Having the haemodialysis catheter fitted...

After the whole drama llama of having my peritoneal dialysis catheter replaced again in January I was told I would not be able to use the catheter until it had fully healed from the hernia operation. So as a temporary option I was fitted with a long central line running into the juggular vein in my neck. Extremely uncomfortable and not the nicest looking of things.

However things were about to go to a whole new level when I was woken up one morning at 7:30am by a nurse telling me that I needed to "go have my line changed." At this point I had no idea what she meant. Until she explained to me that the uncomfortable central line in my neck was temporary in the sense that it could only be kept in for 5 days maximum...

Now, I still to this day do not know why they didn't put a more permanent haemodialysis catheter in, seeing as they knew my peritoneal dialysis catheter would be out of action for at least 4 weeks. Not 5 days!

Either way, I was wheeled down to the Vascular Laboratory to be told that the one I had in had to be removed first before they inserted the new one in. A renal registrar from the ward came down and pulled this line out of my neck. An extremely bizarre unpleasant feeling and then obviously cause it was my big juggular vein, I pretty much bled quite a lot and the doctor had to put so much pressure on my neck that I thought he was going to strangle me. It was very sore afterwards from the whole ordeal.

I actually thought that was bad enough but I was in for a shock when the new one was being put in. I was awake for this procedure. Using just local anaesthetic to numb the are they shoving a needle/tube through. However you cannot numb your veins and arteries inside so the whole procedure had me hysterically crying and pretty much screaming.

Also, because it's me and I'm extremely unlucky... I had to have the procedure done twice as it did not work the first time due to blood clotting after removing the first temp dialysis central line.

The whole experience was very traumatic for me. Almost like someone quite forcefully plumbing my veins/arteries and trying to feed a tube down a small narrow hole.

I could go into detail about what actually happened but I figured I could show you a video instead. SEE HERE. (Not really for the squeamish!)

Afterwards I certainly felt very sorry for myself. I was starting to feel better after the second peritoneal dialysis insertion and was just getting used to the central line in my neck... However this was just the icing on the cake for me. I ended up being in hospital another 4 days after this and my neck remained incredibly sore for a few weeks afterwards. 

Here's a photo of me a few hours after the insertion of the tunnelled haemodialysis catheter. Feeling rough is an understatement. 

World Kidney Day!

World Kidney Day (WKD) is an annual global awareness and education event, held on 13th March every year. The event provides the perfect opportunity to get out in the community and share the WKD message with friends, family and people you meet. It is also a chance to raise awareness of the importance to life of your kidneys, how you can look after yourself and the risk factors for kidney disease - you might just save a life!

Considering I am going through Chronic Kidney Disease myself, I feel quite strongly about this. I've had kidney problems since birth, therefore I have been introduced to the world of kidneys since a very young age. However, some people I know have absolutely no idea what the kidneys even do or how important they are. I don't blame them of course, why would they? However I definitely think more awareness must be made regarding kidneys.

There is a lot of spotlight held on certain illnesses within the UK, but everyone seems to forget about the not so common illnesses out there. Don't get me wrong there is a lot I need to learn and be educated on when it comes to different illnesses and conditions out there, however this is one that is very close to home for me.


There are currently 5,680 people in the UK waiting for a kidney transplant. I am one of those statistics. Last year, 335 people in the UK died whilst waiting for a kidney transplant. That's nearly one person every day. I do not want to be one of those statistics.

There are at least 1 million people within the UK with moderate to severe kidney disease that have not yet been identified. 20% of people with kidney failure are only referred to a kidney specialist when their kidneys have already completely failed and their outcome is poor.

There are roughly 26,000 people in the UK receiving dialysis treatment for kidney failure and that number is rising every year.

I think these facts suck and they need to change. Whilst technology is constantly moving forward, those affected by kidney failure are generally having a very shit time. I don't wish kidney failure on my worse enemy.



What can you do to help yourself and your kidneys?

· Keep the Pressure Down – High blood pressure accelerates kidney damage. To protect yourself from kidney disease you should monitor your blood pressure regularly and maintain a diet low in salt and saturated fats.

· Keep fit and active - This helps reduce your blood pressure and therefore reduces the risk of kidney disease.

· Don’t smoke - Cigarette smoking slows blood flow to the kidneys, decreasing their ability to function properly. Quit smoking to slow the progression of kidney disease.

· Eat healthily and keep your weight in check - This can help prevent diabetes, heart disease and other conditions associated with kidney disease.

· Know your kidney function - If anyone in your family has suffered from kidney disease, if you are diabetic or if you are of Asian or African ancestry, it is particularly important to get your kidney function checked by your GP. In the western world, 30-40% of patients with kidney failure have Type 2 diabetes.

Kidney failure and kidney disease does not always show symptoms, therefore it's up to you to get them checked and keep them healthy.



What can I do to help?

Have you ever considered joining the organ donor register? I know loads of people who would do it, but lead such busy lives that they have just not got round to doing it yet. It takes 2 minutes to join and you can do so here!

Obviously we all know that signing the organ donor register means you give permission to donate your organs when you die, however in this day and age; technology and doctors have become so advanced that people are living longer and doctors are able to revive more and more patients throughout the UK. Whilst I don't wish anyone to die of course, it does mean that the number of organ donors is decreasing. The waiting list at the moment for a kidney donor is 3 - 4 years on average.

However what a lot of people don't realise is that you can now donate a kidney whilst still alive and go on to live a happy, long, healthy life afterwards. This is called Living Kidney Donor. You can do this for a friend or family member or you can even choose to donate your kidney to a complete stranger. This is called an Altruistic Kidney Donor. There is more information on the Organ Donor website.



I hope this post helps raise awareness, answer some questions for you and maybe even inspire you to do something amazing!

