and dialysis volume11 number 4 fall 2002 ideal … · dialysis-related technologies. since ......

This publication is a part of the K/DOQI Learning System (KLS)™ and is made

possible in part through an educational grant from

the Title and Founding Sponsor of K/DOQI

in this issue

The Renal Community’s Newspaper

Good Nutritionpages 4-5

Taking Chargepage 12

Transplant Innovations page 13

Combining Fitness and Dialysis

page 15

National KidneyFoundation®

Some years have passed sincemy kidney transplant, givingme a “vacation” from hemo-

dialysis. I use the word vacationbecause we never know how long ourtransplants will work. As a result,regardless of our current treatment,dialysis or transplantation, for kidneyfailure it is important to be aware ofdialysis-related technologies. Sincethis issue of Family Focus is exploringinnovations in current treatment, aswell as what we might expect in thefuture, the Editorial Board thought itwould be interesting to ask peoplewho have chronic kidney disease toshare their views of ideal care in thefuture for those on dialysis. Here’swhat they had to say.

EDNA MARTIN (Rainbow

Flat, NewSouth Wales,Australia) “My ideal isfor dialysis to almost disappear inthe next 5 to10 years,

replaced by transplants of geneticallyengineered, modified, non-rejectinganimal organs.”

CONNIE KRAMER (Grand Blanc,Michigan) “I see ideal care as a perma-nent implantable artificial kidney.”

ROBIN TITTERINGTON(Decatur, Georgia)

“My preference isthat we would notneed dialysis in 10years! I guessmore funding fornocturnal dialysisor even daily dialy-sis would be nice.Then there are lit-

tle things. I'd like to see all RN's andmore staff so I could see a staff mem-ber near me at all times. And thenthose lovely dialysis chairs we’ve talkedabout… comfy, soft chairs, pillows,blankets, laptops, tables and snacks!”

EDWARD HANSETH(Rosemead, California) “Dialysis

must becomeeasier, sopatients canadministertreatment tothemselves.Machines wouldbe portable withtheir own filters,and the use ofregular waterwould be possible. Patients wouldmanage their weight gain betweentreatments and adjust settings forfluid removal. Dialysis treatmentwould be revised according to bloodlab results. Machines would be moni-tored by modem during treatment andadjustments could be changed duringlog-on. Equipment would run on nor-mal household current, and necessities

like sodium bicarbonate, dialysate, etc.,would be packaged as single-use and indisposable containers for ease of trans-port and clean-up. Call me a dreamer,but making dialysis easier and moreportable can make patients capable ofliving a more normal life. Dialysis is allabout the freedom to live.”

K. JOY KEMPER(Lancaster,

California) “In myideal dialysisfuture, treatmentdecisions wouldbe based more ona patient’s well-being than oneconomics. Ideally, treatment wouldbe individualized. Information aboutdialysis options would be universallyavailable. Patients could go to a specif-ic center of their choice. Transporta-tion to and from dialysis units wouldbe provided. Patients who wanted tohave more control over their treat-ments would not be met with manydelays and setbacks when they selecthome hemodialysis. New homehemodialysis machines would beportable, self-contained and have awater processor with extended-usetubing. Machines would be convertiblefor short or lengthy sessions. Peoplewould have the choice of schedulingperiodic, daily or nocturnal dialysis,whichever best improves personalquality of life. Patients could travelwith their machine, hooking it up anywhere water and electrical power exist.”

Ideal Dialysis Care in the Next 10 Years

By Dale Ester

C H O I C E S I I : I N N O V A T I O N S

continued on page 3

UNDERSTANDING YOUR CHOICES

VOLUME 11 NUMBER 4 FALL 2002

2

Family Focus Volume 11, Number 4

T he future… what does ithold? At this time last year Ifound myself writing the edito-

rial a few days after the tragedy ofSeptember 11th. Ironically I am writ-ing this editorial at its first anniver-sary. If the events of that day havetaught us anything, it is that we can-not predict what the future holds instore. That is true for each and everyone of us. You might feel that it iseven more of a reality for those, suchas yourself, who face a chronic dis-ease. Yet we can learn from thetragedies that occurred that day andthe behaviors that followed. We areindeed strong, and ever hopeful forthe future. You have also facedanother hurdle, kidney failure, andthere is every reason to face it withthe same strength and optimism.

The last issue of Family Focusstressed just how far we have come in the treatment of chronic kidney disease. A huge amount of progresshas occurred in the past 30 years and we can expect even more in thenear future. It is the hope of yourEditorial Board that this issue willserve as a source of hope, inspirationand enlightenment.

This issue also represents closure forthis year’s Family Focus EditorialBoard. Tiffany Shubert, our fitness edi-tor, will be leaving us to return toschool for her doctorate degree.Tiffany’s knowledge and skill in the areaof physical fitness will be greatlymissed. I believe that all of the membersof the Editorial Board have made majorcontributions to the education of thosewith chronic kidney disease. As thepublication’s editor, I want to acknowl-edge the devotion and tremendous vol-untary effort of these individuals.

I also want to welcome our newEditorial Board members, PedroRecalde, the Fitness Editor, andRoberta Bachelder, the End StageRenal Disease Network representative.I also want to formally welcome LindaHarte, our transplant editor, who

joined us mid-year. We look forward totheir contributions.

The 2002-2003 Editorial Board metin September to plan the upcomingfour issues of Family Focus. The nextissue will feature only items that havebeen submitted by you, our readers.Diabetes will be featured in the issuefollowing, as it is the most commoncause of kidney disease. The thirdissue will highlight the importance ofunderstanding lipids (fat) and bonedisease in chronic kidney disease.Improving relationships and commu-nication in the dialysis unit will be thefocus of the final issue of 2003.

As always, your thoughts and feel-ings are important to us. For that rea-son, we will soon be asking for helpfrom many of you in completing a sur-vey about relationships in the dialysisunit. The results of this survey will bepublished in the last Family Focusissue of 2003. Since you are theexperts, we will rely on you to give usthe feedback that can help foster posi-tive relationships in the dialysis com-munity. Thanks for your help!

Karren King, MSW, ACSW, LCSWFor the Editorial Board

Karren King

NKF Family Focus is published quarterly by the National Kidney Foundation

Editorial Office:National Kidney Foundation30 E. 33rd Street, New York, NY 10016(800) 622-9010 • (212) 889-2210http://www.kidney.org

Editor-in-Chief:Karren King, MSW,ACSW, LCSWKansas City, MO

Fitness Editor:Tiffany Shubert, MS, PTSan Francisco, CA

Medical Editor:Wendy W. Brown, MD St. Louis, MO

Nursing Editor:Bobbie Knotek, RN, BSN Plano, TX

Nutrition Editor:Lori Fedje, RD, LD Portland, OR

Patient Editor:Dale EsterGlendale, AZ

Pediatric Editor: Barbara Fivush, MDBaltimore, MD

Social Work Editor:Mary Beth Callahan,ACSW/LMSW-ACPDallas, TX

Transplant Editor:Linda Harte, RN,BSN, MA, CNN, CCTKansas City, MO

Opinions expressed in this newspaper do not necessarily represent the position of the National Kidney Foundation

Editorial Director: Gigi Politoski

Editorial Manager:Sheila Weiner, MSW, CSW

Executive Editor: Sara Kosowsky

Managing Editors: Danielle Slade & William Comerford

Production Manager: Sunil Vyas

Design Director: Oumaya Abi Saab

FROM THE EDITOR

To contribute to the

National Kidney

Foundation,

visit our Web site at

www.kidney.org

or call

(800) 622-9010

to make your

donation as a

Family Focus reader.

FF


3

The Change of Things in Peritoneal DialysisBy Sandy Hinton, RN, BSN

Because peritoneal dialysis (PD)is still fairly new as a treatmentfor chronic kidney disease, it is

easy to overlook how much this treat-ment has developed in its short history,and where innovations are taking it.

When PD began to be used as a treat-ment in the 1960s, it was only done inthe hospital, where it was extremelyexpensive and difficult to manage. It wasnot until 1975 that PD as we know ittoday came to be. The concept of creat-ing a treatment that was simple enoughfor an individual to do outside of thehospital without any assistance was amajor breakthrough. This treatment,known as Continuous AmbulatoryPeritoneal Dialysis (CAPD), was acceptedby the federal government as a viabletreatment and approved for reimburse-ment. As a result, dialysis centers beganto offer patients the option of home peri-toneal dialysis training and this treat-ment took off.

