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Home dialysis Minimize
Location: BlogsYour Kidney Blog - Speak your mind    
Posted by: admin Wednesday, 1 July 2009
Home Dialysis has many advantages and can significantly improve rehabilitation and length of survival. It currently costs Government an average of $60,000 a year for just one patient to dialyse. If this patient is supported and encouraged to move to home dialysis, this cost is cut by a third, down to $40,000. Give us your thoughts....
See our Fact Sheet on Home haemodialysis
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Comments (170)  
By KHIS Angel on Wednesday, 28 August 2013
Re: Home dialysis
Hi John,

It is important to highlight that you are certainly not alone, and that we should be able to discuss openly issues concerning sex, and changes that occur with end stage renal failure, dialysis and transplantation.
What does vary however, is the individual symptoms, which is why it is important to discuss these with your GP or Nephrologist. This would also provide an opportunity to involve your wife in these discussions, so that you both have an understanding of what is happening and why.

I have included two web links below which I believe will answer some more of the questions that you have, alternatively John you may wish to call us on 1800 454 363 to discuss this further.
Kidney Health Australia – Sexuality, Intimacy and kidney Disease: www.kidney.org.au//LinkClick.aspx?fileticket=idTwmTH0YWs%3d&tabid=609&mid=850

Maintaining a Healthy Sex Life – information for people with chronic kidney disease: www.renalresource.com/pdf/healthysexlife2010.pdf

Warm regards - KHIS Angel

By m Kleinman on Friday, 23 August 2013
Re: Home dialysis
If you are interested in preventing further kidney damage, you might want to check out an iphone app called RENALTOUCH or the ipad app called RENALTOUCHXL. It allows people with kidney disease who are either on dialysis or who may soon be on dialysis learn what they can do to improve their quality of life. There is information about 8 areas of kidney health to explore with a question and answer format to reinforce learning.

By Tess Fox on Tuesday, 9 July 2013
On Home dialysis - breakfast when travelling
Check out this fascinating photo and blog - Travelling with dialysis. Australian dialyser Richard travelled across Europe on PD without too many problems. This page features an inspiractional photo of ingenuity and made me smile - http://travellingwithdialysis.wordpress.com/2012/12/05/cooking-up-a-real-breakfast-dialysis-style-and-tips-for-dialysis-on-the-move/

Then I found these tips which from experience, Richard has provided for those courageous enough to attempt travel overseas on PD http://travellingwithdialysis.wordpress.com/

Why not contribute your tips, for others to learn from, via the Home Dialysis Connect Forum - at www.homedialysis.org.au

You need to register to use it - the Forum has just started - but soon it will be known as one of the best.

By Teresa Taylor on Tuesday, 29 January 2013
Re: Home dialysis
Dear Lisa - The Nxstage machine is only being provided by a few units around Australia, although this number is increasing. You will need to talk to your local dialysis unit about local availability and training options.

Limitations still apply to overseas travel based on availability in that country of a supplier of the same equipment. Haemodialysis overseas is usually done at a unit that provides haemodialysis services for visitors.

Information is available on both the home dialysis (www.homedialysis.org.au) and main KHA websites about travel.

If you do use the NXstage plumbing is minimal, and certainly those using it in QLD are travelling to other locations with their machine. If you are keen to travel peritoneal dialysis may offer you better flexibility at this point. Good luck with your future treatment. Regards Debbie Fortnum - Home Dialysis Project Manager

By Lisa on Tuesday, 29 January 2013
Re: Home dialysis
I am really interested in knowing more about the NXstage home machine particularly in regard to travel I am a NSW resident - Tamworth am 40 with a small child - can this machine be taken O/S what are the requirements for plumbing etc and where can I get one.
Thanks

By Debbie (Home dialysis specialist) on Monday, 17 December 2012
Re: Home dialysis
Hi Karmi, There are two types of home dialysis. Peritoneal dialysis requires a storage area space about the size of a small wardrobe. Boxes can be stacked on the floor and do not need cupboards. Home haemodialysis is similar in storage requriements, but the machine takes up space also, either near a bed or chair that are used for this process. www.homedialysis.org.au is our website with lots of information, including what is needed in your home and hopdfully you can find all of your answers there. Alternatively you can ring our 1800 454 363 number for more information. Good luck, and just to let you know that you are choosing the best options for treatment by choosing home, so I hope it all works out for you.
.

By Kami on Sunday, 16 December 2012
Re: Home dialysis
My husband just found out he is in end stage renal failure. We are hoping to do dialysis at home can someone tell me how big of an area he will need to do this , we live in a small home with pets.

By Irene Mewburn on Sunday, 18 November 2012
Re: Home dialysis
I've been on Peritoneal Home Dialysis for a year and I couldn't recommend it more!
As for Home HaematDialysis I cannot say.
But dialysing at home is much more relaxing for everyone, provided that the patient is well enough to do their own Self-Monitoring (Very Important).
If they can't, In-centre is best.

By scott hawkins on Thursday, 18 October 2012
Re: Home dialysis
i have been on home dialysis for 4 years. i have recently been sent home with a nxstage see http://www.nxstage.com/
1 am 43 yo with two young daughters. i can now haemodialyse anywhere i please using a nxstage machine on a generator. i love camping for weeks at a time and can now do this without needing a chair in the nearest hospital. queensland is the first state to buy these machines but they are the future so you need to start agitating the local polies because you will get your life back. especially you young ones.

By john on Sunday, 9 September 2012
Re: Home dialysis
Hi there all. I am on home dialysis for the last3 months.up to now all is going well. my wife and i enjoyed a good sex life.but lately i have not been able to perform as normal.not to make this crude comment,but i cant stay errect and not able to finish what i have started with my wife. i still desire her and love her very much.does anyone no if this a common problem or is it me.

By Debbie Fortnum - KHA Home Dialysis Project Manager on Tuesday, 7 August 2012
Re: Home dialysis
Dear Tony, they are very interesting comments that you make and for telling us about your very positive story.

You are right that it is a fine line between presenting the facts (which can sound scary) and also presenting the positive outcomes that many people have.

KHA are keen to expand phone support for newcomers to dialysis, specifically those looking at home. If you wish to email us with your details, we would love to chat to you about this topic - health@kidney.org.au

You may also phone our KHIS line - 188 4 543 639 and leave a message with Ainslie, our KHIS angel. She will forward your details to me and I will ring you as soon as I can to discuss.

Hope to hear from you soon. Cheers Debbie

By Tony Johnson on Sunday, 5 August 2012
Re: Home dialysis
Hi, my name is Tony, 71 years, on Haemo for 4 years and operating from home for the last 18 months. I recently attended as a speaker at a forum for new clients onto dialysis and their carers and was really concerned at the amount of negativity in the medical presentations. It is understood of course that medical staff have an obligation to provide "the facts" to clients, however I wonder at times if the emotional aspects of what is being transmitted is recognised. Certainly, no-one would volunteer for dialysis - however - it is not a life sentence and with appropriate strategies I believe one can live an almost normal life. There is very little in life that I think I miss out on because of dialysis. Dialysis is not as bad as you think. If anyone is interested I am happy to talk about how I try and approach it.

By Kanowna on Friday, 6 July 2012
Re: Caravan dialysis
Hi All
I'm responding to Ros (4/2/12) re: caravan water tanks. We did not off road while vanning with machine - just stayed in c/parks and used the water filters. Did plan off roading, using 2 x 80 ltr tanks already in van & just doing a shorter treatment...but....I got Transplant in Dec 11. Wow - we are now free...appart from the ever regular check ups.
Good luck with your travels. Dont let the dreaded "D" stop you living and enjoying life.

By Toni Wells on Thursday, 21 June 2012
Re: Home dialysis
G'day Blayne
I'm not sure if it is appropriate to do this but I can recommend a site called 'I Hate Dialysis'. This is an American based site but open to everyone and covers all things kidney. It has kept me sane through dialysis and now post transplant. It is a very active site and contains a huge amount of information from people who are going through renal illness. I'm guessing since you're on this site, you are having issues with kidney health so good luck with everything.

By Ambulatory Alliances on Tuesday, 12 June 2012
Blayne Rush
Hello I am so delighted I found your blog, I really found you by mistake, while I was looking on Yahoo for something else, anyways I am here now and would just like to say thanks for a tremendous post. Please do keep up the great work.

http://www.myspace.com/blayne.rush/photos

By Ambulatory Alliances on Friday, 8 June 2012
Blayne Rush
Hi,
Greetings! This is my first comment here so I just wanted to give a quick shout out and say I truly enjoy reading through your articles. Can you recommend any other blogs/websites/forums that cover the same subjects? Thanks a lot!

By Katy Anderson on Monday, 30 April 2012
Re: Home dialysis
Well its another day in home hemodialysis land (tongue in cheek). Today I have to go for another fistulaplasty and stenosis. The stent is bent (bahahaha). I have two stents, one inside the other, and because my veins are crap, according to my doctor, they have decided that they need more attention. This is now the 10th fistulaplasty in 2 1/2 years. At least I am still on the same arm. According to the same doctor who thinks my veins are crap, it is the gift that keeps on giving. I think its quite funny really as there could be worse things happening. I could have terminal cancer or something horrendous like that. In the meantime, I just need to plod along and do what I am told. It's getting easier to do that now as my life is pretty good. As long as I follow the rules, dialyize at least 40 hrs per week, I am as healthy as the next person. Yes I get tired and some days I just don't do anything except read or nap, but, I have a life. So, Home hemodialysis, My husband thanks you, my children thank you, my 3 little dogs thank you and, most improtant of all, I thank you...till next time, chin up everyone, you are not dead yet and neither am I. :-))

By Kidney Health Australia - Web Manager on Monday, 23 April 2012
Re: Home dialysis
To KATY ANDERSON
Thank you Katy for sharing - on behalf of the many who will read your posts now and in the future. Your words will give strength when others need it.

If you have read Katy's comments and are still feeling down, then reach out to others to help. To an understanding friend, family or a Helpline where help is always available to you.

Cheers Teresa

By Katy Anderson on Saturday, 21 April 2012
Re: Home dialysis
Hi, My name is Katy and I have been on home hemodialysis since Oct 2009. I was told in August of 2009 that we had to consider some other form of therapy as my Kidneys had now failed. On August 17, I started PD, I was terrified. All of a sudden all this information was being thrown at me and I didn't know if I was coming or going. Thank goodness for the staff at the renal unit. They were amazing, soon I was feeling better and I could focus on taking care of myself. Only problem was, my body did not like the tube in my belly for PD. In october I went onto Hem and have never looked back. Yes I have ' down' days when I am tired and sick of being "sick and tired". But for the most part, I have a good life. I do home hemodialysis 35 to 40 hours a week, at night. This way, I have a life. I am very lucky that I don't have to work, so I can do what I want to do, not what I have to do. The only thing I "have" to do is dialysis. So "fred"(my machine) and I have a date sun, mon, tues, thurs and friday nights for 8 hrs per night. Everyone I meet says 'BUT YOU LOOK SO HEALTHY". That's because Fred and I have a very close relationship. Since going on Dialysis, I have seen my little girl get married, My son become a father and I have started going to university doing 1 class per semester. The alternative is that I stop dialysis and in 2 weeks they will bury me. So, for anyone who is just starting this process, stay calm, listen to your renal unit staff and enjoy your life because dialysis is a second chance. I am having a good life because I choose to...

By Fiona on Thursday, 29 March 2012
Re: Home dialysis
Hi all, I'm a single mum of 2 very young kids and am in stage 4 ckd after donoring a kidney to my younger sister with about 20% function left. My doctor has told me to prepare myself for dialysis.
I'd love to hear more about the pro's and con's of nocturnal and standard HD as I am the sole provider for my kids, I need to continue working. It'd really help me to start making some decisions for the near future. Also I've seen on websites that the fistula could be done in the leg in lieu of the arm.... has anyone had this done? and how do you rate it/any issues?
Thanks so much!

By Pauline on Saturday, 17 March 2012
Re: Home dialysis
to Home dialysers:
My husband is doing home heamodialysis. He gets a sharp bin from the Dialysis unit, An extra recycle bin from local council for plastic bottles and cardboard boxers ( which we pay $50 a year for ), We bag the lines in a contaminated waste garbage bag and take it to the local hospital once a week. ( They don't charge us for that. )
We weren't comfortable putting them in the local rubbish pick up.

By Ros on Monday, 20 February 2012
Re: Home dialysis
Thanks Paul for replying to my question about portable water tanks, for a caravan with a dialysis machine installed. We have considered "bladders" but so far we have found they have the wrong type of fittings, not stainless steel, or fully plastic. Brass connewctions etc lead to contimated water. The tank needs to hold about 150-200 litres. This will allow me to do a "short" dialysis run to tie me over until we reach a town that has suitable water. Ros

By Paul on Friday, 10 February 2012
Re: Home dialysis
Ros, although I'm not on dialysis yet, it's very close, so I don't really know how much water water is needed. We have an offroad caravan and if we stay out in the bush for prolonged periods and need to refill the water tanks we leave the van and head off in the car to the nearest town to fill a "bladder" that we carry. It holds about 180litres, we purchased it from Whitworth Marine in Sydney, it's meant for water or fuel on long range yachts, when not in use it just folds up flat, it's very strong. We just place it in the back of the car and hook a hose up to it and fill it up, when we get back to the van we just run it into the filler inlet and top the tanks up. This type of thing may suit your needs.

By L on Friday, 10 February 2012
Re: Home dialysis
Hi Kevin,
The renal staff at the hospital are very helpful in answering any questions you have. Ask lots and lots of questions as it will make the process easier. You should have been told or offered training sessions on how the machine works and how to use it. I know I asked to observe (with permission) someone in training before I started dialysis. It's not as daunting after you have the training. Don't be afraid to ask heaps of questions. I did and I read the entire manual too.

