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

Ignorance is Bliss?

"Eww, what's that on your arm??"

That, lovely person who is drunk and I have never met before, is what keeps me alive.

I have had numerous people coming up to me in clubs, bars, shops, uni, you name it, questioning me about my arm.

I am all for people asking what my fistula is. It is an interesting, yet slightly creepy thing and we, as the human species, are curious creatures. That does not, however, give you the right to be a total douche. You want to know more about my health and disease then by all means ask, I am happy to tell you anything. Just don't be so ignorant.

I use to work in a club and had to wear a dress that didn't cover my arms (or much else to be honest) and three or four times a night I would have people coming up to me and asking what had happened to my arm. It happened so often that I came up with the story that I had recently been to Arizona with my Dad and was bitted by a King Cobra. This story was foolproof until some biologist came along and was like "yeeeah..... King Cobras are from Southeast Asia!" Should've done my research!

The point is, I have to accept that my arm is a talking point and I am totally fine with that. I adore my scars. They are the lines on which I write my stories and the proof that I have battled relentlessly to get to where I am.

I have mentioned B briefly before in one of my past posts. We have been close friends for probably just under five years and she is one of the brightest, most loyal people you could even wish to meet and she, like me, has scars.

I'll keep her story short as to not embarrass her because I know she will be. At the start of our fifth year at school, B fought severe septicaemia and had to basically get all of her organs taken out of her body, cleaned and put back in again. As a result of that she has a scar leading down her tummy. May I just add, she was in hospital for like three months yet still achieved 5 A's! Incredibly smart.

We had a conversation a few years after her op and she asked me how I dealt with my scars. I said it like I did above. I love them but B wasn't so enthusiastic.

I would just like to tell you now, B, that your scar is beautiful and so are you. On the inside and out. That scar you have has given you the determination to do everything you have over the past five/six years and it is the reason you will become an amazing doctor.

Your scars are something to be admired and cherished. I know that my ex's and my current boyfriend love my scars and whoever you are with should love them too. If they don't well..... bye bye.

I cannot tell you how strongly I feel about showing off your scars, no matter where you got them from. Unless you are some crazy killer. In that case, hind them. Ain't nobody got time for that!

Whether you have a chronic illness, Crohn's disease, are a transplantee, whatever, you have earned your beloved life lines.

Be proud of them. Show them off. And don't ever care what other people think. You will always get the "eww, what's that" kind of people but let me tell you... they don't deserve an answer.

Until next time,

Kate x

Dear Friend,

Before I tell you about the next part of my story, I would like to remember a very special lady who so sadly passed away two weeks ago. This lady was on dialysis with me and I knew her for three years. She, and her husband, never had a bad word to say and I have never seen anyone love their wife as much as he did. They loved each other wholeheartedly and supported each other through all of their tough times. She was a tremendous women and fought so hard against her illnesses. Life is so short. You have to grasp every day and fill it with happiness. You can never know when it may be your last.

Rest in Peace, my love. I hope you are happy wherever you may be x

----------------------------------------------------------------------------------------------------------------

I ended last time with me being in hospital with kidney failure, again. I was in a phase of my life where things clearly were not going my way. All I kept thinking about was getting home and continuing with my studies. However, my life had changed and I had to adapt to it. As soon as I was discharged from hospital, with tubes still in my neck, I started back at college.

Then ended up back in hospital.

I had done too much far too soon and pushed my body to do something it wasn't capable of doing. I should of let myself rest but, for whatever reason, that is something I am not very good at. I need to work or study or clean or do something. I cannot just sit and twiddle my fingers but that was probably what I needed to do.

During the Summer of 2012 I lived in Aberdeen with my friend and in fairness, did not really do very much apart from shopped. I tried to apply for university but because I had not finished my HND at college, I did not qualify for third year entry. I had dreamed about going to Robert Gordon University for five years and I was truly gutted but, in true Kate spirit (yes, I used third person), I persevered and decided to give them a call. I explained my situation and the lovely lady on the other end said, "I'll see what I can do."

