MAKING THE PERFECT TEAM: WORKING WITH YOUR DIALYSIS TECHNICIAN

I just signed up for an October online webinar over the weekend, which reminded me at the same time to update my Health Care Team members. The webinar is titled: Making the Perfect Team: Working with Your Dialysis Technician. It is being presented by the American Association of Kidney Patients (AAKP) in conjunction with the organization’s HealthLine initiative, and in partnership with National Association of Nephrology Technicians/Technologists (NANT).

The AAKP HealthLine is a webinar-based program (with the conference call option still available for those without a computer) that conveniently educates patients and their family members on a variety of important health care topics from the comfort of their home or office. HealthLine addresses many issues patients with kidney disease face, such as: diet/nutrition; mention/social/emotional health; medication management; renal replacement treatment options; co-morbid conditions kidney patients cope with such as hyperparathyroidism, bone disease, anemia, heart disease, and much more.

All webinar programs are one-hour long, and they feature two to three expert speakers. All HealthLine programs are recorded and archived on the AAKP website (www.aakp.org) for continued patient education. More than 5,000 individuals have participated in a HealthLine webinar.

The October webinar will be “aired” on Tuesday, October 9, from 1-2 p.m. (EST), featuring the important role of the dialysis technician and the special relationship they have with their patients. The AAKP HealthLine is an interactive program, with time provided at the end of each webinar for a brief question-and-answer session.

Most dialysis patients, like me, can vouch for the need to establish a good relationship with their technician, the person most likely to spend the most time during the duration of the treatment. In my case, the treatment runs 3¼ hours, not counting the 10-15 minutes of preparation and a similar amount of time to disconnect from the machine that serves to remove excess fluid and to cleanse the bloodstream while circulating the patient’s blood. Most all patients receive treatments three times each week on a year-long basis.

At my in-clinic center (Fresenius Southport) on the south side of Indianapolis, the treatments run on a Monday-Wednesday-Friday routine, where seven technicians tend to a double shift of patients in up to 24 recliner chairs. I am generally “on the clock” by 6 every treatment morning, and I usually leave the clinic by no later than 9:45. Each technician likely will have three to four patients at a time to look after.

Most patients have what is called a fistula that has been placed surgically in the forearm or upper arm location. The fistula provides an access for hooking up the patient to the dialysis machine, with technicians trained on how to “stick” two needles in the arm – one needle pulling the blood into the machine and the other needle returning the blood back into the arm. Over the course of a single treatment, the process will circulate 2½ to 3 times a patient’s bloodstream – about 10-11 pints of blood for a man and 9-10 pints for a woman.

Since transferring to the Fresenius center last February, I have had all seven technicians “stick” me, some more frequently than others. Occasionally, the same technician might tend to me on back-to-back treatments. On some weeks, I may have a different technician each day. What I have noticed is that I seem to have established a relationship, mostly good, with each of the seven technicians. All seven are listed on my Health Care Team.

For the record, my complete Health Care Team is listed below:

BERNIE GILMER ‘HEALTH CARE TEAM’

PATIENT:                       Bernie Gilmer

PRIMARY PHYSICIAN: Dr. Xiangfeng Zhu

CARDIOLOGIST:            Dr. DeoVrat Singh

HEART SURGEON:         Dr. John Storey

NEPHROLOGIST:            Dr. James C. Elliott

PODIATRIST:                   Dr. Charles Carroll

UROLOGIST:                    Dr. Bradley Orris

FRESENIUS SOUTHPORT CARE CLINIC:

Doctor: James C. Elliott

Director of Operations: Betsey (Elizabeth) Farrar-McIntyre

Clinical Manager: Melissa Neuman, R.N.

Social Worker: Amy A. Amico

Dietitian: Beth Walthen

Nurses: Vanessa Rainey, Victoria Posada, Tamara Fender

Technicians: Kebra Afflis, Blythe Chmielewski, Ann Flake, Kelly Glassburn, Taniel Harper, Amy Maryfield, Katie Zschunke  

FAMILY:

Wife: Maureen Gilmer

8 children: Kelby (& Amanda), Archie (& Pam), Garrett (& Ryan), Sara (& Bryon), Erin, Evin, Ellen (& Dave), & Ethan

9 grandchildren: Gilmer (Allison, Dustin, Karson, Kyle, Paige), Wuczynski (Cole, Luke, Mylah, Tobyn)  

Nieces: Leslie (& Tom) Wayman, Lindsey (& John) Pendry

Cousins: Claire Marsh, Dorothy Virginia McKinney, Linda Kay Oberle

MINISTER:

The Rev. Archie L. Gilmer, Oak Grove Christian Church, Arden, N.C.

EXTENDED SUPPORT:

Mike & Marilyn Ayers, Jerry & Jan Lantz, The Book Club (Maureen Gilmer, Janet Coons (& Mike), MaryAnn Gerth (& Phil), Kay Rockel (& Doug), Dana Sherwood (& Bill), Pam Shuck (& Len), American Association of Kidney Patients (AAKP)

EXTENDED MEDICAL:

Naturopath: Duncan Capicchiano, Melbourne, Australia                                       (dietary/treatments)

Online physician: Dr. Vivian, Huaxia Institute, Shijiazhuang City, Hebei Province, China (dietary/treatments)

 

ARE PATIENTS ON SHORT END OF MANAGING OWN DESTINY?

There are times when chronic kidney disease patients feel like they are on the short end of managing their own destiny. There are a couple instances that have arisen recently that tend to substantiate that feeling.

