Wednesday, December 30, 2015

Do you know the signs of sepsis?

Did you know 40% of patients diagnosed with severe sepsis don't survive? I survived my 1st episode of severe sepsis and then my 2nd, 3rd, 4th, 5th, 6th and then 7th. I've overcome the odds. I lived through them, but most do not. Be aware.  Know the signs.  Know the symptoms.  I am dialysis strong.  Blessings http://www.ems1.com/mobile-healthcare/articles/2184293-Sepsis-10-things-you-need-to-know-to-save-lives

Blog post by Dori S on "My Labs Are Great But" from Home Dialysis Central

http://homedialysis.org/news-and-research/blog/61-my-labs-are-great-but

Tuesday, December 29, 2015

Tuesday, December 22, 2015

Does Gratitude Bring Better Health?

http://www.wsj.com/articles/when-does-gratitude-bring-better-health-1450384249

Can you be Happy?

http://www.mindbodygreen.com/0-22396/what-makes-one-person-happier-than-the-next-hint-its-not-money.html

Thursday, December 17, 2015

Smart 911 Partners with AAKP

https://www.aakp.org/media-files/press-releases-media/item/smart911-partners-with-aakp.html

Wednesday, December 16, 2015

Tuesday, December 15, 2015

Hemoglobin Levels may Discriminate CKD Stages in the Elderly

http://www.renalandurologynews.com/chronic-kidney-disease-ckd/hemoglobin-levels-may-discriminate-ckd-stages-in-the-elderly/article/458658/

ESA injections weekly vs thrice weekly saves time ???

http://www.renalandurologynews.com/hemodialysis/weekly-esa-dosing-at-dialysis-centers-may-offer-time-savings/article/458656/

Because it takes so very much time for a nurse to administer one injection to a patient.  I found the article lacking.  Blessings

Vitamin C use

http://www.renalandurologynews.com/kidney-week-2015-anemia/vitamin-c-found-to-decrease-erythropoietin-requirement/article/452519/

Stress, Depression and the Holidays.

http://www.mayoclinic.org/healthy-lifestyle/stress-management/in-depth/stress/art-20047544

Friday, December 11, 2015

SONG HD Initiative

http://homedialysis.org/news-and-research/blog/129-the-song-hd-initiative-it-s-not-the-same-old-song-and-it-s-got-a-very-different-meaning

Kidney Stone Risk in Men Linked to Vitamin C Intake

http://www.renalandurologynews.com/kidney-stones/kidney-stone-risk-in-men-linked-to-vitamin-c-intake/article/448096/

Thursday, December 10, 2015

Ambulance Company Owner & Managers sentenced to prison in Medicare fraud

http://www.nephrologynews.com/ambulance-company-owner-managers-sentenced-to-prison-in-medicare-fraud-case/

Tuesday, December 8, 2015

Tuesday, December 1, 2015

Shopping on Amazon this season? Support Home Dialyzors United

Just in time for Christmas shopping, Home Dialyzors Unit is now available for Amazon Smile – once you designate HDU on your amazon account, .05% of all purchases will be donated to HDU.  Support the organization for patients by patients.  

Heres the link. 
  

Friday, November 27, 2015

Equations Used in Placing Patients on Kidney Transplant Waitlists yields varying results

http://www.nephrologynews.com/study-finds-equations-used-place-patients-kidney-transplant-waitlists-yield-varying-results-might-lead-disparities/

Top 5 Active Transplant Centers for 2014

http://www.nephrologynews.com/top-5-active-transplant-centers-2014-look-waitlist/

Native Americans Have Decreased Access to Kidney Transplants

http://www.nephrologynews.com/native-americans-have-decreased-access-to-kidney-transplants/

FDA Approves Opdivo to Treat Renal Cell Cancer

http://www.nephrologynews.com/fda-approves-opdivo-to-treat-renal-cell-carcinoma/

Tuesday, November 24, 2015

First US Patient discusses wearable kidney

http://www.nephrologynews.com/1st-u-s-patient-discusses-wearable-artificial-kidney-trial/

Fluid removal

http://www.nephrologynews.com/pcori-grant-to-fund-dialysis-patient-and-provider-education-on-fluid-removal-misses-the-mark/

Monday, November 23, 2015

Sunday, November 22, 2015

Treating Dialysis Patients INDIVIDUALLY according to needs is VITAL

http://www.renalandurologynews.com/hyperphosphatemia/individual-variability-overlooked-in-uncontrolled-hyperphosphatemia/article/454687/

Friday, November 20, 2015

New Stem Cell kidneys??

http://medicalxpress.com/news/2015-11-stem-cell-derived-kidneys-blood-vessels.html

Thursday, November 19, 2015

PKD Foundation Partners with ASN

http://pkdconnection.org/pkd-foundation-news/pkd-foundation-partners-with-asn-to-attract-more-early-career-scientists-to-pkd

High Phosphorus in HD patients linked to Cerebral Hemorrhage

http://www.renalandurologynews.com/kidney-week-2015-hyperphosphatemia/high-phosphorus-cerebral-hemorrhage-linked-in-hd-patients/article/452218/?