At this time, however, PD still hadnumerous problems and limitations.The placement of the PD catheter was amajor surgery that usually involved aweeklong hospital stay. This catheterwas usually put to use immediately(someone discharged from the hospitalSaturday might begin training onMonday), so the surgical wounds hadnot fully healed. This greatly increasedthe risk of infection and leaking.

The process of performing a CAPDexchange involved a 48-inch transferset, which looked like IV tubing, thatwas connected to the PD catheter. Thisline was connected to a plastic bag ofsolution by penetrating the bag with apointed plastic spike. The bag of solu-tion was then hung on an IV pole so thatgravity could fill the peritoneal cavity.This bag would remain connected to thetransfer line and carried around underone’s clothing (undergarments, beltsand special bags were designed to carrythis bulk) until it was time to drain thesolution out of the peritoneum into thesame bag, unfolded. After the drain wascompleted, the spike was removed fromthe old bag, which was now full of waste,and connected to a new one. Carefulhand position was required along withgood eyesight in order to transfer thespike, and it was on many a wish and aprayer that contamination did not occur.

The risk and incidence of peritonitisand the importance of patient comfortand satisfaction became the main focusof manufacturers of peritoneal dialysissupplies. In 1986 came the first bigchange: the Y-set was born. This elimi-nated the need to wear 48 inches of lineand a folded up solution bag. Thismeant more freedom for everyone andcontributed to improved self-images. Theincidence of peritonitis became less andPD became more attractive to patientsand physicians as a viable option fortreatment.

In the last several years, manufac-turers have continued to strive to cre-ate patient-friendly systems. Transfersets are now a mere six to eight incheslong and are smooth and sleek, mak-ing them undetected under clothing. Y-sets have evolved into pre-connectedsystems, so no one has to spike bagsany more. Physicians now plan aheadand place PD catheters (now done inday surgery) four to six months before

they are needed, which promotes bet-ter healing and less risk of infectionand leaking.

Cyclers, machines that were intro-duced to allow people to do PD whilesleeping, can now be run by computersoftware. These computers will soon beable to download all kinds of treatmentinformation that will be helpful tohealth care workers.

Another new development is researchinto new types of solutions. The high-glucose level of solutions has causedproblems with some patients, so newsolutions are being developed with few-er side effects, resulting in better bloodsugar control and less weight gain.

PD has come a long way in the past30 years. Yet new research will contin-ue to find ways to make this treatmentmore convenient and more practical.

About the Author:Sandy Hinton, RN, BSN graduated fromTexas Christian University. She hasworked in dialysis since 1977 andworked with peritoneal dialysis patientsfrom 1984 until this year. She is current-ly a Renal/Pancreas Coordinator inDallas, Texas.

“In the last several years,manufacturers have contin-

ued to strive to createpatient-friendly systems.”

Ideal Dialysis Care in the Next 10 Yearscontinued from page 1

SANDI KNOWLES (Gilbert, Arizona)▼ “Dialysis prescriptions must be

individualized, with dialysate com-position and ultrafiltration model-ing to resolve the true medicalneeds of each specific patient.

▼ There would be higher hematocritlevels so that I would have moreenergy!

▼ A lot less turnover of nurses andtechnicians would take place.

▼ A blood access that lasts longerand can be used more often with-out problems would be available.

▼ There would be a single-stick,dual-lumen needle that is as effi-cient as the use of two needles.

▼ Improved education for those withchronic kidney disease would beroutinely offered before dialysis isbegun so that people would knowwhat to expect before their firsttreatment. People deserve anopportunity to visit a dialysis unitand speak with staff before theybegin dialysis.

▼ People would be given the oppor-tunity to learn all about theirmodality choices and then makean informed decision for what willgive them the best quality of life.”

You might be wondering, “What can Ido to help make change happen?” It iseasy because you are a customer! Youare an important part of how thegoods and services of quality dialysiscare are delivered. Your thoughts andopinions are very important becauseideas imagined are a terrific way tomake treatment better and improved.Positive change can happen if youspeak out and allow yourself to beheard. Make suggestions to peoplewho will listen and react! When I lookback at how far dialysis has come inthe past 10 years, I see tremendousgrowth. I hope we can look backtogether in the next 10 years and say,“Things sure did get better, and I helped make the changes happen!” FF

FF


4

You are what you eat. Thiscommon phrase might bemore meaningful for people

on dialysis than for others who arenot on such a complicated diet. Youlimit sodium, potassium, phosphorusand fluid in your diet while trying toeat enough protein and calories. Add a diabetic restriction and the dietbecomes even more complex. Youneed to study very carefully the nutri-ent content of all the foods you eat.

This can make it hard to just enjoyeating, something those withoutdietary limits take for granted.

Nightly home hemodialysis (NHHD)offers an opportunity for hemodialysispatients to mimic the diet of healthyindividuals who do not have dietarylimits beyond their own choices. Shortdaily hemodialysis (SDHD) also offersfewer dietary restrictions than stan-dard hemodialysis. Both offer an alter-native to standard hemodialysis thatimproves appetite and general well-being and overall nutritional status.

A common complication of standardhemodialysis is malnutrition. Malnut-rition means that someone is not wellnourished and can be caused bymany things including an unhealthydiet or medical problems. It has beendirectly linked to more sickness andhigher rates of death in people withkidney failure.

The United States has a higherdeath rate for people with kidney fail-ure than France, Japan or Italy.1 Insome dialysis units in France andJapan people dialyze eight hours pertreatment, three days per week. Insome dialysis centers in Italy, people

dialyze two hours per treatment, sixdays per week.2 People on NHHD usually dialyze six to nine hours fiveto six nights per week at home atnight while they sleep. People onSDHD dialyze two to three hours, sixdays per week either at home or in thedialysis unit.

There are over 250 published arti-cles that discuss the advantages ofdaily dialysis for the treatment of kid-

ney failure. As early as 1969and up to the present, studieshave shown improvements inthe nutritional status of peopleon daily dialysis, includingincreased blood protein levels,improved protein catabolic rate,increased dry weight andincreased appetite.1 People onSDHD have better protein andcalorie intake and increased drybody weights with improvedfluid control and blood pressurecontrol.3 People on NHHD have

improved protein intake; improvedpotassium levels and lower serumphosphorus levels without usingphosphate binders. Most people onNHHD have to increase dietary phos-phorus intake and/or add phosphoruseither in their dialysate bath or orallyto maintain normal levels. Most peopleon NHHD do not have to limit fluidintake. Additionally, 75 percent of peo-ple on daily dialysis need fewer bloodpressure medications due to theirimproved fluid control.4,5

Daily dialysis offers more nutritionalfreedom. For people with a long historyof kidney failure, this takes time tosink in. They are cautious until theysee lab result after lab result comeback within the normal range. After a while, they are able to focus on enjoy-ing a healthy diet that offers a varietyof foods. This treatment is not current-

ly reimbursed by Medicare and there-fore not widely available, but with thesupport of the kidney community, thegovernment and you, it may soon bean option for all people who needlong-term dialysis treatment.

References1. Kjellstrand, C., Ting, G.: Daily

hemodialysis: history and revivalof superior dialysis method andliterature review. ASAIO J. 44:117-22. 1998.

2. Kjellstrand, C., Ting, G.: Dailyhemodialysis: dialysis for the nextcentury. Adv Renal Replace Ther.5:267-74. 1998.

3. Galland, R, Traeger, J, Arkouche,W, et al: Short Daily Dialysis andNutritional Status. Am J KidneyDis. 37 (Suppl 2):S95-S98, 2001.

4. McPhatter, LL, Lockridge, RS:Nutritional Advantages of NightlyHome Hemodialysis. Neph Newsand Issues, 16:31-34, 2002.

5. McPhatter, LL, Lockridge, RS,Jeanette Albert, JD, et al: NightlyHome Hemodialysis: Improvementin Nutrition and Quality of Life.Adv Renal Replac Ther 6:358-365, 1999.

About the Author:Lesley L. McPhatter, MS, RD is a renaldietitian at Lynchburg NephrologyDialysis, Inc. in Lynchburg, Va. Shecounsels patients with all types of kid-ney disease including chronic kidneydisease, hemodialysis including night-ly home hemodialysis, peritoneal dialy-sis and those with transplant.

