"Life on Dialysis"

[GRainbow1989]

As some of you may know I am in pre-production of my documentary "Life on Dialysis". If you don't know here's a little break down:

July last year, I lost a great friend James at only 18. We have been childhood friends since I can remember. He was on dialysis for most of his life both pd and hd. So I am going to make my documentary dedicated to him. I want to show how families and the children/teens are affected by being on dialysis. What stops, who gets pushed aside, fall outs, strength, closeness all these different things going on. So i will be contacting three families, first James' family and how life was with James and how it affects all of the siblings and the family and how they are coping now. Second is Vicky, she is now off dialysis after her mum was able to give her one of her kidney and is now fit and well, so i want to show what can happen next after success or will there be trouble in the future. Last but not least is Zoe, Zoe lost her leg through treatment and infection.

I really would love all of your guys help. I really want to get more of an understanding of dialysis and how it affects you and your families.


thank you

Georgia

[kitkatz]

I have been on dialysis for twelve years.  Ask anything you want.  I will give you honest answers.

[GRainbow1989]

Hiya!

Thank you for replying.

What is it you are on dialysis for? How has it affected your life, friends and families?

Georgia Rainbow

[Desert Dancer]

Hi, Georgia -

What a great project and I'm sorry for the loss of your friend, particularly at such a young age.

I've only been on dialysis for 2.5 months, but I'd be happy to answer any questions you may have if I can. Feel free to PM me.

[KICKSTART]

Wow you have picked 3 pretty extreme examples there (no offence) but that might scare a person new to dialysis to death (pardon the pun). What about the people who have been doing D for years , just plodding along. Ok we are all affected by it , but some of us , somehow just muddle through , good days , bad days we take them all !

[GRainbow1989]

Thank you for your advice. I really appreciate it and take it in. However I want to get it out there that children are effected by kidney disease not just adult and the older generation. I would like to hear more about your treatments and how your dealing with it.

Georgia

[KICKSTART]

You might find it interesting to read through some of the posts , as it will give you a good cross section of peoples treatment , how long they have done dialysis and their hopes and fears ! We do have several young people on the forum , if you want to see how they cope with it (not that im ancient myself ! )

[murf]

I am repeating a letter I wrote to my provincial newspaper about opting an opt out system. It indicates life on dialysis. Hope tis helps.

Dear Editor,
I would like to give your readers a little insight into the world a kidney patient.

The diet restrictions are acute. Firstly, you are allowed about 500ml – 1L of fluid each day. This includes fluid from any food. You are restricted to eat the barest minimum of the following foods: nuts. dairy food, cake, muffins, meat, beans, most fruit, tomatoes,  potatoes, fish, eggs, mushrooms, cola, corn and oats. I know I have missed a number out that any dialysis patient would attest.
The actual process of dialysis is not much fun as well. For the patient on haemodialysis, you must front up to the hospital or centre three times a week for a four hour session. This occurs every single day of your life unless you are given a transplant. Firstly, the nurse inserts two very large needles into your arm. During the session, it is up to you how you occupy your time. Some read, some watch TV, others bring in their lap top. But whatever, you do become bored. However, quite often you ‘crash’. Because your body has reacted to the fluid coming off. Some have cramp which has been described as pain worse than having a baby. Most just feel bewildered and nauseous. You can expect to crash about at least once a fortnight. The other type of dialysis is peritoneal where 15l of fluid is inserted into you by a catheter. However, the risk of peritonitis is immense so many are not able to use this option.

The after effects of dialysis also need to be overcome. Apart from never ending fluid and diet restriction, all dialysis patients are constantly tired and are given injections of EPO (the one that is banned by the Olympics) to help in this regard. Most suffer low blood pressure which adds to the lethargy. Your urine dries up and you never go to the toilet. Friends find that hard to understand. We deal with bouts of nausea, insomnia and restless legs.
There is a lot more to this insidious disease and any interested could look up http://www.ihatedialysis.com/ for a greater understanding.

I have been waiting five years for my transplant and although I would be immensely sorry for the family that gives me an organ in obvious tragic circumstances, I would always be eternally grateful. My heart sang when I heard that WA might adopt the opt out system. Every time the phone rings I think it might be ‘that’ call. Maybe, next time, I won’t be disappointed. My heart also sinks when letters to WAN objects to the new system on some sort of moral ground. I also became a little distraught when our Premier stated that we should think about it awhile before proceeding.

If only he knew.

Michael Murphy

[RightSide]

As some of you may know I am in pre-production of my documentary "Life on Dialysis"....

I really would love all of your guys help. I really want to get more of an understanding of dialysis and how it affects you and your families.

Georgia

I'll be glad to help with whatever info I can.

Here in America, both employment and insurance (all types) can be major issues when you are diagnosed with ESRD and told you will need dialysis.

[Riki]

I was a child on dialysis as well.  I was actually the first child in my province allowed to go home on dialysis.  Before me, any kids who were on dialysis, stayed in hospital, where the dialysis centre was, in another province by themselves, or their families moved closer to the dialysis centre.  I was on PD then.  I've had 2 transplants and am currently on HD, waiting my 3rd transplant.  It will be 20 years since I was diagnosed in February.

[kitkatz]

Hiya!

Thank you for replying.

What is it you are on dialysis for? How has it affected your life, friends and families?

Georgia Rainbow

You want a book, then.  I will think out some answers for you and get back

[Henry P Snicklesnorter]

.

[peleroja]

I've been on dialysis 7 years, mostly PD, with a total of 9 months on 2 different occasions on HD.  Other than feeling kind of tired most of the time, I don't feel PD has really impacted my life.  I've done more traveling and seen more states since going on PD than I had my whole entire life before that!  I have a very good friend who checks in on me most days by phone.  She has also done PD and HD and is now a 6 year transplantee.  The only way it has affected my family is that now when I tell my son I'm coming for a visit, he always asks, "Are you healthy enough to come?"  My neighbors all know about my ESRD (after all, how could you miss that big Baxter truck once a month!).  I do what I can do and I don't sweat the rest.  If any of this sparks more questions, ask away.