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. 

"Who the hell wants to hear about it? Who the hell cares?!"

In an ideal situation... I would have started this blog a lot sooner so I could keep updated in real-time and as time goes on. But I didn't want to come across as a moany "woe is me" type - even though sometimes, I do feel like that at times. Also I was under the impression, "Who the hell wants to hear about it? Who the hell cares?" 

But I was quickly corrected when all of my friends and family around me are being supportive and asking me questions about it. On more than one occasion it was suggested to me that I should write a blog but I just hesitated, thinking that no one would be interested. 

Now that I am more settled into my peritoneal dialysis and becoming more familiar with it I'm starting to dig deeper into this world of kidney failure and I was quite disappointed and surprised to find that whilst there are lots of websites telling you about the condition - there are not many personal blogs, forums or even an online group where people with my condition can vent, relate and share their experience to. I was starting to feel very alone with this condition. 

I think maybe writing about it all will help me in a way and I hope it may help someone else out there if they're about to go through or are going through the same thing.

So bear with me as I update you all on the process. I will be backtracking what happened from the start and hopefully keeping this blog up until the point that I get a kidney transplant (hopefully!) and then I guess after that I'll have to rename my blog to "The Girl Who Had a Kidney Transplant".

About Me

Allow me to introduce myself...

My name is Cassie and I'm 25 years old, living in the UK, I am currently on peritoneal dialysis and I'm on the kidney transplant list waiting for a kidney transplant. 

I was first diagnosed with Chronic Kidney Disease when I was 11 months old due to kidney reflux and recurring kidney infections (pylonephritis) and UTI's. Over the years I have been in and out of hospitals with kidney infections, I had my right kidney removed in 2008 and I am now at the end stages of renal failure with one kidney at 3% function. I am now dependent on peritoneal dialysis since July 2013 and I am currently waiting for a kidney transplant on the NHS.

This is my story of my journey a long the way... All the highs and the lows and the bits you'll probably think are 'too much information' or whatever. I am writing this because I want other people out there to have more of an understanding and for those that are, or may be getting ready to - this is a personal insight of my experience.