The start of new treatment... Haemodialysis.

Because I had just recently had my dialysis catheter changed, the doctors decided that I should rest the peritoneal dialysis catheter for about 4 weeks so it heals properly and to give my poor body a break. However I am now dependent on dialysis and I need to have dialysis somehow so they fitted me with a temporary line. 

The first few days I was in hospital I was very out of it due to the painkillers I was given and I was still in pain despite the painkillers. My bladder did the whole 'trauma shock' thing again and I had to have a urinary catheter placed into my bladder as the muscles didn't know what to do with themselves. I think I was now sporting all the catheters in the world. The urinary one, the peritoneal one and the temporary central line catheter. I should rename this blog to "The Girl With All The Catheters" Ha! 

I cannot begin to express the feeling of discomfort I was in, tubes coming out and going into all sorts of places. I was feeling pretty rubbish. Not to mention that I had not had any adequate dialysis for a while so now I was feeling pretty ghastly. However the temporary central line catheter meant that I was now able to start haemodialysis treatment. 

Haemodialysis treatment has always scared me a little and I guess I was misled slightly about what it's all about. I was taken to the dialysis unit at Manchester Royal Infirmary which happens to be attached to the ward I was on and it was specifically there for inpatient dialysis. I was still bed bound at this point, so I was wheeled in and introduced to this whole new world of treatment!

The haemodialysis machine is much bigger than the peritoneal dialysis machine and it definitely looks a lot more complicated. However all I had to do was lie there whilst specialist nurses connected me up. I was absolutely delighted to learn that the whole thing was painless. Once I was connected and I saw my blood going into the machine I was relieved that there was no feeling/pain involved. 

There has got to be a catch right? However I'm very happy to say that there wasn't really. I was sick the first time but I was being sick anyway. The temporary central line catheter is in the jugular vein leading to the heart and the blood came out easy! So much for all the doctors who struggled getting blood from me for a simple blood tests! 

The haemodialysis machine deals with the main supply of blood and it takes a good circuit of blood out of you each time, but then puts it back in so the machine is technically in effect an extra circuit to your blood circulation. This can sometimes mess with your blood pressure so towards the end, my blood pressure dropped dangerously low. However I quite enjoyed the feeling. I felt drunk and out of it. I was slurring my words and looked like a drunk! My poor mum was fretting slightly as she noticed I was fine one minute and the next minute I was so out of it I didn't know who she was. However the nurses slowed the machine rate down and my blood pressure stabilised. 

Haemodialysis is normally carried out about 3 times a week as a starting point for new patients, however because I needed the dialysis, I went every other day whilst I was on the ward. The treatment takes 4 hours and about an hour of connecting up and connecting off. However when you're on a hospital ward, getting off the ward to go somewhere else can be a little exciting and gives me a break from the ward monotony. 

Not an amazing picture of the haemodialysis machine. But yes, that is my blood in those tubes! 

Back to square one with the peritoneal dialysis catheter...

The lack of posting has been due to the fact that I've been in hospital for the past two weeks and I've been home for  just over a week recovering. I got given a date to come in and get my hernia sorted out pretty much straight away and was told to come in to hospital on January 16th.

I was actually feeling quite well before I went in despite the hernia I had, however the hernia needed sorting out and my amazing CAPD nurse managed to get me slotted in with a surgeon quickly so it was sorted out.

So what's been happening? Well all I can say is that I've probably had the roughest ride of my life the past few weeks.

I went in for surgery on Friday 17th January and I came round in the recovery room in quite a lot of pain. :( Before going into surgery I had built up this wall of fear and anxiousness as I was worried because of how bad it was last time I went to surgery. Whilst in surgery they decided to reposition the catheter so it would stop causing me pain on a regular basis. However the surgery revealed that it wasn't actually a hernia and I didn't need a hernia repair... Instead I had a bizarre leak of peritoneal dialysis fluid which was in a little sac around the anchor of my PD catheter. The surgeon ended up replacing the whole catheter rather than repositioning it so when I awoke it was the surgery I had done in June all over again.

One of the daily pains I got with my last catheter was than if I never had any fluid in I would get this sharp twinging pain near my bladder which the doctor said was my catheter sat on a nerve above my bladder. It was highly uncomfortable and painful. However this time I woke up and that pain was there constantly. I couldn't actually believe it and I thought the whole thing was back to square one.

I'm not sure if I'm just a big moaner and I need to get over myself. But on Friday night I was in severe pain and pretty much screaming with it on the ward. My boyfriend and family were helpless with it all but I was grateful to have them there.

After a crazy cocktail of painkillers I finally settled and started to rest and the recovery has been a slow and painful one. Also because I had not been getting adequate dialysis with the so called hernia that I had. My levels were now going crazy and all over the place and my heart was fluttering due to high potassium levels. 

I also came round from surgery with a temporary haemodialysis line hanging out of the side of my neck! The whole thing was very inconvenient and in an awful place. This temporary line was so that I could have haemodialysis instantly after the surgery. 

The awkward temporary haemodialysis catheter.

Why won't my body give me a damn break?!

I have no idea what I did in a past life but it must have been pretty bad as my luck is not on my side with this illness.

I recently had a PET test and adequacy test which measures how your dialysis is going and whether you are getting the right amount of dialysis. My results showed that I wasn't getting enough dialysis and that's why I was feeling pretty rubbish.

Slowly but surely the community nurses have been introducing bigger volumes of dialysis fluid and longer dwell times into my treatment regime. I know for someone who knows nothing about dialysis that this probably is going way over your heads so let me try and re word it.

I started off having 1500 mls (1.5 litres) of fluid in and then that fluid will sit in my periteneum cavity. It will dwell in there for a certain period of time and then be drained out. During the dwell time, toxins are absorbed into the fluid and then are drained out after the dwell time. That's one cycle... I usually have 5 cycles per treatment.

