Greetings

[robinf]

Hi everyone,

I'm a journalist working on a story about quality of care in dialysis. I'm hoping some of you who have first-hand experience, either as patients or as caregivers and unit administrators, will get in touch with me and share your thoughts.

Best,

Robin

[Joe Paul]

Welcome Robin, good to have you aboard.

[peleroja]

Welcome to the group.  I can give you information on both PD and hemo, although my hemo info is a little slanted as I have never had a fistula, just a permacath.

[Sluff]

Welcome to ihatedialysis.com Robinf,

I think you will find plenty of answers for your story in the advocate section of IHD. I hope your work brings some changes to ESRD and Dialysis medical care and funding. and a revamp of the entire healthcare system.

The only thing I ask is you do not contact our members directly for any personal information through PM"s or email. If they contact you that is acceptable.

Sluff/Admin

[paris]

    You just found the best kidney site on the internet.  You will get real information here--the good, the bad and the ugly.  Members are in all stages of kidney disease and they will be very willing to help you.  Read through the threads and you will get a feel for how many feel about the quality of dialysis.  If you have a specific question, post it and you will get many replies in a short time.  It is a very active forum.   Again, welcome and enjoy reading our stories and journeys. 



paris, Moderator

[kellyt]

   You will get more than you bargained for here!       Good Luck with your story!

[rose1999]

Are you looking at the USA or worldwide? As you'll soon find out it varies widely, in fact it varies within countries as well as between countries.

[Run8]

Hello robinf nice to meet ya, this site will have everything you need. Welcome.

[G-Ma]

 

[MandaMe1986]

Hi

[willieandwinnie]

  Robin. Oh boy, are you in for some information. Check out some of the older threads as they contain a load of stuff and then if you have any questions to ask, fire away. Hope you article goes well and we can help you out. 

[TeenHatesDialysis]

  Robin

Please let me know if you want some info on dialysis for children. My teenage daughter receives dialysis at the only hospital in an 8 state region that treats children. Quality can always be improved.

 

[kristina]

Hallo Robin, it would be great if you write something about the plight and struggle suffered by people in end-stage renal failure who wish to keep their kidney function for as long as possible and also those who are on dialysis who risk their life every time they hook up to the machine, and the complications which surround people who have had a kidney transplant. If you browse through the I Hate Dialysis-website and take note of all the comments on pre-dialysis, dialysis and kidney transplant you will notice these areas are frought with difficulty and patients are always in fear their life may suddenly end through infections etc. There needs to be more research done into diet and ways to avoid and deal with infection. There also needs to be far more research into the diagnosis of kidney disease to give the patient a more precise prognosis. The problems which surround kidney failure are very serious for all the patients involved and their families. People not associated with kidney failure do not have any idea about the seriousness and complications connected with end-stage renal failure, dialysis and kidney transplants. It appears to the general public that dialysis is just a simple treatment allowing someone to continue their life almost as normal and this is the same with kidney transplant. But the reality is totally different. I am in end-stage renal failure and I see my condition getting worse heading towards dialysis or transplant and in my desperation I try to prolong my own kidney function but there is very little help available and I have to research continually to discover what helps me with my diet and life-style. I notice there is an enormous disparity between opinions on diet in end-stage renal failure with some saying you can eat anything you like and others who think it is vitally important to be extremely selective and careful about what they eat and drink. You will find this so if you talk to doctors and read advice from support groups. It is only when you read the many comments in I Hate Dialysis that you begin to realize how important it is to be critical about food and drink. The worry about infection hovers like Damocles' Sword over everyone. Good luck with your writing and thank you, Kristina.

[Romona]

 

[Bajanne]

Welcome to our community!  Our founder intended that this forum be available to everyone with any interest in the renal challenge.  So you are welcome to be part of our online family There is a wealth of information here.  Just follow the guidelines of our beloved admin, Sluff.


Bajanne, Moderator