By Kevin Bui on Thursday, 9 February 2012
dialysis at home
Hi everone I have kidney failure and I will get ready to start dialysis at home. I thin the PD can anyone tell me how it works? thanks

By Ros on Saturday, 4 February 2012
Re: Home dialysis
Its a while since there has been any comments, so I will give it a go. I've been on home D. for more than a decade because I can't get a transplant due to my bloods not being right.
Get used to it, its now routine.
Last year we bought an off roader caravan, so it is fairly small. We have been away a couple of times, parking in caravan parks and then using a tent to go further, but only for 1 or 2 nights.
We are currently looking for water tanks to take with us for dialysing in the bush somewwhere, but seem unable to find something suitable.
I was wondering if
KANOWNA has managed this (see blogg 14th July 2011.

See the blogg thebigdand me and scroll down and you will find out about our caravan.
Good Luck to all those on dialysis

By brenda lovegrove on Friday, 18 November 2011
Re: Home dialysis
My husband has been on PD for 3 years after infection which does not respond to antibiotics he is now on Haemodialysis. He drives a round journey on 40+ miles 3 times a week, returning home after 11pm.
Were can we buy a home machine in England as our unit is not interested now he is of PD, He's rocked the boat with infection.

By L on Wednesday, 14 September 2011
Re: Home dialysis
Hi all,
I've had a transplant and not on home PD anymore but I thought my experience with home PD might be helpful to you. The PD machine is not very big - about the size of an average printer. I have it in the bedroom as I opted to do the dialysis at night which freed up the day. The fluids, caps, tubings and antibacterial solutions were delivered monthly and I used the ensuite as a storage area. I made the bedroom looked very homely and not at all like the hospital ward. The discarded fluid was collected in a large bucket (bought from Bunnings) which I emptied out into the toilet each morning, then I cleaned the bucket with antibacterial detergent. The empty bags and tubes were disposed in the normal garbage bin. I had an extra bin for this which I applied to the council and was made cheaper with a letter from the hospital. I also obtained another recycling bin from the council to handle all the cardboard box that the fluids and tubes came in. Aside from the minor costs, the machine and all equipment were supplied free by the hospital. The hospital also provided antiseptic wipes and dressing material for the PD exit site on the abdomen. I also used disposal paper towels and antibacterial handwash when washing hands which were the ongoing costs. Although not to the extent of caravaning, I did manage to travel interstate by plane. I packed the machine in a special case supplied by the medical team and took it with me as luggage. The rest of the fluids etc were sent over and the team did a fantastic job at being so organised. Everything went smoothly and I was away for a month. No one even knew I was on dialysis as my days were free! I hope my experience may be helpful. All the best to you all.

By June Cilento on Thursday, 8 September 2011
Re: Home dialysis
Hi, my husband is heading toward requiring dialysis, he has only 30% kidney function & probably by end of year will require Dialysis. I was wondering if anyone can tell us what does a machine to have at home costs. Also we like to go carvanning, how big are the machines. Also can we travel o/seas with a machine? Would appreciate your answers.

By Doreen on Saturday, 3 September 2011
Re: Home dialysis
Hi Tarsh,
I will send photos when I get a chance to find my camera. Meanwhile, I can describe my son's set up. He has his machine, recliner and a bookcase for equipment at one end of his smallish bedroom. Taking up about 3mx1.5m at one end. Meanwhile we have consumables in the sunroom, piled up in one corner. 400kg per month, but it's not inconvenient, and you just have to accept that we are not House & Gardens. Disposal of good quality 5 litre plastic bottles is more of an issue for me at the moment.

By Tarsh on Saturday, 20 August 2011
Stock Storage
Hi Everyone

I am building detached studio in preparation for home haemodialysis & would like to know how much "stock" I should prepare to store. Could someone send me photos of the setup I should be considering? Most grateful for any help & advice

By Tarsh Cuddy on Wednesday, 10 August 2011
Re: Home dialysis
To Doreen

Your question regarding line disposal prompted me to ask this of my Renal Unit - they will provide me with a sharps bin & yellow bio-hazard bin, which I'll take to the hospital when full & they will dispose of the waste.

By Kanowna on Tuesday, 9 August 2011
Re: Home dialysis
Responding to Doreen about disposal of lines, needles etc.
We gave a needle bin that I take and change over regularly at D unit. I rang our local shire regarding disposal of lines etc. and they offer no special service. Lines go out in regular garbage. Boxes get recycled.

By doreen finkelstein on Monday, 8 August 2011
Re: Home dialysis
Hi to all you brave home dialysis patients out there.
My son has just started home dialysis. He is 23 and not keen on asking questions! But I need to know how to get rid of all the consumables once they have been used. My doctor claims that because there is traces of human blood in pipes etc, they are a biohazard and therefore can't go in the council bin. What do you all do with the tubes etc. ? I don't want anyone to get into trouble, but maybe you can answer anonymously!

By Tarsh on Sunday, 7 August 2011
Home haemodialysis setup
Hi All

I am in the process of getting trained & ready for home haemodialysis but am unsure where I want to do treatment. I don't want to do nocturnal, had enough of my bedroom looking like a hospital ward when I was on PD, and the majority of my house is carpeted.

Hubby had the idea of building a dialysis room off the house, equipped with storage for boxes, filters etc but I have been unable to find any pictures of other patients setups.

Could someone send me photos of their rooms so I know what I'm in for? bugga_1@hotmail.com This would be greatly appreciated :D

By AndyBec on Monday, 18 July 2011
Re: Home dialysis
Hi Kanowna
My wife has just started HD and is heading toward Home Heamo. We are keen caravaners and would love to talk to you about how you have used it in your van. Can I email you about this?
Thanks Andrew - andybech1@optusnet.com.au - Gosford NSW

By Pauline C on Sunday, 17 July 2011
Re: Home dialysis
to: Debbie Basham,
My husband has been doing nocturnal now for 9 years. His pump speed is 280, although I hear most people have it at 250. Instead of leaving his arm flat on the bed, he used a pillow to rest his arm on, His arm is slightly tilted up. Pressure usually remain the same through the 8 hours.
regards Pauline

By Kanowna on Thursday, 14 July 2011
Re: Home dialysis
To Debbie (29.06.11) I rest arm in a poly pipe cradle. Nocturnal for 4.5 years and able to sleep without worrying about blow outs. Speep of pump is 240ml/per min. Photo of arm rest on request - kanowna@wideband.net.au
To Pauline (04.05.11) We went away for first time in May with Fresenius Machine in Caravan. Had filter system made up with 3 filters (5m, 1m & carbon. Worked terrrific. Hubby did plumbing in van. It was easy and no holes drilled. We put the machine discharge pipe in the shower. RO had to be covered up with tarp as we kept it outside to reduce noise. Next step is Generator and extra pump so we can free camp.

By Teresa Taylor on Monday, 11 July 2011
Re: Home dialysis
Hi Sam - research tells me that here in SA private dialysis is around $450-$650 per treatment. However if you are in another state, it may be much more expensive - between $800to $900 per treatment. To find out exactly, you should contact the renal unit you are considering and ask them directly of all costs. You should also ask if they have capacity to accept a new dialyser.

By Sam on Monday, 11 July 2011
Dialysis cost
Can somebody please let me know the cost of 1 time dialysis for a non- resident person ?

By Debbie Basham on Wednesday, 29 June 2011
Re: Home dialysis
I am trialling noctural dialysis and am having trouble with my arterial pressures going up when I lie down. I am also interested to hear what pump speed noctural patients are dialysing at. Any suggestions?

By Pauline Lucas on Wednesday, 4 May 2011
Re: Home dialysis
Hi all caravaners out there I could be looking at dialysis in about 12 months wondering what you have to do to fit van out.We have a 27ft 5th wheeler so hope there is enough room as someone told me the machine takes up a lot of room.Also interested to talking to people you have been through this.Thanks Pauline email:paulinelucas53@hotmail.com

By cynthia on Wednesday, 27 April 2011
Re: Home dialysis
Interest in mobile van for hemodialysis

By wendy clark on Friday, 22 April 2011
Re: Home dialysis
hi all im wendy my hubby peter is start home dialysis training on wednesday in melbourne we live in central victoria we have three kids at home two whom have suspected autism currently going threw testing i have three older children as well
peter has been dialising for four years in august he started with heamo then went to pd then back to heamo and then pd and now heamo again he wont go back to pd after two mass infections that nearly killed him in early jan 2011

By Kanowna on Monday, 4 April 2011
Re: Home dialysis
Re: Caravaning and Dialysis. We are still in the process of having the van fitted out. Our intention is to get powered sites for the 'on' nights. 12v system will not handle machine, RO, etc. Will keep 'the'blog' updated on how we go. Trial and error will determine if we have to get a generator or not. Cheers

By Teresa Taylor on Tuesday, 15 March 2011
Re: Home dialysis
Thanks Toni - appreciate your quick reply to this Blog.
Cheers - your web angel.

By Toni Wells on Tuesday, 15 March 2011
Re: Home dialysis
We always took a powered site on our travels. The Baxter manual - under tech specifications - shows 600watts maximum and 100watts average. Hope that helps.

By Andrew on Tuesday, 15 March 2011
Re: Home dialysis
Hi Kanowna & Toni
My wife is about to start home PD and we have a van and enjoy remote camping. Can you guys tell me do you run a battery system in your vans, or do you just get a powered site? Can anyone tell me what is the power consumption of the cycler overnight?
Thanks - Andrew

By James McVey on Monday, 28 February 2011
Sydney Dialysis Centre SDC
All the straff at SDC should be fired and rehired under a review to performance. Running a centre lost in the last century in no good. What is Removed to Web Policy... doing. All i get is excuses. Not enough technicians to run the show! Dipsy nurses who don't know how to use a phone system, or mobile phone or use the internet.I am tired of the gross incompetance.

By mick on Friday, 25 February 2011
Re: Home dialysis
Hello I have a removed due to web policy , my father used for home dialysis for 1 year then went to the hospital. It has been in storage ever since. If anyone is intersted please contact me on ......... Removed due to web policy - for more information. The unit is currently in Removed due to web policy.

By Toni on Thursday, 24 February 2011
Re: Home dialysis
I check in here every couple of months to see what's been written. Home haemo especially nocturnal sems to be very poplular. I'm on PD but having 6 weeks of haemo while healing from a hernia a repair. I find haemo a struggle. Having said that, it is working well for me so I am lucky. Alan, I agree that looking after yourself is the best thing to do. Eating right is definitely the way to go. I'm not vegan but try to eat lots of fresh food esp veges. Kanowna, hubby and I travelled for 5 weeks in our little pop-up. As I mentioned, I'm on PD. We had lots of boxes and had to be inventive re space but had a great holiday just the same. Greg, much sympathy for the trials kidney disease has caused your family. Your story was touching. All the best. I agree- one day at a time and appreciate the moments.

By Greg on Tuesday, 8 February 2011
Re: Home dialysis
G'day everyone in the dialysis world! 
A little about myself. I am 32 years old and am the 3rd person on dialysis in my family. My younger sister was the first to start dialysis at a young age of 13 years. She was due to reflux and was on PD for many years and moved to HD. My father gave his kidney when she was about 16years old but failed only after 3 years. 
My mum started dialysis close to 10 years ago and she was due to diabetes. My mum passed away 4 years ago due to infection spreading through her body after amputation of her leg. 
My sister also passed away last year due to complications of heart surgery. She was only 27 years old. 
Now the renal team haven't found a cause for my kidney failure as the risks for a biopsy were too great for the small function I had left in my kidneys. I am not diabetic nor did I have reflux and finding the cause was not going to serve anyones curiosity other than the renal doctors. 
I also never knew my kidneys were declining until I went to my GP and got a blood test for the flu... Next thing I'm being rush through emergency. 
My wife and I found out she was pregnant one week before being admitted into hospital. She is the most courages and supportive being I have met. I started HD 3 months after my diagnosis and then I trained for home HD 3 months later. I HAD a phobia of needles, couldn't stand them but when your life depends on it you have no choice. I have now been at home for 14 months now. I am thankful for being able to dialyse at home and have somewhat freedom to do the things I want. The best gift is to spend time with my family and see my son grow and not miss out on any special moments. I also work full-time and dialyse for 5 hours every 2nd day. 
I recommend home HD to anyone considering going on. I also recommend to live your life as 'normal' as possible. People on dialysis CAN have a normal life but only YOU can make the change. 
This is my story....
Thanks for reading :-)
GK

By Kanowna on Thursday, 20 January 2011
Re: Home dialysis
Hi Dialysis Community
After 4 years on Nocturnal D, we have bought a van to fit out with machine. Anyone out there in "D World" interested in forming a group of "D" vanners?

By King chlorella on Sunday, 26 December 2010
Re: Home dialysis
Hi,my name is Alan,am 55yrs old,on home haemodialysis for the second time,i opted to do it due to the huge volume of people needing dialysis,felt it unfair to do hospital dialysis when i was trained to do home D,reason i stopped was from cancer,living alone can be hard,thats probably why i contracted cancer in the first place,didnt have much of a clue about nutrition,so i didnt eat real well,too much processed food over time didnt help.My renal doctor told me dairy was a real enemy to dialysis patients,a week later my fistula collapsed,so i went on a vegan diet,thats when i really had to look at my diet.
Now,i eat better than i ever did,most of what i eat i make myself,its cheaper & interesting.In one day i make a huge batch of food,storing small amounts in snap bags,they take up less room in the freezer,then i just reheat in saucepan as i need it,then afer dialysis when you feel hungrey,but too weary to cook,it makes a big difference when you live alone.
Am so glad to be able to get my blog up & running.
Hope everybody had a beaut christmas,looking forward to the new year
along with meeting other people on dialysis,cheers,Alan

By Annie Revell - KHA on Wednesday, 22 December 2010
Re: Home dialysis
To BRIAN - Hello Brian, Many people find that nocturnal home haemodialysis suits them for those very reasons that you've mentioned. However at present it's not available in all regions around Australia and your local home haemodialysis unit will be able to let you know if it will be possible for you. There is excellent information on nocturnal haemodialysis from Geelong's Barwon Health Renal Unit to be found at www.nocturnaldialysis.org which is very informative and will answer many questions, including that a double bed should still be fine if it suits you both!