They decided to increase my dialysis to 2000 mls (2 litres) with longer dwell times. However having 2 litres in your body whilst lying down is pretty uncomfortable. I look like I'm pregnant, very bloated and I struggle to even cough or sneeze. Also when lying down the fluid disperses across your torso and pushes up into your lung cavity. Everything is being pushed out of the way by this fluid and sometimes it makes me feel sick with indigestion because it's pushing my food up.

I complained about the volume and how uncomfortable I was feeling with it. It felt like it was stretching near my bladder area and my bellybutton looked odd and not right. However I was told I would "get used to it over time." 

My nurse also suggested that I have a daytime fill of fluid so in effect I would be dialysizing for 24 hours a day. She wanted me to put 1500 mls in and then just leave it all day until I went on the machine at night and that would hopefully get off more toxins therefore giving me better adequacy of dialysis.

The first day I did this daytime dwell (2 days a go) I felt full and uncomfortable but did my best to ignore it. It also happened to be my boyfriend's birthday on that day so I didn't want to be moaning on his birthday. It got to about 8pm and then one of my friends and my boyfriend noticed my stomach looked odd.

There was this odd protruding swelling right under my belly button and over the incision scar from where I had my dialysis catheter fitted. Also the swelling round this area was discoloured and much paler than the rest of my skin. It looked freaky and bizarre and like some kind of alien baby pushing out of me.

As you can see in the photos... My stomach is bloated and full and then there is the odd protruding swelling which is discoloured. It was tender to touch and I had no idea what it was. I thought dialysis fluid was leaking out of me. In which case this is very bad and requires hospital treatment!

Cue the trip to A&E on the night of my boyfriend's birthday - not really what I had in mind, however it needed to be sorted and checked. 

Turns out I have a hernia. An incisional hernia. The incision in which was made to fit my dialysis catheter had torn apart and that was my stomach being pushed out by all the dialysis fluid. If I wasn't on peritoneal dialysis then I could just leave it and ignore it. It'll probably heal on it own. However because I am on dialysis and I need big volumes of fluid inside me, I need to get it fixed. The only solution to the problem is surgery. Incisional Hernia

This petrifies me as last time I had surgery around this area it was like going to hell and back. The complications, the pain and recovery were all a nightmare for me and something I don't wish to go through again. :( It makes me sick thinking about it. 

Also my doctor said that he would also move the catheter into a better position for more comfort. However this involves messing about with something that is already fragile and a sore point so I'm guessing it's going to be painful like last time. 

Everything in kidney failure has some kind of domino effect on everything else and this hernia... which has been caused by too much volumes which were increased to give me better dialysis is now going to affect the dialysis treatment as a whole. 

I now can't have as much dialysis as I wanted and I can't have the daytime fill/dwell meaning I won't be getting enough dialysis and I will start to feel rubbish again. I have been warned to expect to feel this way and that my bloods will be all over the place with toxins etc. Also the muscles in my stomach area are very sore and I can't even go to the toilet properly... So constipation has set in and that's painful in itself, never mind everything else!

I really don't want to feel that ill again. I would love to just feel normal for once and feel comfortable in my own body without all the hassle and little things that bug me. :( 

So, the next few weeks are probably going to be pretty rubbish. I guess you can never prepare for how shit you actually feel, even if you know it's coming. 

Here's to hoping my body actually gives me a break soon and I get SOME good news! 

What to do with myself?

With it being the whole New Year thing and everyone posting their new years resolutions for 2014 I thought to myself, what are my new years resolutions?! 

There's loads of things I want to do but I sometimes feel like my life is on hold because of this stupid illness. I would love to be working but in reality the ratio of being well and unwell is too unpredictable therefore I don't know if I could hold down a job at the moment. Not to mention I am in and out of hospital nearly every week so I have to fit everything around that.

Some days I wake up rearing to go with an impressive amount of energy and other days I wake up and I feel very low in energy. Part of me thinks it's mental sometimes... I went from working lots of hours in Thailand with my own independence to doing nothing and now I feel like I'm stuck in a non-motivated rut. It's very frustrating. :(

My dream job is to be a graphic designer, but I still need to build up my portfolio... But I lack confidence in my own work and the lack of confidence is then double with lack of motivation... What a vicious circle. 

I guess my new years resolution for this year is to get myself into some kind of self-disciplined routine where by I do some work and build up my portfolio and gain confidence in my own work. But it's much easier said than done. 

I also want to lose weight as I used to be very thin and even did a bit of modelling. However now I feel frumpy and the dialysis fluid makes me look bloated and horrible. I wish I felt a bit more sexier in myself and didn't have this stupid tube coming out of my tummy and such a weird bloated shape. :/

My apologies for the ranty post... I'm having a moment of "what the hell am I supposed to do with myself?" and I feel like everything revolves around this bloody illness. 

The things we take for granted...

After the shock of my mum having her heart attack and being told she can't be a donor to me I did feel quite down and depressed about it. Part of me was angry and thinking "Why me?!" when I thought things were going quite well after the hellish ordeal of having the catheter fitted. However i guess it's just one of those things and I'm glad it's happened now rather than later as it probably would have happened whilst she was on the operating table and that would have been much worse. The guilt would have been unbelievable. Your own mother is trying to save your life and she has a heart attack whilst trying to give you a kidney?! No thanks. I'm thankful it's happened now and see it as a sick blessing in disguise.

At the beginning of December I started to feel very ill, even though I was doing the dialysis, my energy levels dropped and I felt horrendous. I became delirious and unable to hold a conversation as I drifted in and out of consciousness. I was rushed into hospital and diagnosed with Peritonitis. An infection in the peritoneum. Very painful and unpleasant and unfortunately one of the things that can happen when you're on peritoneal dialysis. This is probably the most ill I have felt since being on dialysis and it was a very rubbish time for me and it's one of the reason I didn't update this blog as I was ill/recovering.