One is a report on kidneybuzz.com provided by Public Broadcasting Service (PBS) that suggests that transplant hospitals are throwing out kidneys and denying patients to meet federal standards. Another is legislation proposed in the U.S. Congress – known as the Dialysis Patients Demonstration Act – that the American Association of Kidney Patients (AAKP) believes restricts patient choice.

The AAKP, along with most of the kidney community, has consistently supported integrated care as an important goal for quality patient care. However, AAKP contends this new legislation (H.R. 4143/S. 2065) fails to achieve that goal because it severely restricts patients’ freedom of choice – it infringes upon the patient/doctor relationship, and it creates profound disincentives for transplantation, threatening access to high quality care provided by non-profit and small dialysis providers. Also, according to AAKP, it excludes patients if they are transplanted.

The bill, and the strong-arm tactics large dialysis lobbyists and their PACs (political action committees) are using to attempt a forced Congressional passage, without accepting reasonable patient-friendly modifications, has created tremendous controversy throughout the kidney community.

Those who oppose the legislation point out how the bill restricts choice for patients:

** It automatically, without patient consent, assigns kidney patients to a “demonstration program” that favors only the largest, status quo dialysis providers.
** This means patients have no choice to “opt-in” to the demonstration program. If patients do not like the quality of care they receive, or if patients feel they are not being told enough about better care options like kidney transplantation or home dialysis, they bear the burden of deciding how to “opt-out” of the “demonstration program.”
** And, if patients do decide to “opt-out,” they only have 75 days to figure out how to do so! Clearly, the lobbyists who wrote the bill are not patients and have never experienced their lives being turned upside down by realities of kidney failure and dialysis!
** The integrated “demonstration program” creates financial disincentives for transplants, and then excludes patients if they are transplanted.

AAKP believes the bill is backwards. Patients deserve the full freedom to knowingly “opt-in” to a program that puts their health and life at risk. If dialysis providers run a “demonstration program” that fails to address patient concerns, patients should have the full freedom to “opt-out” at any time. This keeps accountability in the system and means big dialysis corporations must treat patients, at the minimum, like any other customer-oriented business in America.

As for the item relating to transplant hospitals throwing out kidneys that in some instances could be used by willing patients, the contention is summarized in the following article:

Transplant Hospitals Throwing Out Kidneys

& Denying Patients To Meet Federal Standards

At last count, there were 244 kidney transplant centers in the United States, according to the non-profit organization, National Kidney Center. Those collective centers hold over 100,000 chronic kidney disease patients on their kidney transplant waiting lists – all of whom are in desperate need of a lifesaving kidney transplant.

Well, Public Broadcasting Service (PBS) broke the shocking news that the number of organs being tossed out or discarded has drastically increased. Reporter  Casey Ross (PBS) suggested the startling revelation that kidney transplant hospitals across the United States are “throwing away less-than-perfect” kidneys and denying the sickest chronic kidney disease patients lifesaving transplants. Apparently, a key reason for the decision to discard kidneys at a record rate is out of fear of a federal crackdown and possibly losing Medicare funding.

“Last year, 3,159 donated kidneys were discarded, up 20 percent from 2007, according to federal data,” reported Ross. This comes with news that the wait time for a chronic kidney disease and dialysis patient to receive a kidney transplant from the waiting list is also increasing. Ultimately, many kidney transplant centers are rejecting relatively large amounts of kidneys because they are concerned that poor surgical outcomes will result in a federal penalty.

Put simply, surgeries involving imperfect kidneys and/or sicker patients are more risky, so hospitals that do many of them run the risk of poor outcomes that may hurt their national performance. That is why hospitals try to avoid the risk by discarding less-than-perfect kidneys. The chief executive of the Gift of Life Donor Program, Howard Nathan, said: “To me, it just doesn’t make any sense. We have hundreds of thousands of people on dialysis, and you have these kidneys available that would work … but transplant centers are afraid to use them because they might pull their results down.”

Nathan further noted: “Many patients would gladly accept organs that are discarded because of real or perceived imperfections.”

Yet, decisions to reject those organs by transplant centers do not give them that opportunity. In general, centers are seeking organs free of disease and certain biomarkers that could impair function or cause complications after surgery. However, studies have repeatedly raised questions about whether organs are being tossed out unnecessarily.

According to the KidneyBuzz.com article, there also are other implications. And the online site asks diagnosed CKD and dialysis patients the following question: Have you ever felt as though your kidney transplant center is looking for every excuse to take you off the kidney transplant waiting list, or refuse to offer you a kidney transplant?

Well, you are not alone. In the past five years that organ transplant hospitals have been trying to avoid federal crackdowns as a result of changes in standards, more than 4,300 transplant candidates were removed from waiting lists across the country. PBS mentioned: “That is up 86 percent from the 2,311 patients delisted in the five years prior to the regulation.”

Although, Centers for Medicare & Medicaid Services (CMS) have begun circulating a memo highlighting concerns about organs going unused – citing the 20 percent increase in discarded kidneys – it is not enough.

KidneyBuzz.com is encouraging diagnosed CKD and dialysis patients to request that CMS take immediate action to help prevent kidney transplant centers from discarding transplantable kidneys, as well as limit CKD patients being removed from the kidney transplant waiting list.

Patient advocate statements can be forwarded to U.S. Centers for Medicare & Medicaid Services, 7500 Security Boulevard, Baltimore, MD 21244. CMS.com is a federal government website managed and paid for by the U.S. Centers for Medicare & Medicaid Services.