Wednesday, November 18, 2015

Almost half of Americans with hypertension remain uncontrolled

http://www.renalandurologynews.com/hypertension/half-of-americans-have-uncontrolled-hypertension/article/453655/?DCMP=EMC-RENALUROLOGY_TODAYSUPDATE&cpn=&hmSubId=GZu1QEuiqfM1&hmEmail=Hr-MCCt-poAnhNjp7t5PXVeRWY7ycbnr0&NID=&dl=0&spMailingID=12984015&spUserID=MjI2OTM0NjYxODY0S0&spJobID=661195048&spReportId=NjYxMTk1MDQ4S0

Friday, November 13, 2015

ASN conference showcases NEW technology for dialysis

http://homedialysis.org/news-and-research/blog/126-cool-stuff-from-the-2015-american-society-of-nephrology-meeting

Thursday, November 12, 2015

Why are some people happier than others

http://www.mindbodygreen.com/0-22396/what-makes-one-person-happier-than-the-next-hint-its-not-money.html?utm_source=mbg&utm_medium=email&utm_content=daily&utm_campaign=151103-what-makes-one-person-happier-than-the-next-hint-its-not-money

http://www.nephrologynews.com/payment-reform-led-less-home-hemodialysis-use/

http://www.nephrologynews.com/payment-reform-led-less-home-hemodialysis-use/

Kidney Transplant survival rates higher than HHD

http://www.nephrologynews.com/studies-show-kidney-transplant-patients-higher-survival-rates-home-hemodialysis/

First U.S. trial of wearable artificial kidney SUCCESSFUL

http://www.nephrologynews.com/first-us-trial-wearable-artificial-kidney-successful/

Nephrology workforce continues to shrink

http://www.nephrologynews.com/nephrology-workforce-continues-to-shrink/

dialysis mortality rates fall

http://www.nephrologynews.com/dialysis-patient-mortality-rates-fall-20-five-years/

Scientists develop new ‘surgically implantable, artificial kidney’ to end organ scarcity

Scientists develop new ‘surgically implantable, artificial kidney’ to end organ scarcity

NEW Artificial Kidney??

http://www.ibtimes.com.au/scientists-develop-new-surgically-implantable-artificial-kidney-end-organ-scarcity-1482288#.VkR6vTTpA6A.facebook

Thursday, November 5, 2015

6 tips for Healthy Holiday Eating "NKF"

https://www.kidney.org/content/6-tips-healthy-holiday-eating

3 sets of twins *AFTER* a kidney transplant!! You go girl. Amazing

http://www.bozemandailychronicle.com/news/dailyfeatures/three-forks-mother-has-third-set-of-twins/article_daf31b24-6174-5b80-bc70-75a530755f9b.html

Renal Support Network: When Your Fear Won't Go Away!

Renal Support Network: When Your Fear Won't Go Away!

Renal Support Network: Top 8 Questions a Patient Should Ask Their Nephrologist

Renal Support Network: Top 8 Questions a Patient Should Ask Their Nephrologist

Renal Support Network: Planning, Practice and Preparedness; it's all in the 'P's'!

Renal Support Network: Planning, Practice and Preparedness; it's all in the 'P's'!

Renal Support Network: Helping Other People Evolve - 2015 Essay Contest Winner

Renal Support Network: Helping Other People Evolve - 2015 Essay Contest Winner

Renal Support Network: Lori's Lines 'Social Networking Savviness, or, To Post Or Not to Post'

Renal Support Network: Lori's Lines 'Social Networking Savviness, or, To Post Or Not to Post'

Friday, October 16, 2015

Wednesday, June 17, 2015

Amy's Kidney needed FB page (community)

https://www.facebook.com/AmyNeedsALivingDonorKidney

Get your copy of the new PKD patient handbook

http://www.pkdcure.org/file/learn/documents/pkd-patient-handbook.pdf

Blessings

Cardiovascular improvement for those with CKD

http://www.nephrologynews.com/articles/110797-exercise-improves-cardiovascular-fitness-in-patients-with-advanced-chronic-kidney-disease

Exercise helps glucose control

http://www.nephrologynews.com/articles/110949-exercise-helps-control-glucose-trim-waist-regardless-of-fitness-gains

Sexual and domestic violence. What do you think?

http://mic.com/articles/120780/angelina-jolie-s-feminist-speech-on-sexual-violence-deserves-a-standing-ovation

Potential solution for shortage of organs JAMA

http://jama.jamanetwork.com/article.aspx?articleid=2293309

Tuesday, June 16, 2015

Percentages of dialysis people living in poor areas increases by 10%??

http://www.nephrologynews.com/articles/110946-percentage-of-dialysis-patients-living-in-poor-neighborhoods-increased-over-5-year-period

Monday, June 15, 2015

Living 50 years with a living donated organ.