It turns out the dialysis treatment I was receiving was not adequate enough for me and I was building up with toxins inside my body which was making me feel rubbish and low energy. I developed weird symptoms. One of them being extreme tiredness and lethargy. The other being restless leg syndrome. How on earth this symptom relates to kidneys I have no idea, but it's apparently quite common amongst kidney failure patients.

I cannot begin to describe the frustration I felt. I wanted to do things like a normal human being but couldn't, can't sleep cause of the restless legs, tiredness was overtaking my life, added with insomnia and feeling like rubbish. Frustrated is the only word I can use to describe but overall it was a tsunami of feelings. I felt like a failure. Not only was my body letting me down, it was letting everyone else around down too. My boyfriend had to look after me pretty much and we were restricted to what we could do and couldn't do cause of my health.

The nurse confirmed that my body wasn't getting enough dialysis and the way I was feeling was similar to a person without any dialysis and my kidney function had dropped to 1%.

Yes, I am now walking around with 1% kidney function. :(

I have altered my dialysis since the beginning of December and I am starting to feel better again, however it's all a scary prospect really to think that I only have 1% kidney function left. :(

Christmas and New Year for me was a quiet one really. I spent most of the time with my boyfriend, family and friends. Having this illness has made me realise how precious life is and how important it is to have your family around you. The things we take for granted eh?

Back to square one on the search for a kidney...

I know it's been a while since I updated, however things have been up in the air and very hectic on my end, therefore I've not found the energy to update. However I will definitely be getting back on it...

Ideally I want to carry on with the journey from where I left off... However quite a lot has happened and I feel the need to update about it so be prepared, this is going to be a long one.

Once I had recovered from the surgery of having the peritoneal dialysis catheter fitted I finally got a solution to my problem. In the UK  there are two main providers of peritoneal dialysis machines. Baxter and Fresenius. Baxter is the main one, used by most over the UK, however Fresenius has started making it's appearance and some patients reported that the Fresenius peritoneal dialysis machine hurts less than the Baxter one. So my renal team arranged me for to receive a new delivery of a new machine and all new dialysis supplies... So that first delivery I was given... Went completely to waste as they're not allowed to re-use any dialysis products which have been prescribed to someone else, even if they have been untouched and are still in their original sterile packaging. Crazy if you ask me and a total waste of resources.

I finally trained on Fresenius and it was a success! Still slight discomfort when the machine is draining fluid out but much less painful than the Baxter machine. I figured a few of you don't even know the process of what happens during peritoneal dialysis so here's a useful and informative link: Peritoneal Dialysis

Adjusting to doing dialysis every night wasn't so much of a problem as I have a very supportive boyfriend and family around me helping whenever possible... More than anything the whole thing is a massive pain in the arse. Having to set it all up, keep everything sterile, 2 minute handwashes, alcogel a-go-go! Sometimes you just wanna get your pyjamas on and jump straight into bed, however my bedtime routine had turned into this. It's not so bad though, usually my boyfriend does the 5 litre dialysis bags and then I sort out the machine and connect up. We seem to have a system going and it works. :)

Some of you may already know... My mum was going through testing to see if she could be a living donor in order to donate one of her kidneys to me and it was a rather exciting time for us all. She passed all the tests which took about 6 months to complete. However a few weeks before her final test my Mum suffered a heart attack and had to have anglioplasty performed to open up one of the blocked valves in her heart.

Hearing this news was a massive shock to me and I am glad she got to the hospital in time as I don't know what I would have done if the outcome was any different. My mum is recovering well thankfully... However because of her heart attack it means she is now not eligible to be my living kidney donor. Even thopugh she was a 100% match.

Gutted doesn't even cut it. :(

The problem really is that I had my hopes up on her being a donor and they were estimating "around January, after the New Year" in doing the transplant if all went well... Well it's 2nd January now and I'm definitely not getting a kidney transplant anytime soon. I guess it's not the end of the world but I really don't want to be on dialysis for a long time. Whilst being on dialysis has given me a little bit of life and energy, it's still not the ideal life I want to be leading. I feel like my life is on hold a little bit until I get a kidney transplant sorted.

So, I'm pretty much back to square one in looking for a kidney donor and I'm pretty desperate. One of the renal consultants told me to get appealing and asking around... But seriously, who goes up to someone and asks seriously "do you want to give me the gift of life and be my kidney donor?" - what a way to put someone on the spot and test the friendship?! So I decided to make a facebook group. The group was more or less to just get people aware that I'm looking for a kidney and if someone thinks they might wanna go ahead and get tests done that they can contact me via facebook and I can pass the transplant co-ordinator details on and then tests can be arranged. The facebook group is: Living Kidney Donor

Testing takes about 5-6 months to complete under the NHS so I'm not going to hear anything for a while, I guess it's just a waiting game for me to see if anyone out there goes through with the testing. I really hope they do go through with it though. I can give the number out but it's up to them to call it up and go through with all the tests and appointments.

I really need to up my game if I'm to find a kidney soon. So this year I am going to focus my efforts on raising awareness about being a living donor. There is so much potential out there if the public actually knew what it was all about and what it all involves, but because it's not in the limelight i don't think it even crosses people's minds. I mean, I wouldn't even consider it if I didn't have the problem myself. 

So if anyone has any suggestions as to how I can up my game in search of a living kidney donor then your suggestions are welcome and most appreciated. 

Big life changes...

Apologies for the slight hiatus... I've been having a rough two weeks it seems so I've not had the motivation to update. 

