SUMMER/FALL 2007 VOLUME 14 NUMBER 1

Transplant Chronicles is a transaction Program of the National Kidney Foundation. have , will : schedule, you may have to take your transplant travel meds during the flight. Unless you’re traveling tips for recipients in a movie, it’s hard to get down to the cargo hold from the passenger By Jack Fassnacht, Kidney Recipient compartment. Like many of you, I’m a traveler. I want to see as much of this beautiful world as I can Click here to continue on page 3 before my time is up. And thanks to the miracles of dialysis and transplantation I have lived longer in this and enjoyed more time traveling than would issue… have been possible a mere 65 years ago.1

When I first went then you originally planned. By tak- 1 have transplant will travel on dialysis in ing more than you think you will 1989, I chose CAPD (Continuous need, you’ll ensure that you don’t 2 editor’s desk Ambulatory Peritoneal Dialysis) run out of your medicines. I count 4 because I thought it would give me ‘em out before I go. tips for nutrition and exercise more freedom to travel. That may or — 6 weight management may not have been true; with proper Keep your medicines in planning, people on hemodialysis their original bottles. 2 7 returning to work can travel just about anywhere. But Although you may be tempted to transfer your medicines to smaller the point is I didn’t want kidney 9 People Like Us failure to mean the end of my travel containers to save space, keep them in their original bottles. That traveling days. 10 way luggage inspectors will know transplant news digest Now that I have a kidney transplant, what you are carrying and be less recipient 12 recipient voices it’s even easier to “pick up and go.” likely to hold you up at airport voices But having a transplant still requires security. And having the original 13 teens & transplant a little extra planning. If you are a labeled bottles can make it easier to transplant recipient planning a trip, fill your prescriptions if you 14 e-mail support group here are a few tips to help make sure somehow run out. your trip goes smoothly and safely: facts about 15 transplantation facts about transplantation —If you are flying, keep Take a greater supply of youR medicines with your medications than 3 16 school days 1 you. Don’t risk losing your medi- you will need. Due to car prob- cines with your checked luggage. lems, missed flights, or just the 18 West Nile Virus Carry your medicines with you desire to enjoy one extra day at the on the plane in a carry-on case. 19 beach, trips sometimes last longer the anniversary (poem) Depending on your medicine-taking value of a 20 value of a pharmacist pharmacist

NEXT PAGE 01-70-1401 editor’s desk

editor’s desk… Laurel Williams, RN, MSN, CCTC Editor-in-Chief

Volunteer Editorial Board ust the other day I heard a turned to Mrs. White and just smiled. Laurel Williams, RN, MSN, CCTC Jtrue story that talks about That was all she needed to know that Editor-in-Chief University of Nebraska Medical Center overcoming adversity in life— this young man would be going far Omaha, NE something many of us may relate too. with his talent and commitment. Megan A. Tichy, RD It is about a seven-year-old boy in the San Francisco, CA Not too long after that meeting, the 1900s who had an amazing talent for Dean S. Collier, PharmD boy’s father lost his job. The boy had University of Nebraska playing the piano. He had a dedication Omaha, NE to stop his piano playing to go out and commitment to learning to play Jack Fassnacht and work to help support the fam- Chicago, IL far beyond his seven years. His family ily. Though he played on occasion, Joshua S. Goldberg, teen editor recognized his abilities and started him Encino, CA his dream to become a concert pia- off with piano lessons twice a week Shirley Schlessinger, MD nist had been replaced by what was University of Mississippi Medical Center with the woman next door. This little happening in his world—the need Jackson, MS boy practiced every morning at 5:00 to help his family, to focus in dif- Victoria L. Shieck, RN, BSN, CCTC am. His piano teacher recognized this University of Michigan Health System ferent directions and eventually go Ann Arbor, MI child’s talent as well and realized he to war in support of his country. Debra J. Tarara, RN, BSN, CCTC would need a different type of instruc- Mayo Clinic Rochester, MN tor to help him reach his potential. So That boy’s name was Harry S. Truman, Rebecca Hays, MSW she contacted Mrs. E.C. White who rd University of Wisconsin Hospital the 33 president of the United States. Madison, WI was a concert pianist and an instruc- Though he could have gone on to Chris L. wells, PhD, PT, CCS, ATC tor to further this child’s education. He be a concert pianist, the challenges University of Maryland continued to take lessons and practice Baltimore, MD of his life took him in another direc- Jim Warren, MS daily and excel in his endeavors. One tion—a direction that gave him a far Transplant News day Mrs. White told him that one Baltimore, MD greater impact than he probably ever of his idols, a Polish pianist named Editorial Office imagined. I think this shows us that National Kidney Foundation, Inc. Paderewski, would be playing in a we may not know why certain things 30 East 33rd Street, New York, NY 10016 800.622.9010, 212.889.2210 nearby town and invited the boy to happen in our lives, but we should www.kidney.org attend the concert. Of course, he was embrace change, move forward in a Editorial Director: Cathy Paykin, MSSW thrilled to be invited to the concert Executive Editor: Gigi Politoski positive direction and discover what Managing Editor: and afterwards was taken backstage to Sara Kosowsky potential we have within us. TC Publications Manager: James McCann meet the Master himself. Paderewski Design Director: Oumaya Abi Saab Constituent Council Manager: Erin Kahle asked the then-teenager if he would [email protected] mind playing for him. The teen did. Transplant Chronicles is published by the National Kidney Foundation, Inc. While he was playing, Paderewski Opinions expressed in this publication do not necessarily represent the position of the National Kidney Foundation, Inc. © 2007 National Kidney Foundation, Inc. Published by the for transplant recipients of all organs and their families. be HEA VOICE RD our t y le Log on to tell us what you think! Read others’ responses... www.recipientvoices.org “What are your experiences with Last issue we asked: medications’ side effects and in what ways did you cope?” Click here to read the responses on page 12

