What to Expect When You're Expecting... A Transplant.

As you will have seen from the dates, I have not written my blog in a while for three simple reasons:

1. I forgot my login details 

2. I have been very busy (debatable)

3. Because I felt that what I had to say wasn't important...

All of which are just excuses and, in reality, the last one is quite the contrary. I have a piece of artwork hanging in my living room that reads “be stronger than your excuses” so here goes...

To tell this story properly it needs to be told in three parts.

Part one: Post-transplant 

Part two: The six months after it

Part three: Where I am now 

I tried to write all three pieces in one but it would’ve taken you all too long to read and you would’ve been bored, so here is part one!

Before I begin, I should point out that organ donation is one of the best things created by modern medicine. It saves thousands of lives a year but the more I talk to people who have received a transplant, the more I realise that everyone has absolutely no clue what to expect. 

My story isn’t your average, run-of-the-mill transplant anecdote but there are bits in my next three posts that everyone who’s had a transplant will be able to relate to on some level. I feel it’s so important to talk about what happened and to show other patients (and in fairness, everyone else) that you’re not alone.

Plus, honesty is the best policy. Even though this wasn’t easy to write, and probably won’t be easy to read for some either, I feel that what I have to say is pivotal to transplantation. And, in fact, life.

The last time I published anything of note was over three years ago. I was sitting in a hospital chair attempting to get some sort of positivity from the story I was writing. I was six weeks post (second) transplant and I was still in hospital because my new kidney had rejected, twice. I was under the assumption, like most, that once I had my transplant my life would be wonderful. As if Jesus would put his healing hands on my forehead and give me the gift of immortality. 

I had all these wild, romanticised ideas about what my life would be like post surgery. I would be healthy, happy, get to lead a normal life again. I could plan holidays without making them near a dialysis centre.  And I could finally finish university without any hiccups. My life plan finally seemed to be coming together. 

However, this was not meant to be. 

I remember waking up after my transplant in the high dependency unit with all sorts of tubes coming out of me – never fun – with my Mum and my boyfriend at the time, A, sitting next to me. 

I remember thinking morphine ruled (totally does) and being on the phone to all my friends and family telling them the good news.

They all cried – needless to say!

I remember swearing profusely at my then 12-year-old cousin along with many other family members telling them how “f**king awesome” morphine was. 

I also remember waking up just out of surgery and having a chest X-ray done. I was lying in bed and a cluster of nurses appeared out of nowhere, lifted my back up and propped a metal plate underneath me. Now, bear in mind I’m like... less than an hour out of surgery, higher than Pete Doherty during most of the early noughties and my scar is new. Even though I was on a ton of pain killers (woohoo), I could still feel my stitches pulling apart. In pain, I dug my (very long) nails into the nurse that was holding me up. She shouted: “Ouch! That hurt.” To which I replied: “Sod off. I’ve just had a transplant. You got nothing on me!"

Still possibly one of the best things I’ve ever said.

Anyway, I digress! 

As the days rolled out after the transplant and I became far more sober, it was agonisingly obvious that the kidney wasn’t working. Having slept for nearly four days (and spending one burping out all the gas they'd pumped into me during surgery), it was time to do some tests. 

I was naive to be honest with you. I thought that everything was going fine, that it was just a lazy kidney and had taking after me. But sadly, it wasn’t.

Less than 12 hours later, two doctors swung open my hospital room door and told me: “Your kidney is failing so we’re going to give you anti-rejection drugs. This is your only opinion but you may die if we do it. Let us know your thoughts”.

Well... they didn’t say those exact words but they definitely said “die” and “only option” which is never reassuring.

They left me in a state of absolute panic. I called A and told him what the doctor said. I honestly thought I was going to die. This was it. If they couldn’t save my transplant I would be bereft of life, as John Cleese would say!

Frantically, A rushed to the hospital and was able to calm me down. Turns out, after minimal research(cheers Google), that the anti-rejection drug the doctors wanted to give me (that they said would kill me!) is given to almost every transplant patient in the US as a precaution. Honestly, doctors have no bedside manners sometimes...