I was supposed to start dialysis about 2 weeks after having the peritoneal dialysis catheter fitted. However due to the surgery being quite painful and the aftermath being a nightmare in itself - the whole thing had to be put back. We did try at first but it was a traumatic and painful ordeal. 

Now I was a new member of the dialysis crew at Manchester Royal Infirmary I was under the care of the CAPD unit. I cannot express how much of a fantastic unit this is and I am very lucky to be in Manchester at such a close vicinity to excellent care. The nurses in CAPD are all attentive, experts, caring and over all I owe thema lot of thanks to my treatment on Dialysis. I was introduced to Maggie who is a Sister at Manchester Royal and she trains patients to do home peritoneal dialysis. She's a wonderful committed lady and has helped me through some of the most difficult times of my life.

I think before I explain this, I feel I need to shed some light on how it all works... So basically I have this catheter in and I am given an extension line to the catheter which matches the supplier of the machine. The main suppliers in the UK are Baxter as they were the guys supplying my dialysis machine to me. So I got a Baxter line extension on the tube coming out from my tummy. 

After going through the horrendous ordeal of having the catheter fitted and the pain that followed etc. I didn't even think about the dialysis would feel like. Part of me was desperate to get on dialysis because I felt so awful with barely any kidney function. :(

Maggie arranged for me to have a delivery at my parents address... This was going to be my medical supplies for the month and nothing really prepared us for the sheer volume of stuff being delivered on the NHS to my house... 

When the doorbell went and it was the delivery man. he had parked a huge HGV truck outside my house. Immediately I was like "Woah!" I don't think I've ever seen a HGV vehicle on my tiny little road before! Then he started offloading a pallet of boxes... That's right, a pallet. It looked like he was delivering to a warehouse or something with the amount of boxes. they were piled higher than me on a pallet... I couldn't actually believe it. 

The first delivery is always the biggest, but yeah... Over 40 boxes of so were placed inside my parents kitchen over towering over me. Over 30 boxes contained the dialysis fluid which are 2 5 litre bags of fluid each. They weigh an awful lot. I can't even carry them. The rest was sterile medical supplies which I would become accustomed to using as part of my daily routine life. The machine was about 13kg in weight. Big changes were definitely happening... 

First question was, where the hell is all this stuff going to go? I was fortunate enough that my brother's old bedroom was not unoccupied since he has fled the home nest... So we crammed and piled all the boxes into there. But I do wonder - where does someone who lives in a small flat with no spare bedrooms put all their medical stuff?! We were struggling in a 3 bedroom house. God help those in smaller accommodation. Also, most dialysis patients are much older and more fragile - how on earth do they carry the boxes and move things around everyday? I'm so lucky that I have my boyfriend and my father to help move the boxes for me. 

Maggie came over and tried to start on me training. I was trained on how to use all the medical stuff, being trained to wash my hands for 2 minutes so that I'm perfectly sterile and adjust the way I do things so that everything stays sterile etc. It was quite a chore. 

Starting on the dialysis was a painful and weird process. I was still very sore after surgery and I was not expecting pain. People sleep on this machine every day, surely it's not painful? But alas, I wasn't give the small print. The bit that they don't really tell you. Instead I just had to find out for myself. 

The best way I can describe the feeling to you is... When you connect your dialysis catheter tube, it needs to check for any fluid which might be present already. So it drains out. This drain is what is painful. It feels like someone is sucking in my insides through a straw like it was a thick McDonalds ice cream milkshake. Its a pulling, sucking feeling...from inside right above your bladder. The pain is new and nothign like I've ever felt before and its incredibly painful. I cried quite a lot. 

Maggie told me it would get better and I was just sore after surgery. She's been a renal nurse for over 30 years - that's longer than I've been around. I can totally trust this woman. She knows what's she's on about and also she's the one who gave me no bullshit about the treatment. She was the one who made me aware that its not always a walk in the park and easy. 

Unfortunately the pain didn't get any easier. We tried and tried again but the pain was too much. I was so tense with pain that I was rigid with anxiety and fear every time I went to clinic or Maggie came to my house. 

Maggie decided that enough was enough and it wasn't fair to keep trying. She said I needed more time to recover. But it was a tough decision. I needed the dialysis asap as my kidney function was now 4% but it was decided to give me another 2 weeks off to adjust and recover me. 

I was very grateful to be left alone after the last month of pain and trauma. I was probably in tears every day for a month and it was a very horrible time for me. I couldn't see light at the end of the tunnel... I thought this was it from now on.

The aftermath of the surgery...

My apologies to anyone who found the video I posted in my last post a little too much to handle. I did warn it was not for the squeamish.

I think that the way I felt after having the peritoneal dialysis catheter fitted, deserves a whole new post on it's own. This is the part I was really unprepared for and it took me by surprise and was quite a lot to deal with. I'm aware that other people who have the dialysis catheter fitted probably felt a lot better than me seeing as the first round of surgery went wrong and I had to have a more invasive procedure done the second time round.

I woke up from the general anesthetic from the second lot of surgery and I was in instant immense pain. My body felt tense from the neck down up to my knees as the pain was horrific. According to my boyfriend and family I looked like absolute shit when I came back to the ward from the operation. My lips were the same pasty white colour as my face and my eyes were so sunken in, I looked incredibly ill. This is probably a side effect of the general anesthetic as well as the pain I was in. 

My torso/stomach area was in so much pain. I had woken up with a tube coming out of my stomach. This was new to me. I hated it the moment I saw it and my stomach was swollen to look like I was 9 months pregnant. My belly button now looked like a sad frown because of the swelling distorting it slightly. I felt pretty miserable and shit. The tube (catheter) coming out of me was now to be a permanent thing in my life for the time being and I was coming to terms with this. 

