for me. I feel like I got my sparkle back and instead of laying down to this pain I just chose to take it on in a different way. 

Like the stick. I wasn’t for having a stick at first – I saw it as a weakness – but the realisation that I was choosing to fall over for the sake of my own vanity was ridiculous. So I use it on days I need it as second nature now. I’m looking for a glittery one though so if anyone knows where I can get one that would be great!

Anyway, it felt like the right time to give something back so I’m off the chocolate! People have been great - Jill and Vic, the sisters who own the Snack Bar at Auchterarder have taken a money box for me and I’ve already rounded up a few sponsors. I’m hoping to raise £200.”

Pam tells me many times during our chat that she’s never really sat down and told her tale from start to finish in one go.  She’s not sure folk will be interested.  She’s worried it sounds a bit doom and gloom.  “Cos I’m not – you know. Apart from that tumble last year, I’m grateful for what I have.”  I assure her that many, many people will, like me, be inspired by her triumphant story.  Her infectious smile beams ear to ear as she laughs it off as though it is nothing.

“You know I remember once thinking ‘why doesn’t my mum take pity on me?’.  But she didn’t. And my God I love her for it.  With the right people around you, you’ll survive anything.

I had a tattoo done for the kidney’s 18^th – ‘This Body Comes With Special Parts’ around the donor symbol.  I know I’m lucky.  Your life isn’t over because its different, you can still live it to the full.  It’s just about getting out there. There’s no right way, no wrong way. You just get up in the morning and go.”

See, I told you she’d inspire you.

***

Please show your support for kidney dialysis patients! Tell your friends and family about the Choctober Challenge and sponsor Pam to help her raise her target of £200.  I know the Small City readers can make this happen!

TAKE ME TO PAM'S JUST GIVING PAGE>>>