This death-defying drug is known as ATG, antithymocyte immunoglobulin. It is essentially used to tear your immune system apart, which is exactly what it did to mine, so your kidney has a fighting chance.

For the next eight weeks I was in isolation battling severe rejection, contemplating life and wondering if it would all be worth it. Years later, I still asked myself that same question but we’ll get onto that in part three!

Because of the ATG, my immune system is still weak even now, over four years later. By May, 2019, I was on my eighth urine infection of the year. I was in hospital for six weeks just after New Year in 2019 with a stomach virus which made me lose almost 4kg in two weeks, and I was only 51kg to begin with. On top of that I had the flu. In 2018 I had the flu, numerous UTIs and a chest infection. The year before that was the same.

This story hasn’t been written to scare people out of getting a transplant, or becoming an organ donor. It’s to let them know what can happen and to not be scared if a transplant doesn’t go to plan. Life is life; it isn’t perfect.

I will no doubt be ill for a long time to come but I can’t help that. The way I look at it now is that everything will get easier as time goes by, not because I will actually get better but because I will learn to deal with what comes my way and remember that I’m no longer attached to a machine for 12 hours a week!

My advice for anyone waiting for a transplant is to get as much information as you can from transplant patients. You’ll have a better understanding of what may happen, how you might feel, what will happen if the kidney doesn’t work right away, all that jazz. And just because the kidney doesn’t work immediately doesn’t mean it’s rejecting. I know someone whose transplant didn’t kick in till eight months later and they spent that whole time on dialysis again.

If you’re worried or just want to speak to someone, contact your local kidney patient association (KPA) - almost every renal unit in the UK has one and I’m sure other countries will have an equivalent. Each KPA is made up of staff and patients who are there to support all renal patients, my one is the Grampian KPA. There are oodles of other incredible charities that can help as well, like Kidney Care UK, the National Kidney Federation and Kidney Kids Scotland for paediatric patients, as well as online patient groups.

Us organ failure patients get ourselves into all sorts of situations but know that whatever happens, it will get better. It’s tough but you are not alone!

Once Upon a Time in the Land of Fate

Let me take you back to a not-so-sunny day in September, 2015.

A young girl in her early 20s was sitting on her sofa next to her friend discussing a potential university ski trip.

"You should come!! It would be so much fun", exclaimed the friend.

After a few moments of deliberation, the young girl said "f**k it, I'll come". And with that the deposit was paid and she started to plan her trip with her university friends.

They were due to go on 22nd January, 2016, for a week to "de-stress" after all of their exams were finished for that semester.

Her first step was to contact the dialysis travel company, one that she trusted and had used many times before. The lady she dealt with said that the trip would not be a problem and that everything would be sorted out as soon as possible.

The young girl was so excited to finally go on a university ski trip, something she had wanted to do for years. She had heard about all the brilliant shenanigans that went on, including the (naked, drunken) midnight skiing. And even though she would never partake in such a frivolous activity... she was just thrilled to going.

A month went by and she hadn't heard anything from the dialysis travel coordinators which was not like them. She phoned them again and on answering they assured her that everything was getting sorted and she had nothing to worry about.

The young girl carried on as normal with her life and university studies, as well as attending dialysis six days a week. After another two months had gone by with no information given, the hospital started asking for more travel details and when they needed to have the blood tests completed by. The payment deadline was coming up too so she phoned the coordinators again.

She was informed that the lady who was dealing with her request had recently had a knee operation and had not been into work, nor would be returning for another month. Feeling disappointed, the young girl asked if anything could still be done and if, in fact, anything at all over the last three months had actually been done.

Sadly, it had not but the dialysis travel coordinators said that they would try over the next few days to help. This was so unlike them. They had been fantastic over the last three years.

Feeling a little disheartened, the young girl phoned the ski travel operator and informed them of the situation. With the final payment due in two days they said that they could push back the payment deadline to give her time.

Discouraged by all of this, she decided to phone her Mum who always had the perfect advice for everything.

"You know, Katie, I have a funny feeling something is meant to happen while you are away. It's like someone doesn't want you to go. Maybe just leave this trip and you'll get again."