I was given morphine and various other amounts of painkillers in order to control the pain, however they did very little. I was still in pain and completely out of it. Things seemed to take a turn for the worse when I needed the toilet. I had to actually get out of bed and go. The nurse offered me a bedpan but also suggested that I get moving as soon as possible to help speed up the recovery process. Getting out of bed was a drama in itself but when I discovered that I was actually desperate to pee and then couldn't actually go, I just started filling with fear.

I can't actually describe it really... But I was desperate to pee, with the pain that comes with being desperate but then when I actually tried to release my urine, nothing happened. Like... NOTHING. The feeling of being desperate was still there, to the point of being painful and I could do nothing about it. 

Panic is the best word to describe how I felt at this moment. The urgency to go to the toilet but being unable to made me panic. I nearly had a panic attack. The pain was horrific and this was just adding to the list. The nurses tried to calm me by saying "Don't worry, your bladder muscles have tensed up after surgery. They will ease up soon and you can go." but I needed to go now... Not in due time when my bladder felt like releasing the urine. 

The urgency to go didn't leave me and neither did the pain. The nurses ended up having to insert a urinary catheter to relieve me finally and I had to keep it in for over 24 hours. Urinary catheters are not fun. End of. As I'm sure anyone would have guessed, having a tube shoved up your urethra, losing all your dignity is just the icing on the cake really and I'm many of you would cringe at the thought of it. 

I was unable to cough, sneeze or eat because of the pain in my stomach area. Every time I did I was bought to tears. Needless to say, I cried a lot after my operation. I know I'm a wuss in some sense. But no one told me the amount of pain I would have to endure, not being able to move, cough or sneeze or even have a fucking piss. 

The day after my operation my Mum tried to lift my spirits and wanted to take me to canteen on the other side of the hospital. Hospital food is horrendous and I hadn't eaten anything in more than 36 hours. Again, transferring myself out of bed into the wheelchair was bad enough but I did it anyway. I got to the canteen and felt sick instantly. Feeling sick in a place where people are sat eating is awful and you do your best to breathe slowly and hope the waves of sickness go away. But it all became too much for me. I started to get a pain in left shoulder near my collar bone. It was an intense pain, on top of the pain I was already in and feeling nauseous. I had to get my mum to abandon the tea and food she had bought and run me back to the renal ward. I started having another panic attack. I was in tears, pain and could barely breathe. 

I got back to the ward and the nurses sprung into action. They checked my blood pressure which was sky high 198/132 (normal blood pressure is 120/70) they gave me some oxygen and pumped more painkillers into my veins (IV) the doctor came to see me and told me I was having a panic attack and I would be OK soon. He said the pain in my left shoulder, near my collar bone was something called Referred Pain. Basically because my body was in so much pain round my abdomen that I started to get another pain somewhere completely unrelated. As if things couldn't feel or get any worse!

I used to find some ailments in my younger days quite funny and have the odd giggle about. I never took it seriously really but it all changed when I started to feel constipated. The cocktail of drugs I was on, the muscle tension and spasms around my bladder/bowel area caused me to get constipated. I've been constipated before, it's not especially fun but nothing prepared me for this. I was already in pain from the surgery and now I had added sharp pains on top of it. I was actually in tears because of the pain. 

I ended up staying in hospital for 7 days after my operation. It was supposed to be day surgery. In and out on the same day. This was a hell of a lot different for what I was willingly letting myself in for. I left hospital still in immense pain and I pretty much cried in the car on the way home and got into bed instantly when I got home. I didn't feel better at all but they needed the beds on the ward so they discharged me. 

I felt my worse for about a month after the operation. I had chronic constipation, pain in my abdomen, trouble going for a pee, barely sleeping, being sick etc. I couldn't see the light at the end of the tunnel. 

This was all happening whilst my kidney function was dropping. It was now at 5% and I felt like crap. My energy levels were at their lowest and I could barely get out of bed. I think this was my lowest point so far.

Here is a picture of my abdomen, two weeks or so after surgery.

Having the peritoneal dialysis catheter fitted...

So this is the post I'm going to explain having my dialysis catheter fitted. Please be warned, I may go into detail that may be 'too much information' - But I think it's important that I explain the whole thing properly. 

The blase attitude I was on about in my previous post about doctors and nurses pretty much carries on to the point of having your catheter fitted. They make it seem like the whole thing is a walk in the park. 

Now whilst I am fully aware that everyone is different and everyone reacts differently and whatnot and somethings go smoothly for others. I wish someone told me what would happen if things went wrong. Unfortunately I was one of those unlucky people with complications and whatnot and if anyone had told me what I had to prepare myself for then I think I would have coped better. 

Let me make this clear. I had my kidney removed in 2008 and it was painful. But having the catheter fitted was the most painful experience in my life and I would rather have my kidney removed 10 times over than go through the insertion of the dialysis catheter again! I genuinely mean that! 

Now of course, I don't want to scare anyone who may be potentially going on dialysis if they're ever reading this but please be aware that there can be complications and things might not go as planned! 

Having the dialysis catheter was meant to be a day surgery case. Come in at 8:30am and have the procedure done and then be on your way home by 5 - 6pm is what they told me. However... Mine ended up being a week long hospital stay and I was still very poorly when I came out of hospital and I can confidently say I was poorly for a good month or so afterwards. 