By Annie Revell - KHA on Tuesday, 21 December 2010
Re: Home dialysis
To CHERIE ROMARO - Hi Cherie, from your blog I'm guessing that a nephrologist has seen your Mum and advised she needs dialysis? If they feel that haemodialysis is the most appropriate option for your Mum they can make the recommendation and start the process for this to be home based if this is appropriate for her, although each state can have a slightly different process.
Perhaps you might like to contact our Kidney Health Information Service freecall number, 1800 454 363 (1800 4 KIDNEY) and talk with us directly about this for some more detailed information.

By cherie romaro on Thursday, 16 December 2010
Re: Home dialysis
I am wanting to know how I can organise dialysis athome for my Mother she is 88 and has just had surgery which has ruined her kidney function She is too fragile to take to the hospital for dialysis I would like to set up a machine and learn how to operate. Can anybody tell me what my first steps should be.
Thank you

By Brian on Wednesday, 15 December 2010
Re: Home dialysis
I am at home doing haemo dialysis during the day but I would like to try nocturnal for a couple of reasons, freeing up my time and better outcomes are the most important.
Is there anything I need to do differently to dialyse at night to what I am doing at day?
And on a more personal note...is dialysis possible in a double bed? Or should I get 2 single beds?
I've been married for quite a while and must think of my sweetheart.

By Peter on Saturday, 4 December 2010
Re: Home dialysis
Hi

thanks for all the stories here

I have just found out that I am down to 2.5% functionalty of my kidneys and need to start dialysis

the doctor telling me I had 4 months left was a wake up call

I am now on a sharp learning curve

could anyone please tell me the sorts of costs I will be up for to have dialysis from home? as this is what my specialist is advising I do etc

many thanks

By Teresa Taylor on Thursday, 21 October 2010
Patient Stories - Kidney Cancer Survivors in Australia WE NEED YOU
Our KHA office is launching a website on Kidney Cancer - we need Aussie survivors to tell their story and be featured on this website, first names, dummy names, or full name - only what you are comfortable with - ANY VOLUNTEERS email kate.johnson@kidney.org.au or phone 03 9674 4316 - Teresa, your KHA web angel ... smile

By Teresa Taylor on Wednesday, 20 October 2010
Re: Home dialysis
TO KELLY DAWSON - Hi Kelly, can you make contact with Kate Johnson on 03 9674 4316 at the Vic KHA Office or email her at kate.johnson@kidney.org.au
Our National Consumer Council have been lobbying for some time on this issue - it is only by a joining of voices that KHA can speak for its consumers. So Kate is very interested to get people like yourself involved.

By Kelly Dawson on Wednesday, 20 October 2010
Costs of Home dialysis
Hi guys - I've been on dailysis for 11 and 1/2 years, but only at home for about 3 years now. I wish I had done it sooner - it has given me my life back and I would recommend it highly to anyone!! Now I can fit dialysis around my life - not the other way around. The reason for my blog is that I was wondering if anyone has lobbied the Commonwealth Govt for some standard concessions for all people on home dialysis? It seems crazy that it just depends on what State, or what Council, or what Water Retailer area you live in. We are saving the Government so much money buy doing it ourselves - why not a standard concession for everyone?? I am in Queensland and the electricity concession doesn't go near covering costs, but our Council gives me a good rebate for water. But there are so many additional day to day costs that aren't covered like rubbish bags, extra rubbish bins, clexane etc. I think the costs of doing it at home are prohibitive to many people. I wonder would the Kidney Foundation think about taking this on?

By Dave "Bear" Pritchard on Tuesday, 19 October 2010
Re: Home dialysis
First time here, after getting a prompt on my Facebook page - I had IGA nephropathy, was nearly dead when taken in to P.A.Hospital, Brisbane. |After a rather poor year on peritoneal, I got fistula & went onto home haemo. I would recommend to anyone capable of doing it themselves. I was dialysing overnight, 4 times a week, totalling about 35 hours, soooo much better than the sad, inadequate 12-15 you get at clinic, due to the shere pressure of numbers. I too would not dream of taking a kidney from my offspring, altho I would, of course, have done so for them. UNfortunately, I lost fistula to infection, dialysed back in clinic on catheters, then got tranplant on Valentine's, 2008. ANyone who wants a support chat or my thoughts on home haemo &c, I'm bearup@powerup.com.au

By Toni Wells on Friday, 8 October 2010
Re: Home dialysis
I check in on this site every now and then and how great to hear positive stories from Mark and Brian. Thanks so much for taking the time to post these and it is so reassuring to hear about people who are having improvements in their health from dialysis. We need more stories like yours. All the best to everyone out there dealing (or dreading) dialysis.

By Teresa Taylor on Thursday, 23 September 2010
Re: Home dialysis
Hi Brian
We are so glad to hear that your training for dialysis is going well! Holiday dialysis is very topical at the moment and KHA is exploring a number of possibilities, so we appreciate this suggestion. Have a look at our section “Dialysis and Travel” for information on holidays- the following is a link to this site:
www.kidney.org.au/ForPatients/DialysisandTravel/tabid/608/Default.aspx

By Brian Fidler on Tuesday, 21 September 2010
Re: Home dialysis
I'm in training for home dialysis and expect to be doing for myself by December. I'm using button hole cannulation and want to let everyone know that it is nowhere near as bad as I thought.
I'm 75 years old and was a very sick man before I had no alternative but dialysis left. Now I'm sorry I left it so long. I know I was a real pain to my doctors and nurses because I was in denial for so long.
I'm never going to get a transplant and would not want one (my daughter has offered) because there are plenty who need it more than me. But I am really happy with dialysis.
I see that a gentleman in Darwin is on Home HD...I wonder has any thought been given to a dialysis register of people who would be willing to exchange homes for a holiday.

By mark pollard on Sunday, 29 August 2010
Re: Home dialysis
Hi all i have been on dialysis for around 5 years the first 2 on pd i found that more of a problem than my current home hemo, i was hooked up to the pd cycler for 84 hours a week 6pm to 6 am 7 days a week, but now i do my 15 to 20 hours a week on my hemo machine at home my wife bought me a lovely leather recliner chair which i nod off in just as soon as iam hooked up. we live and work remote and iam very greatfull to the renal care in the northern territory for my machine and stock. i still do a very hard days work and some days loose 3kg in sweat so in the wet season i dont have to keep a ver close eye on fluid in take at the moment my dry weight is around 95kg, i still find it hard to control my fluid intake i dialize every second day but check weight and blood pressure every day if its not within the boundries i have set myself i will go on the machine. if we want to go to darwin for a weekend i will do dialysis thursday and friday night if i get overloaded while away its no problem to call into nightcliff renal unit to do a couple of hours, nightcliff renal have some of the most careing people you will ever meet, they taught me and gave me the confidence to do my dialysis at home in the middle of no where i had a direct line to the unit if needed. i have enough annual leave saved up so i should go into Darwin and get the rest of the transplant work up done so i can get on the active list. i dont let the dialysis worry me i still live an active normal life weekends away fishing 4wheel driving a few beers every now and then, i do my monthly bloods and send my figures in and every body is happy.

By Toni Wells on Thursday, 10 June 2010
Peritoneal dialysis
I have just reviewed my post of May 2008, where I was expecting having to go on CAPD would be simply awful. It seems 'better the devil you know than the devil you don't' is true for my situation. 5 weeks into PD and (touch wood) all is well. Going on dialysis has not been the drama I expected. The training I recieved was thorough and the dialysis unit is very supportive. I found the insertion of the catheter quite a hurdle but once I recovered from that little bit of surgery, everything has been fine. It is amazing how easily it becomes routine. I have my appetite back and have gained some weight and feel better in myself. Definitely a lifestyle improvement and the pros far outweigh the cons.

By Brett on Wednesday, 26 May 2010
Re: Home dialysis
Hi my name is Brett
I have been doing nocternal home dialysis since march 2008 & would recomend it to any person who is serious about leading as normal a life as you can on dialysis .The nurses were suportive & very helpful in training.
button hole canulation is great once you get used to it.
I am now 52 & have not missed out on any time at work or play for that matter as I still surf regularly & go motor bike riding when I choose to.
I think a positive attitude & pushing yourself a little & not saying I am sick
when all that is wrong is your kidneys dont work anymore but if you get your dialysis under controle & I mean take some responsibility for your own well being & not feeling like you are a burden on society .Live your life to the full & enjoy doing what you can.
I am very happy doing my own diaysis & controling the time the place & the amount that I do & flexability.
keep positive & I hope this helps people who are unsure about there situation as touch wood my experiance so far has been positive .

By Larry Green on Thursday, 6 May 2010
Re: NxStage System 1 portable dialysis machine
On 19th Septmeber 2009 I wrote and said I would try and find out more about portable dialysis machines. I didn't do it then because 10 days later I received a transplant after only 22 months dialysis. Now after 7 months I am still getting increasingly better results each time I visit the doctor and we are planning for a European holiday, if all is okay, after 12 months from the op.
Back to the machine. I emailed the company in USA and was told that there is no facility in place for Aust patients yet. Mainly because of supply of daily treatment parts and fluids not being in place here.
I am now in a position that I won't be following it up. I am sure you will understand why.
I received a kidney from a deceased donor and our compatiblility was almost the same. I now take only 5 tablets of a morning and 4 at night. Other recipients, whom I know, who received one donated by their spouse, were not as compatible, and take many more tablets than I. Something to consider when looking at live donors.
Best prayers for all you fellow CKD patients.

By Tim on Thursday, 6 May 2010
Re: Home dialysis
I thought I would add my perspective as a supporter of a person who does home Hemo dyalysis. I am very grateful that my spouse has been given the opportunity to do this type of dialysis as it frees up a lot of her time. It also allows us to have a better quality of life in that we can spend more time together. And she can do dyalysis in the comfort of our own home.

The draw backs are few and most we have overcome. Such as the noise of water purification system and the dyalysis machine itself. Not to mention the lights of the machine, which at night can be quite bright.

She has been "on" for about 6 months now completing her training at the SDC in December of last year.

No system is perfect but this is about as good as it gets. I believe that with education more people will understand Kidney Disease is not like a cold. It does not "go away" nor do patients "get better". They exist on dialysis it does not "make them better".

By KHM on Sunday, 18 April 2010
Re: Home dialysis
My husband has been on Home PD for about 3.5 years and all in all we have coped well, we were travelling around oz and made the most of the flexibility of pd. Well the time has come to make the move to Hemo..pd is just not working anymore :( So i guess we are a little anxious but know that we have no choice..Can anyone let us know is it easy to learn? are the needles easy to jab?? Does the machine give you error codes just like our little pd one?

By David on Wednesday, 24 March 2010
Fluid restrictions
I would just like to make a few comments about my experiences. I have been dialysing now for about 6 months. My dry weight is about 77 to 77.5kg. For the first few months I was always getting down to this weight gaining about 2kg between Dx's. Passing literally nothing and trying to limit drinking to a litre and a half per day. And I was struggling.I enjoy a beer. For the past couple of months my weight is fluctuating from 81.5kg to 79. 5 post Dx(Correct dry weight still 78kg) still only putting on 2 to 2.5kg between sessions, but probably drinking closer to 2.5 litre or more per day and passing the rest. Blood Pressure still Good. And swelling in ankles non existant. For the past 10 or so years i have had a lot of swelling in the ankles, so I believe what i'm doing now to be OK. I was wondering has anybody had any experience with doing something simillar to this.

Cheers David

By Teresa Taylor on Monday, 22 February 2010
Re: Home dialysis
Dear Bernadette,

Thank you for your enquiry. I spoke to your sister earlier today and passed on the following info regarding your mum.

As your mum is from Ireland, her dialysis treatment would be covered under the Medicare Reciprocal Agreement. (http://www.medicareaustralia.gov.au/public/migrants/visitors/ireland-nz.jsp)

It would be more cost effective (both financially and time-wise) to receive treatment at a unit than try to get a dialysis machine installed at your home for the duration of your mum’s visit. This is because there are the costs of the machine and consumables to be considered as well as training to use the machine and other logistics, such as the plumbing required for installation.

Dialysis units that may accept your mum for treatment during her stay can be found here on our Dialysis Unit Guide: www.kidney.org.au/ForPatients/DUGDialysisUnitGuide/tabid/607/Default.aspx

It will be up to you to liaise with the dialysis unit directly and Medicare Australia will also have more information for visitors travelling to Australia. I highly recommend that you contact them prior to making any further arrangements as they will have the most up to date information about travelling, reciprocal agreements and entitlements.

Hope this helps and please feel free to contact our 1800 4 KIDNEY line (1800 4 543 639) if you require more information.

By bernadette murphy on Saturday, 20 February 2010
Re: Home dialysis
Hi, My Mum has started dialysis recently in Ireland and wants to come out to me in Queensland for a holiday (12months if immigration let her stay) How much would a dialysis machine cost if I had to purchase one (not entitled to any government rebate). I know my questions may be silly but can you buy them 2nd hand? share someones who lives locally or would it be more cost effective to go to a private hospital 3 times a week? Thanks for your help Bernadette

By David Raynie on Sunday, 31 January 2010
Re: Home dialysis
Check out http://bigdandme.wordpress.com/2009/04/26/get... . Its a great intro to dialysis

By Sarah Grant on Sunday, 10 January 2010
Home dialysis TRAVEL
Hi everyone.
My point of this blog is to find someone who is on home dialysis, with a machine at their home in the Nelson Bay/Newcastle are who would allow me to use their MACHINE only 3 x week. But a little about me and my situation first.
I'm a 22yr old female who was diagnosed with Kidney failure a year and a half ago due to a very, very rare blood sydnrome called Atypical Shegar Negative Hemolytic Uremic Syndrome. I was diagnosed with this a year and a half ago also. There is no known reason why I became sick, but I have been told I had more chance of being in a plane crash, being bitten by a shark and winning the lottery all on the same day then getting Atypical H.U.S. It was a totally random gene mutation.
I am currently in my last week of home training and will be at home on my own machine very soon (and I'm very excited and grateful that this was an option for me) !
I haven't had a holiday since a year before I was sick and I have been homebound to my home town due to dialysis 3 x a week and specialist visits, not to mention long Intensive Care and hospital stays plus multiple surgerys.
I am looking for a home haemodialysis patient in the Port Stephens/Newcastle area who would be kind enough to help me out and allow me to use their MACHINE (i will supply my own concentrate, bi-bags, saline, lines, cannulas, EVERYTHING ELSE etc) 3 x a week for 4 hrs at a time. I will of course re-imburse for electricity and your generosity! The favour would definately be returned if needed, and you wanted to holiday around Sydney/Blue Mountains area.
If this could be you or you know a fellow patient or friend who could help me have a holiday with my family, please, please let me know. My only other option is to drive back every second day 3hrs each way and have dialysis at my house.