With that advice taken on board, the young girl decided to cancel the tip and, to be honest, she was ever so slightly relieved. The travel operator even gave her the deposit back which was very generous.

Six weeks passed without much thought about the trip. With exams over, the young girl just did what all students to best - sleep!

One morning, at 40 strokes past 2, the young girl received a phone call. Rummaging around her bedside table for her phone, she answered: "hello?"

"Hello Kate, this is the transplant coordinator from Edinburgh here. You can probably guess why I'm calling?"

"No."

"Well, we have found a match for you. Would you like to get some things together, pick up your notes from Aberdeen hospital and come down to Edinburgh as soon as you can...?"

And with that, she jumped out of bed and packed her bag. Looking in the mirror, she knew this was it. She'd had a call before that didn’t go ahead but this time, it was hers!

As she left, she turned round to lock the door knowing that this was meant to be. Life would never be the same again.

With one final pause, she looked up at her trusty cat sitting on the top step, looking at her as if to say "good luck. I'll be here for you when you get home!"

It was a Tuesday. Tuesday, 26th January, 2016.

Don't Stop Me Now

Don't Stop Me Now

I'm havin' such a good time. I'm havin' a baaaaalllll.... Actually hate that song!

I am now back from an amazing week long holiday to Morzine, in the French Alps with my Mum, Auntie and T (the boyfriend, not the friend. However they did use to date when we were 14 which is a fun fact for you all!). Instead of staring out and seeing mountains wrapped in glistening snow, trees tipped with frost, watching the wonder of Mother Nature, I am now back to looking at a rotating washing line! Harsh turn of events. 

This last week has been really amazing for me in many ways. It was my first holiday away with my Auntie since my transplant and we use to go away together every year. It was so good to spend some quality time with my Mum and auntie on International Women's Day and Mother's Day which has made me love and appreciate them even more. It was wonderful to see T, who is fairly new to the family, bond and get to know the two strongest women in my life. If he can cope with them then he's doing well! And it was also an incredible time to look around me and witness so many people doing something they love despite their 'adversity'. 

I know many people will say how they have the most fantastic family but, sorry, you are wrong. I do! During our trip my auntie, who is outrageously ballsy, steadfast and hilarious, got drunk on several occasions and made heads turn in restaurants because of her shameless and unapologetic laugh. We played some sort of scrabble type game and my Mum, auntie and T came out with words like "big wiener, slag and fanny". I only made up sensible words, of course. And my Mum taught T how to dance the Waltz at the bottom of the Bubble lift which actually makes my heart melt. Family is everything to me and being close to people, family or not, is such an important part of life.

So I have been skiing since I was about three years old and it has always been a very family orientated activity for me. I have been away with my parents, auntie, uncles and cousins almost every year, minus probably six due to illness, studying, etc. I was away over New Year with friends for the first time and despite the flu, norovirus, a busted back on T's part and several tantrums and throwing of ski poles cause I forgot how to ski, I had a great time! 

Again, and I stress this in almost every holiday post I write because something always happens to me on holiday, it is how you just get on with things that are thrown at you, not what has actually happened. 

During my New Year ski trip to Morzine, my parents were out with my sister who brought her three girls out too (they are the most beautiful children on the planet. I'm allowed to be biased, OK!). I was helping the youngest one learn how to ski and I realised that I could not do a basic snowplough turn, Goggle it, which made me freak out hence the tantrums and pole throwing. Coming out this time I was determined to get my ski level back up and I thought it would be best to get a private lesson just to pick me up and get my confidence back. 

Side note: just because you are good at something and have been doing it for a very long time does not mean you have nothing left to learn.  

So the lovely lady at the B&B booked me for the lesson with a guy I had heard about over New Year. When I found out he was going to teach me I was thrilled. He is an instructor, obviously, has been doing it for over 20 years and has one leg!! He skis with one ski, has a metal stick as his second leg and poles with flat, mini-snowboard-like bottoms. He lost his leg, I believe, in a motorbike accident when he was 18. He is now in his 60's. AND during the Summer he teaches water skiing among other things. This guy was so cool! Wore a snap-back and washing-up gloves as his ski gloves. I mean, ripped my skiing ability to shreds but awesome guy!