I was having it done under local anesthetic, meaning the doctor would open me up, insert the catheter, stitch me up and "Hey Presto! You're done!" I was given a high dosage of IV paracetamol and lorezapam to make me feel mongy and I felt quite pleasant, I was nervous but I was off my face so all was fine with the world! I went to the procedure room where I was asked to lie down on a operation table and I was given local anestethic which pretty much kicked in and I was fine... Then the doctor cut a 2 -3 inch incision just below my belly button. I was awake, I didn't feel this at all. It was fine. Then he put something in there, this sort of tube (catheter I'm guessing?) and then started to fill the inside of my peritoneum with some kind of fluid. That's when the pain started. This apparently free of pain procedure was a lie! I was screaming and at one point I sat up, looked down and saw a 3 inch open gash on my stomach with tools/tubes in it. I freaked out and became almost hysterical. The pain was indescribable. I can't put it into words at all and the shock of seeing myself cut open was enough to send me over the edge. The doctor made a decision to quickly abandon the operation and stitch me back up. I was given something to calm me down and then told I would have to have the procedure done under general anesthetic as something wasn't right. 

I was sent back to the ward, in pain and feeling very fragile and sorry for myself. My stomach was now swollen and rock solid and I couldn't cough or sneeze or bend my torso. I was told I'd be going in first thing in the morning for the general anesthetic procedure so I was just doped up on painkillers for the night. 

So what went wrong? Well I'm not entirely sure as I'm not a doctor but something a long the lines of, the doctor didn't get into the peritoneum and was putting fluid in the wrong place... Also apparently, the younger you are the more sensitive your nerves are, therefore it's more painful - or something like that. 

The next day I went down for my general anesthetic procedure of having my catheter fitted. I obviously wasn't awake for this so I was pain free up until I woke up. I was curious to know what they did so I asked my doctor if they could show me somehow and he told me to look on Youtube. I did. 

Please be warned, the following video is pretty graphic and not really for the squeamish: Click here to view the video on Youtube. (it won't let me embed it for some reason)

.....

So that's what they did to me. I think the way I felt after the operation deserves a whole post of it's own so I'm gonna leave you with just this video.

Please note, I have been told that if the local anesthetic procedure (the one I was originally meant to have) goes ok, it's meant to be pretty pain free and less traumatic. But obviously I wasn't so lucky. I just want people to be aware that it does not always go to plan. Mine didn't. It was incredibly traumatic for me and probably the worse thing I've ever had to experience and deal with in my whole entire life. No joke

The silence before the storm...

So I think it was round the beginning of May I was told that my kidney had failed and I needed to start dialysis and I had to wait until 12th June to have my dialysis tenckhoff (spelling?) catheter fitted. So there was a period of about a month... Where not a lot was happening except I knew I was sick. 

I call this part the silence before the storm. 

My kidney function was 10% at the start of May and then it dropped quickly... Like every week it was dropping. I had to have weekly blood tests to monitor me closely and I was shocked at how fast it was dropping and I could feel it in myself that it was dropping. 

I think each day became more and more difficult. I was tired anyway but now I was reaching extreme levels of lethargy and tiredness and I spent most of my time in my parents bed watching TV. I started randomly being sick after food sometimes and I felt an overall general shit feeling. 

The symptoms I mentioned in my previous post became more apparent for sure. The cramps got worse and my blood pressure went up to over 200/120 or something stupid. I felt dizzy and out of it most of the time.

I got weird pins and needles in my hands and around my mouth. I figured it was my blood pressure or something but then I got a call from the hospital telling to me get my ass back there now as my calcium level were dangerously low that I shouldn't even be walking around right now... They said I should have told them how I was feeling... I feel shit. How on earth am I supposed to distinguish what I feel and whether I should be complaining to them about it? I thought the pins and needles and weird feeling was my blood pressure so I wasn't about to go all hypochondriac on them and complain about every ailment and pain I had. 

My boyfriend went back to Thailand to sort out my apartment and bring back the rest of my stuff. So I missed him a lot and I felt quite alone round about this time. When I say this, I don't mean that my friends weren't there - some of them definitely were there but I was just struggling to keep up with them and it made me feel outcast a little bit. 

The whole thing is frustrating. Everyone around you is continuing their lives at this pace you're used to yourself but now you feel like you're the last one in the race. I'm trying to keep up. All my friends want to see me as they've missed me since I've been out of the country and I barely have any energy to get out of bed. I want to see people but I just don't have the energy. My party days are well and truly over. That's how I feel. 

"Everything will be fine... No really..."

So like, in the space of 10 minutes I was told that I couldn't return to Thailand to my job which I loved doing and that I'd have to stay here and start dialysis. It was all a pretty big shock. I remained quite calm. I always knew that my kidney would inevitably fail someday, maybe not this soon but I guess it's just my time. 

One thing that struck me was the rather casual and blasé attitude that everyone at the hospital seemed to have. "So you gotta start dialysis as soon as possible." they said it as if it was nothing... Like I know the seriousness of it all. I'm not stupid but I was quite shocked at the lack of information about it. I had a million and one questions in my head and they all came roaring at the same time but never came out of my mouth. I guess if you don't ask you never find out but I sure wish there was someone there who is actually informative about what's about to happen to you. 

I was told I could choose my treatment but I already had a good idea which one I was gonna do. HaemoDialysis involves going to the hospital 3 - 4 times a week and sitting there on a machine whilst it cleans your blood out... Or Peritoneal Dialysis was a machine I could just hook myself up to every night, go to sleep, it's done and voila! I just carry on with my day. I favoured the less hospital visiting one and the one with more independence. It kinda just made sense to me that way. 

However I really wish someone was there to fully explain everything about peritoneal dialysis and what's gonna happen, how I'm gonna feel and whatnot as I felt pretty ill informed in that case. 

I think I remained completely in the dark up until it all happened. I was kind of just told to come in on a certain day and it was be a day surgery case and I'd be allowed home the same day... Um, ok. Right. 

I went into the CAPD (continuous ambulatory peritoneal dialysis) unit and I met all the nurses. These are the guys who go through the whole dialysis process with you. I'd met some of them before in the pre-dialysis clinic but they were all very lovely and it was clear they knew what they're talking about. These guys are now like my second family and I have formed a close relationship with them as I seem to spend lots of time in that unit these days. 