Good Improving Nutritional Outcomes: Daily Dialysis

By Lesley L. McPhatter, MS, RD

“Daily dialysis offers more

nutritional freedom. For

people with a long history

of kidney failure, this

takes time to sink in.”

FF

5

Nutrition


Idialyze in Florida. Where I sit for dialysis remains thesame each week, and as a result I have developed aclose relationship with fellow patients. It is very heart-

warming, as we share many things, including family mat-ters, what we do in our spare time, the methods we use tocontrol intake of fluid and “your” weight, “my” weight. It is

so interesting because we are of different cultures, yet weshare a unique, common bond—dialysis for us is life.

One of the activities we do is sharing recipes. I want toshare three of them with you. One of them is fromJamaica, another is from Guyana and the last is fromIsrael. Enjoy!

A Cultural ExchangeRecipes contributed by Mariann Burkett

Analysis done by Nutritionist 4 Computer System

Curried Chicken (Jamaica)

1 whole chicken (2 lbs) cut up in 8 or more pieces2 tbsp curry powder1 tsp black pepper1 large onion (cut up in rings)1 small green pepper2 stalks green onion (cut up small)1 stalk thyme1 tbsp Mrs. Dash (renal)1 large potato (soaked overnight)1 tbsp olive oil

1. Season chicken with all above ingredients2. Rub seasonings in chicken3. Marinate for 1 hour4. Place oil in deep pan—heat5. Sauté chicken in oil for 5-10 minutes6. Add warm water to chicken just to cover 7. Cover pot with tight lid8. Bring to boil—then reduce to medium heat

9. Cook on medium for 30 minutes10. Cut potato into small wedges and add to chicken—

Cook over medium low for another 15-20 minutes11. Stir and serve over bed of rice with green salad or

mixed vegetables.

Contributed by Mariann Burkett

Note: Curry powder is a greenish-yellow seasoning usedin West Indian and Indian recipes. This can be found inmost supermarkets and in local West Indian stores.

Recipe makes 12 servings. Each serving of curriedchicken contains:

Does not include rice or whatever is served with it.

Calories 487Carbohydrates 4 gmsProtein 21 gmsFat 42 gms

Sodium (Na) 67 mgPotassium (K+) 217 mgCalcium (Ca) 24 mgPhosphorus (P) 140 mg

✃

Stew Beef (Guyana)

2 lbs beef stew (cut in small pieces) season and marinate for one hour

1 large onion (chopped in small pieces)1 tsp cinnamon

black pepper to taste3 small peppers5 large cloves garlic2 tbsp tomato paste, low sodium

1. Place 1 tbsp oil to heat2. Fry garlic, pepper and onions in oil until golden brown3. Add beef to pot4. Add 2 tbsp tomato paste5. Let meat boil then simmer6. Add 1 cup hot water to make gravy until it thickens7. Add 1 tsp ground cinnamon8. Add a touch of black pepper9. Simmer until meat is tender

Eat over rice, roti (Guyanese pita bread) or just plain bread.

Contributed by Mymoon Abdulla

Recipe makes 12 servings. Each serving of stew beef contains:



✃

Stuffed Cabbage (Israel)

1 large cabbage1 cup rice, uncooked1 lb ground beef1 tsp black pepper1 tbsp cumin

salt to taste5 cloves of garlic (crushed)

1. Take out heart of cabbage2. Separate leaves and parboil in hot water for 5 minutes3. Remove from heat and separate leaves in a single pile4. Wash rice well5. Add ground beef and seasoning to rice6. Mix well7. On cutting board lay out cabbage leaves8. Add to leaves 1 tbsp rice mixture9. Roll into oblong rolls and place in flat dish10. In medium size pot add broken leaves or leftover leaves to

bottom of pot11. Lay staffed cabbage rolls in pot in layers12. Add water to cover and steam until tender.

Contributed by Nada Abusab-Farraj

Recipe makes 6 servings. Each serving of stuffed cabbagecontains:



✃

6


State Programs Promote Health of Kidney Patients

By Dolph Chianchiano, JD, MPA

Although state programs haveplayed an important role in meeting the needs of kidney

patients over the past 30 years, FamilyFocus readers should be aware thatthe design and funding of state pro-grams may change in the future.

Medicaid, the health insurance pro-gram which is funded by the statesand the federal government, providesa safety net for those Americans withthe most financial need. It has helpedthose with kidney disease who have noother coverage, as well as those whoare eligible for Medicare. However, 44states have budget deficits and thereis pressure around the country tolower Medicaid spending.

Furthermore, Medicaid payments forprescription drugs are rising fasterthan other components of the pro-gram. In an effort to cut Medicaid pay-ments for prescription drugs, somestates are discouraging Medicaid ben-eficiaries from using brand-namedrugs, limiting the number of pre-scriptions that Medicaid will cover andrequiring those on Medicaid to usespecific medications to treat specificconditions. Additional states may usethese methods in the future.

Some states are planning to open uptheir Medicaid drug programs to peo-ple whose income would ordinarilydisqualify them for Medicaid assis-tance, while at the same time puttingthese cost-cutting strategies intoplace. Although this seems inconsis-tent, the states have chosen thiscourse of action because Congress isdeadlocked over adding a prescriptiondrug benefit to Medicare. These pro-grams to provide Medicaid drug bene-fits to those who would not ordinarilyqualify for Medicaid are known as“Pharmacy Plus” plans. The typicalstate plan qualifies people for pharma-cy benefits through Medicaid if theyhave an income at or below 250 per-cent of the federal poverty level.1 Sincethe federal government shares in thecost of state Medicaid programs, these“Pharmacy Plus” plans must beapproved by the U. S. Department ofHealth and Human Services. Theagency has already approved propos-als from Florida, Illinois, Marylandand South Carolina. However, it is

important to keep in mind that onlysenior citizens will benefit from theseplans. People with kidney failure whoare under 65, and who are not other-wise eligible for Medicaid, will not beable to use this kind of program.

Placing Medicaid recipients in man-aged care plans is another way thatstates have tried to control the cost oftheir Medicaid programs. Under man-aged care, state payments are limitedto a specified dollar amount permonth without regard to health ser-vices the patient needs or receives.The federal government recentlyissued regulations to control this practice. States, and the managedcare plans with which they contract,must be in full compliance with thoseregulations by August 13, 2003. Theregulations call for the identification

and assessment of persons with spe-cial health care needs to insure theirneeds are met. People who enroll inthe managed care plans who have anongoing medical condition thatrequires special treatment or caremust have qualified specialists avail-able to them.

Twenty-one states and theCommonwealth of Puerto Rico operateother programs that offer financialassistance to transplant recipientsand those who are on dialysis. Forexample, these programs help con-sumers with the cost of medicationsand transportation. In total, these 22programs provide more than $60 mil-lion in patient support annually. Thebudgets for these programs havegrown in the last 10 years but general-ly they have not increased as quicklyas the kidney failure population dur-ing the same period. In many pro-grams, therefore, the funds availableper patient are diminishing. Advance-ments in medicine have improved thehealth and well-being of people whoare on dialysis and have transplants.

The cost of new and additional med-ications, however, has made evenmore demands on these state kidneyprograms. State kidney programs willbe challenged by these trends in theyears to come. Also, given the financialsqueeze that state budgets have expe-rienced, it will not be easy to convincelegislatures to create and fund newstate kidney programs in parts of thecountry which have not had them inthe past.

Federal law requires that stateMedicaid programs pay Medicare costsfor certain elderly and disabled per-sons with low incomes and very limit-ed assets. Patients who meet the defi-nition of “Qualified MedicareBeneficiary,” for example, do not haveto pay Medicare Part B premiums and,depending on the doctor they see, maynot have to pay the 20 percent of thephysician’s bill that Medicare does notcover. This program is designed forpersons whose income is at or belowthe national poverty level and cannotafford the kind of private “Medigap”insurance that provides similar bene-fits. A related program, the SpecifiedLow-Income Medicare BeneficiaryProgram, is for persons whoseincomes are slightly higher than thenational poverty level. If you qualifyfor assistance under this program thestate is required to pay the monthlyPart B premium for you, but you areresponsible for Medicare’s deductiblesand coinsurance. We want to be surethat these two programs continue tobe offered in the future. The NationalKidney Foundation GovernmentRelations Division will notify membersof the NKF Legislative AdvocacyNetwork if any changes in these pro-grams are contemplated.

