Published by the for transplant recipients of all organs and their families.© Copyright 2006National Kidney Foundation, Inc. ISSN# 1524-7635

01-70-1111

Transplant Chronicles is a Program of the National Kidney Foundation.Spring/Summer 2006Volume 13, Number 2

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We all have physical “weaknesses”that come from our transplants. Someof us get tired easily, some are vulner-able to infection, most of us are thin-skinned from prednisone use. Sowhere do we draw the line at what wecan and will do for others? The answermay be farther ahead than you mighthave thought.

I’m a 51-year-old two-time kidney andpancreas recipient. Yes, that’s two kid-neys and two pancreata, spread overthree surgeries dating back 16 years.I’ve been able to do many things over

the years since transplantation: skiing,surfing, auto racing, attending the U.S.Transplant Games (twice), and a fairamount of “spreading the word.” Sowhen Hurricane Katrina hit last August29, I wondered if I could help the vic-tims and still take care of myself. Sowhat’s an immune-compromised vol-unteer to do? I decided to take theplunge.

I signed up with the American RedCross and I was approved to be sent“south” in the “second wave,” sometwo to three weeks after the very firstdeployment. We were told to pack witha “camping trip” in mind, take alongsnacks/food for several days, and tocount on little contact with family,friends and the outside world. We weretold to take our cell phones, but beaware that service might be limited—and—as far as health concerns, wewere told to get tetanus shots!

I made use of the time before beingdeployed by taking Red Cross first aidand CPR training. And of course Iwent to see my doctor. She had noproblems with me working with the

Red Cross and checked my tetanusrecord. I made sure to take four weeksof meds (just in case) and plenty ofitems to stay clean. I packed gloves,sanitary wipes, and enough clothes forseven-plus days. I needed to be able tocarry everything I took along. I endedup carrying a duffle bag and a sleeping

In this issue ofTransplant Chronicles

➢ Volunteering During the Hurricanes.....................Page 1

➢ Editor’s Desk............................Page 2➢ Books.......................................Page 2➢ Risk for Falling—Part I.......... Page 3➢ Advice Myths/Facts ................ Page 4➢ Let Your Voice Be Heard.........Page 6➢ Kidney Camps ........................ Page 7➢ Book Chat............................... Page 7➢ Transplant News Digest...........Page 8➢ Gastrointestinal Disturbances..Page 10➢ Medicare Part D.................... Page 11➢ Snack Attack......................... Page 13➢ Truth About False Teeth ....... Page 14➢ Inhaled Cyclosporine ........... Page 15➢ Dinner Date ...........................Page 16

Continued on page 12

VOLUNTEERING During the HurricanesBy Michael Garrett

MOST OF US IN THE TRANSPLANT RECIPIENT RANKS ARE PRETTY THANKFUL. WE’VE BEEN GIVEN

ANOTHER SHOT AT LIFE AND ARE INTERESTED IN SHOWING OUR THANKFULNESS BY SPEECH AND DEED. BUT HOW FAR CAN

WE GO WITHOUT PUTTING OURSELVES IN PHYSICAL DANGER?

editor’s desk editor’s desk

DEAR READERS: When my Mom became stricken with kid-ney failure, my faith was shattered. I didn’tunderstand how such a thing could happen.I became angry. Therefore, my mom anddad imparted some words of wisdom—atthe time I felt little consolation. However, Icame to understand their words in time:

“Faith, is believing that you have thecourage to move forward in times when youfeel like retreating. Faith, is recognizing thatyou will get through the tough times and

Laurel Williams,RN, MSN, CCTCEditor-in-Chief

2 Transplant Chronicles, Vol. 13, No. 2

become a stronger person. Faith, is hold-ing onto a vision that is yet to be seen.Faith, is making each day count and living life with all its wonder and chal-lenges. Faith may waver from time totime, but the light of hope never dims…”

I turned 15 yesterday and I have faith thatmy Mom will be here when I turn 50.

Joshua Goldberg, on behalf of the Editorial Board: transplantchronicles@kidney.org

Transplant Chronicles is published by the NationalKidney Foundation, Inc.

Opinions expressed in this publication do not necessarily represent the position of the National Kidney Foundation, Inc.

Volunteer Editorial Board:Laurel Williams, RN, MSN, CCTCEditor-in-ChiefUniversity of Nebraska Medical CenterOmaha, NE

Megan A. Tichy, RDSan Francisco, CA

Dean S. Collier, PharmDUniversity of NebraskaOmaha, NE

Jack FassnachtChicago, IL

Joshua S. Goldberg, teen editorEncino, CA

Shirley Schlessinger, MDUniversity of Mississippi Medical CenterJackson, MS

Victoria L. Schieck, RN, BSN, CCTCUniversity of Michigan Health SystemAnn Arbor, MI

Debra J. Tarara, RN, BSN, CCTCMayo ClinicRochester, MN

Rebecca Hayes, MSWUniversity of Wisconsin HospitalMadison, WI

Chris L. Wells, PhD, PT, CCS, ATCUniversity of MarylandBaltimore, MD

Jim Warren, MSTransplant NewsBaltimore, MD

Editorial Office:National Kidney Foundation, Inc.30 East 33rd Street, New York, NY 10016800.622.9010, 212.889.2210www.kidney.org

Editorial Director: Cathy Paykin, MSSW

Executive Editor: Gigi Politoski

Managing Editor: Sara Kosowsky

Publications Manager: James McCann

Design Director: Oumaya Abi Saab

Editorial Assistant: Helen C. Packard

transAction Manager: Erin Kahle

Josh Goldberg, the Transplant Chronicles teen Editor is our Guest Editor for thisissue’s message.

—Laurel Williams, RN, MSN, CCTCEditor-in-Chief

■ Taking Control: Money Matters for People with Chronic Kidney Disease

This new 72-page book talks about money issues for people with kidneydisease. It covers in depth dialysis and transplantation issues, Medicare,private insurance and planning for savings and the future.

■ Issues for Today’s Transplant Recipients

This new 55-page book includes recipients’ thoughts and views onMedicare, depression and advocacy. Based on telephone and Web discus-sions with recipients from around the country, this book is written for recipients by recipients and professionals.

BOOKS,books and more books

>> See page 6 for this issue’s Recipient Voices article.

For free copies of these books, call the NKF Information Center at800.622.9010 and give your name and address to the InformationSpecialists who answer. Or, e-mail info@kidney.org with your nameand address and the names of the books you would like sent.

>> Read about forming an Online Transplant Book Club on page 7.

o

■ Reducing Cancer Risk After Transplantation

This new 12-page booklet discusses why recipients have an increased riskfor certain cancers, symptoms to watch for and protective measures recipi-ents can take to minimize risks.

Transplant Chronicles, Vol. 13, No. 2 3

A fall is an unexpected event inwhich you hit the ground or some-thing on a lower level such as a chairor step. As you grow older, your riskof falls substantially increases.Individuals with medical conditionssuch as diabetes, stroke and transplan-tation have a higher risk for falls thentheir age-matched “healthy” counter-parts. The most common injuriesinclude hip fractures, head injuries, as well as rib and wrist fractures.

There are several naturally occurringchanges with aging that are associatedwith chronic illness that contribute tothe risk of falling. There is a decreasein muscle mass, particularly the mus-cle fibers that should contract quicklyto adjust for loss of balance. Thejoints and muscles are less flexible,which decreases the quality of yourposture and movement. Finally, adecrease in the sensation in the feetand ankles make it more difficult tomaintain your balance. A decrease inquality of vision and mental function,chronic illness and some commontransplant medications are also associ-ated with falls.

Here are some basic questions thatcan help determine your risk forfalling. You need to be honest withyourself. It is a good idea to asksomeone close to you to answer thequestions about you:

■ CAN you stand on one foot withoutholding onto something for at least20 seconds?

■ CAN you stand up from a standardheight chair without using yourarms?