However I think when someone is about to start dialysis, they should be able to meet with other people who are on dialysis so they can ask personal questions. It's all fine asking the doctor what is gonna happen but the immediate questions; "Does it hurt?" "Am I gonna lead a normal life?" "Is this it? Is this the end of my fun exciting social life?" "Am I going to die?" "What does it feel like when you're on the machine?"

These were all my biggest worries. I think I hid my worries pretty well from people around me cause some of the questions are dark but I did genuinely think these things. It would have been nice if I could have met someone and asked them these questions. They're going through it. They know for real. 

It's not like when the doctor says "You may feel just a little scratch..." when they're about to take blood form you and stick a needle in your vein. It's not a little scratch. It bloody hurts! It's a lie. - That's kinda how I felt about the whole process. 

How I came to realise my kidney had failed...

It's all a bit of a weird one really on how I came to discover that my kidney had reached the end stages of renal failure. I would never had guessed and it was only by chance and some kind of blessing in disguise that I found out when I did.

I was teaching in Bangkok, Thailand as an English teacher. I had been there for 2 years. I've always know about my kidney condition and I made sure I went to see a renal consultant in Bangkok to just check my kidney function and all seemed ok. Nothing unusual. I felt fine.

Then my foot started hurting. Straight away I can see you're like "Wait, what?!"- But bear with me. I woke up one morning and my foot was killing me. I hadn't hit it or fallen over so I was a little baffled as to what it could be. I got some antibiotics thinking I'd been bitten by a mosquito or something and it had gotten infected - even though there was nothing visibly showing on my foot. Just this intense throbbing pain! The pain went away after a few days but it kept coming back. Sometimes in the same place, my ankle or round near my big toe! It was driving me crazy! After going to a doctor in Bangkok I was told that I was getting Gout and that I'd have to take some medication for it. Now for those of you who don't know, Gout normally occurs in men, very rarely in women and men who have rich diets and drink a lot of alcohol. I did neither but I started cutting down things in my diet which may bring a gout attack on and I even tried going vegetarian for a little while! So when I was told this I was a little surprised about it... But it's extremely painful and I don't wish that pain on my worse enemy! Seriously, some days I couldn't even have the fan blowing on me as the air hurt it!

Then I noticed I kept getting muscular cramps in my legs, feet, calves, fingers and sometimes my stomach. Now I know everyone gets cramp every now and then but I'm talking nearly every night I would wake up suddenly and be biting my pillow as this intense cramp starts distorting parts of my body. It's not the kind of cramp you can just grit your teeth through - I was crying sometimes and too scared to go back to sleep in case it happened again. I figured - I'm in a hot country, I'm sweating a lot, maybe I'm dehydrated or low in potassium and magnesium or whatever it is! So I drink more water, eat some more bananas and drink tonic water more. I figured I gotta help myself somewhere a long the line...

Whenever I drank alcohol on a night out. Even if it wasn't a lot - I would be face down on a bed throwing up into a bucket at the side of my bed the next day. I'm not just talking any hangover - I'm talking throwing up repeatedly until midnight the next night! My body was literally repelling everything I put into it and retching until I could retch no more. I started to go off the idea of drinking (no shit sherlock!) and I stopped drinking as often as I used to as I just couldn't hack the way I felt the next day.

Tiredness. I started to feel tired all the time. Lethargic and low in energy. Now for those who know me or have been around me in the past. I love partying and I was pretty much a machine. I used to go out most weekends and travel up and down the country for nights out. Nothing was gonna stop me. Hell I had my kidney removed in 2008 and I was back out with friends within 2 weeks. I have always tried to live my life to the fullest and maybe I did overdo it in the past but I regret nothing. But that all changed... I started to feel tired all the time and I felt like I needed a nap half way through the day just to get me through it!

I came home from Thailand to Manchester for Christmas to see my family and friends and during that 2 weeks I spent most of the time in bed, asleep - seriously, no joke! I just had no energy to do anything. I went for a renal check up at the hospital and it was just the usual standard blood test and what not and then I was sent on my way.

Time went by and I kept on getting those symptoms with no idea what was going on. It was frustrating me. Then my boyfriend asked me to come back to the UK with him for 2 weeks as his brother was getting married. I wasn't going to go at first as I was lacking funds to really be spending on flights back and forth from Thailand to the UK. But I ended up going in the end and I went for another renal check up at the hospital. 

That's when the bombshell landed.

"You're kidney function in December when you were last here was only 13%... I'm worried about what it will be now as it's five months since then..."

My reply: "Oh." I was pretty much speechless. I've always had kidney problems and my function has declined over the years but I've always overcome any hurdles and infections and defied doctors predictions and whatnot. I thought I was invincible. I am clearly not. 

The doctor then said, "If you're kidney function has dropped any lower then you can't go back to Thailand. You need to start dialysis treatment as soon as possible"

And that was that. My blood test results showed my kidney function at about 10% and what was supposed to be a 2 week holiday to the UK ended up with me staying here indefinitely.

The news is hard. No one ever said it's gonna be easy but seriously I think, even though I've always known my kidney would eventually fail - I didn't think it would happen so soon and I had so much going on in Thailand. My apartment, my job, everything over there etc! It was a pretty big shock. 

My wonderful and supportive boyfriend had to go back to Thailand and basically sort my life out there. Which involved all my possessions in my apartment and whatnot and bring them all back for me. I am forever grateful for all the hassle I've put him through and his support. 

It's all a blessing in disguise really because as soon as I got back from Thailand that's when my health really started to decline. I became poorly and I dread to think what would have happened if I was sick 6,000 miles away from home.