For additional information aboutstate programs that benefit peoplewith kidney disease or to learn howyou can join the NKF LegislativeAdvocacy Network, please visit theNational Kidney Foundation’s Web siteat: http://www.kidney.org/general/pubpol/ or call (800) 889-9559.

1 You can download the latest infor-mation on the 2002 poverty levelguidelines and Medicaid eligibility athttp://cms.hhs.gov/medicaid/eligibility/pov0102.pdf F

F

DolphChianchiano,JD, MPA

“Federal law requires thatstate Medicaid programs pay

Medicare costs for certain elderly and disabled

persons with low incomesand very limited assets.”


7

Agrowing number of people on dialysis are choosing to receive frequent dialysis

(also known as daily dialysis) toachieve better health and a better qual-ity of life. Dialysis centers and doctorsaround the country and the world arelooking at dividing the three normallylong treatment sessions into five or sixshorter ones. This makes sense—theless waste and fluid that builds up inyour body, the better you feel.

There has been a great deal ofresearch around daily dialysis and it isclear that shorter, daily treatmentshave important proven health benefits.1

Some of these health benefits include:

❖ Increased rehabilitation potential.

❖ Improved emotional health.

❖ Better control of high blood pressure. Some daily dialysispatients have been able to reduce or even eliminate bloodpressure medications.

❖ Improved nutrition. Patients have a better appetite with daily treatments.

❖ Feeling better during and aftertreatment. When smalleramounts of fluid are removed,people feel less drained and tiredafter dialysis, and symptomssuch as cramping during treat-ment are greatly reduced.

❖ Less stress on the heart becauseless fluid builds up.

❖ Fewer trips to the hospital asoverall health improves.

❖ Improved sleep and “restless leg”syndrome.

❖ Fewer dietary restrictions. If youtake waste out more often, youcan have more food and fluid.

If daily dialysis is so great, why isn’teveryone doing it? A big reason is thatMedicare and insurance plans usuallydo not pay for dialysis treatmentsmore than three times each week.Dialysis providers are not paid for theextra treatments, so few are able tooffer daily dialysis. Some dialysisproviders strongly believe in theimproved quality of life that daily dial-ysis provides and have chosen to offer

this option to their patients regardlessof payment.

Currently, there is a bill in theUnited States Congress, the KidneyPatient Daily Dialysis Act of 2001,which would extend Medicare paymentfor daily dialysis. Although additionaltreatments cost more, it is expectedthat overall costs to Medicare would belower as people on daily dialysis typi-cally need less medication and havefewer hospital stays.1

There are other barriers to dailydialysis as well. Daily dialysis that isdone at home means finding room forsupplies and the machine, more timespent in setting up and taking downthe machine, and finding someone,often a family member, willing to trainas your assistant. This can be astressful and demanding role for afamily member.

New technology is being developedwhich will help make all this easier. Anew kind of hemodialysis machinedesigned for daily home use has revo-lutionized daily dialysis. This machinemakes its own saline, heat cleans thedialyzer and tubing so they can beused for a month and is designed sothat the person on dialysis can oper-ate the controls without an assistant.This means less work setting up andtaking down the machine, less storagespace and more independence for the patient.

One individual had been onhemodialysis at a center in Seattle for12 years. He began dialyzing at homelast year and dialyzes five days aweek. He works full time and does histreatments at home after work. Hesolved the problem of getting a dialy-sis helper by offering free rent to atenant who was renting a room at hishouse in exchange for the person’s

assistance. He has noticed increasedenergy, better sleep and improved con-centration at work with daily dialysis.Now, he also goes to a gym and walksfor exercise. He does his own needlesticks for dialysis and has had noaccess problems. As for the increasedtime and effort, he says that two and ahalf hour treatments five days a weekfeels like less time and bother thanthree long treatments in the center. Asfor the increased responsibility, he says,“I’m not a transplant candidate, so dial-ysis is just what I have to do. I’m look-ing at what will give me the best healthfor the rest of my life and I just acceptit.” He plans to switch to the newermachine and will soon be doing treat-ment without outside monitoring or anassistant.

If you are interested in daily dialysis,but it is not offered in your area, thereare steps you can take. The mostimportant factor in making this optionmore widely available is funding. Letyour representatives in Congress knowhow you feel about the Kidney PatientDaily Dialysis Act of 2001 (H.R. 1759).Help them understand that daily dialysis helps to improve quality of life, physical functioning and emotion-al health.

1 Research supporting these points is summarized in “The Quality of Life and Economic Importance of DailyDialysis,” Policy Analysis Brief, H.Series, Vol. 1, No. 2, October 1999. Full brief can be viewed online atwww.projecthope.org/CHA/briefs.htm

About the Author:Mary Dooley, MSW/ACSW, is a socialworker at Northwest Kidney Centers,Home Dialysis Program in Seattle,Wash., one of the largest home pro-grams in the country. Ms. Dooley hasworked in dialysis nine years; the lastfour at Northwest Kidney Centers.

Dialysis Five or Six Times a Week Instead of ThreeBy Mary Dooley, MSW/ACSW

FF

“If you are interested

in daily dialysis, but

it is not offered in your

area, there are steps

you can take.”


8

Hemodialysis Pioneers Receive Prestigious Lasker AwardBy Lorette Murray, National Kidney Foundation

The fate of kidney patientshas undergone a revolution inthe last half century thanks to

two scientists who initiated incrediblebreakthroughs in the field ofhemodialysis. Dr. Willem Kolff and Dr.Belding Scribner’s discoveries virtuallytransformed kidney failure from adeath sentence to a survivable lifechallenge. This fall, Dr. Kolff’s and Dr.Scribner’s achievements were recog-nized with the 2002 Albert LaskerMedical Research Award, the nation’smost distinguished honor for out-standing contributions to basic andclinical medical research.

Dr. Kolff’s career in kidney dialysisbegan in 1938 while he was practicingat the University of Groningen Hospi-tal in the Netherlands. There heencountered a young man who wassuffering from kidney disease, andwatched helplessly as toxic wastebuildup slowly shut down the man’sbody and eventually claimed his life.

Moved by this event, Kolff set out ona quest to discover a way to artificiallyextract the poisons from a person’sblood. He knew this would change kid-ney failure from a fatal to a treatablecondition. He built upon experimentalresearch done in 1913 by Dr. JohnAbel of Johns Hopkins University.Using an anti-coagulant called heparinand filtration material made of sausagecasing, or cellophane, Kolff developed aprocess where toxins in the taintedblood traveled through the tiny poresin the filter to a rinsing fluid on the

other side. During the next severalyears, Kolff built four different artificialkidneys, none of which were reliableenough for clinical use. During WorldWar II, the Nazi occupation of theNetherlands made it extremely difficultfor Kolff to obtain the materials heneeded to continue his experiments.He persevered, and in 1945, Kolffachieved his first undeniable success.

Dr. Scribner’s discoveries have alsoplayed a central role in prolonging lifefor kidney disease patients. Whilepracticing at the University ofWashington, Seattle, Scribner wit-nessed repeated dialysis destroypatients’ veins and therefore renderhemodialysis virtually useless. Dr.Scribner devised a way to allow doc-tors to administer dialysis time

after time by inventing the shunt, a U-shaped device that is permanentlyinserted into a patient’s forearm tofacilitate repeated rounds of hemodial-ysis. Suddenly, the prognosis forESRD patients flipped from 90 percentfatal to 90 percent survivable.Scribner’s shunt also gave rise to thefield of kidney transplantationbecause it allowed potential recipientsto be sustained while they awaiteddonor organs.

Today, the artificial kidney remainsthe first—and still the only—methodin which a machine replaces a failedinternal organ. Kolff’s and Scribner’striumphs in the field of hemodialysiscontinue to touch millions of peopleacross the globe. F

F

Waiting for a TransplantBy Nancy Swick, RN, BSN, CCTC

Waiting for anything can be difficult. Thehardships and stress associated with

waiting for a life-saving organ transplant are dif-ficult for the candidate and his or her entire fam-ily. With this in mind, recipients and transplantprofessionals worked together to produce Waitingfor a Transplant, a book to provide support,insights and helpful tips on the waiting process.The book, published by the National KidneyFoundation, is dedicated to all transplant candi-dates who are hoping that they will find the courage andstrength to survive the waiting process and then flourish

with a successful transplant. Waiting for a Transplant starts from the very

beginning of the transplant process and con-cludes with the difficult topic of end-of-life deci-sions. Quotes from those who have lived throughthe waiting process are a valuable perspective.We hope that the friends and family of thosewaiting will find this book useful.

