Saturday, May 30, 2015

Do Nephrologists need MORE COMPASSION?

This is a very interesting article that pertains to anyone on dialysis or close to it. Please read and respond. Written by my sweet friend Dori Schatell. Do we need our nephrologists and health care teams to exercise more COMPASSION?? What do you think? http://homedialysis.org/…/102-nephrology-needs-more-compass…

Thursday, May 28, 2015

Interesting Article

http://www.renalweb.com/writings/MissingHalf.htm

Ten Issues Nephrologists Do Not Want To Discuss With Dialysis Patients (2014)

http://www.renalweb.com/writings/Ten_Issues.htm

Blessings

Wide variability in organ donation rates: Midwest leads nation in highest rates of donations | EurekAlert! Science News

Wide variability in organ donation rates: Midwest leads nation in highest rates of donations | EurekAlert! Science News  There's a bit of emotion here with me in that this article was co-written by University of Kansas or as we here in the area call it KUMed Center ~~ They have poor reputation by many former patients in regards to their Transplant Center.  Be cautious when dealing with them.  Blessings

Long but interesting article.

Blessings  http://www.biomedcentral.com/1471-2369/16/74

Scientists reach breakthrough in membranous nephropathy research | Nephrology News & Issues

Scientists reach breakthrough in membranous nephropathy research | Nephrology News & Issues

Wednesday, May 27, 2015

Davita a free workplace????

Editor's note: One must ask how effective this "freedom" and engagement are if the company has had to pay nearly $1 billion over the last three years to settle whistleblower suits.

It is also a shame that DaVita patients are not allowed to participate.

As long as patients are not part of the "team," U.S. dialysis care will lag far behind other first-world countries as well as all other fields of medicine. By now, it should be obvious that Thiry's approach is not working and it only continues to marginalize patients.

http://www.prnewswire.com/news-releases/davita-healthcare-partners-certified-as-freedom-centered-workplace-by-worldblu-300088221.html 

VWing get financial backing for patented implantable cannulation assistance

http://www.prnewswire.com/news-releases/vital-access-receives-10-million-financing-commitment-from-deerfield-300089408.html

Vitamin D deficiency may relate to frequency of restless legs syndrome and sleep quality

Vitamin D deficiency may relate to frequency of restless legs syndrome and sleep quality

Thursday, May 21, 2015

Focus groups help determine attitudes about paid organ donation | Nephrology News & Issues

Focus groups help determine attitudes about paid organ donation | Nephrology News & Issues

Focus groups help determine attitudes about paid organ donation | Nephrology News & Issues

Focus groups help determine attitudes about paid organ donation | Nephrology News & Issues

Kidney Health Initiative launches council to bring patient perspectives to projects | Nephrology News & Issues

Kidney Health Initiative launches council to bring patient perspectives to projects | Nephrology News & Issues   long overdue wouldn't you say?

New coalition aims to reduce geographic disparities in organ allocation | Nephrology News & Issues

New coalition aims to reduce geographic disparities in organ allocation | Nephrology News & Issues     It will be impossible to reduce geographic disparities in organ allocation until the general "shortage" of organs has been primarily removed.  Your thoughts??

New technology the wave of the future for new kidneys?

http://www.medgadget.com/2015/05/graphene-next-medical-revolution.html

Kidney Kinships

http://kidneykinships.org/

New Dialysis Machine???

http://medcitynews.com/2015/05/dialysis-outset-medical-at-home-device-kidney-failure/

Friday, May 15, 2015

One equal temper of heroic hearts....


There is a phenomenon that occurs when an organization has a highly significant power over those it is there to serve. I have observed it for some time in the form of Dialysis and Transplant Centers. When the product is seen as necessary for a good life by the customer i.e. kidney, liver, dialysis etc. that person has a certain involvement and need that seems to spark this in the providers. The providers become demanding beyond rational limits asking the customer (patient) to jump through often irrelevant and extraneous hoops, to commit to compliance without question - blind obedience if you will, and assume an authoritative role over the customer, while setting to blame the customer for any difficulties in the outcome.

I have witnessed this at three centers I consulted about a transplant for myself, as well as a dozen dialysis clinics in which I have been a guest or client. I have no respect for the program, their protocol or "rules for the patient" or their hurry up do what they demand but then sit back and wait while they take their time and make their mistakes approach to their customers.

While I realize that sticking to your program to maintain healthy standards to retain a certain level of health or to maintain transplanted kidney is important, being manipulated into compliance to anything the center demands of you without thought or consideration isn't likely to produce good results. Doing without thinking when it comes to your own body and your own health isn't the way to take primary responsibility for yourself and your own well being.

Setting people up to be treated as contrite children who will be naughty if given a chance puts people in the mind to do just that as it addresses "the child" rather than the "adult" and puts the whole process on that level.