■ CAN you walk heel-to-toe in astraight line without loosing yourbalance?

■ CAN you walk in a straight pathwhile turning your head side-to-sidewithout drifting or losing your balance?

■ IS your vision clear, even when youturn your head side to side?

■ CAN you walk at least 250 feet in one minute?

■ CAN you tie your shoe while standing?

■ CAN you sit or stand up quicklywithout experiencing lightheaded-ness or dizziness?

■ DO you take less than four medica-tions daily?

■ ARE you free from fear or anxietyabout falling?

■ CAN you fully participate in all the activities you normally enjoy without fear of falling?

If you answer no to more than one ofthese questions, you probably have anincreased risk of falling. Talk to yourdoctor to obtain a referral to a physi-cal therapist in order to have a com-plete assessment of your balance,endurance, flexibility and strength todetermine your risk of falling andaddress your deficits.

Besides the changes that are occurringto your body there are factors withinthe environment that are also associatedwith falls. Most falls occur within thehome, so now it is time to take a lookaround your home. This assessment isalso best done by someone who doesnot live in your home, in order to havean objective assessment of your envi-ronmental risk.

■ DO you have to walk around furni-ture or other objects when you walkthroughout your home?

■ DO you have throw rugs on thefloor?

■ ARE there papers, magazines,books, shoes, blankets or otheritems on the floor?

■ DO you have to walk over oraround extension cords or wiresfrom lamps or telephones?

■ ARE the floorsurfaces crackedor torn? Do theyhave missing or loose tiles?

■ ARE there objects on the steps orstairs?

■ ARE there steps that are broken or uneven?

■ ARE the stairs poorly lit?■ IS there only one light switch

within your staircase?■ ARE your stairs missing a stable

hand railing along the entire lengthof the steps?

■ DO you often have to climb onto astool to get things out of yourkitchen cabinets?

■ DO you use a chair or step stoolwithout a handle to reach objects ontop shelves?

■ DO you have to get out of bed toturn the light on or off?

■ IS the path from your bed to thebathroom unlit at night?

■ IS your tub or shower stall arealacking safety grab bars?

■ IS your tub or shower surface lacking a non-slip mat?

If you answer yes to these questionsyou are at further risk for falling inyour home. It is important to identifythe common household risks andhave them repaired. If you do nothave family members who can helpyou, you may be able to find assis-tance through community programsor churches—or, if you have thebudget, knowledgeable professionals.You can also check with your doctor,local physical therapy program orsocial worker to help you in findingassistance in home safety.

Part II of this series will be in the nextissue of Transplant Chronicles. T

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Are You at Risk for Part I

By Chris L. Wells, PhD, PT, CCS, ATC

L LI N G?

F A

4 Transplant Chronicles, Vol. 13, No. 2

It’s bad enough that no one seems tobe taking the same combination ofmedicines as me. What’s worse isthat I’m not sure whether to believeall the well-intentioned advice Ireceive from my fellow recipients.

To try to get the right answers foronce and for all, I asked some trans-plant and medical specialists to com-ment on the following 10 pieces of

“advice” I have received over theyears. Before reading their responsesbelow, why not test your own knowl-edge of post-transplant care by decid-ing for yourself whether each of thefollowing statements is good advice-or a myth. If you get all 10 correct,you can give me advice any time.(But I may still check with my trans-plant office—always good advice forany transplant-related question!)

1. “Transplant recipients should avoid eating raw seafood.”

2. “It is safer to drink bottled water than tap water on airplanes.”

3. “Avoid grapefruit and grapefruit juice, but oranges and orange juice are OK.”

4. “Take Tylenol® (acetaminophen) when needed, but not aspirin.”

5. “You should pre-medicate before every visit to the dentist.”

6. “Transplant recipients should not donate blood.”

7. “Avoid touching doorknobs because they have germs.”

8. “Don’t get flu shots because they can make you sick.”

9. “You can catch disease from changing cat litter without a box lining.”

10.“You shouldn’t take all your medications at the same time.”

11. BONUS “ADVICE”: “In addi-tion to an organ, you might acquire some of the personality traits of your donor!”

“DON’T EAT GRAPEFRUIT After Changing the Cat By Jack Fassnacht, kidney recipient

Jack Fassnacht

AS A TWO-TIME KIDNEY TRANSPLANT RECIPIENT, THE MORE I TALK TO OTHER SOLID ORGAN TRANS-PLANT RECIPIENTS, THE MORE CONFUSED I GET ABOUT WHAT TO DO AND WHAT NOT TO DO TO KEEP MYSELF HEALTHY.

1. “Transplant recipients shouldavoid eating raw seafood.”

Good advice. Transplant recipientshave weakened immune systems, sothe risk of food poisoning which canlead to an infection is greater. It isgood advice to avoid raw fish, oys-ters, shrimp, sushi and refrigeratedsmoked seafood unless it is an ingre-dient in a cooked dish such as acasserole. Canned fish such as tunaor salmon can be eaten safely.

2. “It is safer to drink bottled waterthan tap water on airplanes.”

It can’t hurt, and might help, to fol-low this advice. While there is someevidence that tap water on airplanescan contain bacteria which may beharmful, there have been no reportedcases of anyone getting sick fromdrinking airplane “tap” water.

However, to be on the safe side, drinking bottled rather than tap waterwhen you fly is a good idea.

3. “Avoid grapefruit and grapefruitjuice, but oranges and orangejuice are OK.”

Transplant recipients taking cyclos-porine, tacrolimus, or sirolimus areadvised to avoid grapefruit and grape-fruit juice. Research shows that grapefruit juice (but not orange juice)can block an enzyme in the intestinesthat is responsible for the breakdownand absorption of these medications,leading to increased amounts of thesemedications in the body, which mayhurt the kidneys.

In addition, because absorption ofother medicines may also be affectedby grapefruit juice, it is a good idea to

ask your pharmacist whether grape-fruit juice will interact with any ofyour other prescribed medicines.

4. “Take Tylenol® (acetaminophen)when needed, but not aspirin.”

In general, this is good advice.Tylenol® (acetaminophen) is the over-the-counter drug of choice for aches,pains and fever for solid organ trans-plant recipients. Acetaminophen is rel-atively safe with few side effectswhen taken as directed.

While aspirin may work well foraches, pains and fevers, the unwantedeffects, such as increased bleeding orstomach irritation, may be too muchfor some transplant recipients. Thisdoes not mean that all aspirin useshould be avoided. For some patientsthe risks of bleeding or stomach irritation are far outweighed by the

True or False?

�

Transplant Chronicles, Vol. 13, No. 2 5

Litter!” Separating Myths from Good Advice for the Transplant Recipient

benefit of taking aspirin. A goodexample of this is taking a daily doseof aspirin (80–325 mg) to protect theheart.

Use of NSAIDs (non-steroidal anti-inflammatory drugs) such as ibupro-fen, naproxen, and ketoprofen shouldalso be avoided. This class of med-ications increases the risk of harm tothe kidney in patients takingcyclosporine or tacrolimus. In mostcases, using NSAIDs to relieveaches, pains, or fever is not worth thepotential harm to the kidney.

5. “You should pre-medicate beforeevery visit to the dentist.”

Good dental care is recommended foreveryone, but because transplantrecipients take immunosuppressant(anti-rejection) medications, they areat an increased risk for developingmouth infections that could lead toserious complications. Every transplantcenter has a protocol for dental pro-phylaxis after transplantation. Youshould consult with your transplantcoordinator to ask about the protocolrecommended by your physicians.Also, let your dentist know that youare taking immunosuppressants; he orshe may recommend pre-medicatingbefore each visit.

6. “Transplant recipients should notdonate blood.”

True. The American Red Cross andmost blood centers have eligibilityguidelines that prevent someone who istaking immunosuppressants fromdonating blood. These immunosup-pressants could be harmful to the per-son who receives the blood.