PLEASE e-mail me at s-grant@hotmail.com if you can help me out :)

Thank You.

By Chris on Friday, 27 November 2009
Re: Home dialysis
How do you all cope with the Water treatment machine? I have been told that this takes the most work. Everyone talks about needles etc but this is the biggest thing that has me worried so far. Any help?

By Megan on Wednesday, 28 October 2009
Re: Home dialysis
Hi David
Sorry to take so long to reply to your blog, time flys. By now you would be coming close to or even maybe finished your home training. How did it all go with the left hand, that would be hard I believe but they are so awesome at the training centres they wont let you go home till you are 100% ready, which is great. I have to admit it was hard at first doing the night time dialysis due to the fact that you are lying on your back for the full 8 hours and not being able to move and its something you have to get used to. When I first started nights I was lucky to be sleeping 2 hours a night, just because it was different and you get a bit anxious I think with it being night time, no noise, no lights etc but you do get used to it. I have still not yet slept a full night straight on the machine, I wake up about twice now BUT fall straight back to sleep each time, I think my brain is just waking me to check that everything is okay. I am actually doing 8 hours straight now, sadly I dont pass much anymore so I can be on there for that long without having to go to the toilet, so not sure what to suggest there. With the needling, I actually tried on the edte of my bed but could never get it right as was used to sitting in a chair so the nurses suggested that I do my needling in the chair than transfer to my bed to put myself on, lay back and fall asleep. I have a lamp on in the room on top of the maching to put myself on with so I can just turn the lamp off for darkness (as once I am on I cant get up to turn lights off etc). Hope this is of some help and if you have any questions about anything please dont hesitate to ask. Hope all is going well.

Cheers
Megan

By Tony Dix on Friday, 2 October 2009
Re: Home dialysis
the past two days I have been reading several forums on dialysis, and my thoughts have gone a complete circle,
1. I had a wish to do home dialysis st nights and get a complete detox so to speak.

2. I read a few days ago a pensioner in NSW is paying more than
$140 00 extra per month on his power bill after deducting his subsidy ie he would be getting about $670.00 a fortnight approx rent and food and fuel would eat $640.00 even being frugal leaving $60 per month for power bills A Hopeless situation

3. an expensive machine setup is at his house is serving only one patient.
when I dialysis at the clinic , at least three other patients have access to that one machine and as a patient I have constant expert monitoring of my condition, and for serious incidents a doctor is on call , the clinic is air conditioned and meeting the other patients and the team of nurses seems to be a social event. The only minus point is the time...a chunk of six hours at the hospital in the day time three times a week. I can by arrangement change the booked time for special events. I reiterate I regard the biggest plus is the professonal monitoring recieved .

4. With the above factors in mind my present choice is Clinic care

By Larry Green on Saturday, 19 September 2009
NxStage System One
Hi to Louise Rondel,
I had heard from my doctor about 4 uears ago that the might be a portable machine but your blog was the first positive news about it.
During my training for home haemo I was told that it was just a matter of arranging to dialyse in a different location if one wanted a holiday. But that is NOT the case in most of the places I want to go. So one of these machines would be great.
I have asked NxStage the cost of one. If it is affordable and flexible enough to use in Aus it would be nice to be a goer. We are looking forward to travelling in our caravan again. I have also asked how much water it needs per sesion because that is a definite problem now. When I get a transplant I could make it available for use by other renal patients rather have it lie in a cupboard.
I will keep all up-to-date.
Larry

By David on Wednesday, 26 August 2009
Re: Home dialysis
Dear Megan,

I just stumbled on to this blog site and what a timely event. Yestersday I had my first day of Haemo training. i am 41 years of age with a failed transplant after 18 Years of success. I think it is going to be a little tougher this time round because of age(not quite as gung ho as I once was) and because I have to learn it all left handed. I also intend to try and do dialysis overnight. Your letter has given me enough confidence to say that this is possible. My concerns at this stage are sleeping straight for 7.5 hours. Can you do this? I normally have to go to the toilet at least once(you mentioned minimal fluid restrictions), And secondly, are you in some sitting position(possibly on side of bed) for canulation before then laying down for the night.

Cheers
David

By Mallika on Monday, 10 August 2009
Re: Home dialysis
Dear Megan

Thank you very much for your e-mail. As I am still very new to hemo I have a lot of adjusting to do. Your e-mail however gives me hope and when I have settled into it, I hope I feel as well as you do.
Thanks once again for your response.

By Megan on Wednesday, 29 July 2009
Re: Home dialysis
Hi Mallika
My Name is Megan and im 36yrs of age. I have been doing home dialysis for just over a year now (my transplanted Kidney failed March last year after 19 years). I must admit it was quite hard at the begining but after getting myself into a routine, which has taken me nearly the whole year to do, I now do dialysis at night time while I sleep, my life is very very normal. Cause I do such frequent days and long hours through the night I don't really have a fluid or diet restriction which was the biggest problem for me when I was going to the hospital 3 times a week. I now dialyse 4 nights a week for around 7/5 hours so am feeling fantasitc. I work two jobs, exercise and have a very very active social life. I am lucky cause I have button holes in my arm for my fistula so I only use blunt needles (I canulate in the same area of my arm every time - the needles just glide in through tunnels) so needling is not a problem either and not scary, I did have to use sharp needles for about 3 weeks without any local to form the button holes, it is hard to get used to but the training you go through us very good and the staff are very very helpful and very very patient. I live on my own so I dont have anybody to help me with anything. I have my machine alarms set very loud so if something does go wrong it will wake me up. As I said I have been home dialsying for over a year and not yet have I had a scare or alarm with my machine, the training is that good. I feel like I have all the freedom with home dialysis, I have been to SA, Perth and I go on weekend away trips all the time. If you go somewhere longer than two days you just organise in that town/place to dialyse while you are there. There are dialysis units all over the world so holidays are NOT out of the question. I wish you luck with everything and I hope you find my story helpful.

By KHA Health Manager on Monday, 27 July 2009
Re: Home dialysis
Hi Malika - thank you for your postings today.
It would be helpful for you to ring the KHIS line 1800 4 KIDNEY (1800 4 543 639). At your request, if you feel comfortable with this support, our Health Manager can arrange for you to speak directly with someone who has experience in home dialysis and has walked the path you are walking now. You will find this a valuable service, as you can speak with your buddy if you have queries and receive a personalised answer in lay language which is simple to understand. We look forward to hearing from you soon. Warm regards from your Web Angel.

By Mallika on Monday, 27 July 2009
Re: Home dialysis
I have been on CAPD for over 4.5 years. There were a number of down sides to it:
1. I had a tube sticking out of my abdomen (exit site)
2. I had to ensure that the exit site was cleaned and a new dressing put on daily
3. I learnt to do my exchanges and ensure that I prevented any contamination
4. My belly was always full and I appeared 6 monthss pregnant all the time
5. My old clothes did not fit - I had to buy new clothes.
6. Had problems with reflux disease and had to ensure that I did not eat big meals.
7. There was always a risk of peritonitis and hernia.
In spite of all of the above, I felt a sense of freedom. I could eat and drink what I wanted. We went on holidays. We went on day trips (booked a local hospital to do an exchange). I continued with my work and went to the gym regularly.
Unfrotunately, it all came to a crashing halt a month ago when I had to move to Hemo due to a major hernia repair. My abdomen can no longer take the weight of the peritoneal fluid.
I am finding it hard to accept Hemo - due to lack of control of dialysis, severe fluid and dietary restrictions.

I do not know whether I am ready for home dialysis.


By Louise Roundel on Sunday, 10 May 2009
Re: Home dialysis
I would like to see the NX Stage One portable dialysis machine come into use in Australia. Not only does it allow home dialysis, you can travel with it! I chat with friends on Amerrican kidney disease forums and those who have it say it has changed their lives. I am very jealous! :( I am sure that the restrictions on travel are a source of frustration and even depression for us on dialysis. Better mental health helps with better overall health outcomes.

By Jane Armstrong -NSW Health Services Manager on Friday, 13 March 2009
Re: Home dialysis
N - enquiry - electricity costs.
Yes, 444 pounds per quarter does sound a lot for your electricity bill for dialysis purposes. I would suggest you contact the dialysis technician or nurses from the renal unit where you are being treated to enquire about approximate electricity consumption used by the machine. When you know this then you can work out the appproximate proportion of your bill which would be attributed to dialysis. If then your bill for your normal household use is excessive to what it normally is then I would contact the electricity company to discuss. Here in some states of Australia, dialysis patients are eligible for partial electricity subsidies for home dialysis. You should enquire with your renal unit in the UK to enquire if patients there are entitled to similar subsidies. I hope this information helps. Jane

By n on Wednesday, 11 March 2009
peritoneal dialysis
I know this seems an unusual question, but, does anyone know, or know where I can find out, just what are the ( roughly) electric charges for the overnight 9 hour machine running, and also, the machine is keeping the dialysis warm throughout the day, what are the costs please ? just got a £444.00 plus. bill, for the November to February quarter 2009 ( UK) and this is frightening !

thanks to anyone who can help !


By Jane Armstrong, Health Services Manager on Friday, 19 December 2008
Re: Home dialysis
Re: Home dialysis. Hi Jodi - the type of dialysis you are talking about is called ‘Peritoneal Dialysis’. This can be performed either manually or via a machine overnight. Many people of this gentleman’s age group can manage perfectly well with this form of treatment but it really does depend on the individual person as to how much assistance (if any) they may require. This should be discussed with the patient’s kidney specialist and the specialist nursing staff that will be conducting the home training. Two fact sheets from the Kidney Health Australia website which are in the patient information/health fact sheets link, that I recommend you read are ‘Peritoneal Dialysis’ and, if your friend is thinking about not having treatment ‘Choosing Whether to Have Treatment’. Other fact sheets which may be of interest are ‘Chronic Kidney Disease’, ‘Make the Most of Your Doctors Appointment’ and ‘Heart Disease and Chronic Kidney Disease’. If you have any further queries or would like to speak to a Health Service Manager please feel free to call the Kidney Health Information Service on 1800 4 KIDNEY (543 639).





By jodie on Wednesday, 17 December 2008
Re: Home dialysis
i have some questions, i am looking after an 82 year old gentlemen, friend of the family, he has 11 percent kidney function, he has been offered home dialysis, the one using the bag, he has also had a haeart attack a few years ago and has high blood pressure, and a tumor on his pituartry gland, i am wondering if he should go ahead with dialysis, i understand i can't make the descision for him, but i wonder if it will really help him, he thinks he is going to manage on his own, can anyone give me some advice, i am expecting a baby soon and i am wondering if i am going to beable to take care of him. he has no family and i would only consider putting him in a home as a very last resort. sometimes i don't think he really understands how unwell he really is. i just need some advice

By Mitra Burns on Monday, 17 November 2008
Re: Home dialysis
Hi,
I was told on Thursday that I have 30% kidney function left and I am only 26 years old. I was told that I will eventually need dialysis becuase my kidney ( I have one) is scared and there is nothing that can be done about it. I am really scared and not sure how it effects your life. reading all the comments it looks hard at first but then gets better.
I have some questions
1. if you are doing home dialysis, do you have to have the tube or can you do it via needle?
2. do you get to choose the tube or needle or it just depends on how bad you are?
3. do you always get the option to do Transplant or do you have to get really sick?
4. would your parents always be suitalbe for Transplant?
5. why some people are having twice a week dialysis and some almost daily?

if anyone knows this asnwer it would be really great.
Thanks
Mitra

By Megan Boaz on Tuesday, 11 November 2008
Re: Home dialysis
Hi Lavanya, my name is Megan and I am 35 years of age. I actually had a Kidney transplant when I was 15 from my father but about 2 years ago I got a bug in my system and went down hill from there. My Renal Specialists were fantastic and tried everything they could to save the kidney but sadly I started Dialysis in March this year and had the transplanted kidney removed in July this year. It is a very very different lifestyle to get used to and if you are going to a hospital to dialyse it can take a lot out of your social and work life. I decided in April that I would like to go to home dialysis. I finished my 6 week course in July which they are so patient with you and will keep going over everything until you have mastered it and have been home dialysing since. I live on my own so I dont have anybody to help me, so you can do it on your own. It is very very hard at first and i didnt think that I would never see any light at the end of any tunnel, but then I decided I need to rule dialysis not it rule me. I dialyse every second day for just under 6 hours in the evening, am starting to learn to do it at night time while I sleep. I am working full time (actually I have two jobs) and I have started back at the gym and my social life is back to how it used to be. I still have days where I just cant handle the thought of getting back on the machine but once I am off and feel very very good I realise its my only choice so I deal with it. By doing more days and more hours this pretty much allows me to eat and drink what ever I like which is the main reason I went to home dialysis. Now I have a routine with my machine its really just another thing I do. I would highly recommend going home dialysis especially if you are young and fit.

