Hi folks, the above is the title of a presentation I’ve got to put together for a European conference in September. I know what I want to say, but I thought why not ask the professionals:)
So:) What difference does it make for you, all input greatly appreciated:)
Jim
It means having my life back… having control over when I do dialysis and when I don’t. It means being able to partake in my daughter’s school activities, support my husbands career, and have the best life possible, among a million other things. I now have the desire to want to know more. When my care was hospital based, I relied on the nurses and doctors to look out for me… now, I I am my own biggest advocate.
Good luck on your presention!
Kidney_Mom in Canada
It means having a much better medical prognosis.
It means the difference between having a 10% annual mortality rate expected and having a 2% expected mortality rate. It means the difference between frequent hospitalizations for infections and excess fluid and very few hospitalizations (granted I am writing this from a hospital room but I am not here due to under dialysis).
The logistical burden of dialyzing frequently overnight at home is less than any other schedule - but that is just icing on the cake. The medical advantages are so profound that it would be worth while if it was a greater burden, but it does not even require this trade off! It is better for you and it is less of a burden.
For me, it’s a simple matter of life vs. death. Everything else is icing on the cake.
Keep em coming peoples, can I quote them without using your names of course, when I’m at the conference in Europe?
I can’t speak for RIch but my guess is he feels like I do
Quote away! And pass on our web efforts - for me my blog; for Rich NxStageusers.com
I’m not going to argue with a guy that just had a kidney taken out. Quote away and you can use my name.
Hey, Rich, can I use your quote, too? I really like that one. 
[B]Dialysing at Home - What difference does it make?
Understanding your disease and knowing how to manage it at home and best of all no more clinic policies.
However, one area that needs to be solved is (DRA) which is very real and is a threat to long term home dialysis. Currently, frequent dialysis can only slow it a little, not much and worse is that some studies are showing that heparin worsens it. Once the damage is there its not reversible.
Anyway, visit my blog at http://dailyhemo.org and search the archives for videos of the many faces of empowered patients who chose home dialysis.
If your on twitter, follow me at http://twitter.com/dailyhemo
[/B]
[QUOTE=JW77;18101]Hi folks, the above is the title of a presentation I’ve got to put together for a European conference in September. I know what I want to say, but I thought why not ask the professionals:)
So:) What difference does it make for you, all input greatly appreciated:)
Jim[/QUOTE]
Hi Jim
Where to start!
Being in control of your life, not spending endless hours traveling for dialysis, to be stuck in an uncomfortable chair for hours on end at the whim of a ‘sometimes’ grumpy, undereducated, ‘non compliant’ or newly trained nurse, to stare at the wall or listen to some very unwell people in a less than welcoming environment. To be able to control how many hours you want to do to suit your particular day and best of all to be able to dialyse overnight in the comfort of your own bed, waking knowing that you have just had the BEST dialysis available and now have all your waking hours free to make every minute count, be as well as you can be and get on with your life.
Cheers
Mel
And most important of all, is HAVING THE CHOICE. We are so fortunate to be able to choose what, where and how to dialyse. Many countries don’t have any of this.
[QUOTE=JW77;18101]Hi folks, the above is the title of a presentation I’ve got to put together for a European conference in September. I know what I want to say, but I thought why not ask the professionals:)
So:) What difference does it make for you, all input greatly appreciated:)
Jim[/QUOTE]
I would say being able to perform dialysis on your own schedule. Second, being able to stay away from the uncaring, one size fits all dialysis clinic. Third, not have to listen to a bunch of individuals preaching unrealistic, ridiculous platitudes that they themselves do not live by, more “Do as I say, Not as I do” morality. I think when they are working in the dialysis clinic, they need to set the example. I forgot, the rules only apply to certain people, not to them.
