Ok so I'm always blabbing on about family, nights out and university so I thought I would tell you more about life on dialysis (that is the name of the blog after all!) I've probably told some of you this before, and showed you some of the links before but I'll post them again anyway.





First of all, here is a picture of me on dialysis! (ignore the chocy sticking out of my bag, its one of my weaknesses)

So I go for Haemodialysis or HD 3 times a week for 3 hours Monday, Wednesday and Friday on the twilight shift. I ring up the unit at around 3.30pm to see what time my machine will be ready as this sometimes varies. Mostly it is around 5.30 so I get to the unit at 5.15 as I have to take my blood pressure and weigh myself before going on the machine. I have to weigh myself because as well as cleaning the blood the dialysis machine also removes excess fluid, the amount of fluid removed depends on your dry weight. A dry weight is your weight without any excess fluid. Mine at the minute is 67kg. (1 kilogram = 1 litre of fluid) So if I go in at 68kg I would have to remove 1 litre of fluid and an extra 500mls of washback (that is saline used to wash the blood back after dialysis) so my total fluid removal would be 1500mls. This part of the process is called ultrafiltration and the amount varies from session to session usually on a Wednesday and Friday I would take off 2litres and on a Monday nearly 3litres due to the extra day of fluid because of the weekend. This is the reason that I am on such a strict fluid restriction of 500mls a day.

So here is a picture of where I weigh myself and take my blood pressure.

Heamodialysis consists of me having two needles (quite big ones) inserted into my fistula in my upper arm. They are a bit painful when they are inserted but during the dialysis session I can’t feel a thing. So a fistula is a surgically enlarged vein attached to an artery I have two scars where each needle is inserted (they aren’t inserted in exactly the same place every time, but not far off, causing quite big lumps on my arms). Heres a picture of one of the needles that is used.

I have to keep my arm very still during the dialysis session to ensure the needles stay in the right place. I think I’ve shown you this before but if you want to see how a fistula is made and used click here, it probably explains it better than me.

This provides access to the bloodstream for haemodialysis. The fistula buzzes all the time which is a good thing as this means the blood is flowing through it freely. One needle is to carry blood out of my arm and the other to carry blood back to me after.

So as well as removing fluid like I’ve already talked about, the machine’s main job is to remove toxins from my blood by cleaning it. While in the filtering system the blood flows through tubes made of a membrane that allows the waste products (which are much smaller than blood cells) to pass out through it. The waste products pass through the membrane into a dialysis solution (dialysate), then out of the machine. The "clean" blood is carried on through and returned safely to the body.

This happens over and over again throughout the dialysis session. Each time the "clean" blood is returned to the body, it picks up more waste products from the cells it circulates through, and brings these newly-collected toxins back to the dialyser (or artificial kidney – which is the white tube with the blue top and bottom on the picture) to be removed.

Fresh dialysate is passed through continuously to make the rate of the cleaning process as fast as possible.

Click here to see a picture of dialysis in action....

My machine is called Sneezy...

there are 6 beds at the unit, and 8 machines (2 spare) so they are named after snow white and each of the 7 dwarfs.

Here is a picture of the screen of my machine...

the information it shows is the amount of fluid I have removed up until that point, the time left on the machine, the amount of fluid I will take off by the end of the session and the rate it is being taken off (how much each hour) It also tells me how much blood is flowing through the machine at that moment, and how much blood has been cleaned altogether which could be over 50litres!!!

The grey round things are the pumps that spin and push the blood round, this can go at different speeds depending on the strength of your fistula and other factors. My pump speed is usually around 330, the highest I have gone is 350. The higher the pump speed the better the dialysis and the better my clearance which is how well I am dialyzing (mine is usually in the region of 70%) The machine also shows the pressure of the blood going into my arm by using a lights system, if the pressure gets too high or low the machine will beep. At the end of the dialysis session, the blood that is left in the tubes is washed back to me using saline, shown here...

So basically that’s dialysis in a nutshell. The main question I get asked is do you feel anything and does it hurt, the needles hurt a tiny bit going in but that’s it, I don’t feel a thing, I don’t feel the blood going in or out. I just sit back and let the machine do all the work I usually just watch the tele (all the soaps) whilst I’m on the machine and this passes the time. I would go to sleep if I could but there is constant hustle and bustle and machines beeping! The machine beeps if I accidentally lean on the tubes (containing the blood), if I move my arm by mistake or most importantly when the dialysis has finished.

So if you’ve got any other questions, just ask and I’ll do my best to explain.

I am taking part in the first ever Kidney Research Chester Bridges Walk on 6th July. This is a big challange for me as its 2 miles (doesn't sound alot, but to me it is) and I get tired really easily, but I'm determined to complete it along with my Mum and Dad!

Starting and finishing in the Little Roodee car park, the walk crosses the Old Dee bridge and the Suspension Bridge with a gentle stroll along the Groves. It is a great way of raising money for Kidney Research which focuses on improving the understanding of renal disease, its causes, treatment and management as well as improving patient care.