By Lavanya on Saturday, 8 November 2008
Re: Home dialysis
Hi everyone,
My name's Lavanya, and I'm a 30 year old woman, who was diagnosed with FSGN, a very aggressive form of kidney failure last year. All my life I"ve been healthy, but now I've been on haemodialysis for 4 months, at Concord Hospital. It's been a very soulsearching, learning curve, for me, as I've been through the ups and downs, of emotional hell, but feel it was a blessing in disguise for me, as I'm still alive. There are days, where constant vomiting, headaches and backaches, make me lose the zest for life. The team still hasn't used my fistula, and I'm using a vascath, which makes wearing feminine clothes and going for swims, unlikely.

I'm waiting for home training at RPA, and still considering the viability of doing it at home. Either way, I've taken a year off work, and need to stabilize before I work my way up in life again.

My dad's a doctor, but that doesn't mean, home training would be easy...having the care of nurses and experienced medicos, just makes the world of a difference. I feel my parents, would stress out constantly, and me being the positive spirit, I will break down in the midst of negative emotions.

Does anybody share these sentiments? I want to get back to work full time, but does that mean doing haemodialysis overnight, will make it easier. The team at RPA reckons doing it 4 times a week, for longer hours, will make you feel better. I have heard otherwise.

Furthermore, my renal specialist, is pressing for a transplant asap, as I've done all my pre-transplant workup

By Teresa Taylor on Tuesday, 22 July 2008
Re: Home dialysis
Hi John
We echo Melissa's comments. When starting any form of dialysis there is an adjustment time. Together you and your hospital staff have to work out the optimum program of treatment for you. Some people start on dialysis with only a few issues where others it can take some time to find the right combination, especially when there are other complications that need be thought of. Eventually you will find a combination/program that works best for you and that you can bed down. Dialysis treatments may also need to go through changes now and then in regards to your test results.
It is great to hear that you have a good relationship with your hospital staff, as they are the ones that will be the most help in finding your optimal program.
Best wishes - Shelley Harwood - WA Health Manager

By Melissa Darnley on Tuesday, 22 July 2008
Re: Home dialysis
Hi John
Don't worry, some people take forever to adjust LOL I have been doing haemo at home for 3 years now and I am still not settled! Some folk seem to breeze through training and adjusting to flying solo (on PD or haemo) others never fully adjust. I reckon it took me over a year to feel confident with my machine and needling and I still get uneasy and stuff up!
My best nights are when I have done a lot of exercise and my brain in ready to relax.
Good luck with it
Cheers
Melissa
http://au.groups.yahoo.com/group/Australian_Dialysis_Buddies/

By John Daley Re: pd night machine fresenius on Monday, 21 July 2008
Re: Home dialysis
Hi all, I have been on home dialysis for approx 6 months now and have been plagued with a variety of issues ranging from the program to constipation, dehydration and a constant changing of program regarding fluid strengths and number of changes.
In short i have not found it easy and I was wondering how long it takes to get things sorted as I am finding it very frustrating.
I also have other complications with heart and lungs, as well as sleep apnea and of course renal failure.
It seems that just about every month there is some form of glitch and or problem to deal with. Hospital staff have been great I just dont seem to be able to get things right and yet I am in my late 40s and understand the dynamics and principles of the treatments.
Is it me or merely a learning curve that takes time to bed down?

By Carolyn Dunn on Monday, 30 June 2008
Re: Home dialysis
Hi to all

I have just moved from doing bags to the machine overnight - using the Baxter machine. I am having a few troubles adjusting to being hooked up to a machine but am finding it a bit easier than the bags in that i don't have to rush home all the time and I don't have a big belly all day long. The first night I was a bit scared to unhook to go to the toilet (I am still weeing), so had to wait for my hubby to wake up and get me a bucket. It seems to be going ok though.

By Kidney Health Australia - Health Services Manager on Friday, 23 May 2008
Re: Home dialysis
Hi Sanje,
Thankyou for your enquiry in relation to Home Dialysis. Kidney Health Australia have a fact sheet on Home dialysis which can be found at: www.kidney.org.au/ForPatients/HealthFactSheets/tabid/609/Default.aspx. It is important that you speak with the renal unit at the hospital where your dad recieves his care and discuss this option with them. There is no cost for the dialysis machine itself, this can be supplied to your dad. There will however be alterations to your house for electricity and plumbing that will be required and the renal unit can discuss these costs with you. If you require any further information, please do not hesitate to contact us on 1800 682 531.

By Noelene Lawrence on Friday, 23 May 2008
Re: Home dialysis/peritoneal
i have been on peritoneal dialysis using the cycler machine for a couple of months now. It is so easy to have the machine going whilst you sleep, you are free to work or indulge in other activities during the day.
There is always a down side to everything, and the worst thing for me for getting used to having a plastic tube coming out of my stomach for the rest of my life!! It is also a nuisance and time consuming changing the dressing every time you shower, but when you consider the day is yours to do what you want, it is only a very small inconvenience. I am now registering for the transplant programme, but have a few concerns about the rejection drugs and their side effects. Can anyone help with this.

By Deborah on Friday, 23 May 2008
Re: Home dialysis
Hi, I have been on home dialysis for 2 years and though I find more freedom I aso feel isolated from the world at times and very lonely compared to in hospital treatment. Is there anyone else that feels the same.
cheers

By Sanje Warna on Friday, 23 May 2008
Re: Home dialysis
Dear All,
My Father has recently being advised to undergo dialysis treatment. I want to find out more about Home dialisis, How to buy a dialysis unit and how much it is going to cost. If any one have information please post it. Thanking you in advance and wish you all good health.

By Toni Wells on Friday, 23 May 2008
Carolyn's blog
G'day Carolyn. I am not far from needing dialysis and thinking it will be PD if I have enough room, as my kidneys are a bit large.
It was good to read that you are coping okay, particularly with a business to run and two small children, and not much help. I am 100kms from town but have a supportive hubby too and no-one to care for but us two, so your letter gives me confidence that I can manage. I also detest the thought of a catheter and a bloated belly during the day - I am only 53kgs - but have decided health has to be more important than vanity.
All the best for your 40th birthday. I hope you stay really well for it and have a marvellous time.

By ridge_daughter on Wednesday, 21 May 2008
Re: Home dialysis
My father just got his transplant on halloween this last year. he was on home dialysis for the last 2 years. he started becoming really depressed toward the end. i didnt think he was going to make it. it helps being at home but it doesnt help the psychological issues that complicate all treatments. i thank god the call came in time for my father but even though he was at home truly doesnt make reality any easier. he is lucky that he got bumped up on the list because the match was so good. i think maybe people passed it up beacause it was from a suicide. the way i see it is that if someones life was a mess and couldnt be salvaged, maybe their life wasnt in vain....because my dad volunteers at the local community center teaching karate and other things. he touches others lives....so he deserves to continuing doing so. i hope to meet the donors family so they can know that their gift keeps helping others.

By Carolyn on Wednesday, 21 May 2008
Re: Home dialysis
I have now been dialysing for about 6 weeks - CAPD. I am finding it time consuming, given I have 2 little children, work part-time and also manage a guest house. However the benefits outweigh the bad stuff. I was due to have an operation to get a fistula in last year, but when I went in for my pre-op check, they had me down for a tenkoff catheter (for the PD) instead. No-one discussed this with me so this resulted in much angst and tears, and although I was planning on PD, the fact that no-one bothered to discuss this with me before hand was devastating. I wasn't prepared at that stage for the disfiguration a catheter causes and it took me some time to come to grips with it. Lucky I have a supportive husband. The PD itself is going ok and soon I will be going onto APD overnight which will be better for my family (I hope). My only thing is that, because I am youngish (nearly 40) and a capable person, I am left to my own a lot. In six weeks I have had 1 home visit by the nurse and no other contact. This with only 2 demonstrations of how to do the bags.
I have been living with the thought of dialysis for over 10 years and was extremely frightened of it. Now that it is here, I am no longer frightened of the actual dialysis but of my long term future given I don't seem to be a transplant candidate. I am planning a 40th birthday party because I know I will be well for that.
Cheers to all with kidney disease - unfortunately we are not alone.

By Nicky on Monday, 12 May 2008
Re: Home dialysis
I have been on home HD since 1983 and I have recently moved interstate and am waiting to go to training AGAIN - I am now going to hospital for dialysis. Until now i have never realised how much time dialysis takes up especially when u don't have control over it - you are at the mercy of the unit.

I work fulltime as a social worker and i leave work on tues and thurs early and rush to the hospital and i rush home - it is insane. I would recommend all of those able to go home to do so. It is so easly to fall into the "sick role" when u are at the hospital a third of your life and you completely lose any normality that could be had.

I have travelled, moved around, worked fulltime since leaving school, completed an apprenticeship, gone to uni and i really don't think i could have done this if i had been going to the hospital for the past 25 years.

I think we are lucky to be able to have this option and the assistance that we get from the govt. I am now jumping up and down waiting to get back to training on a new machine so i can get back to normal.!!!

I am a great advocate of home HD and i will shouts its praises to anyone who will listen hahahahahhaha
GO HOME HD!!!!!!!!

Good luck everyone - Nicky

By Michael Jiear on Monday, 28 April 2008
Re: Home dialysis
Hi Phil,

I have been on Home HD for the past 16 months, and trained at The Sydney Dialysis Centre in Darling Point Road, Darling Point. Its parent hospital is RNSH. Great team of nursing staff and the techs are terrific. Training can take up to 8 weeks, depending on the time it takes for the patient to become independent and confident. Home HD allows you to continue working and also allows you to spend time with the family.

By Toni Wells on Thursday, 24 April 2008
Re: Failing kidneys
G'day. I am looking down the barrel of dialysis and doing some research on line. Found all these 'blogs' so interesting and the one from Darren, saying he found PD overwhelming at first but quickly became an old hand, is very reassuring. I have known dialysis was in my future since early adulthood and feel lucky to have avoided it this long. I will no doubt be keeping in touch.

By Phil Johnston on Sunday, 20 April 2008
Re: Home dialysis
Can anyone give me an idea of the best hospitals / units to go with in the Sydney area and in Victoria? I am home trained and using a Fresenuus 4008 B machine. Would like a unit that allows me to get myself on and will give me at least 4 1/2 hours (prefer 5).

By Ros on Sunday, 20 April 2008
Re: Home dialysis
Hi Jules, it will be easier for you to do at home, with a 5 year child. Also you don't need to restrict your diet as much.
Well I hope this has helped some of you and I wish you all good luck., and happy holidays

By Melissa Darnley on Tuesday, 1 April 2008
Re: Home dialysis
Hi Larry
Congratulations on your decision to try home dialysis. It can be a very steep learning curve but I found, especially using buttonholing that most obstacles can be overcome and the long term health benefits are obvious.

As for the sad situation of trying to get some holiday dialysis in NSW, that is another matter. I live on the North Coast of NSW and hear of so many peoples frustrations and it really isn't fair. Particularly when you think of all the money we are saving them by doing dialysis at home, but getting a break away is very difficult!

Have you tried Tweed Heads Public Hospital Renal Unit?This is extremely well run and they will do all they can to accommodate you. Lovely people! Failing that there is John Flynn Private Hospital just over the border at Qld also very well run and as it is a Private facility they often can fit you in.

All the best.
Mel ( Australian_Dialysis_Buddies)

By Larry Green on Monday, 24 March 2008
Re: Home dialysis
I have just completed 3 months of training away from my home town for home dialysis. Fortunately there was a machine set up in our local hospital for a previous patient who had a transplant, before it was commissioned. I have been "home" (at the hospital) for a month and I am very happy with the arrangements.
I have PKD (hereditary - from Mum, and our daughter has it). My mother is 82 and used PD for 3.5 years until it was no longer effective. She now dialyses by haemo and is much improved. She and my sister tried very hard to convince me to have PD but I am very happy my doctor explained the problems and I went the other way.
I am at the point of inserting the catheters without local. Throughout the training every new step that I could confidenlty do myself gave us (my wife also did some training as my carer) a great boost. I used dull needles for some time before I began a couple of new buttonhole sites but found they healed up too quickly to use them alternately. I now use only two entry points but am comforted by the knowledge that I can use a different site if needed.
During the training I was assured that if we wanted to have a short holiday arrangements could be made to dialyse at a hospital convenient for me. Well that is NOT true if I want to holiday anywhere in the North Coast area of NSW. I gave them 3.5 months notice but after asking a few questions find that the health service there is in such a state as it being almost impossible to be catered for. My only hope to have the freedom to have a holiday and visit some family members is to be fortunate to have a transplant so I must wait and only be able to be away from home for 2 days at any one time.
I am writing to the various health ministers involved to make them aware of the hopelessness of the situation.
Thanks for listening (reading). All your blogs have been very interesting.

By Piper on Sunday, 9 March 2008
Re: Home dialysis
I have recently switched over to home dialysis, but used to dialyse in centre at a private hospital for quite a number of years.

I am enjoying the freedom of dialysing at home, but I didn't realise how much I relied on the nurses at my old hospital, for support. I guess because I saw them so often, I took for granted all of the constant support that they had given me.

Now I feel on my own a bit. Not that I am putting down the nursing staff who look after me now, I just don't see anyone.

The other thing that I really don't like is the fact that to do home haemo, I can only do it through a public hospital here in Qld. This means I can't see my own private Specialist, only one of the doctors at the hosptial.

These doctor's all seem fine, it's just that I never get to see my allocated doctor, and therefore I don't get any continuity in terms of my heath care.

This has recently caused a small problem to turn into a big one because no-one seemed concerned enought to do anything about it. I'm now questioning my decision to go with the home haemo. I know if I'd been in-centre and seeing my previous specialist, I would have had access to him as soon as the symptoms started. But because of the public health system, the symptoms dragged on and on for months until I became very ill.

I'm not sure what to do, whether I should hang in there, or go back in-centre. I guess this last episode has knocked my confidence in the whole public health system, as far as home dialysis is concerned.

Anyone else have similar problems?

By Jules on Sunday, 24 February 2008
Re: Home dialysis
Hemo.

I am about to start diaylsis and i am 25, i have a 5 year old daughter who is my life. Was anyone else so scared of the future, of how long you can cope having your life style turned up side down. I have reflux and have known about it for 10 or so years now but thought the day of disylsis was years away. Not in my 20's. I have always been so positive about it all, and always thought that I was lucky that it was a kidney problem to have since there is always diaylsis. But all I think and stress now is about the uncertainty of the future.
What was so of the ways that you all got through this stage?