7. “Avoid touching doorknobsbecause they have germs.”

This advice is more scary than practi-cal. Every transplant recipient is at anincreased risk for developing infectionsafter transplantation because ofimmunosuppressant medications. The

more immunosuppressant medicationsthat you are currently taking, includingthose used to treat episodes of rejec-tion, the greater the risk of developingan infection. With that said, using com-mon sense is the best policy. You did

not have the transplant to live your lifein a protective bubble. Your hands canand will pick up germs from every-where, not just doorknobs. Good handwashing with antibacterial soap orusing a good hand sanitizer is the bestpolicy. Many transplant families havedeveloped the practice of carrying analcohol-based hand sanitizer with themfor those times when the environmentis not the cleanest and traditional handwashing is not feasible.

8. “Don’t get flu shots because theycan make you sick.”

Two different formulations of theinfluenza vaccine are available; theinfluenza injection (flu shot) and theinfluenza nasal spray. While flu shotsare considered safe for transplant recip-ients, flu sprays are not.

9. “You can catch disease fromchanging cat litter without a box lining.

It is OK to dispose of litter if it is in aliner so that you are not touching anyof the stool directly. Washing your

hands often is also very important.The germs are in the cat stool, not thelining or box.”

Animals, even household pets, cansometimes carry diseases, and whilefew are likely to be life threatening,transplant patients who take immuno-suppressants are at a greater risk ofcatching a disease. It is not recom-mended that a transplant recipientclean a cat’s litter box if at all possible.Also, the litter and liner should bereplaced frequently and the litter boxshould be cleaned at least every monthwith disinfectant soap or hot boilingwater (by someone other than thetransplant recipient, if possible).

10. “You shouldn’t take all your medications at the same time.”

Transplant patients are usually on multiple medications. Many times it isperfectly okay to take your doses ofmultiple medications at the same time.For example, prednisone taken withcyclosporine is not likely to cause seri-ous problems.

However, there may be situations whentwo medicines should not be taken atthe same time because they interactwith one another. For example, anyantacid and oral antibiotic should notbe taken at the same time of the daybecause the antibiotic would be lesswell absorbed and the infection couldgo untreated.

There are also examples of “grey”areas. For instance, the anti-rejectiondrugs cyclosporine and sirolimus inter-act with each other if taken at the sametime. The cyclosporine causes the con-centration of sirolimus in the body tobecome higher than normal, leading toan increased chance that one will expe-rience serious side effects from thesirolimus. Yet sometimes the doses ofcyclosporine and sirolimus can beadjusted to maintain appropriate drug

Continued on page 6

Living donor Paula withher brother Jack.

6 Transplant Chronicles, Vol. 13, No. 2

levels of each medication when takentogether. Transplant centers are wellaware of this drug interaction, andmay choose to adjust medicationdosages rather than separate the tim-ing of the two medicines.

Confused? Just remember the mostimportant thing is to be consistent inwhen and how you take your medi-cines. Take your drugs the same wayevery day. Consistency helps yourhealth care provider adjust your med-ications to your individual needs.Also, since medication regimens areindividualized, check with yourtransplant center or pharmacist tofind out which drugs can be taken atthe same time, or whenever you havea drug related question.

11. BONUS ADVICE: “In additionto an organ, you might acquiresome of the personality traits ofyour donor!”

Alas, this is a myth. There are peoplewho say that they feel closer to oreven manifest the traits of theirdonor, but there is no scientific evi-dence that anything having to dowith personality adheres to cells of atransplanted heart, liver, kidney orlung. Still, some transplant recipientsmay feel that they have indeed takenon some personality trait of theirdonor. The likely explanation for thisis when recipients know somethingabout their donor, they feel gratefulfor the organ and may begin to iden-tify psychologically with the donor’sbest attributes, almost as a way togive thanks. But, despite all the poetsand novelists who wax on about theheart as the seat of the emotions,short of a brain transplant, youshould not acquire any aspect of your donor’s personality or emo-tional or character traits after anorgan transplant.

Be sure to always speak to yourtransplant team about any issues orquestions you have. T

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ACKNOWLEDGEMENTS:

Thanks to the following per-sons for their valuable contri-butions to this article: KayAtkins, MS, RD; MaggieBrownell, PharmD; ArthurCaplan, MD, Director, Centerfor Bioethics, University ofPennsylvania; Dean S. Collier,PharmD; Kristy DeLong,PharmD Candidate; BrianDuffy, MD; Jessica Korger,PharmD Candidate; VictoriaL. Shieck, RN, BSN, CCTN;and Laurie Williams, RN, MS,CCTC.

?Log on to tell us what you think! Read others’ responses...www.recipientvoices.org

After reading Jack’s “myth vs. fact” article on page 4, do you have a “myth vs. fact” question youwould like addressed? Tell us by logging on to Recipient Voices at www.recipientvoices.org

Last issue we asked:

What advice would you give others about handling natural disasters and other types of emergencies?

And you said:

“Have your meds stored outside in a waterproof box (or with the local police, or in your car if it’s parked out-side). Keep a spare pair of glasses, a wind-up lantern and radio outside, along with gallons of drinking water, andtoilet paper (and a shovel). Have a plan in case you and your family are separated. Keep cash handy. Write awill. Have sturdy hiking boots for walking on rubble, warm clothes and a water filter from a nearby campingstore (there is a straw-looking device that filters bad organisms out of fetid water). Get to know your neighbors.”

-Robert Berend, recipient

Continued from page 5

let your VOICE be HEARD

Transplant Chronicles, Vol. 13, No. 2 7

By Jerry Reid

Each pediatric transplant recipient isat a different level of acceptance ordenial of their condition; each childis an individual and has uniqueneeds. Besides being physically ill,he or she may be depressed or lonely.

Emotional well-being can assist inthe healing process. Medicine, time,and the opportunity to sort out theirconcerns are essential for each pedi-atric transplant recipient from diag-nosis to discharge.

Some of the special programmingthat can help children and their fami-lies cope with transplantation includegroup and bedside activities, medicalplay, arts and crafts, games, musicand even a summer camp.

The Transplant Center at theUniversity of Michigan has devel-oped Camp Michitanki, a week-longsummer camp for pediatric solidorgan transplant recipients.

Camp turned out to be one of thebest weeks for the staff as well as thechildren. I, personally, found it to bea life-changing experience.

These children were able to freelydiscuss their fears, dreams, and aspi-rations. After listening to all theyshared, I found out how lucky I wasto know these brave young warriors.

Jerry Reed is a Senior ActivityTherapist at the University ofMichigan Health Care System.

Editor’s Note: For a listing of sum-mer camps for children, contact yourlocal National Kidney Foundationoffice at www.kidney.org/about/offices.cfm or visit NKF’s summercamp directory: www.kidney.org/patients/plu/plu_manag/viii.cfm. T

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KIDNEY CAMPS for Kids Pre- and Post-Transplant

THE NKF'STRANSACTIONCOUNCIL HELD OURFIRST INTERNET BOOKCHAT to discuss “Black &White & Red All Over {The Storyof a Friendship}.” Co-authorsMartha McNeil Hamilton and WarrenBrown, both Washington Post reporters,answered questions about their book and discussed Martha’s decision to donate and Warren’s lifestyle changes post transplant.

“If you are really very lucky, there’s aMartha somewhere in your life,” saidWarren Brown, who received a

kidney from his co-workerand friend, Martha McNeil

Hamilton.

Read the full discussion on our Website www.transplant

recipients.org under the “Sharing &Support” section-Chat With Us!

Also…Post a book review of your own

and find out what other recipients are reading and recommending. T

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IN CELEBRATION OF ORGAN AND TISSUE DONATION MONTH—APRIL 2006

“Camp turned out to beone of the best weeks for

the staff as well as thechildren.”

Black & White & Red All Over {The Story of aFriendship} by Martha McNeil Hamilton andWarren Brown (ISBN 1-58648-156-8) is avail-able from your local library as well as bookstores.