For a free copy of Waiting for a Transplantcontact the National Kidney Foundation at (800) 622-9010.

Dr. Willem Kolff lectures to students at SUNY Downstate.

9


Y O U K N O W

My name is Cate Lewis. Aschair of the Patient andFamily Council (PFC)

Executive Committee, I would like toencourage you to become a member ofthe Council. It was founded in 1995as a council of the National KidneyFoundation (NKF) that is dedicated tothe needs of patients and familiesaffected by kidney disease. Before Iexplain the purposes and goals of thePFC, I’d like to share some of my per-sonal background with you.

In 1971 and 1974, respectively, myfather and I were both diagnosed witha hereditary kidney disease calledpolycystic kidney disease (PKD). I wasin my second year of nursing schoolwhen my dad’s diagnosis was madeand we received the news that his kid-neys were failing. He began dialysistherapy soon thereafter. I remember

being unable to find much helpfulinformation in medical texts, andwhat I did find was extremely bleakand discouraging. Thus, I applied fora position at our hospital’s dialysisunit, hoping that my new job wouldallow me to learn as much as possibleabout kidney disease and its treat-ment. That was the beginning of myjourney. Today I remain committed tocaring for people with chronic kidneydisease. From my experience, I havelearned that education and the sup-port of family, friends and co-workersare essential to managing and copingwith this disease. I have been inspiredby the many people I have met; theyhave taught me how to deal with kid-ney disease and all its repercussions,

and most importantly, they haveshown me that a sense of humor anda positive attitude help to gain controlover one’s health and life.

Many of you reading this article mayjust be learning of your diagnosis.You may feel overwhelmed and con-fused by your new health status. Youmay be wondering how your diagnosiswill affect your future and your quali-ty of life. You may feel like you are ina bad dream or are experiencing aroller-coaster of emotions. These feel-ings are all perfectly normal as youadjust to the discovery of having achronic illness that requires lifelongtreatment. It might be comforting torealize that your health care team isprofessionally prepared to help youwith any lifestyle changes that youmay need to make. There will be somebumps in the road from time to time,

but with continuousimprovements in dialy-sis and transplant ther-apies on our side, mostare manageable.

Enter the Patient andFamily Council, whichis dedicated to “MakingLives Better.” The PFCprovides an opportunityfor patients and fami-lies to express ques-tions and concerns, getanswers and have theireducational needs met.With more than 22,000

members, it is the largest and fastestgrowing patient organization commit-ted to issues that affect both individu-als with kidney disease and their families. Through the use of the NKF publication, Family Focus, theNKF PFC Web site (http://www.kidney.org/patients/pfcindex.cfm), the many NKF educa-tional materials and direct telephone

communication, the Council willaddress your individual needs.

Needless to say, I feel very stronglyabout the value of membership in thePFC. Membership, which is free,includes a lifelong, home mailing ofFamily Focus, which provides you withinsight into the lives of others copingwith kidney disease, broadening yourunderstanding and awareness of yourown situation.

Similarly, the Web site offers a hostof valuable information on kidney dis-ease, including a message boardwhere questions can be posted andresponses made by both health careprofessionals and members of thePFC. There is also information on howto begin your own local Patient andFamily Council. The NKF has 51 affili-ate offices around the country, and bycontacting your local affiliate, you canfind out about how to help eitherbegin your own or join an existinglocal council. This will provide ameans for valuable support in yourown journey. For information aboutyour local affiliate visit the affiliatepage of our Web site at:http://www.kidney.org/general/affiliates/ or call (800) 622-9010.

Please sign up today. I know you willbe pleased with the abundance of sup-port and services available to you. Tobecome a member of the Patient andFamily Council you can either go to theWeb site at:http://www.kidney.org/patients/memberinfo.cfm or call (800) 622-9010for a membership brochure. By remain-ing involved in your care, being knowl-edgeable about your treatment choicesand continuing to learn as much aspossible, you will succeed in maintain-ing control of your life and health.

My best wishes and blessings to all of you. F

F

Patient and Family Council: The Value of MembershipBy Cate Lewis, RN, CNN

☞ Family Focus is available on the Web. To find

this issue or back issues of the newspaper, go to

www.kidney.org/patients/backissues.cfm

The Patient and Family Council Executive Committee: (from left ) Cate Lewis, Glen Hayashida, Mike Zecca, Chauncy Williams and Susan Belkin. Not pictured: AngieBuse, Stephanie Page, Julie Ann Shambra, GwendolynWoodloe and Bina George.

T H E M O R E


10

One Size Does Not Fit All in Dialysis Treatments

By Jonathan Lorch, MD, FACP

During the last 30 years inwhich dialysis has becomewidely available, much

progress has been made in the waydialysis machines and dialyzers aredesigned. The machines allow everypart of a treatment to be planned foreach person’s needs. Some on dialysisneed more fluid removed, while othersneed a dialyzer that can remove more of the waste products that build up intheir blood when their kidneys are notworking correctly. Many types of dialyz-ers are now available. They are made of different materials and sizes, and the membranes or fibers that fill themhave different size holes or pores tocontrol the amount of fluid (water) thatis removed.

In addition to the improvement inthe way dialyzers and machines aredesigned, drug companies have mademedicines which can improve yourblood count and help prevent the kindof bone disease common to people withkidney failure. To make sure that youget the benefit of all of these newimprovements, the National KidneyFoundation has developed guidelinesfor treatment that help your kidneydoctor and dialysis unit staff figure outwhether you are getting enough dialy-sis and the right kind of dialysis treat-ment. With all these improvementsyou would expect that there would befewer complications for people onhemodialysis and that they would behealthier and live longer than peopledid in the past. Unfortunately, that isnot true for many on dialysis.

Many people on hemodialysis havehypotension (low blood pressure) orcramps during some or all of their dial-ysis treatments, and may feel tired and

weak after finishing a treatment. Aboutone in every five people on dialysis dieeach year and the average person onhemodialysis spends 30 days a year inthe hospital. These facts have notchanged in years. If dialysis treatmenthas gotten better, why aren’t therefewer deaths and complications?

Think about the kidneys you wereborn with. Together, the kidneys receiveabout one fourth of the blood yourheart pumps. They work 24 hours aday, and at the end of each day theyhave cleaned 100 to 120 liters (quarts)of blood. Now, look at the usual dialysisplan. Treatments are typically threedays a week and each treatment lastsabout four hours. During these fourhours about 75 to 85 liters (quarts) ofblood go through the dialyzer. Thismeans that at the end of a week, nor-mal kidneys have worked on more than700 liters of blood while a plastic dialyz-er has worked on only 250 liters ofblood. What does this actually mean?

First, it means that the three to fivepounds of water that a person on dialy-sis gains over the day or two before atreatment must be removed in only fourhours. No matter how good a dialysismachine or a dialyzer may be, the factis that the body has a hard time adjust-ing to the removal of so much fluid.Normal kidneys remove water not longafter you drink it.

Second, the dialysis machine anddialyzer can not remove enough of thetoxic waste products your body makesto keep you feeling well and healthy.The four-hour treatment causes greatswings between blood values beforeand after dialysis, with some levels,such as the blood urea nitrogen (BUN),in your blood falling more than 70 per-cent and then quickly increasing to thelevel before dialysis. The way dialysisis usually performed is just not goodenough to remove the amounts ofwaste products that are carried in theblood, as well as in your cells and thefluid between the cells. What could bedone differently that could make dialy-sis better?

One way would be to spend moretime on dialysis. Unfortunately, addi-tional time is not as simple as it mightseem. The government only pays forthree, four-hour treatments a week foreach person on dialysis—no one canreceive more than 13 treatments amonth and have it paid for by Medicare.

However, even if your dialysis unitcould dialyze you for six or eight hours,five or six times a week, you probablywould not want to spend that muchtime in the dialysis unit—there wouldnot be much time to do anything else!However, there is another way to solvethis problem, and that is to providemore dialysis when it does not interferewith your life—at night, while sleeping.