Donating through Justgiving is quick, easy and totally secure. It’s also the most efficient way to sponsor me! To see my just giving page click on the widget on the right hand side of my blog or click here.

So please sponsor me!

Thanks

This article appeared on a Warrington Website which discusses news in the local area...

Brave Holly's plea for organ donors

Published 05/05/08 7:00 am

by James Parr

A BRAVE Warrington woman has been named as a Key Advocate for charity Live Life Then Give Life.
Holly Shaw, who suffers from kidney failure, has been named a Key Advocate for the North West by the charity.
The 21-year-old, who has been on the waiting list for a kidney transplant for three years, has worked tirelessly alongside the charity for some time and they felt it was only right her efforts were recognised.

She said: "I am really proud to be an advocate for Live Life Then Give Life. The gift of life is so important and a transplant could give me back my life; dialysis is a life saver but also a life sentence. With a new kidney I wouldn't have to do the treatment but most of all I would just feel normal and well again."
Holly, who is a student at the University of Chester, has to visit hospital for dialysis three times a week and is not allowed to drink more than 500ml of fluid a day.
She is now appealing to the people of Warrington and other North West towns to sign up for NHS Organ Donor Register.

Vice-chairman of Live Life Then Give Life Emily Thackray said: "Holly currently spends three days a week in hospital on dialysis and is only allowed to drink 500ml of fluid per day. She has a daily battle with her health but is so enthusiastic and constantly offers to do more to help us promote and raise awareness about organ donation. We are thrilled to have Holly as our advocate for the North West."

More than 8,000 people in the UK require and organ donation, but due to the severe shortage in donors, 1,000 people died last year in need of a transplant.
Anyone who wants to sign up on the donor register can do so by visiting www.uktransplant.org.uk or by phoning the Organ Donor Line on 0845 60 60 400.

Uni article...

When I was first asked to write this piece I was wondering how an earth I would fit 3 years of my life into one page but I’ll give it a try.

It all started just after Christmas in 2004. I was taken ill suddenly and was rushed into hospital. Various blood tests and injections took place and eventually a scan of my kidneys which showed they had shrunk and were no longer doing the job they were supposed to. I was told I had End Stage Renal Failure (ESRF) and needed to go on dialysis immediately and I would remain on this for the foreseeable future (3x a week) until a suitable donor kidney was found for a transplant. This came as a huge shock for both me and my family and we were all facing an uncertain future.

So 3 years on we are still facing that uncertain future - I am still on dialysis 3 x a week for 3 hours at a time and I’m still waiting for that phone call saying the transplant is going to take place. My mum went through the tests to see if she could become a donor for me but she wasn’t suitable. My family have been so supportive throughout this and I can’t thank them enough.

Having dialysis means I have to stick to a strict fluid restriction of 500mls per day and a special diet (low in phosphate, sodium and potassium) and also have to take various tablets each day. The dialysis itself is restrictive, time-consuming and has unpleasant side-effects. I have low energy levels, tire easily and suffer almost constant nausea. The actual haemodialysis itself takes its toll, it involves two needles inserted into my fistula which is a surgically enlarged vein (located in my upper arm).This provides access to the bloodstream for haemodialysis. The fistula buzzes all the time which is a good thing as this means the blood is flowing through it freely.

Haemodialysis removes waste products from the blood by passing it out of the body, through a filtering system called a dialyser and returning it, cleaned, to the body as well as removing fluid from my body (another job the kidneys should do) It leaves me feeling wiped out and very often light headed however it’s the only thing that can keep me alive unless I get a transplant.

It’s not all doom and gloom. I have met so many great people because of my situation, my fellow dialysis patients and of course the nurses who do an amazing job of looking after me and essentially keeping me alive. I try not to let all this get in the way of everyday life. I am enjoying my Early Childhood studies degree although I sometimes struggle fitting the work load in with my hospital visits however the lecturers have been sympathetic regarding my attendance. My social life is not that of a normal student but I can’t complain, I have understanding friends who are very supportive.

I am also proud to be an ambassador for the Live Life Then Give Life charity who do amazing work by promoting organ donation by putting on various events and selling cool T-shirts with catchy slogans on such as “I’d give you one”. (http://www.livelifethengivelife.co.uk/)

I would love to have my health and freedom back. I’ve got so much I want to do with my life but without a kidney transplant I just don’t know what the future will hold. I just have to keep hoping that one day I’ll receive the greatest gift of all – the Gift of Life. That call could come next week, next month or even in 5 years time! Over 8000 people in the UK like me need an organ transplant to save or radically improve their lives. However due to the chronic shortage of donors 450 people die each year waiting. The ever growing demand for transplants means that waiting lists are rising each year. When asked 90% of people say they agree with organ donation but only just over 20% have signed the register!

So it’s a waiting game for me now, for that phone call that will transform my life.

To read more about my everyday life as a dialysis patient and life on the waiting list you can read my blog at http://lifeondialysis--waitingforthecall.blogspot.com/

And to sign the organ donor register you can visit
http://www.uktransplant.org.uk/ or ring 0845 60 60 400

World Kidney Day

Today is world kidney day the purpose of which is to raise awareness about the importance of our kidneys – an amazing organ that plays a crucial role in keeping us alive and well – and to spread the message that kidney disease is common, harmful and treatable.