And throughout the week I noticed more and more people with disabilities like his going around skiing still and I found it truly wonderful. 

On my third day I saw what looked like two slope rescue vehicles. It soon became clear that it was two young boys with learning difficulties being taken round the mountains by experienced skiers who were there to help and support the boys. What a wonderful, wonderful thing. 

The next day I saw another one-legged skier but this time on a chair about the same height as a wheelchair and another one the following day. They were two separate individuals as the chairs were different. But I just loved how those people figured out a way to just keep doing what they loved and that freedom that they have given themselves is such a joyous thing. 

A lot of holiday companies, like Crystal, offer adaptive skiing for their clients and that is the way it should be. There are so many companies now that offer safe and fully accommodating holidays for people who have both physical and learning difficulties such as Ski2Freedom, Back Up and Special Olympics Great Britain. This is my favourite part about humanity. The fact that we have the ability to help others and actually do it! We are all equal and should all have the means to enjoy life in any way we want. 

I read an article recently in the Huffington Post about a man with spinal muscular atrophy who wanted to travel the world. His friends decided to carry him on their backs like a backpack for three weeks in 2016 and he has now travelled to Europe, including Skellig Michael (Luke Skywalker's new home). There is now a GoFundMe campaign for Kevan Chandler so he can see more of the world as well as a blog. I always say that you need to surround yourself with amazing people and Kevan's friends are the perfect example of how to be amazing! 

This week has, yet again, proven to me that nothing should stop you. Feeling trapped must be the most awful thing but there are great people and organisations out there willing to help. All you have to do is look and just go for it! 

One final note: Remember to look up at the stars and not down at your feet. Try to make sense of what you see and wonder about what makes the universe exist. Be curious. And however difficult life may seem, there is always something you can do and succeed at.  It matters that you don't just give up. Stephen Hawking, 1942-2018

Back in the Swing of Things

For the last two years, almost to the day, I have been somewhat of a... recluse. I think that is fair to say.

And here's why...

Two years ago, on January 26th, a beautiful soul somewhere donated her organs and I received a gift that has changed my life which makes me Dialysis Girl on Tour no more (does a little dance!). I am now Transplant Girl - Take Two - on Tour but that is much too big a name to have, I feel.

In later posts I will talk a lot more about what happened during my time in hospital and what has happened since. All the juicy details I know all you lovely people like to read. For now, however, I am going to start off nice and light to get back into the swing of things for me and, also, to ease you all in gently before things get gory again!

I thought I would start off where I ended things last time, with a post I did not get round to publishing. It is also about being kind to people which, right now in the world, is more needed than ever.

So... here goes. Dialysis Girl on Tour, but actually Transplant Girl - Take Two - on Tour, take two. Phew!!!

"Fit an Affa Fine Quine"

(English Translation from Doric - What a Lovely Girl)

I massively believe in Karma. If you do good then positive things will happen in your life.

This is a short story about a little person who, to me, did a big thing.

Four and a half years ago my beautiful cousin married the man of her dreams in Edinburgh.  I was, like, majorly excited - I absolutely LOVE a wedding especially when it is a relation. I come from quite an extensive family so when we all come together at events, like a wedding, it's the Scottish equivalent of Hajj!!

At the time of the wedding I had been back on dialysis for just over a year and a half and was still struggling with some of the side effects of the treatment. I had also recently been told that I would have to re-sit one of my modules again for university and basically do second year for a third time so I was feeling a little.... disheartened.

Before the wedding ceremony took place, several family members gathered together in one of our rented apartments to take pictures, re-connect, chat about what their children were now doing, you know, the usual thing. Then my cousin, one of the many, came up to me and said "did you know J (the cousin in question's daughter) wrote about you for her class project?". Stunned at the sort-of-random statement, I shook my head.

"Yes. She had to write about an inspirational person and she wrote about you".

Trying to hold back the tears I said thank you and spoke about how wonderful J was, and still is (both then and now), and how grateful I felt.

You may think that is was just a school essay but to me it was so much more. To have affected someone in that way is such a glorious thing. To this day I still get a warm fuzzy feeling whenever I think about it.