Even though I was not allowed into third year I was however accepted into second year. I know, second year again! But I was ecstatic and didn't care that I had to repeat a year. I remember my first day at uni, being so scared yet so proud to have finally made it to where I had always wanted to go. But things never stay the same for long.

Three weeks into uni I contracted pneumonia and ended up back in hospital again. At Christmas I, somehow, managed to catch meningococcal meningitis and pneumonia at the same time which lead me to not being able to sit my exams. In April of 2013, same time as my exams again, I had influenza A (really bad flu) and did not manage to submit a piece of my course work. That meant that I had an exam to sit over the summer along with making a documentary and developing a website with little information about how to do either because I had been off for so much of the terms.

With a lot of work and help from my friends I am happy to say that I passed the exam and handed in my website (albeit, I got a D) but I didn't quite get my documentary done in time. And to make things even more annoying because of the amount of credits the documentary was worth I was not able to carry over that module whilst studying third year. So, again, I had to re-sit second year.

Whilst studying part-time I worked for the majority of that year at a business development and marketing company as their marketing assistant and I was so lucky to be part of such an amazing and supportive team. In September 2013 I decided to apply for the Glasgow 2014 Commonwealth Games - which I will go into detail about another time - and heard in the January that I was successful and one of their 15,000 volunteers! I thought this was the perfect subject for my documentary and while I was there I recorded a video diary. Safe to say I achieved an A... PARTY!!!! So worth the wait.

So, everything was finally picking up. I was in an amazing relationship with my boyfriend, I had been awarded Student Ambassador of the Year by RGU for my contribution to the students and The Great Scot of the Year Award for my contribution to sport for the Commonwealth Games and my determination throughout them. I was finally away into third year (thank the Lord) and moving into my own Home... And got Eta. That was last October and since then, touch wood, I have not been in hospital, apart from dialysis obviously, been on holiday six times and finished third year with virtually no setbacks and achieved another two A's.

 

There is nothing more powerful than the determination of your mind. Set yourself goals, write them down, make a dream board, whatever it is you need to do to visualise where you want to be. It may take you longer, you may need to take a path that you initially didn't want to but that will only make you stronger and you will be so proud of yourself by the end of it.

I fully believe that everything happens for a reason. Yes, of course I sometimes get upset about my condition, it is only normal, but I am not angry. So many good things have happened in my life in the past three years. I have met some incredible people and work in places that I probably would not have if this disease had not taken over. You have to look at the positives of every situation and maybe they are not always clear at the start. But you'll find them.

Until next time,

Kate x

Guys, my Feet don't Fit in my Shoes...

For the last ten years I have made some amazing, lifelong friendships. I have friends who tell me like it is. We may occasionally fall out because one of us had a dream that one kissed another's boyfriend (just me actually!) but they have been my rocks and were there for me when times got hard.

Writing this blog has made me reflect on all the good times I have had and one memory in particular sticks out for me.

I have been friends with this girl - we'll call her T to save confusion - for about 11 years now and because we both came from the country we instantly clicked even though we were complete opposites. T, when I met her, had never worn a dress in her life and me, well, I use to wear heels to the farm! Country bumpkin + daddy's girl = perfect combination.

T had horses, and I loved them! I always wanted a horse so I use to go over as often as I could to see them and go for rides, however, one day while I was over, T's Mum asked us to clean out the stable.

Well, you can imagine my face when she said that. I do remember thinking "I don't want to get my nails dirty!" - pathetic but it still happens.

So, off we both go, me actually wearing wellies for a change, to muck-out her horses in a sticky, muddy field. Everything started out great. We'd set ourselves a target of having to fill a wheel-barrow full of poo before the next car came past us. We had been working for about 45 minutes until we came across a sheet of corrugated iron. This obviously had to be moved so that we could continue working however we found this a bit trickier than we should of. We both decided to take an end each and carry it over to the fence so we could take it back to the house later.

Now, you recall the field being muddy and sticky, yes? Well as we were moving said piece of metal my wellie boot got completely stuck in the mud. So did T's. Then so did my other one. Then T's.