By Jules on Sunday, 24 February 2008
Re: Home dialysis
Hemo.

I am about to start diaylsis and i am 25, i have a 5 year old daughter who is my life. Was anyone else so scared of the future, of how long you can cope having your life style turned up side down. I have reflux and have known about it for 10 or so years now but thought the day of disylsis was years away. Not in my 20's. I have always been so positive about it all, and always thought that I was lucky that it was a kidney problem to have since there is always diaylsis. But all I think and stress now is about the uncertainty of the future.
What was so of the ways that you all got through this stage?

By paul on Monday, 18 February 2008
Re: Home dialysis
hi... im paul.. 36 yrs.. and a home dialysis patient in sydney... i get pretty bad headaches when on dialysis and they continue for days... doctors dont seem to know whats going on... my blood pressure is really high and wont go down.. any suggestions?

Dear Paul,
In reference to your query, you should seek a special early (urgent) appointment with your nephrologist to address this issue of bad headaches. If you are not satisfied with the information given by your doctor, you can seek a second opinion, which can either be arranged by asking your first nephrologist, or if you are not comfortable doing this, you can always ask your GP to facilitate this.
Thank you - Wayne Green - KHIS Infoline 1800 682 531

By Robyn Kay on Thursday, 10 January 2008
Haemodialysis and Insomnia
My father has been on injections and tablets for kidney failure. His worst problem is insomnia--he cannot sleep at all and sleeping tablets make him really ill the next day. Is there anyone else who has come across this severe insomnia which relates to kidney failure--and is there any solution?

HELPLINE REPLY - SLEEP HYGIENE
Extract from Chapter 12 (Getting the most out of life) from KHA's Living with Kidney Failure 7th edition

People suffering many medical conditions experience difficulty sleeping, which if continued for long periods is referred to as insomnia. Insomnia can cause people to experience extreme tiredness, reduced energy, poor concentration and memory and alterations to their mood. It can cause depression in some people.

While sleeping pills and medication may assist some people, it can contribute to feelings of lethargy and headaches in others, which your father may be experiencing. In these cases some common sense suggestions to improve sleep habits can be effective in eliminating the insomnia. These suggestions include;

* Trying not to sleep too much during the day, this can make falling asleep at night difficult.
* If you can’t sleep after 15-20 of getting into bed, get up and do something else. Like listening to music until you start to feel weary.
* Before going to bed, try to wind down by either having a bath/shower, read a book or listen to some relaxing music.
* Establish a sleeping routine where you go to bed at the same time each night and get up the same time each day
* Avoid eating a big meal, or having tea, coffee or other caffeine drinks before bed.
* Be physically active during the day. Try 30 minutes of regular exercise, like walking or swimming, which also help you relax.
* Make your bed the sleeping place, do not watch TV or read in bed.

By Ros Adcock on Thursday, 3 January 2008
Re: Haemodialysis
TO TINA, re your dialysis water killing the garden.
There are 2 water outlets, one from the dialysis machine and one from the RO. The water from the machine must be put down the drain, ONLY collect the water from the RO. Our garden is well watered from the water collected from the RO. My husband has put in tanks to collect it all, and not only do we use it on our garden, but it also goes through the washing machine and toilets. When the machine and the RO are due for a chemical clean we also put this down the drain. Why not talk to your Renal Techniciian for advice about recycling your water. Good luck with it and let me know how its going through this blog.

Can't wait until the portable machines get here, but the dialysis machine companies may not like the new competion.
Good luck to you all and have a great year.

By Melissa Darnley on Monday, 17 December 2007
Re: Haemodialysis
Hi Steve
Couldn’t agree with you more about lack of support for home patients and the time it all takes to get it all organised. Let’s hope more people start bogging on this site so we can share our experiences. You really do feel like you are virtually on your own whereas in centre patients have nurses and nephrologists on tap. I get a lot of support from an American Haemo message board on www.homedialysis.org

I have learnt heaps from other home patients over there, but their experiences are different to ours. They seem to know so much more and have a lot of back up support (they are all changing over to small portable machines which aren’t even close to coming to Oz).

Stay in touch - Cheers Melissa

By John Kelly on Monday, 17 December 2007
Re: Haemodialysis
I comments on a few different topics:
Donor Financial Compensation.

I am sorry, I do not agree with financial compensation for organ donation.

Who would pay?

Organ Transplantation.
This is probably a favourite subject of mine and some probably think my views are a little extreme! As a consequence, I shall significantly restrain myself! Should we have an “opt out” rather than an “opt in” system of organ donation, thereby making everyone a donor unless they say otherwise? Then of course, if someone opts out, should they be entitled to receive and organ? I think you can’t be half in and half out or have your cake and eat it too! I am well aware that changes are being made to rules regarding permission to allow the harvesting of organs, however, I also understand nothing is REALLY going to change because relatives can still overrule your wishes! One problem for me is that I cannot see what it has to do with relatives, or anyone else for that matter.

Indigenous Health. My views on this subject are also probably a little extreme! I fail to understand why a separate health system needs to be set up for Indigenous Australians. As far as I am aware there is nothing in the existing system that I am entitled to that an Indigenous member of our society is not.

Early Detection of Kidney Disease. Since the incidence of kidney disease seems to be on the increase, maybe GPs should encourage their patients to have periodic tests for kidney function. Perhaps the general population should also be encouraged to have some tests from time to time.

Other Stuff - I think having a forum for this type of discussion is a fantastic idea. Although the above might appear a bit negative, I am not at all negative about organ donation and kidney health, I just have some strong views about the subject. I have a very close relationship with kidney disease, my wife suffers from polycystic kidneys and until she received a transplant, for some years her life was just one big balancing act, especially with diet and lifestyle. Because of her almost iron discipline, she kept relatively healthy for some years by managing diet. Today things are fine, it is five and half years since the transplant and she looks and acts as healthy as ever. The only problem now is the constant monitoring and all the tablets she has to take!
John Kelly

By Adcock on Monday, 17 December 2007
Re: Haemodialysis
Hi, I have been dialysiing for 10 years now, of those at home and 3 years on nocturnal. I am involved with kidney health on their Consumer Forum. I am also involved with the fully volunteer run support group DATA. (Dialysis and Transplant Association.) This group provides support for Dx.(Dialysis) patients in many ways provide someone to talk to, provide holiday homes, one in Rosebud and one in Yarrowonga. VERY CHEAP RENT. Both hospitals are happy to DX holiday people or you can DX at the house. Both houses have 1 machine each from company.

Let me make coments from some of the questions that I read about, which may or may not be of help.

Tina ...... Dx water killed your garden, probably because the bleach that you use to keep the machine clean, probably also went onto your garden. We have put in a valve, that we send the bleach water down the drain. I love my garden and it is watered by our recycled DX. water no problem. This water is also used in mour washing machine and toilets.

Kathy ....... your Dad,s dizziness. TELL the doctor. For myself when this happens I need to increase my base weight, sometimes I even increase my salt intake, but again talk to the doctor.

Fee ....... Home DX is up to the patient, but a carer is needed, to help put needles in etc. The Austin Hospital has a good education program, so I suggest that you ring their Renal Department and ask if you can attend one of these. It covers things like the different DX, diets, home dx versus unit dx, medications, diets. social worker, and a rep from kidney health as well.

Maria....... All I can say is WOW. 26 years of copiing with renal disease. I feel in awe of you as I complain I have been DX. for "only 10 years". I am lucky that I have good family support.

Sorry this has been such a long message, but I felt compelled to try to help out a few people.

By Carolyn Dunn on Saturday, 10 November 2007
Re: Haemodialysis
Hi Pauline Thanks for your message. I am thinking of doing dialysis overnight. I have to go in to see the Dialysis nurse at the hospital to talk fistulas soon so that we are ready for any eventuality. I am reasonably stable at the moment but the clock is ticking.
Cheers

By Phil Johnston on Saturday, 10 November 2007
Re: Haemodialysis
Who is responsible for home dialysis costs? - Commonwealth, State, Local govt, local community, the user and his/her family?
I am currently moving from 2 years on CAPD to Home haemodialysis.
It is well known that homedialysis provides significant (multiple $1000's) in savings to the State Govt. Those who do manage to go to nocturnal dialysis increase their ability to get more work hours or work that is suited to regular work hours, and thus reduce the need for disability or unemployment payments.
There are also additional costs to the user that may make homedialysis less favourable than the expensive option of in-centre dialysis. These include: adaptation of the home environment to physically incorporate a dialysis machine, storage of consumables, a comfortable workable environment for the user (e.g. flexible bedheads ) .
Wouldn't it be cost effective for State Govt or commonwealth Govt to provide financial rebates or incentives for people who chose to do homedialysis? Even a 10% rebate on the difference in cost would amount to $1000 - 2000 pa.
For example, I wonder if a certain amount of money or interest free loans were provided to those on homedialysis to modify their dwelling so as to make it more suitable for homedialysis and the homelife of the dialysis patient (possibly via a similar mechanism to how aged care community health funding for the elderly and disabled is distributed). I suspect this would increase the uptake of the homedialysis option and increase the quality of life for both the patient and the family and carers of the patient.

I find it interesting that although State Govt are responsible for the costs of health care they do not cover the complete cost of running home dialysis. Whilst the include the cost of installation, equipment, training, consumables, maintenance and medical care cost shifting to local government is occuring. Local govt are under no obligation that I know of to provide the rebates that they currently do...
Excess Water Use: - this is covered by arrangements with local councils.
Excess electricity: a rebate is provided for this?
Excess rubbish disposal: I have recently been given an extra recycle bin by council. I think this was due to the proactive effort of the PA dialsysis clinic.
What do you think?

By Jo Flanagan on Saturday, 10 November 2007
Re: Haemodialysis
Hi Melissa
Sounds like you are having “fun” with Freni!! Believe me, after a while it will be such second nature you will wonder how you managed to make mistakes! Good luck with it all, it sounds like you are doing OK and you are getting a lot of support which is what gets you through.
Best wishes Jo

By Maria Iacono on Saturday, 10 November 2007
Re: Haemodialysis
Hi all renal patients
I have just discovered this site and would like to tell you my story,brief version.
I have been on and off dialysis for about 26 years,had 3 transplants, 2 failed virtually between 2 wks and 3 mths, the third transplant I had for about 6.5 years and have now been on dialysis again for 14 or so years. I tried home dialysis for about 11 years, but found I was getting very depressed and snappy towards my parents who I lived with and still live with my mother. They were a great support to me, but the loneliness was too much for me to cope with.
I also worked part time but was finding I had no real support at work (first job). Went to another job and the support was definately much better, more understanding. I have not been in this job for about 20 years now and it has its moments, I still work 2 days a week and dialyse mon, wed, fri. I was asked by my doctor to have dialysis at home again, but I could not cope any longer. Since I have been at in-centre, I have felt more alive, seeing and chatting with other people, nurses etc. For me it seems the best solution. I don’t think I will ever do home dialysis again. I always get very angry when the media refer to dialysis patients waiting for transplants only need to wait 3-4 years - they don’t know what they are talking about - rubbish - I have been waiting for 14 years.
I actually feel reasonably healthy, although I do get tired a lot. But I keep myself busy doing things: I go to work 2 days a week, have several hobbies that occupies my time. Some of my friends even say to me that they are amazed at how many things I can achieve in the time frame that I have.
I have gone on holidays at least once or twice a year. I am a member of the Dialysis Escape Line Pty Ltd, which organises holidays for patients, and sends out newsletters during year, including outings they will be having for the following year and other articles of interest as well.
Anyway thats my brief history.
Maria

By Jo Flanagan on Saturday, 10 November 2007
Re: Haemodialysis
Hi Melissa
Glad to hear you are progressing well and that you are starting to get the knack of it. The first couple of days are always the worst as you have discovered. Good luck with the nocturnal dialysis - hope you are able to do it. My advice, ear plugs as the machine is quite noisy.
Good luck!- Jo

By Steve Burgess on Saturday, 10 November 2007
Re: Haemodialysis
Hey there Melissa,

Thanks for the reply. It’s always nice to chat with people in the same boat in the same creek with what seems like no paddles sometimes. Anyway I had a huge whinge with the head of renal services at St Vincents some two weeks ago about the lack of support and help in the home environment. They may be listening as my home nurse rang and informed me they are going to start to send out questionnaires to see how home patients are going and how the service could be improved. In the mean time they have only offered to pick up my blood tests from wherever I may be. So it’s a start. I read your other blogs about the portable machines and checked them out on the web, wow I want one of those, but won’t hold my breath. I would be interested in seeing how the different hospitals help their patients. I’m currently with St Vincent, and their home patients is still only relatively small say 8 or 10. The only assistance I receive from them is a $250.00 grant each year but by no means covers costs, I pay for my own heparin, iron and aranesp whereas in the unit it’s covered by the hospital.
In meeting with the renal unit I gave them a 7 page letter regarding the lack of assistance and home help and cost of having the machine at home, mine works out to be over $1000 a year. So works out to be quite expensive just so I can still work full time.
You mentioned the American web site which I will check out shortly. Anyway take care hope to hear how much support other Home patients get from their renal units. You never know I may just jump ship.
Keep up the blogging - Steve

By Vicki Pascual on Saturday, 10 November 2007
Re: Haemodialysis
Hi All
I just found out that Gambro Dialysis will now be doing an evening session ie. from 4.30pm till 8.30pm which I thought is a fantastic and ideal for all of us working patients. I do Tuesday, Thursday and Saturday sessions at the Mater hospital. I still work full-time (I believe), I still work while on dialysis. I have my laptop, phone on hand and am managing very well doing so. The Mater hospital’s renal unit is fantastic, staff and doctors are very accommodating to us all in there. I know for a fact that in America, they do have evening dialysis sessions so patients can still have do their full-time job. I believe we patients should raise awareness on kidney disease out there, Kidney Foundations tend to have a low profile out there.
Regards Vicki Pascual

By Tina O'Connell on Saturday, 10 November 2007
Re: Haemodialysis
My first visit to this site and found it very interesting. I think I can answer some questions.

