Thursday, January 29, 2009

the department of health meeting and peritoneal dialysis

I attended a meeting the other day at the Department of Health (very posh building near the London Eye full of brainy doctory types doing lots of important medical research) about the changes that could be made to the pathway of peritoneal dialysis.

I have never really talked about my 3 and a half years on this type of dialysis in my blog. This is mainly as I found the whole experience to be quite formidable. This was not only due to the fact that I didn't enjoy the treatment (who does?) it was also to do with problems I had with my consultant at the time. I am aware that some people love PD, and it suits them perfectly so if you are reading this and you are about to choose this type of dialysis there are many benefits to it as well as the negetive points that I mention.

I was attending the meeting as a young patient representative and I was asked to talk through my experiences of PD with a large board room of surgeons, doctors, head nurses and said ex-consultant. *gulp*. Bearing in mind that I don't like public speaking - especially when it's not exactly about my favourite subject in the world I found the whole thing quite daunting at first. As I slowly began explaining about how it all started back in 2003 and how my journey with PD ended in 2007, I realised that everyone in the room (all these important brainy people) were actually listening to what I was saying and even taking my ideas of how to improve the system into account. I found it all quite liberating being able to talk openly about all the issues I had with PD (worry not, I will talk about these later) and actually being able to suggest changes to the system that would help people avoid how I felt at the time. Getting all this off my chest was very therapeutic - and I came away from the day no longer feeling angry at the way I was treated on PD, and instead feeling satisfied that my bad experiences will make it an easier and happier experience for patients in the future.

I guess this post will make much more sense when I actually explain about my time on PD and what actually went on - which of course I will do now...or in the next few days! Let me begin...

Saturday, January 24, 2009

15 Top Tips for Kidney Patients

1. When packing to go into hospital for a transplant there are only 3 things you'll need - a very warm dressing gown, fluffy slippers and dry shampoo (greasy helmet hair is so not in right now.) I needen't have bothered packing my whole DVD collection, ten books and the entire collection of that weeks gossip magazines. To begin with I didn't have the energy to check my phone for texts let alone read a book.

2. Alcogel is your best friend. After clinging on for dear life on the tube at rush hour, a little squirt of alcohol gel on to your hands stops the guy next to you with a stinking cold ending up destroying your immune system.

3. Avoid at all costs wearing heavy belts or jeans whilst doing the pre-dialysis weigh in. Or if you do, remember to take that in to account when working out your 'wet weight'*. I lost count of the amount of times where this slipped my mind and I would end up taking way to much fluid off and not being able to move without fainting after dialysis. Not much fun.

4. Bras are for tucking in your permacath tube. Obviously.

5. APD machines are awesome for heating up your clean underware for the next day. Toasty pants are the best.

6. Cathater bags and chair legs should avoid meeting at all costs.

7. Never ever ever leave off the 'fragile' stickers when putting your APD machine on a plane. Clearly flight attendants throw cases on to the plane without a care in the world. In my case I reckon they jumped on it for a bit of fun too. The machines are quite hard to get hold of I found, especially when stuck on an island less than 3 miles long.

8. Again on a similar note never ever ever forget the two main componets for your APD machine whilst half way to Paris on the Eurostar. Fortuantly Baxter, the medical company who supplied all my dialysis equipment, as I soon found out, have an office in central Paris. Phew.

9. Keep a careful eye on quantities of medicine you are supposed to be consuming. Taking 8 times the recommended does of Lactolose certainly cleared up my constipation...

10. Don't listen to your renal councillor if she (constantly) tells you life will never be normal again and you will never feel well again. You will get better, you will feel normal again and you will appreciate life all the more for having gone through so much. I never saw that renal counselor again.

11. Always talk to people about how you feel. After 3 years of silence I finally started to tell poeple about my illness. I can't describe how good it felt not be carrying the burden completely myself.

12. Train someone else to be able to do your APD machine for you - then put on your nicest voice and ask them ever so nicely if they could mind, kindly, setting it up for you if you are going to be home late. I lost count of the amount of times my mum did this for me when I was living at home, it was always such a relief.

13. Don't be fooled when the hospital tell you that you only need your APD machine for doing dialysis on holiday - they forgot to mention the little fact that a 5kg transformer box was coming with me too...

14. If when starting on hemodialysis you continue to have horrendous headaches and sickness afterwards, try turning the temperature down a degree on your machine. Worked wonders for me.

15. Take a crash course in Doctor-Patient are some to get your started -
Uncomfortable = massively painful
A little sore = nasty bruise lasting a few days
Sharp scratch = get ready to be jabbed by big needle
Groggy = totally out of it
Gets a little noisy at night = you'll be sleeping next to our resident champion snorer
Your appointment is at 9am = your appointment is actually at 12.30pm

(disclaimer - please don't take some of these too literally! These are based on my experiences alone.)

*weight + amount of liquid consumed pre dialysis.

Sunday, January 11, 2009

A portrait of Kasper

I had an ultrasound the other day to make sure everything was well in the world of Kasper after the stent removal.

And here is the world's first photo of ol' Kasper himself. The bean type thing at the top is the kidney but as my boyfriend pointed out it looks more like Mary holding Baby Jesus if you look at it side on...bizarre. Even more bizarre that he noticed that! Other comparisons include a baby mouse with three paws and or a star map. All other analogies welcome!

ps. Got the results of the scan - all looks excellent apparently, blood flow is perfect!

Monday, January 5, 2009

the stent has exited the building

Mental note - when doctors try to tell you something is going to be mildly uncomfortable this is actually a direct translation in doctor language for pretty damn painful.

I won't bore you with all the medical jargon and details but I had a small procedure done today called a cystoscopy to remove a stent (little thin hollow tube which is placed inside the ureter during the transplant to keep it open allowing the connection from Kasper to my bladder to heal.) Due the fact my body is clearly too much of a nice cosy home for little ol' stent, the said stent decided it didn't really want to leave after all and clung on with all it's might forcing the surgeon to really dig around for it. Not pleasant but was over very quickly luckily and the nurses were lovely and kind as always.

I'm back home now, and apart from feeling a little sore I'm absolutely fine. In the grand scheme of things the cystoscopy was a walk in the park and all part of the treck up the kidney shaped mountain.

Friday, January 2, 2009

nye, monopoly and 2009

This time 5 years ago I was in intensive care in California. I remember New Years Eve, and groggily watching the clock in the ward chime midnight to open the year 2004. I kind of expected the nurses to do a little countdown and say happy new year, but apparently that doesn't happen in the ICU unit.

5 years on my New Year was filled with everything a fun NYE should be - super yummy food, fab friends... and Monopoly. I usually start the new year feeling quite nostalgic, and I expected this year to be exactly the same but more so due to the crazy few months I've just had. Strangely I didn't feel this, I just felt excited at the year ahead and ready to tackle 2009 head on. I guess I don't feel the usual ties I have felt in the past, the constant feeling that I have to be dialysised three times a week, and the constant thought that I was waiting for that call that would change my life. I just feel such a sense of freedom that I can't ever remember feeling - I can go where I want, when I want - and most importantly I can do it feeling engergised and well. There is no better feeling.

matches can be fun.