8 Transplant Chronicles, Vol. 13, No. 2

Transplant News DigestTransplant News Digest

Jim Warren

from the editors of Transplant NewsBy Jim Warren, editor and publisher

Transplant News, edited and published by Jim Warren, is a twice-monthly newsletter for the transplant commu-nity focusing on developments in organ, tissue, eye and bone marrow procurement and transplantation. TransplantNews Digest is written exclusively for quarterly publication in Transplant Chronicles. For more information aboutTransplant News visit: www.trannews.com

Kidney failure rates in U.S. havestabilized, but racial disparitiesremain

After years of increases of 5 percent to 10 percent, the rate forAmericans experiencing kidney fail-ure have finally stabilized, accordingto new research conducted by theNational Institute of Diabetes andDigestive and Kidney Diseases(NIDDK) of the National Institutesof Health (NIH).

Despite the welcomed lack ofincrease, the researchers said dramat-ic racial disparities still remain.

“It is gratifying to see progress, how-ever small, and to know that NIDDKactivities undoubtedly have had ahand in that success,” said PaulEggers, PhD, the NIDDK Co-Director of the U.S. Renal DataSystem (USRDS). “But persistentdisparities are sobering.”

In 2003, the rate for new cases ofkidney failure was 338 per millionpopulation, down slightly from2002, NIDDK reported. The resultscontinued a four-year trend, whichfinally allowed researchers to be“cautiously optimistic” that the rateincreases have not happened bychance, NIDDK said in a pressrelease. The average annual increasehas been less than one percent since1999, compared to an average of 5percent in the previous decade, theresearchers found.

Diabetes and high blood pressureremain the leading causes of kidneyfailure, accounting for 44 percentand 28 percent of all new cases,respectively. The most striking

trends were found in diabetes, whererates for new cases in whites underage 40 were the lowest since the1980s, in stark contrast to rates forAfrican Americans, which have notchanged.

The researchers credited the gains tothe introduction of clinical strategiesproven in the 1990s to significantlydelay or prevent kidney failureincluding: (1.) Angiotensin-convert-ing enzyme inhibitors (ACE-inhibitors) and angiotensin receptorblockers (ARBs), which lower protein in the urine and are thoughtto directly prevent injury to the kidneys’ blood vessels; and (2.) careful control of diabetes and blood pressure.

HHS begins process to get intestin-al transplants covered by Medicare

The Department of Health andHuman Services (HHS) has issued anotice of proposed rulemaking asfirst step to include intestinal trans-plants within the definition of organscovered by the rules governing theoperation of the Organ Procurementand Transplantation Network(OPTN).

HHS announced in the November23, 2005 Federal Register, that it isseeking comments on the proposedrulemaking and had to be submittedby January 23, 2006.

In the announcement, HHS pointedout that there are still many prob-lems associated with intestinal trans-plants, including high morbidity and mortality rates, frequent compli-cations like acute and chronic rejec-tions and serious infections like

cytomegalovirus disease. It alsonoted that success rates are lowerthan other organs with one-year graftand patient survival rates of 67 percent and 81 percent respectivelyfor adults, and 58 percent and 65percent respectively for pediatricsrecipients.

However, HHS noted that, despitethe shortcomings, the number ofcandidates for intestinal transplantsand the number performed annuallyis increasing.

“The nature of the regulatory frame-work governing the operation of theOPTN underlies the importance ofincluding intestines within the defi-nition of organs covered by the finalrule,” HHS said. If, after consideringthe comments, HHS decides to makethe proposed policies enforceable,any transplant hospital that fails tocomply with any allocation policyapproved will be subject to sanc-tions, including termination from theMedicare and Medicaid programs.

Drive to increase medical tourismin Philippines resulting in foreign-ers getting kidney transplants

According to Undersecretary Jadedel Mundo, head of the PhilippineDepartment of Health’s MedicalTourism Program, people are comingbecause treatment is much cheaperthan in their respective countries likethe U.S. Del Mundo said the pro-gram has had tourists from SouthKorea, Japan and China in Asia, and Germany, France and the Nether-lands in Europe, as well as the U.S.

Since available kidneys are scarce inthe Philippines, foreign patients are

Transplant Chronicles, Vol. 13, No. 2 9

asked to “bring your own kidneydonor,” who is usually a relative orclose friend, del Mundo told thenews.inq7.net, adding, “We don’twant Filipinos to be sacrificed infavor of medical tourism.”

There are five government and fiveprivate hospitals being marketed bythe government as centers for thelocal medical tourism program. Theyinclude Capitol Medical Center, St.Luke’s Medical Center, AsianHospital, Medical City, MakatiMedical Center, Lung Center,Philippine Heart Center, NationalKidney Institute, PhilippineChildren’s Medical Center and EastAvenue Medical Center.

The cost for a kidney transplant isP3 million (about $60,000 U.S.).

Del Mundo predicted the countrywill catch up with neighboring coun-tries in the multibillion-dollar globalmedical tourism industry over thenext three years. “It will catapult usto the world stage of medicaltourism and will be a dollar earner.At the same time, it will help stemthe tide of brain drain in thePhilippines,” he added.

Bill Introduced in Senate

Senators Carl Levin (D-MI) andU.S. Majority Leader Bill Frist (R-TN) introduced legislation inmid-February to clarify the intent ofthe National Organ Transplant Act(NOTA).

Levin’s bill—(S.2306) the LivingKidney Organ Donation ClarificationAct—aims to clarify “ambiguouslanguage” in Section 301 of NOTAto assure kidney paired donation isnot considered to be the purchase ofan organ which would make the newprocedure illegal. Senators MichaelDeWine (R-OH), Byron Dorgan (D-ND) and Christopher Bond (R-MO)joined Levin in introducing the bill.

S.2306 is short and to the point—Section 301 (a) of the NationalOrgan Transplant Act is amendedby adding the following: “For pur-poses of this section, kidney paired

donation and kidney list donationshall not be considered to involvethe transfer of a human organ forvaluable consideration.”

HRSA’s FY 2006 transplant pro-gram budget cut by $1.1 million

Despite a concerted last-minuteeffort by the transplant communityseeking an increase in funding foradministering the nation’s transplantprograms, the final appropriation forFY (financial year) 2006 was actual-ly reduced by more than a milliondollars.

On December 30, 2005, PresidentBush signed HR 3010—the appro-priations bill for the Departments ofLabor, Health and Human Services,and Education for the fiscal yearending September 30, 2006—whichcontained $23,282,000 for theHealth Resources and ServicesAdministration (HRSA) organ trans-plant program.

The funding, which represented theadministration’s request, is a reduc-tion of $1,131,000 from the FY 2005funding level.

“The transplant community was verydisappointed that, despite a concert-ed, unified effort, the funding did notreflect the new authorization,” saidTroy Zimmerman, GovernmentRelations Director of the NationalKidney Foundation. “We held meet-ings with the Appropriations Sub-committee members, testified beforethe House Appropriations Subcom-mittee, and conducted a grassrootsadvocacy campaign, but it just wasn’t enough.”

The NKF also sent a letter to theChairmen pointing out, among otherthings, that funding for the OrganRecovery and Improvement Act has not increased since it was signedinto law by President Bush on April 5, 2004.

Strategic Planning Committeebegins ambitious overhaul over U.S.donation and transplantation system

Increasing the number of transplantsperformed, beefing up oversight of

the huge proliferation of livingdonors, implementing “net benefit”as a tool in the allocation of organs,reducing disparities in who gets anorgan nationwide—the most ambi-tious overhaul of the U.S. organdonation and transplant system,since it was established almost 20years ago, has begun in earnest.

