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. 

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