2 Transplant Chronicles VOL. 14 NO. 1 PREVIOUS PAGE NEXT PAGE CONTENTS traveling tips

Continued from page 1

—Don’t let a change in —Beware of too 4 time zones throw you 6much sun expo- off schedule. Your doctor may sure. We all know, or have told you that you have a two should know, that our to three hour leeway in taking your medications can make us daily medicines. (Check with your sensitive to sun exposure doc to be sure of this.) If so, then and, for many of us, more if you are traveling to a destina- susceptible to skin cancer. tion in a time zone within two to Since vacations often take three hours of your home, you can us to sunny locations, ignore the time change and take pack and use proper sun your meds at the same clock time protection in the form as you would have at home. In of hats, sunscreen, long- other words, if you take your meds sleeved t-shirts, etc. Use common rinse my teeth with bottled water at 7:00 am and 7:00 pm like me, sense by limiting your outdoor after brushing. you can stay on a 7:00 am/7:00 pm activities during the hours of great- local time schedule if you travel up est sun exposure, usually 10:00 am —Check with your doc- to three time zones away. to 4:00 pm. Take an indoor siesta 9 tor about vaccina- during those hours. tions. Vaccinations, such as for If you travel farther than that, you malaria, may be recommended for may have to adjust your medicine —Eat wisely. Try the some destinations. If you are plan- taking schedule to a different local 7 local specialties, but eat ning to go to a place where shots time. To take an extreme example, wisely. Minimize your chances are recommended, check with your I’ve traveled 12 times zones away of getting diarrhea by avoiding doctor well before your trip about from my home and have simply uncooked foods, except for peeled whether the shots are a good idea reversed my medicine schedule so fruits and vegetables. Take an anti- for you. And tell the clinic where that I take my 7:00 am meds at the diarrhea medicine along with you you get your shot(s) that you are a 7:00 pm local time, and vice versa. just in case. (Ask your doctor which transplant recipient. Consider tak- When I get home I’m back on my one is right for you.) If you have ing mosquito repellent with you. usual schedule and haven’t missed dietary restrictions and are travel- taking any medications. (It can help ing on a flight where meals will — Have Fun! Transplant to carry an extra watch set to your be served, your airline carrier can 10 recipients can do almost home time.) accommodate you if you tell them anything other people can do. The in advance. U.S. Transplant Games are proof —Carry a list of your of that. So get out there and have 5 medICATIons with you. —Be cautious about fun! Hike. Ski. Golf. Swim. Scuba Carry a list of your medications— 8 drinking the water. dive. Run with bulls in Pamplona. and dosages—with you in your wal- People who are immunosuppressed Well, maybe that last one isn’t let or purse. Include your doctor’s catch diseases easier than others. such a good idea, but you get the name and phone number on the list, Tap water in many countries is not point. My motto: Do as much as along with your transplant center’s as bacteria-free as it is in the U.S., your body lets you. And send NKF a phone number, and the name and because it is often not intended for postcard while you’re there! TC phone number of a close relative or drinking. Ask the locals if the tap Log on to tell us what you think! Read others’ responses... two. Then, if you lose your bottles, water is safe to drink. Obey signs 1 www.recipientvoices.org you can have new prescriptions warning you that the water is not The first dialyzer (artificial kidney) was constructed “What are your experiences with filled. Consider purchasing a medical for drinking. When in doubt, drink in 1943 by Dr. Willem Kolff. Last issue we asked: ID bracelet for serious emergencies. bottled water. I sometimes even medications’ side effects and in what ways did you cope?” Click here to read the responses on page 12