About five years ago, Dr. AndreasPierratos of Toronto began dialyzingpeople eight hours a treatment, sixnights a week, while they slept. Thistype of dialysis is called nocturnalhemodialysis (dialysis at night). The keyto this treatment is how the dialysis isdone and that a person’s treatment isautomatically watched during the night.People on nocturnal dialysis are trainedas if they were to perform usual hemo-dialysis at home. They learn to sticktheir fistula themselves or connectthemselves with a catheter. When theyhave been completely trained in self-dialysis, they set the dialysis machineup in their bedroom, connect them-selves, start the dialysis and then go tosleep. Special computer software isused to send information from a per-son’s machine in a safe and private wayover the Internet to monitoring equip-ment. If the machine alarms, the per-son on dialysis and the dialysis staffhear the alarm at the same time.

Several things other than time andnumber of treatments make dialysis atnight different. First, the blood flow anddialysate flow are much lower thanstandard dialysis. Why? With six toeight hours of treatment, six nights aweek, there is no need to rush andmake the flows higher. Second, since the treatments are almost every day,the amount of fluid that needs to beremoved each day is quite low. In addi-tion, the fluid that needs to be removedevery day can be taken off over the sixconventional treatments. As a result,

“Though all the daily dialysisschedules that might work are not

clear, what does seem clear isthat the three sessions a week,

four hours a session, one-size-fits-all dialysis schedule may be rightfor some, but is certainly not best

for everyone.”

continued on page 11


11

To the Editor:

Hi. My name is Robert Waller. Iam 17 years old and have had seri-

ous kidney and bladder problems sinceI was nine months old. I was born with an

obstruction in my urethra which causeddamage to my kidneys. I have had at least 12

surgeries to try to correct the problems. My cre-atinine is 6.5. I was told by a number of doctorsthat I would not have a lot of energy or be veryactive with my blood levels the way they were. Yet, Ihave plenty of energy from taking my medicationand catheterizing myself. As a result, I am able todo many, if not all, of the things that I love to do. Irace BMX Bikes, and just last weekend, at my sec-ond race, I placed 6th at the Western RegionalChampionship Series Race.

I would like to pass on this story to otherchildren to give them hope and to encour-

age them not to give up on theirdreams…

Sincerely, Robert William Waller

To the Editor:

While visiting with my nephrolo-gists, I had the good luck of reading a

copy of your newspaper.

I found it very informative and interest-ing, and I read it cover to cover.

Thank you, Roasario M. Aguinaldo

Thank you from Russia

Dear Editor,

Thank you for the spring 2002 FamilyFocus that I received. It's very interesting anduseful for me. Thanks again.

All the best,Fedor MedvedevMoscow, Russia

To the Editor:

I have a three year old son who was born with apartial blockage of his post urethral bladder valves. He

celebrated his two year kidney transplant anniversary onAugust 29, 2002, and is doing well. We had heard that this condi-

tion was not considered hereditary. I gave birth to a premature babyboy on August 5, 2001, we found out he had the same blockage. We and

the doctors did all we could to try to help him but we lost the battle. Butin another way, we won, for we now know that this has to be inherited. Isay we won because our loss will push research for the connecting genethat causes this condition and maybe save other children before thedamage is done. If you can connect me with other families that have

been through this, I would appreciate it.

Alicia Ary

If you would like to contact Ms. Ary, write to: Family Focus, 30 East 33rd Street

New York, NY 10016

To the Editor:

I wanted to send out a quick noteto let you know how much I enjoy

reading Family Focus. As a hemodialysispatient awaiting a transplant, I appreciate the

learning opportunities as well as reading abouthow other patients deal with this condition.

Thank you, Joan Mitchell Humrich

“Dialysis Man”JMH Jan. 2002

low blood pressure or cramps during a treatment are rarelyproblems for those on nocturnal hemodialysis. Lab valuesare also very different. It is not unusual for some peoplewho had a creatinine of 12 or 14 and a BUN of 80 beforetreatment to have a creatinine of four to five and a BUN of35 after doing nocturnal hemodialysis. The real question is:does all of this dialysis make a difference?

We do not have enough experience to know whether youwould be healthier or live longer on this type of dialysis. Butwe do know that those on this form of treatment feel better.It should be said that self-dialysis six to eight hours a night,

six nights a week may not be the only possible way to dothis. For example, those who are on conventional homehemodialysis may have their home assistant help them dia-lyze more often. Though all the daily dialysis schedules thatmight work are not clear, what does seem clear is that thethree sessions a week, four hours a session, one-size-fits-alldialysis schedule may be right for some, but is certainly notbest for everyone.

About the Author:Jonathan Lorch, MD, FACP, is Associate Professor of ClinicalMedicine at New York Presbyterian Hospital-Weill MedicalCollege of Cornell University. He is Director, MedicalInformatics and Director, Nocturnal Dialysis at The Rogosin Institute.

One Size Does Not Fit All…continued from page 10

MAILBOX

FF

12


Your Life, Your Body, Your Treatment — YOUR Choice!By Bobbie Knotek, RN, BSN, CNN

During my 27 years as a dialy-sis nurse, I have heard thesewords many times:

• “I don’t want to learn anything. I just want to show up and get mytreatment.

• “Why should I learn how to do any-thing for myself? That is what thenurses and technicians are paid to do.”

If you have ever spoken thesewords, here are three reasons tochange your “tune”!

Reason # 1 — It is Your Life

You and only you choose how to livewith kidney failure.

When people feel they have lost con-trol over their lives, they may makedangerous choices trying to regaincontrol. They may choose not to followtheir diet or take their medicines, togain more “water weight” than is safeor to shorten or miss dialysis treat-ments or clinic appointments. If youhave made poor or dangerous choicesin the past, it is never too late to starttaking better care of yourself.

Some people let kidney failure takeover their world. They choose to buildtheir lives around dialysis, ignoringfriends, interests and hobbies. Dialysisdoes use up about 12 to 15 hours aweek, but why should it be the centerof your attention for the remaining 153hours as well? Spend those 153 hoursdoing the things you have alwaysenjoyed such as visiting friends, work-ing on hobbies, volunteering, or goingto church or synagogue.

Many people see dialysis or trans-plant as a way to stay healthy and liveas normally as possible. They choose totake charge of their kidney failure by:• Learning all they can about kidney

failure and the treatment they are receiving.

• Asking questions when they needmore information.

• Participating in scheduled teamcare planning meetings.

• Trying to make choices about diet,fluids, medicines and treatmentthat will keep them as healthy as possible.

Which of the above situationsdescribes how you have chosen to liveyour life? Do you need to think aboutmaking better choices?

Reason # 2 — It is Your Body

You only get ONE body in this life. Ifyou do not take care of it, who will?Choose to take better care of yourbody today!

Go to every dialysis treatment andstay the prescribed time. Every minutecounts! When your kidneys worked,waste products were cleaned fromyour blood 24 hours a day, seven daysa week (a total of 168 hours or 10,080minutes). Now that your kidneys arenot working, the only time waste prod-ucts are cleaned from your blood isduring the 12 to 15 hours (or 720 to900 minutes) you are on dialysis.

Memorize your medicines—learn thename, reason, dose and time for everymedicine you take.

Know the results of your lab workand how they compare to normal labwork. Learn how your choices (goodand bad) affect your lab work.

Protect your heart and blood vesselsby choosing to gain less weightbetween treatments. If you usuallygain more than 2 1/2 to 3 pounds (1 to 1 1/2 kilograms) between treat-ments, you are hurting your heart.Your heart, like a water balloon, isonly supposed to hold so much fluid.When it has to stretch to hold morefluid, your heart gets weaker andweaker until the heart muscle is per-manently damaged. Learn how to keeptrack of what you drink, then controlthe amount of fluid you drink.

Reason # 3 — It is Your Treatment

Your treatment (hemodialysis, peri-toneal dialysis or a transplant) iskeeping you alive—it is your personalgift of life. Life on dialysis or life with atransplant may not always seem like agift, but before these treatments wereavailable, kidney failure was a deathsentence. As recently as the 1960’sand 1970’s many people died of kidneyfailure because there were not enoughdialysis machines. I urge you to takethe gift of life you have been given andmake the most of it.

