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! 

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.