http://www.duluthnewstribune.com/news/health/3765579-fifty-years-later-northland-womans-donated-kidney-going-strong

Sunday, June 14, 2015

Be Happy

In this one moment. For today. For yourself.  Be happy. Sending you all love and hugz.

https://www.youtube.com/watch?v=y6Sxv-sUYtM

Wednesday, June 10, 2015

NxStage offers another reason to promote home hemodialysis: saving water | Nephrology News & Issues

NxStage offers another reason to promote home hemodialysis: saving water | Nephrology News & Issues



I find this article woefully lacking adequate information.  It should include far more statistics regarding the in-home person vs. in-center person including time, pressures, flows. frequency etc.  I find it almost impossible to believe a person doing in-center treatments would use over 400 gallons water per week but NxStage with System One uses less than 10% of water.  Why? What makes the difference? Have they ever conducted studies of water usage with the same machine, same tx RX, same persons etc in their home to determine if the usage is accurate? Why would NxStage use less water? Especially if treatments are traditionally more frequent.  I find the article much akin to comparing apples to oranges.  What are your thoughts? Blessings

Experimental drug may reduce kidney damage in diabetic kidney disease | Nephrology News & Issues

Experimental drug may reduce kidney damage in diabetic kidney disease | Nephrology News & Issues

A Classic Case of Staff-Centered Care

A Classic Case of Staff-Centered Care



Ever happen to you? Is it worth waiting for 1,2 or even 3 hours or more for a 7-15 minute block of time with your dr.? Blessings

No Patient Harm?

http://www.trusteemag.com/display/TRU-news-article.dhtml?dcrPath=/templatedata/HF_Common/NewsArticle/data/TRU/Magazine/2015/Jun/Cov-high-reliability-zero-patient-harm-hospitals&utm_source=daily&utm_medium=email&utm_campaign=TRU#

Saturday, June 6, 2015

Tuesday, June 2, 2015

State policies on organ donation have little effect on donation rates | 2015-06-02 | Nephrology News & Issues

State policies on organ donation have little effect on donation rates | 2015-06-02 | Nephrology News & Issues

Spread the word

Okay friends it is the first of the month and as usual I am trying to get the word out about my need and my page.  Please go to this page and click on "like" and then SHARE IT ON YOUR PROFILE PLEASE?  I am currently at 970 likes and would like to be able to get just 30 more to reach my goal of 1000 likes.  Can you help me with this please? Thank you & Blessings

https://www.facebook.com/AmyNeedsALivingDonorKidney

European group publishes guidelines for treating diabetes patients with CKD stage 3b or higher | Nephrology News & Issues

European group publishes guidelines for treating diabetes patients with CKD stage 3b or higher | Nephrology News & Issues

Survival rates improve for dialysis patients in Europe | Nephrology News & Issues

Survival rates improve for dialysis patients in Europe | Nephrology News & Issues

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

Tuesday, April 21, 2015

Panel to review 5-star rating system for dialysis facilities | Nephrology News & Issues

Panel to review 5-star rating system for dialysis facilities | Nephrology News & Issues

ESRD Network 15, 17 to join health care consulting organization HealthInsight | Nephrology News & Issues

ESRD Network 15, 17 to join health care consulting organization HealthInsight | Nephrology News & Issues

The 50 most active transplant centers in 2013 | Nephrology News & Issues

The 50 most active transplant centers in 2013 | Nephrology News & Issues

Hand hygiene surveillance reduces positive blood cultures in dialysis clinics | Nephrology News & Issues

Hand hygiene surveillance reduces positive blood cultures in dialysis clinics | Nephrology News & Issues

Can multidisciplinary rounding improve dialysis patient care? | Nephrology News & Issues

Can multidisciplinary rounding improve dialysis patient care? | Nephrology News & Issues

Nurses assess patient safety in the dialysis setting | Nephrology News & Issues

Nurses assess patient safety in the dialysis setting | Nephrology News & Issues

Monitor the dialysis access every day to make it last | 2015-04-21 | Nephrology News & Issues

Monitor the dialysis access every day to make it last | 2015-04-21 | Nephrology News & Issues

Wednesday, April 1, 2015

When Pharmacies fail to fill pain RX's

http://drugtopics.modernmedicine.com/drug-topics/content/tags/chronic-pain/when-valid-prescriptions-are-refused?page=full

Friday, March 27, 2015

Enable to Disable

http://homedialysis.org/news-and-research/blog/93-enabled-to-be-disabled

Wednesday, March 25, 2015

Restless Leg Syndrome TIPS

http://www.sleepconnect.com/sleep-disorder-articles/314-7-ways-to-improve-sleep-with-restless-legs-syndrome?utm_source=Newsletter&utm_medium=Email&utm_campaign=SCN_20150324&utm_term=1button

Friday, February 6, 2015

Dialysis Clinics

hmmm, I think it would bother me to always have someone watching over my back and it still doesn't address the issue of longer, slower, gentler dialysis