One way to do this is to learn self-care. Do not be confused—self-care isnot self-dialysis. Much of self-care islearning about your dialysis machineand your treatment. You can choose to

learn a little or learn a lot—it is up toyou! To get started, ask your nurse toteach you one or more of these self-care learning steps:

• Tear tape strips to be used on your needles.

• Know your dry weight and howmuch fluid should be removed.

• Learn how and why dialysis needlesare “rotated” (moved to differentspots on your fistula or graft) eachtreatment. Let your nurse or techni-cian know which areas on yourgraft or fistula are “due to bestuck.”

• Know the areas on your fistula orgraft where dialysis needles shouldnever be “stuck.”

• Learn which needle attaches to the“pull” or arterial tubing (the tubingtaking your blood to the dialyzer)and which needle attaches to the“return” or venous tubing (the tub-ing returning the blood to yourbody).

• Clean your graft or fistula with theantibacterial solution before theneedles are put in.

• Learn about the dialysis machineand what the machine alarms are “saying.”

• Learn your normal venous and arte-rial pressures.

• Learn your desired and usual bloodflow rates.

• Take and write down your tempera-ture, blood pressure and weightbefore and after dialysis.

• Take and write down your bloodpressures during treatment.

• If your facility reuses dialyzers:- check the dialyzer to make sure it is yours.

- check to make sure all of thedisinfectant has been rinsed from your dialyzer.

• Ask the technician or nurse to showyou the correct set-up of themachine.

• Insert your own needles with help(believe it or not, many patients sayit hurts less if you do it yourself).

I encourage you to take the time tostop and think about the choices youhave made in your life and the choicesyou will make in the future. I respectthe fact that it is your life and how youlive it is your choice, but I sincerelyhope you will make choices that willhelp you live longer and feel better inmind, body and spirit. F

F

13

T R A N S P L A N TRAANSP

N

LA

TN

RT R A N S P L A N T

SPLANT

T here has never been a timein the history of transplan-tation that better shows

the connection between medicineand new research in science. In fact,the following improvements are sig-nificantly changing the way all of usunderstand and practice transplan-tation medicine.

New Drugs and Biologicals. Inthe last several years, a whole newseries of drugs and engineered bio-logicals (such as laboratory-createdproteins) have been approved by theFood and Drug Administration foruse in transplants. The significanceof this is that we now have theopportunity to select from a varietyof immunosuppressive treatments.Due to current research, there is apossibility that in the future therewould be no need to use steroids forthe treatment of organ rejection,which would eliminate the steroids’long-term toxic effects on bones,skin, fat cells, glucose control andblood lipids. In addition, there maybe treatments for chronic kidneyrejection, ways to reduce the long-term cancer risks that can becaused by some of the medicationsand even elimination of the need fordrugs to deal with rejection of thetransplant. These exciting advancesare already being translated intofewer rejection episodes, infectionsand hospital admissions, while giv-ing better long-term transplantorgan function and survival.

Understanding Immunosup-pression. Probably the single mostfrustrating thing in transplantationfor over 40 years has been the lackof a reliable test to measure howmuch immunosuppression eachperson needs. Of course, we mea-sure levels of the drugs regularlyand have improved guidelines todetermine the right amounts ofthese drugs to give. But, the truthhas always been that these mea-sures are different for everyone. Inthe end, making decisions to changea drug dose on any given day isalways a matter of physician experi-ence and judgment. As a result, wehave to accept the reality that somerecipients are on too much immuno-suppression and some are on too lit-tle. The results of the HumanGenome Project, which maps theentire human body according to itsgenes, make possible a whole new

understanding of how genes deter-mine the way cells work. Thisknowledge will soon help us learnbetter ways to measure the rightamount of anti-rejection drugs foreach person. If this research is suc-cessful, there will be a dramaticimprovement in safety and trans-plant organ survival.

Cell Transplantation. For manyyears the word “transplantation” hasusually meant whole organs likekidneys, livers and hearts. However,the working definition of transplan-tation is quickly growing to includetransplantation of cells. Rather thanreplacing whole organs, researchersare studying the replacement ofdamaged tissue with healthy tissue.This sort of transplant can help thebody repair itself. For example,recent advances in the transplant ofpancreatic islets have promised anentirely new therapy for insulin-dependent diabetics. Research alsoincludes the use of cells from thebrain to treat people with Parkin-son’s disease, cells from joints totreat arthritis, muscle cells to treatdiseases like muscular dystrophyand cells from blood vessels to treatpeople after heart attacks or strokes.

Stem Cells. A special type of cell,called an embryonic stem cell, ispresent during early development ofthe fetus. Embryonic stem cellseventually form all of the body’s tis-sues and organs. More recentlyanother type of stem cell was discov-ered in adults. Scientists think thatthese adult stem cells are probablyimportant in keeping tissue healthy.Thus, fetal stem cells create the tis-sues during development and theadult stem cells are part of theprocess to keep them healthy duringadult life. A new concept is thatthese stem cells could be transplant-ed to help get tissues back to healthand cure kidney failure, heart dis-ease and various nervous systemdisorders including spinal cordinjuries, diabetes and muscular dys-trophies. While the incredible possi-bilities of stem cell transplantationare obvious, it is important toremember that this is more than adecade away from any kind of realmedical treatment. Many questionswill need to be answered throughresearch before the use of stem cellsbecomes a reality.

Xenotransplantation. One wayto address the organ shortage is tofigure out a way to use animalorgans and tissues for human trans-plantation. This type of transplant iscalled xenotransplantation. Themost practical nonhuman animalsource at the present time is the pigbecause it is the right size andshares a similar physiological make-up with humans. Another advantageof the pig is that it can be geneticallychanged to make its organs better fithumans. Unfortunately, the firstefforts at kidney and heart trans-plantation with pig organs have notbeen as successful as had beenhoped. However, progress has stillbeen remarkable. Only a few yearsago, the idea of a pig organ workingafter transplantation would be mea-sured in just minutes to hours. Nowthe pig organ has routinely workedfor one month or longer in nonhu-man primates. Another major issuehas been the possibility of getting anew infection from the pig throughxenotransplantation. There remainsmuch more to learn about this typeof infection as a potential threat.Despite negative press in the lastseveral years, xenotransplantation iscontinuing to make progress. Myprediction is that a successful pigcell transplantation therapy, withislets for diabetes for example, willhappen long before a similar suc-cess is reported using any humanstem cells.

Gene Therapy. It is fitting to fol-low a discussion of xenotransplanta-tion with one of gene therapy. Therewere high hopes for success in bothfields because they were based onsound science principles. Unfortu-nately, serious problems developedalong the way. However, like xeno-transplantation, a lot of excitingprogress has been made. With thecompletion of the first stage of theHuman Genome Project, scientistsare trying to better understand howgenetic programs make cells func-tion. Learning to change thesegenetic patterns could improve thetreatment of many medical prob-lems. Though many of the firstefforts in research are being made incancer treatment, the possibleeffects of gene therapy on organ andcell transplantation are huge.

In conclusion, the reality of trans-plantation today has been greatly

Innovations in Transplantation: Some Thoughts on the Present and Future

By Daniel R. Salomon, MD


continued on page 14

14


Innovations in the Treatment of Pediatric Dialysis PatientsBy Barbara Fivush, MD

Over the last five years there have been many advances inmedicine that have changed

the care that children on dialysisreceive. These changes include notonly new medications but alsoimprovement in dialysis equipment.

Recently a new peritoneal dialysiscycler machine was introduced. Thisnew dialysis cycler machine is smallenough for children and has a smalldata card (the pro card) within it. Ifchanges need to be made in the dialy-sis treatment plan, the doctor at theclinic can program this data card. Ifthe child is dialyzing at home, thereprogrammed card is simply placed

into the dialysis machine and the pre-scription change is made. Also, thedata card is able to record informationabout dialysis treatments over severaldays, including ultrafiltration, time ondialysis, fill volume, drain volume,daytime exchanges and more. Thismeans that families do not need torecord this information by hand.Having the right information will alsoallow physicians to improve the dialy-sis treatment plan.

There have also been advances inhemodialysis equipment that havehelped children. Children may beabove their ideal or dry weight whenthey come to the hemodialysis unit fortreatment. When extra fluid is quicklyremoved, they may develop cramping,decreased blood pressure and nausea.The use of a newly developed devicecan help with these problems byclosely checking and helping controlthe rate of fluid removal from children

during their treatment. This can helpmake sure the needed fluid isremoved without causing the childdiscomfort.