Two girls, stuck in the mud, holding a piece of corrugated iron.

Every time I moved I pushed T back. Every time she moved, I fell backwards. The mud was so deep that it was physically impossible to get our boots out of it. We struggled for a good 10 minutes trying to get out of this predicament until I needed to go to the loo. I went from a scale of like... hmmm I could use the loo right not to OH GOD, I AM ACTUALLY GOING TO PISS MYSELF in the space of 5 seconds. Stuck in the mud, legs apart and the inevitable happened. 

14 years old, standing in the middle of a field and I peed myself. 

I could feel a slow, warm trickle down my leg but I could not stop it. I could not move because I was fused to the ground, I could not let go of the iron sheet because it would make T fall over and I could not for the life of me stop laughing so I just had to let nature take its course. To be honest I wasn't even that embarrassed until I had to face T's Mum and tell her what had happened, ask her for some new trousers and get her to wash mine.

It is having memories like that that make sitting in a hospital bed bearable.

For the next four years I studied alongside T at High School. I was certainly not the brightest pupil and in most of my report cards my teachers would write, "very bright young girl. If only she would stop talking so much and focus on the tasks given to her". Story of my life!

I may not have been academically clever but what I lacked it brains I made up for in extracurricular activities:

• I was part of the school choir, even though I cannot sing!
• During my second and third year I entered myself into a speech making competition and won both years
• Leading from that I use to give presentations to the school at assembly's and I spoke at our final school prize giving in front of pupils, teachers and parents
• I helped organise a French exchange trip in my 5th year
•  Whilst studying for my highers in sixth year I was a Guardian for the new first year pupils and a help and support student for a third year pupil who has autism
•  I was a keen member of the Christmas Dance, Spring Fling and Year Book committees and Vice Captain of my House (Delgaty Till I Die!!).

(I literally just copied that from my LinkedIn page because I couldn't be bothered writing it out again!)

At the start of my final year I started dating my ex. We were together for the whole of 6th year and I had an amazing time. Not just with him but with all of my friends. We, I thought, were a great group and we spent the majority of the year annoying the janitor, playing the Xbox in our "common room" and drawing mice on the walls. And studying, obviously.

When school ended, we all started our lives as almost adults. Starting uni, starting work, travelling. My ambition was to go to university but because I didn't achieve my grades, I started college studying Advertising and Public Relations. There I met two of the best people ever, H and L. L once said to me "when I first met you, I thought you were a total bitch. You're alright actually" and I have always loved her honesty.

About 3/4 of my way through first year of college I broke up with my ex. It was one of the hardest things I have ever done and for a long time I really regretted it.

The Summer of 2011 changed a lot for me. I was moved up to the adults hospital from sick kids and it was a dramatic adjustment. I wasn't given the constant encouragement to look after myself and I went completely off track. I still had people looking out for me but I stopped looking after myself. I never would, or ever could, blame my ex for what happened to me nevertheless the loss of our relationship left me completely heartbroken and I started drinking a lot more than I had ever done before. I moved into halls with H and we partied, hard. Not ever thinking of the ultimate damage it was doing to me or my kidney. I started working long hours whilst being at college and still going out drinking.

The thing that I believed triggered my decline was a tooth extraction a month before I was admitted. I had my wisdom tooth removed and three hours later I had a college presentation to do in front of a major client. Being immune suppressed I was more susceptible to infections and colds and after the tooth extraction I became lethargic and weak. I did not realise how much of a toll the extraction would have on my body.

I honestly believe there needs to be a better support system in place at the hospital for young patients transitioning up to adults. You go from having a paediatric nurse there for you 24/7 if you need, to nothing. The dangers of not taking proper care of yourself when you have an illness need to be made so much more aware to young people. Every kid at 18/19 thinks they are invincible and even I thought that. If I had taken better care of myself then my kidney would not have gone into rejection.

 

Saying that, every cloud has a silver lining. If this had not happened to me then I probably wouldn't have made the fabulous friends that I have or gone to the Commonwealth Games. I wouldn't of had Eta (my cat) and, most importantly, I would not have met A - the most amazing and supportive boyfriend anyone could ever ask for. But that story is for another time.