Firstly - Rodney - unless you want to kill your lawn and vegetables I would suggest you don't use the water from your machine unless it is used as a weedkiller! We live in a rural area and water is a problem ( or the lack of it) At first I thought the lawn was okay untill I saw it dying off the next week. I still fret over the bare area and is now considering paving in that area.

Jodie - you are thinking about travelling? Go for it my dear. We do it all the time and have a good time. I know how difficult it is to book dialysis at centres who can often not help you during the times you may need to dialyse there. It is through no fault of theirs but purely due to the high demand for holiday dialysis. My husband has been on dialysis for thirteen years and we started home dialysis in 2005. We have "Matilda"in the house but often transfer her into our caravan which really needed minor alterations and we go on holidays when I can fit it into my work schedule. We are going on a trip around Australia in July of this year and thanks to the wonderfull technicians and Gambro who will supply us with our stock we are all set to go. We are planning to do it over a six month period and all the planning involved was not as complicated as I thought it would be. Even organizing the medication took us all of about twenty minutes as we will have to take a six month supply with us. If you need more info I would be happy to assist if and where I can.

Steve - support for home dialysis can mean different things to different people as we all have different needs depending on our situation. I know that in our case the technical support from our technicians are superior and many a time they have gotten into their vehicles to drive the four hours to replace faulty RO machines etc (sometimes twice a week!!!) I have consequently learnt the ropes and can now fix most of the smaller problems myself. Our suppliers have been very accommodating and I know that we can pick up the phone at any time and have what we need within a reasonable time. Other support as I said may be different for each of us. It is interesting to read about grants etc. but in our case we sail our own boat. In a rural area we learn to cope fairly quickly as it was our choice to dialyse at home. We do belong to support groups such as DATA and transplant organisations and find the internet very helpful.

Sonia - about the renal diet - there was a book printed for patients with renal failure and those on different kinds of renal replacement therapy. Contact Kidney Health Australia and I will bet my bottom dollar that they will be able to advise you. Renal diets are very tricky as there are so many dos and don'ts but once you have the hang of it it becomes second nature and you don't have to think about it. The internet can be very confusing as a lot of the information may be from other countries who have different guidelines. Protein is not as much of a concern as it used to be as they found patients became malnourished if too severely restricted. Potassium and phosphates are more important and tight control is advised. I think the fluid restriction is more of a challenge.

Good luck and good health to those who dialyse as well as their carers.

By kathy lloyd on Saturday, 10 November 2007
Re: Haemodialysis
Hi, My Dad has renal failure and is on haemodialysis,
Lately he has been getting really dizzy and at times throwing up, has anyone else had to deal with this? i thought i might try to change his diet a bit, we are reducing the amount of salt, and other nasties even more but thrying to increase his energy comsumption so that during the day he is not burning off more than he has taken in. i was wondering if anyone could give me some ideas of recipes they have tried or anywhere i could find a really good recipe book specially for people on haemo. Thanks guys! Kathy

By Fee on Saturday, 10 November 2007
Re: Haemodialysis
Hello everyone
This is my first time on this wesite i found it though Google and have taken some time to read all your entries. I myself do not have kidney disease nor am i on dialysis. But my Mother has had renal disease all her life and is moving onto the next phase of dialysis. My folks live in country Victoria (Bairnsdale) and have already been told that there will be no room for her at the Bairnsdale Hospital when she goes on dialysis so they will have to drive to Sale for treatments which is a one hour drive for them each way (if you speed). The specialsist failed to provide her with any other information at all. Nothing not even what dialysis is and how it will effect her. So I've been exploring the net trying to learn as much as i can fast. What has caught my attention is home dialysis - it sounds like a good option and i'm wondering if anyone out their can tell me .......
-
Is it available to anyone?
What does it cost?
Does it increase the risks for the patient?
Can you chose to have it or is that upto the government to make the final decision or your doctor?

There are so many more questions that i have but I dont even know where to start. I know that most people who write into this site are on dialysis themselves so i appreciate you taking the time to answer my mail
I look forwards to your responses and wish all of you the best of hope

Fee

By Dee on Saturday, 10 November 2007
Re: Haemodialysis
Hi all,
Just want to let it out. I'm 24 and in few months I will be donating my kidney to my mother. Everything's compatible so far and I will be doing the third blood test so finger crossed. I do feel scared a little about the operation cause Ive never been hopitalised before but just the thought of my mother in and out hospital from one operation to another I know I'd do just fine. So, I wish you all the best. Have faith and always believe that one day when you least expected someone out there will give you the gift of life.
With lots of hope & wishes -Dee

By surendra sharma on Saturday, 10 November 2007
Re: Haemodialysis
This was my first look at a very intersting site as a patient on PD and trying to opt for haemodialysis.

By Joyce Medres on Tuesday, 24 July 2007
Re: Haemodialysis
Just found this web site by accident. Very interesting to hear about how dialysis in handled in Australia. I live in the US and all of our costs with in-hospital dialysis is covered by Medicare. All the home dialysis supplies are also covered. They are usually delivered right to the patients home on a set schedule. I have been on in-hospital dialysis for 10 months now. So far, have not had problems with dialysis but have had to have a fistula put in, which failed, and a graft which is working fine now. Still have my catheter in - the doctors are having a problem getting it out - may have to be surgically removed. I have good days and bad days - usually more good than bad. I am now able to do my yard mowing again - takes me a couple days but I get it done - have to take rest breaks. I am still able to work part-time and enjoy every day I have. My biggest problem is keeping my phosphorus down. Can't seem to find the magic key to this. Does anyone have any recipes they could share? Sure would appreciate it. Good Luck to everyone.

By Ian Gregory on Thursday, 12 July 2007
Re: Haemodialysis
To Jo Flanagan,
I had my first consultation with Dr Trew when I was 22 when I was diagnosed with 10% damage to my Kidneys through a form of Nephritis and I have been fortunate to have my disease stabilised with medication and now I see him around every 3 months. I am now 53 and he is just a wonderful doctor and has always been there for any assistance that I have needed - you are right he is a wonderful Kidney specialist.

By Bev McPherson on Friday, 2 March 2007
Re: Haemodialysis
My husband is doing nocturnal haemodialysis at home. Much better than doing it during the day. Would really like to hear how close we are to getting a portable machine, so that we can enjoy a holiday for more than 3 days.

By Chris Ottomar on Thursday, 14 December 2006
Re: Haemodialysis

Hi Sonia,
I too have recently bgun dialysis and through some research on the net came across this link for for a cook book for dialysis patient. The book is fairly reasonably priced, the shipping however is fairly steep to Australia.
http://www.culinarykidneycooks.com/cookbook.htm
Cheers
Chris Ottomar


By Sonia Burgess on Friday, 1 December 2006
Re: Haemodialysis

Hi All,
I am a pharmacist doing some research for a 70 yo. customer of ours. Well actually for his wife. He has just started dialysis three weeks ago and she is extremely overwhelmed with caring for him. In particular at the moment she has questions on diet. She has asked the dietician in the dialysis unit twice for help but I guess the demand is greater than time permits at the moment. I rang the dialysis unit and in our are we have no social worker to attend to an overwhelmed carer and pointing her in the right direction to find information and support. Can anyone put me onto some good references. She has printouts on diet etc. but wants more detailed info. on how much protein etc. has to be restricted. I really think she needs some social support too. She doesn’t access computers. Any help would be appreciated.
Cheers Sonia Burgess B.Pharm.Grad.Dip.Pharm.M.P.C


By Melissa Darnley on Friday, 13 October 2006
Re: Haemodialysis

Some of you might be interested in an Aussie dialysis forum that Pauline has created. It is growing daily and provides online support for carers and dialysers with people posting daily Australia wide. Well done Pauline!
http://au.groups.yahoo.com/group/Australian_Dialysis_Buddies/


By Jennifer on Saturday, 30 September 2006
Re: Haemodialysis

Hi All
Just wanted to say how brave all you home dialysers are! I was offered home dialysis but just couldn’t come at it - bad fistula, heaps of blowouts, poor pressures, etc. Couldn’t stand the thought of not having nurses on tap, plus I had excellent nurses here in Adelaide. Anyway, you’re all incredibly courageous.
For all of you waiting on the transplant list, I wish you all the luck in the world. My call came on 12/4/04, after 3.5 years, and it was the most exciting, terrifying moment of my life!
Best wishes to all dialysers, wherever you are!


By Rodney mitchell on Thursday, 14 September 2006
Re: Haemodialysis
hi everyone, just looked up this site and find it very interesting. ive been doing home dialysis since july 2006 having trained at sydney dialysis centre. the staff there were great and guided me through the first couple weeks. my fistvual is no good and they wanted me to have more surgery to bring the vein uphigher.one of the staff told me about button holing.this save the day . no more surgery , no sharpe needles and no anasetic . straight in the same two holes each time.

By Rodney mitchell on Thursday, 14 September 2006
Re: Haemodialysis
i ran out of room in my previous comment . i wanted to ask if anyone is using the water from their machine for gardens lawns or vegie patch. it seems such a waste to let 60L and hour go down the drain.

By jodie absolum on Saturday, 5 August 2006
Re: Haemodialysis
very interesting site . my partner is an aussie and on home dialysis in christchurch nz now for two years ,there are all sorts of help available to us as home users all installation was done with no cost to us, electricity is covered by a special disability benefit, and the service runs very smoothly , there is however definatly a toll on families in the emotional department especially my partner dialysis for 7hours a time 4 days a week and after two years is really reaping the rewards. i feel that the support that is needed to do this well however could be greatly improved and the carers needs and training have to be almost better than that given to the patient , as in the beginning most patients are not exactly well and are very forgetful, so when a needle blows or a machine is alarming it can be super stressful for the carer who has to try to sort out the problem , is the focus better set up for carers over there I wonder? just a word on another subjec, over in the christchurch unit they currently have for sale a mobile campervan that has been fitted out with a dialysis machine. we have rented this van to go on holiday and it was a real treat lucky for us they have just got a newer version completed so the older one is for sale. having come from Perth I can see the enourmous benefits of such a thing for australia and just wanted to get the idea out to you all, it just needs a powered camp site to operate it and the unit here rent it out at a very cheap rate to patients 25 per day. hope this can perhaps be food for thought.

By Kylie on Saturday, 1 July 2006
Re: Haemodialysis

Hey Rob,
I understand where your coming from. i had to have PD dialysis for a couple of months at home and then i piked up a chest cough from the liquid sitting on my lungs. i was admitted to hospital to help treat the chest cough with IV drugs. I was sent home later that week and my machine kept playing up all night long every night my machine would alarm and i would not get any sleep.
I was then admitted back to hospital to have my PD tube removed.
While i was in hospital they put a fistula in my left arm and that was what i was using fro dialyis. At first is was scary having two needles in my arm and not having to move my arm for 4 hours.
I had dialysis for a total of 10 months and finally after i was over dialysis i had a kidney transplant on November 24th 2005.
It has been 7 months since my transplant and i now have lots of engery and lots of time to hang out with my friends which is cool.


By helen on Saturday, 1 July 2006
Re: Haemodialysis
hello all, it has been so interesting to read all your comments,my husband has polycystic kidney’s, he has known about this for over 8 year’s now, we have just started training for home dialysis, we have just passed our first week, i have done one set up of the machine so far, with the help of our lovely nurse. next week the training will get more in depth and eventually i will have to learn how to needle, this part scares me so much, i would hate to get the wrong spot,but i dont have a choice this is now a part of our live’s. our daughter is great, she has been with us when we were in the first week of training, and has done really well. i know we have only just started our journey and we have a long road ahead of us.but i’m sure we will get through it. good luck to every one.

By Rob Argue on Friday, 12 May 2006
Re: Haemodialysis
I’m 53 yo male; been on PD for 4 1/2 years with a couple of bouts on Haemo as well but after 6 bouts of peritonitis in 10 months it was decided that the PD tube had to go so now it’s Haemo for me, I went to the home dialysis place at Edgecliff for an interview to see if I’m suited (I have no doubt I am) for home treatment which will be a lot better than fitting in at the hospital but all the home stuff is on hold as the fistula just isn’t coming up to standard for use; likely need another one done ASAP as I’ve had to rely on a vas cath since Feb… I keep hearing about Vas cath problems am I worrying too much?

By Melissa Darnley on Friday, 28 April 2006
Re: Haemodialysis

Hi Pauline,
That sounds absolutely ridiculous. I am going to try and find out more straight away! In th US they seem to have to mix the bicarb themselves into a big container. Yuk, I hope our system doesn’t start being as bad as it seems over there. Their Medicare looks hopeless.


By Pauline on Tuesday, 25 April 2006
Re: Haemodialysis
Hi Everyone, My husband is doing Nocturnal dialysis at home.
I am just writing to you all because I have been told by a number of people that dialysis patients who use a fresenius machine are going to have to change from the bi-bags that you are currently using because fresenius went to court with gambro and lost. Apparently there is a ‘patent’ problem with the bags and now fresenius are going to remove all bi bags from machines and use a new sterile fluid container that needs to be changed every 3 hours… You can imagine how impracticle this is going to be for ALL nocturnal patients. This is apparently going to take place in June this year. I was hoping that by bring this to the attention of you all, then maybe more of us could complain and someone just might actually listen and possible if we could send some form of letter to fresenius, gambro, and who ever else thats needs to hear our crys. This is a massive impact on ‘patient’s who work during the day, and on storing this product…. regards Pauline

By Melissa Darnley on Tuesday, 28 March 2006
Re: Haemodialysis
Hmm will have to check that one Steve!