The Karma I am talking about is for J. The little girl who made someone who was a bit down feel very, very happy and loved.

Recently, and this is speaking from the present day, I was in Costco buying a few bits a bobs, walking around with my pizza slice in hand, looking for the free samples cause really, that's the only reason you buy the membership! That and family sized bags of sweet potato fries.

Anyway, I digress.

During my walk I suddenly needed to pee - cause I can do that now!! - so off I go to the loo. While sitting there I thought I heard crying coming from one of the cubicles. I stayed there longer to see if I could hear more after everyone else had left. After washing my hands a lady came out of the end cubicle who had obviously been crying for whatever reason. Her English wasn't great but I asked if she was ok. In her broken English she muffled out a "yes" and I instantly gave her a hug.

I have been there. I have needed a hug from someone, anyone, when I have felt sad and alone. I have been the person sobbing in the toilets for various reasons. Mostly because my feet are sore but the shoes were so pretty I had to buy them in the 3 even though I'm a solid 4/5 (boyfriend, take notes!!!)

Anyway!!

After about 30 seconds I let go and told her everything was going to be ok before I left. I do not know who she was, where she came from or what had happened. All I know is that at that moment she just needed someone to be kind to her.

No matter how small a gesture is, whether it be a smile, a compliment about your hair, a hug or a chat with a glass of wine (bottle),  it's the tiny things that make such a difference. You can change someone's whole day and even their outlook on life by just being nice, even if it is to a complete stranger.

Peace and love everyone. 

Till next time,

Kate x

P.S. Wherever you are Costco loo lady, I hope you're doing OK.

Sun, Sea and Parma Ham

Sicily was the first abroad holiday I had been on since going into acute renal failure the previous year.  So, when the opportunity came to go on - a free - holiday again I jumped at the chance and, surprisingly uncharacteristically, did not worry about where or when I was going to get dialysis or, in fact, what the centre would be like.  Or if they even spoke any English.  I let the holiday dialysis company fuss about all that whilst I just looked forward to some sun!

The other first for this holiday was the relaxation aspect of it.  The K's (Dad's side) and the M's (Mum's side) are the type of families who get up earlier on holiday than they do for work.  Every year, almost, my Mum's side would go skiing and if you were late for the 8am bus to the gondola or you could not walk fast enough because your poles kept falling, well then, that was your own fault.   I remember not speaking to my uncle for a day because he shouted at us for being late, which we were not.  Or on the majority of holiday's taken with my folks I was woken up at unsightly hours to go and see this special breed of seagull that can only be found on this remote part of the Scottish Outer Hebrides. On a trip to Majorca when I was two I was bitten by a pelican on the beach.  When I was about five, my parents and I went to Florida and during, what should have  been a pleasant tour round a national park, I was locked in the car watching my Dad try to kill himself by getting up close and personal with a 16ft alligator.  Or the time when we went skiing to Lake Tahoe and my Dad came back with a ripped jacket and told everyone he was attacked by a bear.   I was so excited I told everyone... turns out he is just a bad skier who collided with a tree!  Not that I am complaining.  I have so many incredible memories and have learnt some vital life skills during these times, like, do not ever go near a hungry alligator - very important when trying to remain alive!  

My Dad was fine, by the way, thanks for wondering.

So, the holiday to Sicily.  It was probably the first time I had experienced sun in 18 months (because Aberdeen is sunny for all of 24 minutes of the year) and it was utterly glorious. 

You know that heat that hits you as soon as you walk off a plane in a hot country? Ah, sheer bliss.  We landed on a scorching Saturday afternoon in Palermo and drove for an hour or so to the idyllic Hotel Alberi Del Paradiso in Cefalu, just a short five minute drive from the dialysis centre. Once you figured out the route.

 

The day we arrived we relaxed at the hotel. I am the sort of person who needs to unpack and settle before exploring. Call it old-wifey-ish but I like to feel comfortable in the knowledge that everything is in place.  Once that was finished, it was time to find one of my favourite things, Parma ham (which was my main food source for basically the entire holiday).  It was quite late after dinner so we trotted off to bed. 