It is important that we as ESRD recipients handle our challenges with maturity and informed decision making. Allowing ourselves to be manipulated, patronized, and ordered about without understanding why or wherefore is not in our best interest. It does not only a disservice to ourselves but all those who come after us. At the same time most staff at most clinics aren't prepared for those of us who are educated and assertive enough to stand up and expect or demand respect, demand to be treated with dignity and expect precise and concrete and educated answers to questions regarding our health and treatments. They often don't know how to respond to such proactive and assertive and educated customers. More often than not they respond with defensive, aggressive and sometimes dangerous behavior which leads to more demands, more rules, more ultimatums, more hoops to jump through and less rationale, understanding justification, reasoning or logic to the new demands.

When dialysis centers (or transplant centers) treat us as children, people desperate to survive will often give in and behave as children to get what they want and what they feel they deserve. This puts one in a seriously reduced ability to care for oneself or to make appropriate, well thought out and informed, educated choices. Our kidneys make us feel helpless enough; we need to take control of how we deal with them and the problems they have given us. Being put in a position of helplessness and desperate compliance without question in order to get even the *hope* of living better and longer is not the best way to accomplish good outcomes and yet it is the standard of care, the "protocol"...the "rules" of all dialysis centers whether consciously or unconsciously. The model needs to be changed so that the centers are working for the customer and not the customer/client (patient) working for the center. The roles must be slapped back into place where they belong wherein the staff are seeing to the "real needs of the individual" not catering to the governmental rulings, insurance companies, lawyers, administrators, but to the person as a person, an individual with a face, name, dreams.

At this point, with their "We know it all, You know NOTHING" and must do as you're told approach, how does a proactive, clear headed, thinking, educated, rational adult overcome the backwards, muddle-headed, mucked up, distorted, twisted, reversed thinking of the standard staff at most dialysis centers? 

How do we overcome this hurdle which stands before us every time we enter to have a treatment, every time we have blood drawn for testing, every time we are weighed, every time we are given a sheet with lab values on it with smiley faces and stars as though we are in kindergarten instead of rational thinking adults who have the ability and capability of making clear and precise decisions regarding our health and our healthcare? 

How do we help others see us as rational adults and treat us as such when all they choose or want to see is a number a paycheck a lawsuit a choose or want to see is a number, a paycheck, a lawsuit, a troublemaker, a whiner, an agitator, a pest, a lazy person, a complainer, a liar, a cheater of diet restrictions? 

How do we overcome such labels, such marks of distinction and help others to see us as a person, a mother, father, brother, sister, friend, spouse, partner? We are people with hopes, dreams, lives and desires for longer, better days. Where is the motivation of staff? What is their motivation? Money? Where is the real reasoning? Decisions made out of desperate need are never good decisions. Maybe in the end they only see us as statistics because they see so many of us come in, deteriorate and go, either in the grave or on to another clinic, or to get a transplant. Eventually we all die, but to live without hope, without dignity, without real compassion and understanding, without respect and genuine concern.....that is truly death.

Tennyson tells the tale:
Tho' much is taken, MUCH ABIDES; and though
We are not now that strength which in old days
Moved earth and heaven; that which we are, WE ARE;
One equal temper of heroic hearts,
made weak by time and fate, but strong in will
To strive, to seek, to find and not to yield.
Blessings, Amy

Soon, Your Doctor Could Print a Human Organ on Demand

Soon, Your Doctor Could Print a Human Organ on Demand

Thursday, May 14, 2015

Northwest Kidney Centers wins award for supporting kidney transplants | Nephrology News & Issues

Northwest Kidney Centers wins award for supporting kidney transplants | Nephrology News & Issues

Some home dialysis patients express concerns about safety of the Nipro buttonhole needles | Nephrology News & Issues

Some home dialysis patients express concerns about safety of the Nipro buttonhole needles | Nephrology News & Issues

Relaxation steps at work could significantly cut nurses' stress levels, study shows | Nephrology News & Issues

Relaxation steps at work could significantly cut nurses' stress levels, study shows | Nephrology News & Issues

The SGR is gone….but are nephrologists ready for P4P? | 2015-05-08 | Nephrology News & Issues

The SGR is gone….but are nephrologists ready for P4P? | 2015-05-08 | Nephrology News & Issues

Dialysis patient pleads guilty to accepting kickbacks in ambulance fraud case | Nephrology News & Issues

Dialysis patient pleads guilty to accepting kickbacks in ambulance fraud case | Nephrology News & Issues

Saturday, May 9, 2015

Paid to donate an organ??

http://www.theage.com.au/comment/should-you-be-paid-to-donate-your-kidney-20150508-ggvanj.html