By Melissa Darnley on Tuesday, 28 March 2006
Re: Haemodialysis
Re financial help from hospitals for home patients. I was offered some help towards accomm whilst training but as I was just under 100km to centre there was no help with transport costs. I didn’t realise in centre patients have their meds covered. Very interesting. We really are a cost saving for them and the govt (even though being sick is costing the govt anyway you look.)
As far as I know there is no grant available at all up here. Will find out more. Thanks
Melissa

By Steve Burgess on Friday, 24 March 2006
Re: Haemodialysis

Hi
Have any other home Haemo Patients been asked by their renal Drs to sign for a new Medicare item 13104. This is a Monthly fee the Dr receives from Medicare which we need to sign for. It apparently Planning and Management of home dialysis.
I was under the impression i managed the majority of my own home dialysis.
Perhaps the Dr’s could lobby the Government to send some money our way to cover the costs of home dialysis.


By Jack H. Rothwell on Saturday, 11 March 2006
Re: Haemodialysis
I recovered from IgA nephropathy. Yes, that irreversible kidney failure affecting my native kidneys did an about face. I spent 4 months on hemodialysis and 5 months on peritoneal dialysis. I was taken off dialysis August 22, 2002, and I have been free of dialysis since then — “Without A Kidney Transplant”.

By Steve Burgess on Thursday, 23 February 2006
Re: Haemodialysis

Hi Thought id share my home dialysis experience with you all.
Some 15 or so months ago when my transplant began to fail, I was told that I would be a perfect candidate for Home dialysis. I wouldn’t’t be restricted to the dialysis unit all the time , could do it while I sleep, still be able to work full time, and still enjoy a quality of life I came to expect. This is all well and good but wasn’t informed of the amount of work involved with dialysis at home.
Home dialysis is a relevantly new program for many hospitals around Australia, and i believe there should be more interaction with patients to the situation they find themselves in and how they are finding the whole experience.
I’m finding a lack of support in the home the hardest thing. If i was unemployed id have all the support i need, but unfortunately I’m a single man who works full time, so not entitled to any.(except water)
If your a single home dialysis patient you will know the amount of work involved with cleaning of the machine setting up putting away medical supplies and the regular trips to the unit dropping of bloods or picking up supplies not delivered to the home.
So I think the policy makers need to take these things into account and help the home patient a lot more than they do at present.
So i eagerly look forward to my next kidney transplant to get this retched machine out of my home and back into the hospital.


By Steve Burgess on Thursday, 23 February 2006
Re: Haemodialysis
Hey Melissa, you asked how much a dialysis session uses, well i use a Gambol AK95, but i would assume they would all use about the same amount. My techs inform me a 7-8 hour treatment including the heat disinfect uses about 1000 lt. So its a huge amount per year, just to keep us ticking along.

By Pauline on Sunday, 22 January 2006
Re: Haemodialysis
Hi, I just went to visit Jamie’s website and I have found that he has passed away on the 1st January this year. I am not sure if you all spoke to him, but I thought I would let you know.

By Melissa Darnley on Sunday, 22 January 2006
Re: Haemodialysis
Anyone else following the new innovations available in the US and UK in home dialysis machines? They are portable, water efficient, cost effective and easy to use and people are raving about them. There is the Allient, Akseys and Nxstage (they all have websites) and I am hoping that we home haemo patients in Australia will soon have access to this technology to make our lives easier.

By Melissa Darnley on Wednesday, 9 November 2005
Re: Haemodialysis

Hi Jo
Still finding nocturnal a big challenge as it is not what you call a restful sleep. Mornings after dialysis I feel very “drained” (literally)! Finding even doing a couple of days work very difficult although feel pretty normal on the non dialysis days. Might up my dry weight a bit more.
So many questions anyone with any anwers would be appreciated…..How do you feel when you come off “Pita”, do you dialysis every second day, have you tried travelling and dialyising at any other centres???
I have been reading the Global dialysis website and some of the amazing travel stories of the (mainly) Americans. Maybe we should start our own travel club!!
Regards to all
Melissa


By Melissa Darnley on Saturday, 15 October 2005
Re: Haemodialysis

Hi again folks!
Well have had Freni home for 2 weeks now. Lock her in the wardrobe so I can feel a bit “normal ” between treatments, but so far have had lttle sleep as I find my pressures are very low as my bed appears to be a bit lower than the chair I was trained in so I am always waiting for it to alarm. I tend to be lying there almost rigid and may have to resort to a sleeping pill. Any ideas? We had a noisy RO but the kind technician found me a quieter one, we have had a few spills, lots of stuff ups, a few needling blows and have thrown away a couple of blood lines with my blood still in them as I was worried about air and once just was in such a rush to get to the loo I forgot all the training on how to recirculate! Hubby is being extremely patient and helpful just hope the marriage survives all the stress (; Think maybe training might be easier in one of thise bigger hospitals where they let you sleep over for a while but learning by trial and error at home sure is faster!


By Sue on Monday, 10 October 2005
Re: Haemodialysis

Hi everyone
Congratulations for taking some control back in your lives! I am a nurse in the renal ward of a major hospital. I have 10 years experience in dialysis and my husband is also on home haemo. He has had kidney failure for 13 years and until July of this year he would not even consider dialysing at home. Unfortunately his health was suffering and he could not get longer hours or more days, so reluctantly he relented. This is the best thing that has happened as I have a new man around the house! He still works so we dialyse around my shifts and his job. I would ask people to consider home training, especially if the have been dialysing in-centre for awhile, because you won’t believe the changes that can happen in your life.


By Melissa Darnley on Sunday, 2 October 2005
Re: Haemodialysis

Hi Jo and everyone
Jo you are right about needing ear plugs and I agree with Darren about feeling dumb trying to work out machines ( right out of the comfort zone ) We bought “Freni” home and I am supposed to go on for a trial 8 hours tomorrow at home for the first time with the fantastic home training nurse coming for a visit while I am hooked up. Thought we would take the bull by the horns and do a relaxed “stress free” run by ourselves last night. Lasted nearly four hours before things started to go haywire with cannulas and pressures. No sleep, lots of strange noises and everything seems too difficult to fix at 1 in the morning. So much for a ’stress free trial” ! So many more questions for nurse tomorrow!


By Darren on Sunday, 25 September 2005
Re: Haemodialysis
Hello to all the dialysis people. I started straight onto PD and I thought I was a bit dumb as I could not initially get the hang of all the equipment. After a few days however I felt as though I had been using the machine forever! You even start to recognise the colour of the fluid in the waste bags - whether it was a good clean-out or not. I suppose for me the worst part was all the storage of equipment and then all the rubbish which resulted daily. The funniest/weirdest moment for me was when I had been woken up at 2am by the machine alarm (for about the fifth time that night) and was getting quite annoyed, when suddenly the phone rang, and yes it was “the call”. I guess I was lucky that I was so tired, otherwise I probably would have gone into shock! Anyway good luck to everyone on dialysis and everyone waiting the long wait. Keep your spirits up as it is your life, which you can make happy or not.

By Pauline on Wednesday, 21 September 2005
Re: Haemodialysis
Hi Melissa, Pleased to hear that you are doing well learning dialysis. My husband is doing nocturnal dialysis at home also. He has been doing home dialysis for over 3 years now. It really is the best option if you can do it.
What type of machine are you training on and taking home? He is using a Fresenius 4008. When he was on dialysis many many years ago because of his transplant, he was using this ancient machine, so this time around we asked for the most modern one.
Dialysis now is much different than it was back then.
The dialysis unit that trained him is at Dame Edith Walker, it belongs to Concord and RPA hospital in Sydney.
If you have any questions that you would like to ask concerning doing dialysis at home, either from your side of the fence, or from the partners side ( that’s mine), please feel free to ask.
Regards Pauline.

By Pauline on Wednesday, 21 September 2005
Re: Haemodialysis

HI Carolyn,
My name is Pauline, my husband Con is on dialysis at home. He has been doing it at home for over 3 years now. He started nocturnal this year and is doing great. Considering he has other medical problems also.
He is on the transplant list, even though the risks are high, I personally am afraid and not sure it is the right option, but that is easy for me to say because I am not the one on dialysis. However, he did have a transplant that lasted 17 years and back then when he had that transplant, the odds were not good either. So, I left the decision up to him.

Are you going to do hemodialysis or PD?
If you have any question you would like to ask, please feel free.

regards Pauline.


By Melissa Darnley on Wednesday, 7 September 2005
Re: Haemodialysis

Well, thought you might like a progress report. I started dialysis over 3 weeks ago and started home training at Ballina hospital straight away. To say it was mind boggling at first would be an understatement, but with the wonderful support of the home training nurses, the miles of “spaghetti” tubing starts to make sense and as Jo said the needles really aren’t that bad, once you get your head around the process. You learn fast once you get a few lovely bruises from the misses!!

I hope to be able to start at home overnight within the next 4 weeks and I feel very fortunate to have had access to Ballina Hospital with their wonderful staff only being an hour from my home. The next closest training unit would be Newcastle, a very long drive indeed! I really can’t speak highly enough of this service. They give you support every inch of the way making each visit a little easier and closer to my goal of getting back to work. I can’t say that I feel any different health wise yet (I never felt bad though) but I am looking forward to feeling great on nocturnal!


By Julie Robertson on Friday, 22 July 2005
Re: Haemodialysis

Hi all and thank you so much for this site: it is great not to feel so alone - when you dialyse at home although it is so convenient and a super option, you can miss the contact with others facing similar challenges.
I would like to learn more about polycystic kidneys from people who have them - particularly issues about how big they may grow and what other problemss they may cause. I have read horror stories about some that grow up to 14 kg - is this true? Can they be just enlarged but not enormous? I am on peritoneal dialysis, 12 hours overnight, working a treat, and on the transplant list but sometimes worry about if they may grow so big they interfere with other things

Thank you
Julie Robertson


By Melissa Darnley on Saturday, 9 July 2005
Re: Haemodialysis
Hi Can anyone tell me how much water would be used each day to perform nocturnal haemo dialysis? Wondering how well this can be managed on tank water.

By Melissa Darnley on Monday, 4 July 2005
Re: Haemodialysis
Hi Jo and everyone
It is so good to have a space to be able to share our thoughts with others who understand. Jo, I really can appreciate what you have said about home dialysis. I have had kidney disease for 13 years and am probably going to have to start dialysis in the next few days . I will have to travel an hour to do the training and want to try nocturnal home haemo as soon as possible and hopefully stiil be able to continue my job as a teacher, even if it will be only part time. The financial costs of having this disease have been significant over the years, not just medication and specialist visits, but the associated medical problems that seem to go with the territory.
The feeling of being alone and isolated in a country area with no real network of supportive, like minded people has been what I have found the most difficult to deal with. It is only now that I am about to commence dialysis that I am finding the supportI needed.
Good luck with your transplant wishes Jo.

By Carolyn Dunn on Monday, 4 July 2005
Re: Haemodialysis

Hi Jo

I read your comment with great interest - I am facing dialysis sometime in the future (near or far, the doctors can’t seem to decide). I have just about made my mind up to have dialysis at home overnight as I want my days as free as possible (I have a 2 1/2 year old son). I am actually quite scared of the prospect, but I figure when I get there I will be able to deal with it (like I have with everything else). Unfortunately I don’t think I will be placed on the transplant list - I have other medical issues that raise the stakes a bit too high.

For those waiting on transplants, I wish you all the very best.

Kind regards,


By Jo Flanagan on Monday, 4 July 2005
Re: Haemodialysis

Dear Melissa and Carolyn

Thanks for your kind messages. I wish you both all the very best of luck with the upcoming changes in your life.

As you said Carolyn, you can deal with it, in fact you will come to love and hate your machine the same way I do. I call him Pita (for Pain in the a@$%) but he really isn’t, he is keeping me going!! I’m sorry you aren’t able to get a transplant but dialysis is still better than the other option! After the first couple of weeks on the machine you won’t know yourself!

I was scared as well when I first had to face the task of doing dialysis and wish I had shares in Kleenex for all the tissues I used crying in the lead up to it, but all of the staff I dealt with really made it easy and they put me in a room with people who were all at different levels so you could see what could be achieved with a bit of training. I could set my machine up in my sleep now (and sometimes think I have!).

Melissa, if you feel you need to “talk” feel free to email me. I am sure the Kidney Health Australia team can pass on my email address if you need it. I know how hard it is not having support around you. Your family and friends I am sure do what they can but they don’t really understand and they are dealing with the problem as well.

All the best

Jo


By Jo Flanagan on Thursday, 30 June 2005
Re: Haemodialysis
When I was told that I was going to need dialysis as a treatment to my end stage renal failure my absolutely wonderful Kidney Specialist, Dr Trew, gave me all the literature and advice I needed to make the right judgement as to what treatment to undertake. Once I was at just under 10% function I started training at the Sydney Dialysis Centre on Home Haemodialysis.

I didn’t start at a hospital and, although I have since dialysed at hospitals, I feel that made a big difference to my outlook. I was taking control of my treatment from day one, I was around qualified and extraodinary staff who made my time there fun and I was meeting other people of all ages and stages going through the same training and realising that it isn’t as daunting as it has to be. I am able to get on my machine when it suits me (and I know a number of people do their dialysis overnight however that has proven a challenge for me) and I am also dialysing for 6 hours rather than the 4 in hospital so I have a better “clean out” and it also means I can have an extra drink or two which anyone on dialysis can attest to is a hard thing to maintain (especially during Summer!).

I am also working part-time 3 days a week and managing to exercise nearly every day and although I have my days my life is pretty good (however I would love that transplant to come through so I can eventually have children, am nearly 33 so feeling that clock ticking!).

The needles, which I thought would be the biggest challenge to get through, were a breeze (well almost anyway) and even though my fistula (gortex) needs to be cleaned out about every 3 months it is a small price to pay for having my life. I can go away on weekends and aren’t bogged down by specific hospital dialysis times so if I want to go on later in the day I can. I would recommend anyone who is thinking of doing home haemo to definitely do it, it has made all the difference to me. You will get over the needle problem, one guy I trained with couldn’t look at them when he was doing it in the hospital but got over it during the training. I understand that not everyone can do this but for those who are considering it, do it!!

 
 
 
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Last updated: Jul 2014.