I have to say, everywhere else you go to in the world (with the exclusion of the UK and America) they have the most wonderful breakfast spreads.  Each morning I had croissants and pastries and ham and fruit and cake and ham - the life!!
 

On the first, official, day we walked down to the centre of the city (town!).  Cefalu is beautiful, peaceful, traditional and perfect in every stereotypical Italian way.  Friendly people, good food, washing effortlessly swaying in the wind between two gorgeous ancient stone buildings, gelato parlours around every corner and a striking white church in the centre of the main square.  It was, simply, faultless.  We strolled along the beach and sunbathed on the generous golden sand. It could not have been better - I'm starting to sound like a travel brochure but it was stunning.

 

For the next couple of days we either sat by the pool - you must remember, this is very unlike us - sipping cocktails or venturing out
around the city (town!) to take in the sights and eat some spectacular food, which included Parma ham.
 

Tuesday was my first dialysis day and I needed it badly.  I had not had dialysis since early Friday morning and was six kilos overweight in fluid. There was some sort of confusion during booking.  Something to do with me supposed to be getting dialysis on the Saturday even though I had not arrived on the island - not our fault.  Nevertheless, the centre was clean, which you would hope as it was a private unit and cost my parents 360Euros a session - cash.  The staff were extremely friendly but did not speak much English, luckily I had brushed up on my Italiano, and the machines did not make an awful screeching noise whenever they beeped.  This was my first experience of new, swanky, Western European dialysis machines. They are very sleek.  Through my 'vast' experience of travelling with dialysis, I find it better to have it in the morning that way you do not waste the day.  If you are skiing, however, evening is best. Furthermore, if ever going abroad for dialysis I would thoroughly encourage you to either take a good book or download some movies/TV shows to watch while you are there.  There is only so much small talk you can make in a foreign language, no matter how lovely it may be. 

On the Wednesday we travelled to the picturesque, 14th Century town of Castelbuono. Yet again, stereotypically wonderful.  Even the meandering roads leading up the hills from the peaceful beaches we left behind were tranquil (I need to become a travel writer. Think Bill Bryson would take me under his wing?).  The Castle, which Castelbuono gets its name, stood in all its glory at the top of the town.  There was some kind of street flower exhibit on that the local children had produced.  There were arrangements of all sorts of very colourful flower pictures along the main street from Charlie Chaplin to Rodger Rabbit.  We spend the whole afternoon there engorged in gelato and beautiful scenery before heading back for more, you guessed it, Parma ham.  And some other actual food.

 

Thursday came and it was dialysis day again.  When I woke up I had this awful pain down the side of my left thigh but thinking nothing of it I carried on and headed for dialysis.  Throughout the day it progressively became worse. Not to the point of "get me to a hospital" just "get me some paracetamol".  Unbeknown to me until I arrived home I had shingles.  Nothing too serious unless you have not had the chicken pox - which my Dad had not had!  There was nothing I could have done, it just goes away after about ten days but bloody painful.

The penultimate night was an experience.  Now, I get hangry (hungry and angry) but I think my Dad is worse.  We sauntered down to a lovely, recommended, restaurant which seemed attractive from the outside.  I could tell by the time we arrived that my Dad was hungry, more so than Mum and I, and we needed to get food fast. We sat down and were ready to order within five minutes however 30 minutes had passed before someone came to take our drinks order, this did not bode well.  There seemed to be at atmosphere in the restaurant which made us uncomfortable.  After waiting 45 minutes for our food order to be taken my Dad was becoming increasing impatient.  I think the thing that made him hit the fan was when he saw the chef smoking in the kitchen. Have you ever seen a red English man argue with a red Italian maître d'?

No?

Good.

After a five minute show down, my Dad walked out with us speedily behind him but by the time we had reached the door, Dad had completely disappeared.  He's 6ft 2 and walks like the BFG, Mum and I are both under 5ft 4 and walk like oompa loompas.   So, we slowly walked back to the car, peering down every street to see if we could see a shining red stare glaring back at us (Dad, in case that was not obvious).  No such luck so we drove back to the hotel.  Once back in the room we found Dad bunched up angrily on the bed watching BBC News with what I believe was his last Dime bar and possibly a Snicker.  Mum and I went to the hotel restaurant for dinner, leaving Dad sulking in the room.

