Name Change

[Comeback Kid(ney)]

Since I was diagnosed with ESRD, I have never felt comfortable with that name. It connotes that I am in the latter stages of my condition and it will soon be over. In no way do I minimize the illness but I have put together a program that does not make me look like I am at deaths doorknob. I suggest a name change to this illness and call it a Renal Rehabilitation Regimen. My regimen daily consists of cardiovascular work, eating healthy, resistance training, tai chi, prayer, meditation, journalizing, creative visualization, reading and listening to positive material and the metaphysical(i.e. Earthing). I call my program the Ten Commandments for Healing. The one thing that is required is that it entails hard work every day at keeping this wheel of balance going. There are many days that I feel like quitting but by hav ing a regimen to fall back on, it gets me focused. I also do not want to end up in the hospital so that is further motivation. This illness does not have to be looked at as a dire episode in your life but one that brings more quality and a sense of tranquility.






EDITED:  Thread moved to proper section: "Dialysis: General Discussion" - jbeany, Moderator

[jbeany]

You and Bill should compare notes....

http://ihatedialysis.com/forum/index.php?topic=2276.0

[monrein]

A rose is a rose by any other name but calling a skunk a rose does not make it smell rosy.

However, your attitude and your approach are commendable and I rely myself on several, although not all, of the components of your program.  If you feel that ESRD is inaccurate and I do understand the point you're getting at (although I do believe as fact that without dialysis the end stage of the disease is indeed death and I do consider dialysis as life support since without it or transplantation we die) I would say that Renal Rehabilitation is also inaccurate since in my case and in the vast majority of cases those non-functioning beans are stubborn organs that simply refuse to be rehabilitated.  The Regimen idea is fantastic though and daily cardiovascular exercise, purposeful nutrition, attention to one's state of mind and muscles are all superbly beneficial.  I also would go so far as to agree that any chronic illness, like any of life's crises or traumatic events CAN be powerful catalysts for growth, awareness and wisdom but all in all and on balance I would have preferred to stumble upon these things in the usual way...by just getting old.  Like you though, I didn't have a choice about it and so I too do my best to bring my best self and my best efforts to what is essentially a skunk of a situation.  I also want to know the reality of things and learn as much a I can so that I'm not just a bystander.
     I don't drink much either but hey a toast is a toast.

[Comeback Kid(ney)]

I agree with your response.The only reason I say that a semantical change would be preferable is that all I hear from nephrologists and nurses that I have dealt with is this gloom and doom mentality and, in essence, that I have nothing positive to look forward to. I have been told that directly. In my case, I developed ESRD from anm acute condition and even though the odds of getting off dialysis are remote, I am true believer in spontaneous healing. Medical science doesn't know everything and if there is a one in a million chance that I could get off dialysis then that is what I focus in on. I try to compare myself to Roger Bannister who broke the four minute mile back in the 1950's. Before him,nobody did but after he did it, others followed. There is so much to the spiritual and psychological component that has not been tapped into yet and if I could ever make this happen, then a modern medical miracle is possible. No medical professional should ever take away your hopes and dreams and even though their diagnosis may be right on, I believe that miracles can take place and I want to be that miracle!

[MooseMom]

Fifty years ago, dialysis didn't exist, so you could certainly argue that dialysis in and of itself is a miracle.  Yes, miracles can happen, but usually they come only after a lot of hard work.  Right now, this very moment, there are people out there working hard to make miracles happen.  Just the other day it was announced that they've found the cause of fsgs which had long remained elusive.  People are working on building organs; already, a new bladder has been built and used in human patients.

Your nephrologists and nurses may be in doom and gloom mode, but they are not the only voices out there.  There are many, many people who work very hard to show that life can be good despite ESRD...I'm sure you have already visited Lori Hartwell's site www.rsnhope.org.  There are plenty of voices just like hers.

[dialysisadvocate]

My father, died July 16, 2010 after a horrific dialysis treatment. He was 91 and one month. He lived each and every moment, no matter how bad he felt to life's fullest. Dialysis was hard on him, as well as his experiencing major retaliation from staff who did not accept the fact, or buy into the fact, that patients often are educated and can catch staff mistakes and prevent problems, even death.  He was certainly a testimony. Well educated and very vigilant when staff administered his treatment. Patients can be as educated as they want but unless staff are understanding that the patient IS the center of care and that the patient IS part of the team and has a right to bring forth concerns related to care without retaliation.

Roberta Mikles BA RN opinions of
Advocates4QualitySafePatientCare
www.qualitysafepatientcare.com
uncompensated advocates, non connected to the industry, and not beholding to the industry

[Rerun]

My father, died July 16, 2010 after a horrific dialysis treatment. He was 91 and one month. He lived each and every moment, no matter how bad he felt to life's fullest. Dialysis was hard on him, as well as his experiencing major retaliation from staff who did not accept the fact, or buy into the fact, that patients often are educated and can catch staff mistakes and prevent problems, even death.  He was certainly a testimony. Well educated and very vigilant when staff administered his treatment. Patients can be as educated as they want but unless staff are understanding that the patient IS the center of care and that the patient IS part of the team and has a right to bring forth concerns related to care without retaliation.

Roberta Mikles BA RN opinions of
Advocates4QualitySafePatientCare
www.qualitysafepatientcare.com
uncompensated advocates, non connected to the industry, and not beholding to the industry

Good for you!  Good to know!  I'm sorry about your father    

[okarol]

My father, died July 16, 2010 after a horrific dialysis treatment. He was 91 and one month. He lived each and every moment, no matter how bad he felt to life's fullest. Dialysis was hard on him, as well as his experiencing major retaliation from staff who did not accept the fact, or buy into the fact, that patients often are educated and can catch staff mistakes and prevent problems, even death.  He was certainly a testimony. Well educated and very vigilant when staff administered his treatment. Patients can be as educated as they want but unless staff are understanding that the patient IS the center of care and that the patient IS part of the team and has a right to bring forth concerns related to care without retaliation.

Roberta Mikles BA RN opinions of
Advocates4QualitySafePatientCare
www.qualitysafepatientcare.com
uncompensated advocates, non connected to the industry, and not beholding to the industry

Good for you!  Good to know!  I'm sorry about your father   

I think that quote is referring to Roberta Mikles father...

[Rerun]

I know.  I guess I got off topic but I didn't know about that advocacy website.

Change the name, fine with me.