The main job of our kidneys (which are roughly the size of two fists and are located deep in our abdomen, beneath our rib cage) is to remove toxins and excess water from our blood. Every day our kidneys filter and clean 200 liters of blood – a quantity that would fill about 200 bottles or 20 buckets! Besides this kidneys also help to control our blood pressure, to produce red blood cells and to keep our bones healthy.

Studies of different races living on different continents worldwide have consistently shown that about 1 out of 10 adults has some form of kidney damage.

People with chronic kidney disease are 10 times more likely than healthy individuals to die of heart attacks and strokes (cheerful hey?). The health of their kidneys may also progressively worsen to the point where the kidneys must be replaced (this is the stage I am at and is called "end-stage renal Failure- ESRF"). Either patients receive a new, transplanted kidney or they are kept alive with “dialysis” like me.

Detection of Chronic Kidney Disease (CKD) is easy simple, routine tests of our urine, blood and blood pressure can show early signs of kidney problems. Goods news is that if problems are found these can be slowed down and even stop chronic kidney disease, by taking medicines and changing some of our living habits.

Click here to find out more about World Kidney Day!

A bit of background health information…

I became ill around Christmas 2004 and went to the doctors who said it was probably a virus and to drink lots of fluids, I progressively got worse and went to see a locum doctor (as it was Christmas time) he did my blood pressure and a quick examination and immediately referred me to Warrington hospital. Whilst at the hospital I was prodded and poked, asked if I had taken ecstasy and if I was pregnant… they didn’t seem to know what was wrong.

Eventually they did a scan on my kidneys and said they were shrunken and that I would have to go to ICU in case I needed emergency dialysis overnight. Immediately they told me that I would need to be on dialysis 3 times a week for the foreseeable future whilst I waited on the transplant waiting list for a suitable kidney. I was transferred to the Renal Unit at the Royal Liverpool University Hospital so they could prepare me for dialysis and start my treatment. I had a femeral line inserted to start dialysis immediately but as this line was not permanent and I could not leave the hospital with it still in place I then had a neck line put in (a plastic tube inserted into my chest). Next I had an operation to create a fistula (a vein joined to an artery in my elbow) this is permanent and allows for needles to be inserted for dialysis, however this did not work in my left arm and I had the same operation on my right arm a few days later which was successful. I remained in hospital for 3 weeks, the doctors told me to forget about my exams and college and not to expect to go back anytime soon. However I was determined to get my life back to some sort of normality and a month after getting out of hospital I returned to my psychology A Level, eventually getting a grade B.

During that year I was put on the transplant list but also my mum was tested to be a live kidney donor (my dad wasn’t suitable as he has asthma and high blood pressure) After 6 months of tests it was found my mum had a virus called CMV (a virus that 50% of the population have) this doesn’t affect people usually but can be dangerous in people who receive transplants. This was the case for me as I am CMV negative; the doctors told me and my parents all the risks surrounding the situation, such as 1/400 die from the side effects as it can cause pneumonia and breathing problems (bearing in mind I had already told the doctors I wanted a CMV negative kidney of the list) The doctors, transplant co-ordinator and my mum left it up to me to make the decision as to whether to still go ahead or not. In the end I talked with the doctors and the nurses at my unit and decided that I wouldn’t go ahead and wait my turn on the list…

So after dropping my A Levels in music, Religious Studies and I.T when I first found out I was ill, I decided to repeat my last year of college to complete the I.T A level… reaching a grade C. During this time I also took my driving test and passed first time (much to my brother's disappointment as it took him two attempts, haha!) Chester University accepted my grades for the Early Childhood Studies degree… and here I am, in my 2^nd year; I’ve been on the list 2 ½ years now and on dialysis 3 years. Sometimes day-to-day life is a struggle, juggling my university studies, dialysis; tablets; diet; fluid restrictions and of course not forgetting fun things like my social life and of course shopping.

I hope I haven’t bored you too much, next time, more about what happens during dialysis….(Fun, fun, fun!!!)

Introductions...

Well this is my first ever post so I better start with some introductions....

My name's Holly Shaw and I'm 20 years old... I am currently in my 2nd year at Chester University (Warrington campus) doing an Early Childhood Studies degree! I have made loads of ace friends who are very understanding and I love them to bits! I have Kidney failure and so have to have Dialysis 3 times a week. I am on the transplant list and so I'm waiting for the call that will mean I am able to lead a normal life.

Hopefully this blog will raise awareness of kidney failure and organ donation but be warned I will end up waffling on about friends, family and shopping.

I live with my Mum and Dad and I have a brother Andy who is happily married to Fiona and they live nearby. My family are a great support and I am truly grateful, I love them lots, without them I wouldn't have got through the last 3 years.

I hope this gives you an insight into dialysis and life on the transplant waiting list!

Enjoy.....