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.