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?