PREVIOUS PAGE NEXT PAGE CONTENTS Transplant Chronicles VOL. 14 NO. 1 3 nutrition & exercise

tips for nutrition and exercise By Chris L. Wells, PhD, PT, CCS, ATC At the beginning of 2007, many of you made resolutions to improve some aspect of your lIVES. Many of you have promised yourselves to eat better, exercise more, and live healthier. By the time this article makes it into print, only a handful of you will still be holding true to your resolutions. The following will briefly discuss some simple ways to make life-long behavioral changes by taking small steps to improve your diet and activity level.

There are several reasons why One strategy for understanding participating in any activity that is resolutions frequently fail to be yourself is to spend one week above and beyond your work day? incorporated permanently into daily keeping a log about the behavior How much time watching TV or life. Many times the resolutions are you want to change. This will allow working on the computer are you just too big and sudden to make all you to better understand your doing during the day? How often at once. Frequently, the resolution behavior and look for any trends. are you using an elevator? How close is not fully examined to determine Be true to yourself during this week; do you park to the front entrance of what it will take to stay true to do not alter your behavior and be stores? your conviction. There is a lack of honest in your recording. Record all planning. Finally, many times your that you eat, when you eat, estimate Now you should select one thing resolution will affect your family quantities of food and any emotion you want to change about your and inadvertently their behaviors you are feeling while eating. You eating and activity level. This will sabotage your efforts. should also record the types of change may be as small as drinking one less soda or eating one less An activity change may be parking further away from serving of bread. An activity change the entrance to a store, using the stairs, or doing some may be parking further away from the entrance to a store, using simple exercises during TV commercials or substituting the stairs, or doing some simple 30 minutes of TV for a family walk. exercises during TV commercials or substituting a family walk for 30 The first step to making any lifelong activities and how long you engage minutes of TV. Try to comply with change is to look at your present in them throughout the day. these small changes until you no behavior. You need to completely longer struggle to be compliant understand how frequently you The next step is to examine your with the new behavior. engage in the behavior you want logs and look for trends. Some to change. If your resolution is to examples of things to identify are: It may take several weeks to make improve your weight, you need to eating any one food too frequently, a permanent change towards a new look at your diet and activity level. eating under stress, and eating and improved healthier lifestyle. Be You need to know exactly what you late at night. For example, are you patient with yourself. Once you are are eating, when you are eating and drinking more than one or two ready, select another behavior to how much time you spend eating, six ounce sugar drinks like soda? tackle. Every six months, repeat your and if your eating is associated with Are you eating a lot of candy, not diet and activity logs and reexamine any behaviors like feeling bored, enough fruits or vegetables, too your behaviors in order to select the anxious or upset when you eat. If much bread or potato chips? Are best changes to make. your goal is to be more active, you you eating sufficient amounts of need to know what time you spend protein, like chicken, turkey and On the next page are some simple engaged in activities above and fish? How much red meat are your diet tips and strategies for improving beyond your daily routine. consuming in a week? Are you your eating and activity habits.

4 Transplant Chronicles VOL. 14 NO. 1 PREVIOUS PAGE NEXT PAGE CONTENTS nutrition & exercise

Below are some simple tips and strategies for improving your eating and activity habits.

NUTRITION Tips 8. Cook a couple meals on the weekend and then divide the food into portions so you have healthy food already prepared for the week. 1. Always eat a breakfast that includes protein (milk, 9. lImit the amount of times you eat out. cheese, chicken, or eggs) in order to establish a stable blood sugar for the day and satisfy your appetite. 10 read the food labels to begin to become familiar with the ingredients. 2. oNCe you have placed the food on your plate, eat ¾ of the food on your plate then wait 20 11. select food that does not have high minutes to make sure you are still hungry before you fructose corn syrup in it or at least make sure it is not finish the remaining food. one of the first five ingredients.

3. use a smaller plate and bowl. 12. Select food that is low in saturated fats, which are typically less processed food. 4. Do not eat in front of the TV or while reading the paper. Attend to what you are eating. 13. Limit the amount of simple sugars (candy, soda) you consume daily. 5. Plan the one or two snacks you will eat during the day. 14. substitute a prepared drink for water or at least a natural 100 percent juice drink. 6. Try to select food that is not processed. Eat steamed vegetables instead of canned vegetables. 15. Do not eat after 7:00 pm or at least two to three Prepare a small steak instead of eating Steak-ums® or a hours before going to bed. commercially prepared hamburger. 16. Eat slowly to avoid overeating; take 20–30 minutes to eat a meal. 7. Plan your meals for the day.

