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.