By morning Dad had calmed down and we spend a wonderful last day on the island. The meal at night was unruffled and I did not have Parma ham.

I have found that one of the main issue with dialysis patients is that they are scared to go on holiday because the units are unfamiliar and the way they do things is slightly different but, if you think about it, the way Tesco and ASDA slice their bread is different, doesn't mean it tastes any worse (bad metaphor but you get the gist).  In fact, I have found holiday dialysis centres far better, and more efficient, than some at home.  Find a good dialysis holiday coordinator, out-with your own unit, and let them help you with your holiday.  They usually have more contacts and therefore more destinations become available.  They will cost a little depending on where you want to go and for how long, etc but they will handle everything for you so your stress becomes insignificant.

Final word: I highly recommend Sicily as a holiday destination, whether you are on dialysis or not. 

My Kidney Does Not Work. I Do Not Pee!

"Never judge someone without knowing the full story"

It is one of my favourite sayings. And it's true - don't.

                                                                                     

I would like to think I am not a vindictive or horrible person however I know I can and, regrettably, have been because of how I was feeling on a particular day and people probably judge me very much on that. It's genuinely not who I am though.

Renal failure, and everything that comes with it -physically and mentally, is not known by many. Everyone knows about Cancer. It is a vicious disease and the sooner we can get rid of it the better. Yet, renal failure patients go through comparable things.  Please do not think I am taking Cancer lightly - I am not! I am merely pointing out the similarities between them in terms of what we have to go through and the amount of side effects we have.

I bet a lot of you who read this think that I go for dialysis, come home and it's all la-de-da.

Well it is not.

I have seen some horrific things and even experienced them myself. I want to make that known so more people can appreciate what we go through and hopefully join the organ donor register.

The main thing about renal failure patients that people should know about is that most of us do not pee. This way seem like an obvious thing but the amount of people who have asked me why is ridiculous. Think about it, our kidney's flush all of the toxins out of our bodies and ours do not work therefore we cannot pee. As a consequence, we retain fluid. Everything we eat and drink stays in our body. We drink a cup of coffee (which we are not suppose to do), everything in that stays in us. Even if we eat a strawberry (which, again, we are not suppose to do) that is made up of 92% water, we retain that fluid. 

A couple of years ago I was out for T's birthday, you all know T. It was a milestone birthday and we all went a little wild. Me more than most. I had dialysis of the Friday night and went out with the girls straight after. On the Saturday night she had a proper party and we all went out again. On the Sunday I went to Manchester with my Dad to a football game at 06:30. I got to bed at 05:30! When I went for dialysis on the Monday I had put on 6 kilograms. 6KG! That is almost 3/4 of a stone in liquid! At the time it was funny, I had never done that before. Looking back however, I realise how much pressure and potentially fatal risk I had put my body under. We have to be very careful about what we put in our bodies whether it is healthy to a 'normal' person or not. I have put these photos in to show you how bad it can get but these aren't the worst. I've deleted the realllly bad ones! The left photos are of me going to dialysis and the right ones are of when I am done. At first glance they are funny but it is actually pretty serious. I am very self conscious about the pictures and don't like going out in public when I look like that but it's the hard truth of what I go through on a daily basis.

 

High potassium and phosphate are also side effects of renal failure. Earlier this year I was suppose to have an operation on my fistula however on two separate occasions I was declined treatment because my potassium and phosphate levels were too high which meant I was at risk of having a stroke and a heart attack.  This is not known by many people, if any in fact. Furthermore, high potassium can cause extremely itchy skin and I have itched so much before that I took three layers of skin off my foot one night.

Another thing is that we get sick. Very sick. I am extremely lucky and have only been sick a small handful of times on dialysis and that was at the very start of my treatment but I know people who are sick every day they have dialysis and even when they are not in. During dialysis the machine takes approximately 350mls of our blood out of our body and pushes it through the filtration system. Some people cannot handle that and are violently sick for the duration of their treatment.