6. Plan some of your work meetings as walking Activity Tips meetings. Take along a recorder to keep notes if necessary. 1. eNgage in some form of physical activity or exercise at the same time of day each day. It is best to select 7. During commercials complete some simple a time of day that you can consistently dedicate yourself strengthening exercises instead of going to the and be active for at least 30 minutes, five days a week. kitchen.

2. Trade a half hour of computer use or watching 8. Plan an activity with friends and family on TV for an activity. Go for a walk, toss a ball around with your day off. your kids or dog, do some gardening, dance to some 9. select activities that you enjoy. You do not have music. Get your family involved. to suffer on a bike or treadmill. Go outside and do some 3. fIND an exercise partner. It is harder to make gardening, try golf (walk the course, pull or carry your excuses about not keeping an exercise session if someone clubs), or play table tennis. else is counting on you. 10. Establish a goal such as training for a 4. Park further away from your work or stores. community walk/run event for charity. 5. Take the stairs instead of the elevator. 11. Vary your activities to avoid boredom and overuse injuries.

It is important to talk to your doctor before beginning that is muscle, amount and degree of changes you make, any exercise program to ensure that you are healthy and your dedication to keeping your goal. Keep in mind enough to safely engage in exercise. Also, talk to that any positive change you make in your diet or activity your physician about any changes you want to make to level is making you a healthier person. Give yourself six to your diet to make sure there are no adverse effects from 12 months to really see changes and progress. Be patient medications you may be taking and to ensure the proper and kind to yourself; changing behaviors is hard. TC function of your organs such as your kidneys and heart. Resources: American Heart Association: www.americanheart.org Go to the Check your progress once every two to four weeks. Do link “Healthy Life Styles.” AHA’s number is 800.242.8721; ask for not obsess over the scale every day unless you have been information on healthy living. instructed to weigh yourself daily for a medical reason. National Kidney Foundation: www.kidney.org Under the The progress you make will depend on several factors, link “Patient” you can go to “Nutrition, Diet” and “Fitness/ including your age, gender, amount of your body weight Rehabilitation” for more information. NKF’s number is 800.622.9010.

PREVIOUS PAGE NEXT PAGE CONTENTS Transplant Chronicles VOL. 14 NO. 1 5 staying fit

weight manage ment weight management By Megan Tichy, RD

Have you ever had a bad day that progressed into binge eating or a day where you simply ate whatever you wanted? If so, this is common and among the many challenges faced when trying to keep weight under control.

This might be the only challenge for some individuals exercise and attitude can be very helpful too. Balance in keeping their weight at a healthy level. For others, with snacks and meals can consist of planning ahead it might be following myths or misconceptions of to ensure that you have carbohydrates, protein, and fat what healthy eating should be or simply not exercising at each meal. Carbohydrates should consist of 50–60 enough. percent of your meals while protein should consist of 20–25 percent of your meals and fat should consist of Balance is one of the many key components in 20–25 percent of your meals. This is just one part of weight management. This is important to think about the meal; the second part should be choosing which when approaching your meals as well as your daily life. carbohydrates, proteins and fats. Some suggestions are Eating well is not the only component of this balance; listed below:

Carbohydrates: Fat:

Aim for five to nine fruits and vegetables per day. In order to meet this goal, try including a Aim to include monounsaturated oils and fruit and vegetable at every meal and snack. essential fatty acids from foods such as: Aim for fiber rich starches. Grains with three • Avocados • Olives grams of fiber or more are wonderful choices. • Almonds • Salmon • Canola oil • Shrimp Include non-fat or low-fat milk products at • Peanut butter • Flax seed least once per day in a meal or snack. Low fat • Olive oil • Flax oil or non-fat milk not only provide calcium, but • Cashews • Catfish also carbohydrates and protein. (And needed fat, if the milk product is low fat). Limit saturated and trans fats: • Bacon • Shortening • Butter • Frozen french Protein: • Cream fries • Cheese • Chips • Coconut • Commercially Include lean sources of protein in meals • Sausage prepared and snacks such as: • Ribs baked goods Chicken • Ice cream Turkey Fish Egg whites Dried beans Low-fat or fat-free milk/ Click here to continue on page 12 milk products

 Transplant Chronicles VOL. 14 NO. 1 PREVIOUS PAGE NEXT PAGE CONTENTS work & transplantation

Returning to WORK after Transplantation By Rebecca Hays, MSW, LCSW

Since your transplant, I hope you have more energy and more verve. Adjusting to transplant is a gradual process, and you may still be sorting out life post- transplant—actually, I suppose this is never “done” exactly.