Frank Delmonico, MD, President ofthe OPTN/United Network forOrgan Sharing (UNOS), told themembers of the strategic planningcommittee, “Histocompatibility spe-cialists differ with transplant sur-geons on the HLA sensitivity issue.It won’t change unless they’recharged to do so. We’ve got to stan-dardize organ recovery. Certain kid-neys need to be pumped. There istoo much wastage of organs. We’vegot to get over being paranoid aboutthe electronic offering of organs. Wecan do this.”

New heart allocation schemeokayed by UNOS board willdecrease waitlist deaths for adults,children

A new donor heart allocation schemethat is predicted to decrease pretrans-plant deaths by about 7 percent inadults, and 6 percent in children whoneed a heart transplant, was adoptedby the Organ Procurement andTransplantation Network(OPTN)/United Network for OrganSharing (UNOS) Board of Directors.

Under the newly-modified policy,hearts will be offered to candidatesin the two highest levels of medicalurgency status (Status 1A and Status1B) up to a distance of 500 milesfrom the donor hospital before anylocal candidates of lower urgency(Status 2) would be eligible toreceive the offer of an organ. Theproposed policy is predicted to resultin an increased number of pediatrictransplants. T

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10 Transplant Chronicles, Vol. 13, No. 2

GASTROINTESTINAL DISTUR-BANCES are common in the generalpopulation, and are among the mostfrequent problems post-transplanta-tion. These gurgles and squirts, burnsand belches may be more frequent,have different causes, and result inmore serious consequences in the setting of chronic anti-rejection med-ications. You should always reportpersistent gastrointestinal (GI) com-plaints to your physician.

THE GI TRACT includes the mouth,esophagus, stomach, small and largeintestine, biliary system, as well assolid organs including the liver andpancreas. Each of these areas of theGI tract may be impacted by inflam-mation, infection, and malignancy.The most serious GI complicationspost-transplantation are generallyconsidered to include upper-GI ulcer-ations, diarrhea, perforation of thelower intestine, inflammation of GIorgans, such as the pancreas, stom-ach, or esophagus, and GI cancers.

SOME PATIENTS DEVELOP: PAINor burning with swallowing; achingor stabbing pain in their chest orupper mid-abdomen; or recurrentreflux, nausea, and vomiting aftertheir preventive medications are dis-continued. These symptoms couldsuggest development of esophagitis,gastritis, or GI ulcerations and shouldbe reported to your physician. Forpersistent or moderately severesymptoms, patients usually undergo aprocedure called “EGD” or esopha-gogastroduodenoscopy. This proce-dure, in which the patient is sedatedand a small lighted endoscope isinserted through the mouth into thestomach and intestine, is performedby a GI specialist and helps to deter-

mine the precise cause of the symp-toms. Resumption of PPI’s or specif-ic anti-fungal or anti-viral medica-tions, when targeted to the cause ofthe ulceration or inflammation, isvery effective therapy. Symptomsusually resolve quickly.

DIARRHEA IS PROBABLY THEMOST COMMON GI complaint fol-lowing transplantation today with amyriad of potential causes. Severalof the current maintenance anti-rejection therapies are commonlyassociated with diarrhea, includingmycophenolate mofetil, sirolimus,and tacrolimus. Often, symptoms willrespond to dose adjustment or med-ication spacing (not taking the entiredose at the same time). Other etiolo-gies for diarrhea should also be con-sidered. Infections with a variety oforganisms, including bacteria, virus-es, fungi, and parasites all produceloose stools. Altered colonic floraafter antibiotic treatment for non-GIinfections, and medications such ascolchicine (used to prevent or treatattacks of gout) may produce diar-rhea. Rare causes include non-infec-tious inflammatory bowel diseaseand GI cancers. When discussingdiarrhea with your physician, be sureto note any associated signs or symp-toms: What is the frequency and con-sistency of your stool? Have youhad fever, abdominal cramps or pain?Have you seen blood in your stool?Have you lost weight? What stimu-lates or relieves your symptoms?Beyond discomfort and inconven-ience, diarrhea in the transplantrecipient can produce significantcomplications including dehydration,changes in drug absorption, and kid-ney failure.

POST-TRANSPLANTATION PAN-CREATITIS is another potentialcause of nausea, vomiting, andabdominal pain. These symptomsgenerally worsen with eating and canproduce severe dehydration and elec-trolyte imbalance. Pancreatitis mostcommonly results from gallstones,ethanol intake, medications, or infec-tion. Treatment usually requires hos-pitalization, fasting, and therapy forthe specific cause of pancreaticinflammation.

INTESTINAL PERFORATION CANBE LIFE THREATENING, BUT ISAN UNCOMMON PROBLEMTODAY. Like other GI complica-tions, perforation is most likely tooccur in older patients and in associ-ation with infection. Perforation mayoccur more frequently in patientswith diverticular disease of the colon(small pouches in the colon wall).Any blood in bowel movements orsevere lower abdominal pain shouldbe promptly reported to your physi-cian. Intestinal perforation generallywill require swift surgical interven-tion and institution of a broad-spectrum of antibiotics. When identi-fied early, this complication need notbe fatal.

ALTHOUGH THE COMMON GICANCERS in the general population,such as colon cancer, are not

Continued on page 13

DO YOU HAVE PROBLEMS WITH “ACID INDIGESTION”? DOES MEXICAN FOOD LEAVE YOU “BURNING

AT BOTH ENDS”? DO YOU STRUGGLE WITH CONSTIPATION, HEMORRHOIDS, OR OCCASIONAL ABDOMINAL CRAMPING? IF SO,YOU’RE NOT ALONE!

GURGLES and SQUIRTS:Gastrointestinal Disturbances After Transplantation

By Shirley Schlessinger, MD

Esophagus

Stomach

Small Intestine

Large Intestine

Transplant Chronicles, Vol. 13, No. 2 11

and are struggling to get the benefitsyou expected, this article will pro-vide some strategies.

All of us have various coping skills.You may have mastered the skill ofsticking up for yourself so that otherscan hear and respond. Or you mayhave learned to keep a notebook (orbinder or filing cabinet or entirevault!) to track key health informa-tion.

Believe me, with insurance changesand particularly the start of Part D,these skills will come in very handy.The new prescription coverage iscomplex. (How is that for understate-ment?) This is especially true forpeople with transplants, since anti-rejection medicines are not onlyvital, but also usually “top tier”(meaning requiring prior authoriza-tion and higher co-pays). In addition,coverage varies according to whenyou got your Medicare in relation toyour transplant.

So how can you use your skills to getyour new coverage to work for you?

1. KNOW YOUR COVERAGE.Make a list in your “importanthealth information” binder!

Separate anti-rejection medicinesfrom the rest of your medicines.

For anti-rejection medicines,learn:

a. Your Medicare “start date” onyour red, white and blueMedicare card.

b. Your transplant date. List all ofyour transplants, as MedicarePart B will help pay for anti-rejection medicine as long asyou had Medicare at the timeof ONE of your transplants(other than isolated pancreas

transplant, which is the excep-tion to every rule).

c. Medicare Part B (old-fash-ioned, Medicare health insur-ance) will pay 80 percent ofyour anti-rejection medicines ifyou had Medicare at the timeof your transplant. The rest ofyour anti-rejection medicinewill NOT be covered by PartD. It MAY be covered by yourwork health insurance, otherprescription coverage—whatever was paying for itbefore Medicare Part D started.Don’t be surprised if your phar-macy is confused about youranti-rejection medicine cover-age. Ask your transplant centersocial worker to help sort thisout, especially questionsregarding the 20 percent ofanti-rejection medicine not cov-ered by Part B.

d. Medicare Part D will coveranti-rejection medicines if youDID NOT have Medicare at thetime of your transplant (this ismore commonly true for thosewith liver, heart, or lung trans-plants). Your Part D plan mayneed to be convinced, so don’tbe surprised if your Part D planasks for documentation andmay even require an “appealprocess” to approve coverage.