The day before I was admitted into hospital I was over at T's flat with her flatmates and our close friend's B and I. We were getting ready for a night out and I turned to them and said "guy's, my feet don't fit in my shoes!" Thinking nothing of it we made it into a joke and carried on with our night.

The next day, on 21st January, 2012, 12 years and one week after my transplant, I was admitted to Aberdeen Royal Infirmary with chronic renal failure for the second time. Really, the whole foot thing should of been a right give away!

I was in hospital for six weeks with tubes coming out of my neck and arms and on 12 different pills a day. I only cried twice whilst I was in there and, as always, that was because of my Mum not letting me feel sorry for myself and just getting on with it - an attribute I am very proud of. I was in and out of hospital 13 times in 14 months. I had to put my studies on hold for the time being and focus on my health.

Without my memories I would of been in a very bad place. My friends and family always cheer me up whether I am with them or not and I am so blessed to have them with me on my journey.

Until next time,

Kate x

Reporting to you from a Big Pile of Excrement.

I figured that I might as well start from the beginning, easiest place to I suppose, and tell my story in four parts: how I came to have kidney failure; my time during my transplantation; my decline; where I am now.

"Yeah, I ate s**t."

Always a definite ice breaker!

And, yes, it is true. I ate s**t. That is how my kidney failure started.

I always try to make my story humorous. Maybe it makes it easier to deal with but the truth is I did, genuinely, eat cow excrement and contracted E-coli 0157 less than a week before my third birthday.

(I must warn you now that I will probably be quite explicit in describing medical things so if you're squeamish, look away now).

I should also point out that I did not intentionally eat said faeces. I grew up on a farm and our family dog rolled in manure. I hugged the dog and consequently got the manure on my hands. Me, only being three, put my hands in my mouth... and that's how it happened!

Within a matter of hours of eating the excreta, I started to have all of the usual E-coli symptoms, low fever, nausea, vomiting, bloody diarrhoea. My Mum, who clearly knew something was wrong, took me straight to the doctors. She took me there three times over the course of a couple of days but was told over and over by the doctor that she was "a neurotic mother and your child only has a tummy bug. She will be fine in a few days!" - this may be why I have doctor trust issues!

Anyway, on the third day my Mum, bless her, rushed me to A&E where the doctors immediately spotted what was wrong. I have never really heard what happened after that. All I know is that a little boy, the same age as me, in the bed next to me, with the same disease, died. I cannot begin to bring myself to think of the pain that my parents felt and I can imagine the trauma has probably never left them. Without my mum's determination, I would not be here, writing as I am.

For almost four months I was in intensive care, with my Mum constantly by my side. I was read to, soothed by her kind voice and loving intent. I know that she always cared for me and she would have never left me, loving me the way she always has done, every day.  

I was finally allowed home after five months of being in hospital but I would never return to a normal life. I was on peritoneal dialysis for 12 hours. Every day. I was unable to do a lot of activities children of that age are suppose to do like go swimming, go to sleepovers with my friends, do any physical sports or eat chocolate, crisps, chips, any sort of junk food (which, in hindsight, is not a bad thing).

I was unable to do a lot of things but there was one thing I was always extremely wealthy of,

Love.

There was not one day where I did not feel cherished by those around me. Whether it was my parents, the nurses who looked after me or my amazing relatives.  Coming from such a strong family has moulded me into who I am. We have laughed together, cried together and most importantly supported and loved each other through hard times.

No matter where you get love from, may it be your family, friends, work colleagues, fourth cousin twice removed, it is so important to have that network of people you can rely on in times of need.  

For four years I was on PD dialysis until January 2000 when my Mum donated one of her kidneys to me. Though I will never be able to express my gratitude, I hope she knows how grateful I am for what she did for me.

So, even though I ate s**t, those four years of my life, until my transplant, shaped me into who I am and - not being immodest - I think I rock! Actually starting to sound like my Auntie right about now...

Until next time,

Kate x