Many people, although relieved at want to emphasize that returning idea by her transplant doctor. how much better they feel, are also to work takes planning, teamwork, In addition to part-time work, there disappointed that they don’t feel and resourcefulness. In this are other ways to gradually find as well as they did “pre-illness.” article, you’ll read about several out whether work will—pardon the And, of course, this limbo-land people’s experiences; details of expression—work. Setting a daily of “feeling better but not 100 their situation, including names, schedule helps. Another way to “start percent” makes returning to work a have been changed to protect their small” is to volunteer for an agency complicated process. privacy. that interests you—this can be fun and is a handy reference for future First off, if you had to stop working Get your feet wet first: job applications. because of your illness, I want to “Juan,” who got his transplant acknowledge that as a huge loss. three years ago, found out that his Connecting with your local state or There’s a myth out there, and this long-term disability status at his county department of vocational may even exist in your family, job would end in a few months. or occupational rehabilitation can that going on disability feels like a He talked with his old boss about help you think through options, vacation. But most people tell me returning to work part-time at first and get additional training. Ask that stopping work was one of the (his union helped with this) got your transplant social worker for most profound losses from getting the (tentative) OK to go back to a referral. Life Options is a terrific sick: they miss the financial stability his heavy-lifting, cold-weather job resource for folks with kidney for themselves and their families, from his transplant coordinator and disease in thinking out a return-to- the sense of accomplishment at transplant nephrologist, and gave it a work plan; materials, including a work, and the companionship of co- try. A year later, he came back to the humongous “employment guide,” workers. transplant clinic to say how glad he are at www.lifeoptions.org or call was to be back at work. 800.468.7777. The National Kidney You may have started to think about Foundation has a rehabilitation what it would be like to return Others have created part-time “jobs” brochure series through www. to work. I want to build on that within their family or network of kidney.org or 800.622.9010. here. There is tons of evidence that friends. “Rita,” who got a kidney Although these materials are working after transplantation helps transplant last year, now babysits for designed within the kidney people become more independent, her granddaughter two days a week. community, they can be relevant brings in more income (obvious, She is helping her family and gets for anyone living with transplant! eh?), and generally improves exercise to boot. Certainly, including For additional support, you can join quality of life. It may even help your family in the plan for increasing a transplant listserv by e-mailing you live longer. This does not your activity is key—you’ll benefit [email protected] with mean that returning to work will from their support and teamwork. In the message: “subscribe transplant.” be simple or quick. It’s often scary Rita’s case, she hopes to eventually [Also see article on page 14 about at first—and being worried about earn more money with a job at a e-mail support groups.] a “failed” return to work, or even local preschool, and plans to run this a “successful” return, is normal. I Click here to continue on page 8

PREVIOUS PAGE NEXT PAGE CONTENTS Transplant Chronicles VOL. 14 NO. 1  work & transplantation

a rural area where everybody knows Returning to WORK after Transplantation him and about his transplant. He continued from page 7 decided to say something like, “Look, Think through how your health education, or new interests come in if I can keep track of 44 medicines a status and transplant may affect handy. A local job bank, or a local day, I can keep track of inventory—I what you can do at work: You community college can help you am way more organized than know better than anybody how you practice what to say in interviews, on anybody else around here. Yeah, feel. If you have concerns about how applications, or in your resume. there may be an occasional day when a particular symptom will affect your I’ve got to call in sick. But overall In some cases, it makes sense to be ability to work, plan to bring this up I’m stable, and when I’m here, I’ll be upfront. For example, “Larry” lives in at your next check-up. Ask specific here 110 percent.” It worked. questions once you have a plan, or even a dream, in mind. For example, Visit www.transplantrecipients.org ⇒ resources to read this and other articles. “Bill,” who got a kidney transplant six years ago, was offered a job in >> How work may affect your insurance benefits: his friend’s tree-trimming business. There used to be a major “trap” where, once you became disabled, it He talked with his transplant doctor was risky to go back to work, because you’d lose your health insurance about whether the amount of heavy benefits. In an old study, a third of heart transplant patients said this fear lifting was ok, and whether the is what kept them from returning to work. There are now much better exposure to tree dust (Well, this isn’t safeguards in place: the technical word, I’m sure, but go 1. If you are eligible for SSDI and work, you can keep your Medicare with me here!) would be dangerous for at least eight and a half years, long after the cash benefits stop. Part given his suppressed immune system. A will continue for free; you have to continue to pay the premiums With minor accommodations—like for Parts B and D. wearing a mask under certain circumstances—the doctor gave him 2. If you got a kidney transplant, you will continue to qualify for the go-ahead. Medicare for three years after your transplant regardless of your work status or disability status. How do I explain my transplant to employers? 3. If you are eligible for Medicaid and work, at least 28 states will Many people have asked on the allow you to “buy-in,” or purchase, Medicaid for much less than the listserv, “How do I explain my “spend-down” you might typically have to pay—it works like an illness to a future employer?” and insurance premium. “How do I explain that I’ve been 4. Thanks to the Health Insurance Portability and Account- out of work for years?” First off, you ability Act of 1996, large employer group health plans (insurance don’t “have” to explain anything offered through a job) can no longer turn you down, or charge you to anybody—it is, of course, against more, for having an expensive medical condition. There may be a the law to discriminate against preexisting condition clause for up to a year, in which you pay the employees based on health status premiums but do not get coverage for existing health problems (such and, in problem situations, you as transplant). can contact the Equal Employment 5. If you have health insurance through a job but are in a Opportunity Commission or a local preexisting condition waiting period, you can apply to the health advocacy organization (one in companies that make your medicine for assistance. You may also be Wisconsin is called ABC for Health). able to get high-risk health insurance, offered through most states, at That said, if you’ve been out of the a reduced premium during this time—though even the reduced rate workforce for awhile, it helps to can be expensive. rehearse what you’re looking for in For more information, check out www.ssa.gov/work/index.html a job now, what your skills are, and and look at topics such as “What happens to my Medicare benefits if I an (honest) explanation of what work?” and “What happens to my Medicaid benefits if I work?” you’ve been doing lately. This is where volunteer work, new training/ Click here to continue on page 9