Children on hemodialysis require anaccess. Over the last several years,studies have shown that wheneverpossible, fistulas or surgically createdgrafts are preferred to catheters ashemodialysis accesses for both adultsand children. These accesses need to be monitored carefully to be surethere is no area of narrowing and that the access is operating efficiently.New devices using ultrasound technol-ogy are becoming very helpful for this monitoring.

Medications are an important partof treatment for most children ondialysis. One medication commonlygiven to children on dialysis is erythropoietin. Erythropoietin is ahormone that is naturally producedin the kidneys. This hormone stimu-lates the bone marrow to produce redblood cells and keeps people frombecoming anemic. In those on dialy-sis, the damaged kidneys cannotmake this hormone naturally, and itmust be given to them. Those onhemodialysis receive this drug withtheir treatments, and people on peritoneal dialysis receive the drug byinjection under the skin.

Recently, a new form of this hor-mone has been developed that actsfor a longer period of time. This formof the hormone stays in the blood-stream longer and makes more redblood cells over time. Studies withthis new form of the hormone inadults have shown that it is well tol-erated and effective. Early studies inchildren who are on dialysis havealso been very promising, and it isfelt that this long-acting hormone willbe very effective for them as well. Itsuse will decrease the number of injec-tions needed by children on dialysisand could result in better control of their anemia.

In addition to erythropoietin, chil-

dren on dialysis usually need irontherapy. Iron taken by mouth is notalways effective, and many childrenon dialysis (particularly those onhemodialysis) need to have iron givento them through a vein (intravenous).A new form of intravenous iron willsoon be tested for use in children.

In summary, there are manyadvances in medication and equip-ment that will continue to improvedialysis for children on bothhemodialysis and peritoneal dialysis.These advances include:

Over time, these advances shouldimprove the quality of care the chil-dren on dialysis receive and result inbetter long-term outcomes.

“Over the last severalyears, studies have

shown that wheneverpossible, fistulas or surgically created

grafts are preferred tocatheters…”

1) A new peritoneal dialysis cycler with the pro card

2) A device to regulate fluid removal in hemodialysis patients

3) Ultrasound monitoring ofhemodialysis access

4) Long-acting erythropoietin

5) A new intravenous iron preparation

FF

shaped and advanced by the growthmade in science over the last decade.The innovations are giving us wonder-ful opportunities to make immuno-suppression safer and more effective.At the same time, continued scientificadvancements give us importantinformation about health and dis-ease, setting the stage for future ther-apies based on cell transplantation,stem cells, xenotransplantation andgene therapy.

About the Author:Daniel R. Salomon, MD, is Director ofthe Center for Organ and CellTransplantation at the ScrippsResearch Institute and Scripps Healthin La Jolla, Calif.

Innovations in Transplantationcontinued from page 13

FF

15


You may not think there is anyrelationship between exerciseand dialysis, but just wait

and see. You should exercise a mini-mum of three times a week. Dialysishappens three times a week. You usu-ally go to a gym for a period of time.You have to go to a unit to dialyze.Why not combine the two?!

Starting an exercise program byyourself can be difficult, especiallywhen you are not feeling well. Anexercise program at a dialysis unitoffers the best of all the worlds—youare already there and you can havehelp if you need it. There are peopleavailable to assist you if you have any problems.

To give you an idea of what kind ofexercise can happen at a dialysis unit,here are some of the exercise pro-grams that different units are puttinginto place in dialysis centers acrossthe country.

At a unit in Virginia, a physicaltherapist first screens every person ondialysis to identify any potential prob-lems for starting an exercise program.Then, each individual is given his orher own individual exercise programwith personalized fitness goals. Exer-cises take place either before or dur-ing dialysis treatments and mayinclude cycling, walking on a treadmilland flexibility and strength trainingwith ankle and hand weights.

In a St. Louis facility a separateexercise room—complete with aweight machine and an instructor forpatients—is available to use beforedialysis. Parties and awards are givenfor those who obtain their goals as amotivation. People on peritoneal dialy-sis are instructed in a walking pro-gram and have an exercise counseloravailable to answer questions.

A unit in Wisconsin has a five-phaseexercise program that everyone ondialysis is invited to join. The firstlevel starts with an introduction topain and stress management, followedby stretching exercises. The thirdphase focuses on improving strengthand function at home. The fourthphase teaches about increasing car-diovascular (heart) strength to

F I T N E S SExercise and Dialysis—An Awesome Combination!!!

By Tiffany Shubert, MS, PT

improve the ability to walk and getout in the community. Finally, duringthe last stage of “health enhance-ment,” people focus on staying strongand healthy to prevent some of theproblems associated with dialysis.

All over the country dialysis unitsare starting to offer some form ofexercise during dialysis treatmentsessions. From Massachusetts toOhio to Tennessee to Arizona, you willfind exercise rooms, bikes and exer-cise physiologists and physical thera-pists helping people on dialysis withthese new exercise programs. If all ofthis sounds good to you, here aresome ideas that you can use to helpyour unit get physical!

When someone decides to take a“dose of exercise,” it is more like medicine than you think. Similar toprescribing medicine, there is muchto consider when designing an exer-cise program, including the frequencyof exercise, the intensity of dosage,time or duration of dosage and thetype of exercise that best suits you.This is known as the “FITT” method of prescription—Frequency, Intensity,Time, Type.

The frequency most commonlyrelated to benefits of exercise is threeto five times per week. As mentionedearlier, this is in perfect harmony withthe frequency of dialysis treatmentsprescribed for you. Time is always aconcern for anybody wishing to exer-cise, but we can all squeeze in 15minutes before dialysis, 15 minutesafter dialysis and, certainly, 15 min-utes during dialysis.

What about intensity? This is usu-ally the hardest for people. It is wrongto think that you have to be out ofbreath and working really hard tobenefit from exercise. All you need to

do is get yourheart rate upslightly and beable to talk without too much trouble. That is theintensity you should plan on whenstarting an exercise program. For thosewho are just beginning a program forthe first time, start with an exercisethat seems really easy. Muscles do notbecome weak and fatigued overnight,and they are not going to get strong orenergized overnight either. Make sureto pace yourself!

When we think about time, we aretrying to decide how long your exerciseshould last. Setting a goal of complet-ing 30 to 45 minutes of continuousactivity should be on everybody’s list.The only way to cheat your waythrough exercise is by not doing it atall. To start your exercise program,pick an activity that you enjoy and doit for 10 minutes before you start dialy-sis, 10 minutes during and then 10minutes after. When you break it upinto small lumps of time, it is easy toreach a goal of 30 to 45 minutes!

So, what are our options? Thequestion is “what do you want to do?”Aerobic exercises consist of activitiesthat keep your heart rate up. Howabout taking walks before and afterdialysis, taking the stairs rather thanthe elevator, doing some windowshopping in the gift shop or nearbystores or even learning how to juggle?Or, if you want to increase strength,ask your dialysis staff about possiblelight-weight training, the use of exer-cise rubber bands or even simply flex-ing and holding your muscles for afew seconds and then releasing. If youare having problems with your joints,maybe you need to start stretchingmore often. Stretching can be com-pleted before and after dialysis to helpget rid of that muscle stiffness thatkeeps you from reaching into cabinetsabove your shoulders.

The options are out there and thechoice is yours. Tell your staff thatyou want to start exercising and finda friend with whom you can exercise.Everything is more fun when you canshare it with others.

“For those who are just

beginning a program for

the first time, start with

an exercise that seems

really easy.”

FF

16

NON-PROFIT ORG.U.S. POSTAGE

PAIDShakopee, MNPermit No. 211

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P O E T R YCORNER

LifeBy Joshua Rosado

All of a sudden I woke up older, And asking myself

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This is the secret of life itself, To know what is truly important,

And that we are here on borrowed time.Life is not yours, nor mine,

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Return to his loving arms. FF

H e m o d i a l y s i s a n d N u t r i t i o n Wo r d S e a r c h

Calcium

Calories

Dialysis

Dialyzer

Erythropoietin

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Nightly

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Reuse

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K I D N E Y Y D G J V K D B S

and the National Kidney Foundation

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