2. TEAM UP WITH YOURPHARMACIST. If possible, find a pharmacistwho:

a. Works with other transplantrecipients and is approved tobill Medicare Part B as well asPart D and who will help youfigure out your coverage andresponsibility.

b. Will bill more than one insurer.If Part B pays 80 percent of

your

anti-rejection medicines, find a pharmacy able to bill the20 percent to your secondarypayor.

3. KNOW YOUR MEDICINES.Medicare Part D plan formularieslist medicines in different ways.Ask your transplant coordinatorto help make your medicine list.To search the formulary online orby phone, it helps to list yourmedicines by:a. Brand nameb. Chemical namec. One-word descriptor (“antibiot-

ic”; “cholesterol”; etc.) for yourown reference/sanity.

d. Don’t include a list of youranti-rejection medicines if theywill be covered by Part Binstead of Part D.

4. HAVE A PLAN TO STREAM-LINE THE PROCESS OFGETTING YOUR MEDI-CINES:a. Each time you go to the phar-

macy, bring your Medicare card(the red white and blue one),your Part D card (when you getit), AND your transplant date.

b. Bring along copies of factsheets, found at www.kidneydrugcoverage.org (more than40 fact sheets are available tohighlight different kidneypatient and transplant scenar-ios) or from your transplantcenter, that outline whenMedicare Part B covers anti-rejection medicines, and whenPart D will do so.

c. Allow more time to get themedicines that require priorauthorization. This prevents apanic when you go to get them.

Coping with MEDICARE PART DBy Rebecca Hayes, MSW

continued on page 12

BY THE TIME YOU READ THIS, MEDICARE PART D (PRESCRIPTION INSURANCE)WILL HAVE BEEN AROUND FOR MANY MONTHS. IF YOU HAVE SIGNED UP,

Rebecca Hayes, MSW

12 Transplant Chronicles, Vol. 13, No. 2

bag, as I had no clue as to where I’dbe sleeping on a given night. I flewfrom Washington, D.C. toMontgomery, Alabama on September20, 2005. Montgomery lookeduntouched by Katrina, but those of youwith good memories realize that thiswas just three days before the nextstorm, Rita, came in. The first threedays were spent in the Red Cross shel-ter/headquarters with 4000 of my clos-est co-workers. The Red Cross wouldnot send anyone out to the field inadvance of another severe hurricane.

I spent the first three days decidingwhere in the organization I could bestserve. I ended up deciding to getinvolved with Bulk Distribution. Ibecame a truck driver, driving 15- and24-foot trucks all over Alabama andMississippi, delivering supplies. I alsoworked in the warehouse betweendeliveries. I ended up driving some7000 miles and loading and unloadingtons of food, water, medicine, tools,tarps and other things.

I went into many heavily damagedareas, including Biloxi and Gulfport. Iwas able to do all the things asked ofme by the Red Cross, some daysworking as many as 16 hours. I wasable to keep myself well fed, as foodwas available at the shelters that Idelivered to, as well as from stores andrestaurants along the routes. I spentmost nights in a motel at the headquar-ters, other than the nights spent on theroad. The Red Cross did a good job oftaking care of the volunteers.

I scheduled myself to fly home afterthree weeks. I came home with only afew extra “ailments.” Being on aspirinand prednisone, I tend to bruise easily,so both arms became brightly bruisedfrom throwing, hauling, and catchingboxes being loaded and unloaded fromtrucks. I tried to always wear longsleeves, but that would get old with theheat and humidity. I found myself a lit-tle sensitive to local water supplies. Idid drink only bottled water. I neededto remember that few coffee makers

boil the water. There were also a num-ber of sore muscles, but overall theworkout was well worth it.

I would do this again. I am scheduledfor more disaster relief training fromthe Red Cross. And you might lookinto this for yourself. You do need tolook out for yourself and keep yourselfsafe. The Red Cross had an MD at theheadquarters along with a small staffof nurses. They were charged withkeeping the staff healthy. I did checkin with the staff on my arrival and“fessed up” about my situation. Andeverything worked out very well. Evenmy cell phone!

Michael lives in Poolesville, Maryland.

Editor’s Note: Every transplantrecipient is unique, with differenthealth issues, capabilities, andneeds. Check with your doctorbefore committing to an activitylike this. T

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Volunteering During the HurricanesContinued from page 1

Coping with Medicare Part DContinued from page 11

d. With enough lead-time, yourtransplant coordinator may beable to explore alternative med-icines with you that are a lower“tier”* on your plan. This mayeliminate the need for priorauthorizations, and cut downyour co-pays. Remember, if PartD isn’t covering your anti-rejec-tion medicines, you don’t haveto ask your coordinator aboutPart D coverage for them.

e. If you have many medicinesthat can’t be switched, rate the“hassle factor” of your plan asfar as prior authorizations andhigh co-pays for top tier medi-cines. Explore to see if a

different plan would work bet-ter— leaving yourself enough lead-time, of course.

5. GET “PARTNERS INCRIME.” If possible, find some-one in your support system whocan help. Does your mom staycalm even when she’s put on holdfor 20 minutes? Maybe she willcall your plan to ask about theprior authorization process? Thelocal Council on Aging may havea team of resource people to turnto, even if you are not aged. Askyour health care team for help andreferrals. They have built a coreof knowledge and experience withPart D and local experts—just

give them enough lead-time tohelp. Talk to other recipients andsee what worked for them.

Whether you have signed up for PartD or may sign up in the future, it’seasy to learn more. Two great Websites include the Medicare Web sitewww.medicare.gov and www.kidneydrugcoverage.org (even ifyou don’t have kidney disease—justgo to the “transplant” link there). Ifyou don’t have Internet access, I sug-gest you call your transplant socialworker. He or she can provide you some overviews, and also connect you with experts in yourcommunity. T

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* Tiers are various pricing levels. Drugs are assigned tiers and different tiers have different percentage copays.

Transplant Chronicles, Vol. 13, No. 2 13

Some of the important post-transplantnutrition goals are: to prevent excessiveweight gain, keep blood sugar levelsand blood fat (cholesterol and triglyc-eride) levels within normal limits,maintain good blood pressure, andbuild and maintain strong bones. A die-titian can help you make changes inyour child’s diet to help minimize orprevent medication side effects andensure an adequate, balanced diet.

Approximately 20–25 percent of kids’daily energy intake comes from snack-ing between meals. One of the mostimportant things you can do is havenutritious snacks readily available. Ifhealthy snacks are available, your childwill be more likely to choose them.

Have pre-cut fruits and/or vegetables inplastic baggies and place them at eyelevel in the refrigerator. Include small,single serving size containers of low fatfruit or vegetable dips, salad dressingsor even peanut butter. Children tend toeat more fruits and veggies when theycan be “dipped and dunked.” Try tochoose a variety of fruits and vegeta-bles throughout the week to make up a“rainbow” of choices. Think about therainbow of choices that are available:white—bananas, pears, cauliflower,jicama; red—cherries, cranberries, redgrapes, strawberries, beets, red peppers,cherry tomatoes; orange/yellow—

apricots, cantaloupe, oranges, pineap-ple, carrots, sweet potatoes, yellowsquash; green—avocados, green apples,green grapes, kiwi fruit, artichoke,asparagus, broccoli, celery, snow peas,spinach, zucchini; blue/purple—black-berries, blueberries, plums, raisins, egg-plant, purple cabbage…and so on.

Offer low fat, whole-grain crackers orbreads and serve them with low fatstring cheese or dips like hummus orblack bean or white bean dip or salsa.Fruit, vegetables, whole grain breads,crackers and cereals and beans andlegumes all help to increase fiber intakewhich helps to keep blood cholesterollevels down and promote good bowelhabits. A high fiber intake may alsohelp to reduce blood sugar.