 Transplant Chronicles VOL. 14 NO. 1 PREVIOUS PAGE NEXT PAGE CONTENTS >> How transplant and work may drop). You can use this trial period to enroll in affect your disability benefits: job training/school and, for SSI recipients, write a A little background on how ongoing disability “plan for achieving self support,” which can include eligibility works: Anybody who earns Supplemental assistance buying equipment for your own business. Security Income (SSI) or Social Security Disability In addition, if you got SSDI, and your monthly work Income (SSDI) through social security must income drops below $830 per month any time in complete a routine “disability review process” the next three years, you can get your disability every couple years. These are forms that ask for check again that month. If a decline in your health health updates and are sent directly to you. Social means you have to stop work within six months, Security collects information from you and from social security calls it an “unsuccessful work effort” your medical team about how your health currently and benefit eligibility is unaffected.F or more affects your ability to work. Keep in mind that both information, check out www.ssa.gov/work/ SSI and SSDI eligibility are based on being unable to index.html work ANY job, not just the job you used to have. For example, “Sam” didn’t think he would ever feel Certainly, having had a transplant will affect up to going back to work as a car mechanic— since this disability review process—if you qualified his transplant, he feels tired sometimes and also for disability solely on the basis of organ failure, suffers from neuropathy. He also knew he wanted you may no longer be considered disabled once a job with health insurance. He connected with you’ve recovered from the transplant surgery. Of the Department of Vocational Rehabilitation in course, you may also have a collection of health Wisconsin, enrolled in a Ticket to Work program, conditions or symptoms that will be officially and is now in training to be an x-ray technician. He “disabling” for the long term. Either way, if you figures his own extensive experience with the health are earning SSI or SSDI, there are some helpful care system gives him some “inside scoop” on work incentive programs that can be a help if you medical vocabulary and how the system works. His give a return to work a try. benefits have continued throughout his schooling, and he will finish the programM ay 2007. As always in coping with chronic illness, it helps to plan ahead and learn what resources may be If you are earning a disability-related pension from available. You can sign up for a “ticket to work,” a previous job, check the job policy or the job’s which then allows a “trial work period” for up to human resources office about how returning to work nine months, during which time your SSDI might affect these benefits. check is unaffected (though your SSI check may

The National Kidney Foundation (NKF) launched a new People Like Us E-Advocacy Network this spring that allows you to easily advocate Congress on behalf of individuals affected by chronic kidney disease. Please join and help NKF in the fight against kidney disease. You can sign-up here: http://capwiz.com/kidney Once you join, NKF will send you periodic Action Alert e-mails on current legislative activity impacting kidney disease, transplantation and donation. NKF’s The Action Alerts will keep you informed about these important issues, and enable you to advocate to your Members of Congress. Each alert contains a “People sample letter that you can personalize and, with a click of your mouse, e-mail directly to your Members of Congress. Like Us” Join here: http://capwiz.com/kidney You also can help build our e-advocacy network by asking your colleagues, E-Advocacy patients and friends to join as well. Thank you for your support! Please contact Jayne Mardock with any questions: [email protected] ; Network 800.889.9559.