To see my patients - many now long-time friends- who are:
… bright of eye … smiling … giving back a good hearted jibe for jibe with their doctor while saying ’ I feel well - do I really need to still come in every 2 months - how about every 4th?’ … having blood tests that are near normal … not having to write endless prescriptions for drugs … seeing a patient who fully understands their disese, its treatment and the role dialysis has in providing that … knowing that I am providing the best dialysis I and my team can - given our local restrictions re equipment range and capability … seeing patients at the front desk with the secretarial team trying to juggle their next appointment time around their work commitments … to know that I have governmental support and funding for a preferrential, home-first, incentivized home haemodialysis (and peritoneal dialysis) program in place, accepted and running smoothly … knowing that I work in a country where all health costs, all drug costs, all dialysis costs, all training costs, all home installations - the kit and caboodle - are provided for my patients free of charge … and, finally, knowing in my heart of hearts that what I began here in Australia, so long ago now, has made some tangible difference, even if it is only for the ~14% of our total dialysis patient population in this wonderful country of ours who haemodialyse at home (though in my own unit it is 27% of our HD’s who are at home). My regret? … that those who live, mainly still in darkness on the other side of the ‘big pond’, still battle in vain for even a shadow of a similar program.
That’s what being at home on haemodialysis means to me - but from the other side of the oak desk!
John Agar
Wow
What a truly refreshing and unique perspective from across that Oak Bridge!
Thanks, Doc, that’s made my day
Cheers
Mel
PS I won’t mention the Oak desk to my Neph, I’m sure his is only pine or maybe Oak look laminex ;0)
PPS Another thought I just had as I am walking the dog watching a few whales do their thing, That if (God forbid and touch wood) my transplant doesn’t last, I know that I would still have the option of doing Nocturnal dialysis again and feeling pretty close to being as well as I do now.
[QUOTE=nocturnaldialysis;18127]To see my patients - many now long-time friends- who are:
… bright of eye … smiling … giving back a good hearted jibe for jibe with their doctor while saying ’ I feel well - do I really need to still come in every 2 months - how about every 4th?’ … having blood tests that are near normal … not having to write endless prescriptions for drugs … seeing a patient who fully understands their disese, its treatment and the role dialysis has in providing that … knowing that I am providing the best dialysis I and my team can - given our local restrictions re equipment range and capability … seeing patients at the front desk with the secretarial team trying to juggle their next appointment time around their work commitments … to know that I have governmental support and funding for a preferrential, home-first, incentivized home haemodialysis (and peritoneal dialysis) program in place, accepted and running smoothly … knowing that I work in a country where all health costs, all drug costs, all dialysis costs, all training costs, all home installations - the kit and caboodle - are provided for my patients free of charge … and, finally, knowing in my heart of hearts that what I began here in Australia, so long ago now, has made some tangible difference, even if it is only for the ~14% of our total dialysis patient population in this wonderful country of ours who haemodialyse at home (though in my own unit it is 27% of our HD’s who are at home). My regret? … that those who live, mainly still in darkness on the other side of the ‘big pond’, still battle in vain for even a shadow of a similar program.
That’s what being at home on haemodialysis means to me - but from the other side of the oak desk!
John Agar[/QUOTE]
I wish everyone in dialysis was like Dr. Agar.
Mark
It means being able to take part in every minute of vacation with my family as I dialyze in my hotel room while my family sleeps or at the end of a busy, fun-filled day instead of losing hours of precious time to a dialysis center on their schedule. It means not feeling miserable with fluid overload as I wait for the next in-center session at least 2 days away. It means having control over my schedule and my life. It means feeling better and taking less medication. It means being a victor in life and having hope for a long life with my family.
Thanks guys, this is great material:)
It means safety. There has been a few times I was in-center and a fellow patient came in irrate, drunk or high. There has been an incident of someone getting robbed in the parking lot. That was once in the 6 years I was there (that I know of), but never the less, it did happen. No driving. My clinic is an hour (2 counties) away. I love only having a once a month appointment and not having 3 times a week. My treatments were 5 hours in-center. They run 3 here at home. To me, its a no brainer. They will have one heck of a fight on their hands to get me back in-center.