Find ways to boost your child’s calci-um intake. Calcium needs are increasedwhile your child is on prednisone.Calcium helps your child’s bones growand become strong. Offer yogurt; sun-daes with healthy toppings, such asfruit or low fat granola; milkshakes andfruit smoothies; cereal and low fatmilk; low fat cheese; and calcium-fortified products like calcium-fortifiedorange juice.

Try to limit salt intake. Too much saltin the diet can cause your child toretain fluid, especially when they are onprednisone. A high salt intake can also

contribute to high blood pressure. Limitsalty foods such as chips, pretzels,french fries, lunch meat and cheesespreads or sauces.

No food should be labeled as “good” or“bad.” All foods can fit into yourchild’s diet. The key is moderation andvariety. Chips, crackers, cookies andother packaged snacks are often avail-able in lower-fat, lower-salt, or lower-sugar versions. If your child does eatregular chips, cookies, candies, etc., tryto limit it to one small portion a day orless. Limit juice, soda and other highsugar content drinks to four to eightounces or less a day. Encourage morewater.

Plan ahead when going on family out-ings or on trips to clinic. Pre-baghealthy snacks and bring along bottledwater. If you do have to make a quickstop at a fast food restaurant, choose achild size meal with the fruit instead ofthe fries; milk instead of soda; and splitthe sandwich into two servings.

So the next time your child says, “I’mhungry!” be prepared and give thatsnack attack a healthy treat.

Kila Ahlijian, MS, RD, CNSD works atthe University of Michigan Health CareSystem in the Department of Nutritionand the Department of Pediatric LiverTransplantation. T

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significantly increased in transplantpatients, recipients do experience anincreased incidence of several uncom-mon malignancies. These include lym-phomas and Kaposi’s sarcoma, whichcan both affect the gastrointestinal sys-tem. These diseases have varying mani-festations including abdominal pain,nausea, diarrhea, or fever. Malignancymay be suspected based on x-rays such

as computed tomography (CT) scans,but will generally require colonoscopy,interventional radiology, or surgicalexploration with biopsy for definitediagnosis. Fortunately, these tumorswill often regress spontaneously withreduction of anti-rejection therapy andmay also be amenable to chemotherapy.

IT IS THE UNUSUAL TRANS-PLANT PATIENT WHO will not expe-rience some GI complications post-transplantation. With current diagnostic

and therapeutic tools, most problemsevaluated early and aggressively can beresolved quickly. It is sometimes diffi-cult to distinguish between a benignself-limited GI disturbance and thosewith more ominous potential. Alwaysdiscuss your complaints with yourphysician, and request additional evalu-ation if your gurgles and squirts don’tsettle down promptly! T

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Gurgles and Squirts…Continued from page 10

When Your Child (or Yourself) Has a SNACK ATTACKBy Kila Ahlijian, MS, RD, CNSD

NUTRITION AFTER A TRANSPLANT IS IMPORTANT. PLANNING NUTRITIOUS SNACKS CANHELP YOUR CHILD AND YOURSELF ACHIEVE A HEALTHY DIET. PROMOTING HEALTHY EATING AND SNACK-ING HABITS WILL HELP PREVENT SOME HEALTH COMPLICATIONS THAT POST-TRANSPLANT MEDICATIONS CAN CAUSE.

14 Transplant Chronicles, Vol. 13, No. 2

The Truth About FALSEBy Cheryl Thomas

If you have dentures, did you knowyou still need a dental exam at leastonce a year?Tooth loss is often a result of gum dis-ease, which is a bacterial infection, ordue to a severely decayed or brokentooth. If you have had all of your teethremoved, you should still see your den-tist once a year. A dental exam for thedenture patient often includes a visualexam to look for abnormalities in thecolor and shape of your tongue, cheeks,lips, throat, and the soft gum-coveredridge where your teeth used to be.Often x-rays are required as a screeningfor oral cancer.

Candidiasis?When you were a child, you mayhave had a yeast infection commonlyknown as “thrush.” Because you areimmunosuppressed, this yeast infec-tion (also known as Candidiasis) maydevelop. People who wear dentures,who have a chronic dry mouth, orwho are diabetic are highly suscepti-ble to this infection. An oral yeastinfection can also follow a course ofantibiotics. Candidiasis is usually asoft, cottage cheese-like substancethat can be gently scraped away fromthe top side of your tongue, roof ofyour mouth, and inside of yourcheeks. It also commonly appears asdry or cracked sores on the outsidecorners of your mouth.

Help from Your Dental ProfessionalYour dentist can help to eliminateCandidiasis. You will likely receive aprescription for an antifungal rinse,cream, and/or lozenge. It is importantto follow the directions to rid yourselfof this infection. Your denture willneed to be treated with a prescriptionantifungal liquid (Nystatin®). Youwill need to replace your denturebrush. Although boiling or soaking

the bristles of your brush in antisepticrinses will likely kill the fungus, itoften damages the bristles and leavesthem limp and ineffective. If you usetoothpaste to clean your denture, thetoothpaste is often also contaminatedby the fungus and should be replaced.

PreventionAs previously stated, people whowear dentures, people who have achronic dry mouth, and diabeticsoften develop Candidiasis. If youwear a denture, you will decreaseyour chances of developing thisannoying condition when you removeand carefully clean your dentureevery morning and every night. Youshould be careful to change your den-ture soak solution every day to pre-vent fungal and bacterial growth onyour denture. Your dentist can recom-mend an over-the-counter denturesolution that will prevent bacterial orfungal growth, but will not damageyour denture. If your mouth is con-stantly dry, this may be a side effectof your medication. Consulting withboth your primary care physician andyour dental provider may offer someeasy solutions, such as changing yourcurrent medications to ones that areless likely to cause a dry mouth. Ifallowed by your physician, drinkingplenty of water will help greatly.Because high blood sugar levels oftenresult in oral yeast infections, practic-ing good oral hygiene and maintain-ing optimal blood sugar levels willhelp protect people living with dia-betes from developing oral yeastinfections. Although systemic antifun-gal pills are often prescribed for avaginal yeast infection after a courseof antibiotics, the oral yeast infectionwill often need the assistance of anoral antifungal rinse to eliminate theinfection completely.

Oral Cancer Oral and throat cancer is diagnosed in30,000 people each year, and isresponsible for 8,000 deaths per year.This particular type of cancer can bevery aggressive and has a high mor-tality rate if not detected and treatedearly. Before you lost your teeth, yourdentist and dental hygienist were notonly checking your teeth and gums,they were looking for subtle changesin and outside of your mouth that maybe cancerous or precancerous. Oralcancer can appear on your tongue,cheeks, roof of mouth, throat, or lips.Org an transplant recipients may be atan increased risk for oral cancer dueto immunosuppressive medications.Some high risk factors include: smok-ing, smokeless tobacco, and sun expo-sure. Ill fitting dentures, whether theyare painful or not, can also be a highrisk factor for oral cancer. Sadly,many people are diagnosed withoutany of the aforementioned risk fac-tors, stressing the need for routineoral cancer screenings.

Reminder for Your Dental Check-UpImmediately after teeth are extractedand a denture is fitted, patients willsee their dentist frequently to adjusttheir denture until it fits well and feelsgood. Once the denture becomes com-fortable, “time flies by!” Many people with dentures schedule theiryearly dental exam near their birth-day. Just think, not only will you begetting an exam, you will likely get acomplementary denture brush, tooth-paste, mouth rinse, and/or adhesivepaste, and if you're lucky—a birthdaycard! HAPPY BIRTHDAY!