PREVIOUS PAGE NEXT PAGE CONTENTS Transplant Chronicles VOL. 14 NO. 1  transplant news digest

from the editors of Transplant News By Jim Warren, editor and publisher Transplant News, edited and published by Jim Warren, is a twice-monthly newsletter for the transplant community focusing on developments in organ, tissue, eye and bone marrow procurement and transplantation. Transplant News Digest is written exclusively for quarterly publication in Transplant Chronicles. For more information about Transplant News visit: www.trannews.com Jim Warren

Deceased donors top 8,000 for The growth over the previous five would eliminate the growth of first time;Record 31,184 trans- years has been attributed mainly to the waiting list, and adding 4,000 planted in U.S. in 2006 the success of the Organ Donation annually would result in shrinking Breakthrough Collaborative which, the list. To achieve that, each of The number of organs donated due to its success, is now called the the nation’s 58 DSAs would have and ultimately transplanted in the Organ Donation and Transplanta- to increase the number of kidneys U.S. has grown steadily in the past tion Breakthrough Collaborative procured by 10 per month for 12 four years, and 2006 proved to be (ODTBC), managed by HRSA and months. another banner year, according to the Alliance for Organ Donation preliminary data announced by the and Transplantation. Federal ruling opens way for federal government. more paired donations The ODTBC held its Learning Ses- In a step that proponents say could For the first time ever, the number sion 2 on April 17–18 in Atlanta, save thousands of lives, the U.S. Jus- of deceased donors exceeded 8,000 GA, to launch the second phase of tice Department has cleared the way in 2006 and, when coupled with the collaborative. They introduced for hospitals to begin performing the 6,723 organs donated by living a goal of eliminating all deaths on organ transplants in which multiple donors, resulted in 31,184 organs the waiting list by the year 2013 by donors give kidneys to unrelated transplanted, according to the spreading known best practices to recipients. Health Resources and Services Ad- the nation’s largest hospitals and to ministration (HRSA) of the Depart- all transplant programs. “It’s going to make dramatic dif- ment of Health and Human Services ference in removing barriers we’ve (HHS). The results of the first initiative all faced trying to perform paired underscore the optimism expressed transplants,” said Dr. Richard B. Of the organs transplanted, 78.4 that the goals are achievable. Con- Freeman, Chairman of the Legisla- percent came from deceased donors sider: tive Committee of the American and the remaining 21.6 percent n over 300 hospitals in the U.S. Society of Transplant Surgeons and from live donors. have already achieved organ a surgeon at Tufts-New England donation rates of 75 percent or Medical Center in Boston. “It’s go- The number of Americans receiving greater for at least 12 months. ing to really create a large number kidney and liver transplants also set Many other large hospitals, clus- of kidney transplants, nationwide,” a record. A total of 17,084 kidney tered in certain donation service said Robert Montgomery, an Associ- transplants were performed in 2006, areas (DSAs) also have average ate Professor of Surgery and Director which represented a 15.6 percent donation rates that are well above of Johns Hopkins Hospital’s Com- increase since 2002. In addition, the national average. prehensive Transplant Center. a record number 6,650 liver trans- n Thirteen entire DSAs have been plants were performed, compared to able to achieve an average 75 The Justice Department issued 5,331 in 2002. percent conversion rate for a 12- a memo saying that nothing in month period since the onset of federal law prevents someone from The number of minority donors also the collaboratives. donating an organ in exchange increased slightly in 2006. African- n Two DSAs have exceeded a rate for having a relative or loved one Americans comprised 15.5 percent (OTPD) of 3.75 or higher of receive an organ from someone else. of deceased donors and Hispanics organs transplanted per donor for Last year, 4,056 kidney patients 13.7 percent; HRSA pointed out at least eight months. died while awaiting transplants, ac- both rates are slightly higher than cording to the United Network for their proportion of the overall U.S. Participants at the learning session Organ Sharing. population. were told that if 3,000 new kidneys were transplanted annually, this Click here to continue on page 11