In addition to this we get severe cramp. Most pregnant woman and athletes will empathise with this. It's awful. As I stated before, most of us do not pee so during dialysis the machine, as well as clean our blood, takes off the excess fluid that has build up in our body. We can often misjudge how much fluid we take off during treatment and if we have put on too much then we're more likely going to get cramp. 

Cramp is the "involuntarily and forcibly contraction of the muscle that does not relax". 

I remember being in the side room once and I was just about to come off of dialysis when I experienced the worst pain of my life. Luckily one of the nurses was walking past my door and she immediately gave me some saline through my machine but that did not suffice. The cramp started in my feet and worked its way up my body in every muscle imaginable. This lasted for what felt like forever and before I knew it there were two nurses around me and a doctor frantically trying to massaging my muscles. The pain eventually subsided but I vowed to myself that I would never feel that pain again.

Furthermore, we can also faint from time to time. As a result of the fluid loss, again, our bodies sometimes can become low on liquids and we completely pass out.

We can also die on dialysis which is non-such-a-fun fact! This rarely happens I would like to stress, but it can and there are so many possible causes of it including haemolysis. 

"Haemolysis is the rupturing of red blood cells and the release of their contents into surrounding fluid (e.g. blood plasma)". 

This basically causes the red blood cells to explode and release deadly toxins into our blood and can happen if the lines accidentally become kinked. I would like to remind you that this genuinely hardly ever happens. But it can.

Several other things that can often occur in dialysis patients include:

·         Low Blood Pressure (hypotension). Low blood pressure may be accompanied by shortness of breath, abdominal cramps, muscle cramps, nausea or vomiting. If I have overdone the fluid intake I can feel the fluid in my chest and sometimes cannot walk very far (especially after the 6kg incident!)

·         Sleep Problems. People receiving hemodialysis often have trouble sleeping, sometimes because of breaks in breathing during sleep (sleep apnoea) or because of aching, being uncomfortable or restless legs.

·         Anaemia. Not having enough red blood cells in your blood (anaemia) is a common complication of kidney failure and hemodialysis. Failing kidneys reduce production of a hormone called erythropoietin (uh-rith-roe-POI-uh-tin), which stimulates formation of red blood cells. Diet restrictions, poor absorption of iron, frequent blood tests, or removal of iron and vitamins by hemodialysis also can contribute to anaemia.

·         Bone Diseases. If your damaged kidneys are no longer able to process vitamin D, which helps you absorb calcium, your bones may weaken. In addition, overproduction of parathyroid hormone — a common complication of kidney failure — can release calcium from your bones.

·         High Blood Pressure (hypertension). If you consume too much salt or drink too much fluid, your high blood pressure is likely to get worse and lead to heart problems or strokes.

·         Inflammation of the Membrane Surrounding the Heart (pericarditis). Insufficient hemodialysis can lead to inflammation of the membrane surrounding the heart, which can interfere with your heart's ability to pump blood to the rest of your body.

·         Access site complications. Potentially dangerous complications — such as infection, narrowing or ballooning of the blood vessel wall or blockage — can impact the quality of hemodialysis. This has been a problem throughout my treatment and I have had to get 6 operations on my arm in three years.

·         Amyloidosis. Dialysis-related amyloidosis develops when proteins in blood are deposited on joints and tendons, causing pain, stiffness and fluid in the joints. The condition is more common in people who have undergone hemodialysis for more than five years.

·         Depression.

(mayoclinic.org)

Just after I returned to college after I had been in hospital for six weeks I was in the lift going from the basement level to the ground floor. It was only one floor but having just come out of hospital I was extremely tired and decided to take the lift. There was a lecturer in the lift who asked me what floor I was going to and I said ground.

She proceeded to say "ah you're one of those lazy students who can't be bother to walk up one flight of stairs!!".

I wish I could go back and tell her exactly what was going on in my life because I didn't say anything and shied away in the corner. She was totally in the wrong and judged me before knowing the full story.

People can be mean sometimes. I know I have said and done things that I deeply regret because of how I was feeling that day. I do not mean things personally, it is just word vomit. I also try and understand why people say and do things because it is usually built up from something going on in their lives.

From now on, try not to judge people based on how they act because nine out of ten times they will regret what they say instantly!

Kate xx