Cheryl Thomas is a dental hygienistand a kidney recipient from Texas. T

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BECAUSE TRANSPLANT RECIPIENTS ARE IMMUNOSUPPRESSED,ON-GOING AND HIGH QUALITY DENTAL HEALTH REMAINS AN IMPORTANT PRIORITYFOR RECIPIENTS TO ASSURE BACTERIA IS KEPT AT A MINIMUM. THIS APPLIES TOPEOPLE WHO HAVE THEIR OWN TEETH OR FALSE TEETH.

and

Transplantion

TEETH

Transplant Chronicles, Vol. 13, No. 2 15

New agents have been marketed andfavorable combinations have beendescribed. Kidneys and livers haveshown a decline in rejection rates withorgans lasting longer and recipients liv-ing longer. The American Journal ofTransplantation, 2004, indicates thatwith the advances in immunosuppres-sant agents, rejection rates havedeclined significantly within the firstyear. The Journal also indicates thatkidney transplant recipients have a graftsurvival rate of 66–78 percent and apatient survival rate of 81–90 percent atfive years. Liver transplant recipientshave a 65–78 percent graft survival rateand a 73–84 percent patient survivalrate at five years. However, despite theimprovements in immunosuppressivetherapy, the lung transplant recipienthas not shared the same success rates asothers. There is a survival rate of aboutfive of 10 persons alive at three yearsafter lung transplantation, compared toheart, kidney, or liver transplantation,where seven or eight of 10 persons arealive at three years after transplantation.The most common cause of death in alung transplant recipient is chronicrejection, also known as brochiolitisobliterans. Research has not been verysuccessful in preventing this type ofrejection in lung transplant recipients.

There are many reasons why prevent-ing rejection in a lung transplant recipi-ent has been challenging. It is not easyto monitor how well the graft is work-ing in a lung transplant recipient.Spirometry (breathing tests) and biop-sies are not as easily done as a bloodtest. Monitoring is important so thatrejection can be detected early, thenchanges made accordingly. Lung trans-plant recipients need their medicine tobe targeted to their lung(s). Getting themedicine into the lung tissue can be achallenge. Higher doses may be needed

to force the medicine into the lungs.Higher doses may cause unwanted andharmful side effects to other tissues,such as the kidneys. In this way, alung transplant recipient is similar toan asthmatic patient. Both need med-ication to target only the lung, not theentire body. When medication is givenby mouth as a capsule or syrup, ittravels throughout the body to variousorgans and tissues. When medicine isinhaled, it goes directly to the lungswhere it is needed. By having a med-ication that goes to the target, the riskof unwanted and harmful effects toother tissues like the kidneys decreas-es. In an asthmatic patient, inhaledsteroid medications are a real advan-tage. Steroids, especially when givenin high amounts, have many harmfulside effects. These side effects areavoided or greatly minimized when an asthmatic patient uses an inhaledsteroid instead of swallowing a steroid pill.

In January of this year, a study waspublished in the New England Journalof Medicine. Researchers reported theresults of using a new approach with anold medication in lung transplant recip-ients. Cyclosporine A powder (theactive ingredient in Sandimmune orNeoral) was compounded by the inves-tigators into a solution for inhalation.By making cyclosporine into an inhaledmedication, patients were able tobreathe in high doses of cyclosporine tothe lungs without hurting other organs.The amount of cyclosporine taken bymouth would have caused a harmfuleffect to the kidneys.

The trial was conducted at the Univer-sity of Pittsburgh Medical Center, overa two-year period. A total of 112patients participated. All patients weregiven tacrolimus, steroids, and azathio-

prine by mouth. One half of them alsoreceived inhaled cyclosporine while theother half received a placebo (non-med-icated solution) to inhale. Patientsinhaled treatments (cyclosporine orplacebo) every day for 10 days, thenthree days a week for the remainder ofthe two-year trial. The two groups,cyclosporine and placebo were com-pared for acute rejection, chronic rejec-tion, survival rate, and infection.

In the end, it was discovered thatinhalation of cyclosporine resulted inless chronic rejection and better sur-vival rates. There were no differencesin acute rejection rates. The addition ofcyclosporine did not seem to increaseunwanted side effects, such as the riskfor kidney damage and infection. Theresults of kidney damage and infectionwere similar between the two groups.

While these findings are hopeful forlung transplant recipients, concernsremain. For instance, only half of thepatients that started actually finishedthe study. The reasons for the dropoutswere made either by the patient orinvestigator. Reasons included: infec-tion, kidney failure, smoking, enteringa rescue study, symptoms from theinhaled formulation, and/or thepatient’s decision to not continue.Another concern is the formulation orrecipe of the cyclosporine inhaled solu-tion. It would be incorrect to assumethat any formulation of cyclosporinewould work the same as the one usedin the study. The inhaled formulationfor the study was compounded, andmay be difficult to duplicate. Also,using a machine to deliver thecyclosporine solution for inhalationmay not be practical or desirable for alllung transplant recipients.

In conclusion, though hopeful, thismedication is not yet FDA approved.More research should be done toconfirm the results observed in thestudy this past January.

Kristine will receiveher Doctor ofPharmacy degree inMay of 2006. T

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CYCLOSPORINE Inhaled in LungTransplant Recipients

By Kristine DeLon, Pharmacy Student

IN THE LAST 10 YEARS, MOST SOLID ORGAN TRANSPLANTRECIPIENTS HAVE BENEFITED FROM ADVANCEMENTS IN IMMUNOSUP-PRESSIVE AGENTS.

☞ Has your e-mail address changed or have yourecently gotten e-mail? E-mail nancyl@kidney.orgwith your e-mail address and your membership num-ber located above your name on the label.

NONPROFIT U.S.POSTAGE

PAIDNEW YORK, NY

PERMIT NO. 5327

National Kidney Foundation30 East 33rd StreetNew York, NY 10016800.622.9010

www.transplantrecipients.org

Tamika and Dindate Daysha

I HAVE LUPUS, WHICH HASCAUSED MY KIDNEYS TO FAIL SINCEI WAS EIGHT YEARS OLD. I wentthrough chemotherapy and pro-gressed to dialysis. One evening,my mother was late picking me updue to a traffic jam. This was after Ihad been struggling with dialysisfor over a year. The dialysis techni-cian, Dindate Daysha, offered totake me home because he wanted togo home to watch the Mondaynight football pre-show. He couldn’t leave until I left. I accept-ed his offer and we talked on theway home. We discussed all 20-plus of my family members whowere getting tested to donate theirkidney to me. Although he thoughtthose were nice gestures from myfamily, he adamantly explainedhow he would never donate a kid-ney to anyone (his mother includ-ed). As he was pulling out of thedriveway, my mother arrived andinvited him to dinner. He becamean instant family friend. Days later,he got my mother’s permission tobe tested as a kidney donor for me.He told her that he admired my willto succeed despite my odds. (Atthat time, I balanced obtaining a

university degree in psychologywith attending dialysis three times aweek.) Even though he was a com-plete stranger, he was the onlymatch out of over 20 people—including my parents and five sib-lings. I was happy at first, but afterhearing that his family was totallyagainst the organ donation, Ibecame worried. I hadn’t consid-ered how it would affect him untilthey began discussing it. Eventhough I despised dialysis, I wasn’twilling to accept his kidneybecause he was young. In fact, he isthe same age as I am. I couldn’tdeal with the possibility that hewould be injured trying to give sogenerously to me. He continued tobe very persistent and insisted thatone of his purposes on earth was togive me another chance at health.We went through with the trans-plant and everything has workedout perfectly. After the transplant,our relationship blossomed in waysI didn’t know were possible. Wegrew to become not only physicallyconnected, but spiritually connect-ed. Of course, I still have Lupus,and there have been numerousscares that my health was deterio-

rating or that there was a transplantsetback. Through it all, my donorbecame my confidant and neverleft my side. In fact, after remain-ing very close friends, we decidedto get married on December 11,2005! This is the second anniver-sary of our kidney transplant!

We try to share information withpeople about the lives of donorsand recipients before, during, andafter the transplant process. Wefeel if more people are able to seethe process, they will donate, as itwon’t be such a mystery. It willhelp to alleviate doubts potentialdonors may have about theprocess.

Tamika Dobbins lives with her husband in Memphis, TN. T

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An Unexpected DINNER DATEBy Tamika Dobbins, Kidney Recipient