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Author Topic: Greetings  (Read 2316 times)
robinf
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« on: March 19, 2009, 08:49:34 AM »
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
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Joe Paul
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« Reply #1 on: March 19, 2009, 09:16:03 AM »
Welcome Robin, good to have you aboard.
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"The history of discovery is completed by those who don't follow rules"
Angels are with us, but don't take GOD for granted
Transplant Jan. 8, 2010
peleroja
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« Reply #2 on: March 19, 2009, 09:17:55 AM »
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.
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Sluff
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« Reply #3 on: March 19, 2009, 09:26:04 AM »
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
« Last Edit: March 19, 2009, 10:38:49 AM by Sluff » Logged
paris
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« Reply #4 on: March 19, 2009, 09:49:47 AM »
 :welcomesign;   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
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
kellyt
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« Reply #5 on: March 19, 2009, 11:53:05 AM »
 :waving;  You will get more than you bargained for here!    :rofl;   Good Luck with your story!
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1993 diagnosed with glomerulonephritis.
Oct 41, 2007 - Got fistula placed.
Feb 13, 2008 - Activated on "the list".
Nov 5, 2008 - Received living donor transplant from my sister-in-law, Etta.
Nov 5, 2011 - THREE YEARS POST TRANSPLANT!  :D
rose1999
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« Reply #6 on: March 19, 2009, 01:05:37 PM »
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.
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Run8
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« Reply #7 on: March 19, 2009, 01:23:25 PM »
Hello robinf nice to meet ya, this site will have everything you need. Welcome.
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G-Ma
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« Reply #8 on: March 19, 2009, 01:28:48 PM »
 :welcomesign;
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Lost vision due to retinopathy 12/2005, 30 Laser Surg 2006
ESRD diagnosed 12/2006
03/2007 Fantastic Eye Surgeon in ND got my sight back and implanted lenses in both eyes, great distance & low reading.
Gortex 4/07.  Started dialysis in ND 5/4/2007
Gortex clotted off Thanksgiving Week of 2007, was unclotted and promptly clotted off 1/2 hour later so Permacath Rt chest.
3/2008 move to NC to be close to children.
2 Step fistula, 05/08-elevated 06/08, using mid August.
Aug 5, 08, trained NxStage and Home on 9/3/2008.
Fistulagram 09/2008. In hospital 10/30/08, Bowel Obstruction.
Back to RAI-Latrobe In Center. No home hemo at this time.
GOD IS GOOD
MandaMe1986
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« Reply #9 on: March 19, 2009, 02:01:12 PM »
Hi :waving;
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Blessed are the poor in spirit, for theres is the kingdom of heaven.
Blessed are they who mourn, for they will be comforted.
Blessed are the meek, for they will inherit the land.
Blessed are they whohunger and thirst for righteousness, for theywill be satisfied.
Blessed are the merciful, for they will be shown mercy.
Blessed are the clean of heart, for they will see God.
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willieandwinnie
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« Reply #10 on: March 19, 2009, 03:55:04 PM »
 :welcomesign; 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.  :cuddle;
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"I know there's nothing to it, but I want to know what it is there's nothing to"
TeenHatesDialysis
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« Reply #11 on: March 20, 2009, 08:19:23 PM »
  :welcomesign; 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.

 :flower;
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Susan, mom of Jaclyn, Deziree and Valerie

www.cotaforjaclynp.com
Jaclyn and Deziree diagnosed CKD 2/07; NPHP (type 1) 9/07
Jaclyn started dialysis 1/2/08
Successful Transplant 7/4/2009 at Lucile Packard Childrens Hospital @ Stanford, Palo Alto, CA
Deziree in denial
Jaclyn listed 5/08
Deziree listed 1/09 ("Inactive")
Jaclyn Cadaver kidney transplant 7/4/09 (Independence from dialysis day!)
kristina
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« Reply #12 on: March 22, 2009, 05:20:37 AM »
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.
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
Romona
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« Reply #13 on: March 22, 2009, 07:18:01 AM »
 :welcomesign;
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Bajanne
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« Reply #14 on: March 25, 2009, 12:59:03 AM »
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 :grouphug; There is a wealth of information here.  Just follow the guidelines of our beloved admin, Sluff.


Bajanne, Moderator
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"To be found in Him, not having a righteousness of my own ...but that which is based on faith"



I LOVE  my IHD family! :grouphug;
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