10 Transplant Chronicles VOL. 14 NO. PREVIOUS PAGE NEXT PAGE CONTENTS Poll shows public support of or- African-Americans (31 percent) will- The announcement was made gan/tissue donation increasing ing to do so. Other minorities were by Elizabeth Duke, administrator The percentage of Americans who slightly more willing with Latinos of the Health Resources and Ser- have officially designated them- (39 percent) and Asians (39 percent) vices Administration (HRSA) in the selves as organ donors has nearly saying they would give permission March 9, 2007 Federal Register. doubled since the early 1990s and on their licenses. The Final Rule went into effect on even more say they would donate that date. their organs or those of a family The survey also found that beliefs member under many circumstanc- do affect the willingness to donate. The new rule means that transplant es, a new public opinion survey For example, the more than 50 programs that perform intestinal reveals. percent who answered “yes” when transplants must adhere to intes- asked if they believe organ donation tinal allocation policies developed The Gallup Organization survey can often transmit diseases such as by the OPTN and are subject to found that 53 percent of Americans HIV, hepatitis, West Nile virus were enforcement sanctions by the HHS have indicated their wish to donate significantly less likely to donate. if they fail to comply. on their driver’s license or signed an organ donor card, almost double And the concept of brain death still Intestinal transplantation—which the 28 percent who had done so in remains a mystery to many, with may include the esophagus, stom- 1993 when the last poll was taken. more than 22 percent agreeing with ach, small or large intestine, or In addition, almost three-fourths the statement—“It is possible for a any portion of the gastrointestinal (73 percent) said they would likely brain-dead person to recover from tract—is considered for patients give permission to donate their his or her injuries.” This group with irreversible intestinal failure organs regardless of whether they was also significantly less willing due to surgery, trauma, or acquired had taken action. to donate. or congenital disease that cannot be managed through the intravenous Nearly all the survey respondents— Burdick admitted that brain death delivery of nutrients, also referred 97 percent—said they would donate per se is not totally understood, to as total parenteral nutrition. a family member’s organs if they but credited the public with be- knew the person’s wishes ahead of ing “a little smarter than we give The first successful intestinal trans- time, about the same response as in them credit [for]” and professed to plant was performed in 1989. The 1993; however, in 2005, 71 percent be optimistic that progress is being OPTN adopted voluntary intesti- indicated they would donate a fam- made. For instance: “We’re working nal organ allocation policies and ily member’s organs when they did with the entertainment industry as began maintaining a list of patients not know their wishes—a signifi- closely as we can to keep their facts waiting for intestinal transplants in cant increase over 1993 when only straight as possible,” he said. “The 1993. On December 31, 1993, there 47 percent said they would. public often has the ability to see were only 43 candidates on the the more ridiculous” plot lines in waiting list for an intestinal trans- “The fact that 97 percent of respon- TV shows and movies. plant, compared to 169 patients on dents said they would donate a fam- the list in 2003. ily member’s organs if they knew Not surprisingly, the current state their wishes ahead of time is huge,” of access to health care in the U.S. The number of intestinal trans- James Burdick, Executive Director is reflected in the response to the plants performed has more than of the Division of Transplantation question—“Given equal need, a tripled in the past decade; how- (DoT), told Transplant News Digest. poor person has as good a chance ever, the volume of transplants per “The finding that 71 percent would as a rich person of getting an organ transplant center is relatively small, donate even if they didn’t know transplant.” A total of 52 percent HRSA noted in the Federal Register the family’s wishes…is a 20 percent disagreed or strongly disagreed with announcement. Ten transplant increase over 1993 findings.” this statement, while 49.3 percent centers performed one or more agreed or strongly agreed. intestinal transplants in 2002 and The news was not all good. The only five performed more than 10 poll also found that disturbing and Intestine transplants added to transplants. The overall median significant pockets of mistrust and organs covered by HRSA waiting time was 319 days for pa- misunderstanding still exist among Intestinal transplants have been tients added to the list in 2001. minorities, particularly African added to the list of human organs Americans. For example, 61 percent covered by the Organ Procure- In 2005, there were 178 intestinal of Caucasians were most likely to ment and Transplantation Network transplants in the U.S., the high- indicate their permission to donate (OPTN) and the list of human or- est number ever. There were 175 on their driver’s license, almost gans defined in the NationalO rgan performed in 2006.TC double the number of Transplant Act (NOTA).

PREVIOUS PAGE NEXT PAGE CONTENTS Transplant Chronicles VOL. 14 NO. 1 11 recipient voices

journal and log of what is happening every day: let your VOICE be HEARD symptoms, improvements, setbacks and feelings. Last issue we asked: I also record my daily weight, blood pressure, temperature, drug dosages, times I take medicines “What are your experiences with and side effects. I also communicate frequently medications’ side effects and in what with my local nephrologist and my transplant ways did you cope?” coordinator, because they help keep me grounded and make adjustments. I keep a list of the questions I And you said: ask and the answers I received, and try not to hesitate “I was fortunate to have so few problems. I did to ask more, even though they may seem simplistic. acquire the tacrolimus shakes. For a receptionist, I communicate everything to my husband so that I that can cause typing mistakes. A good sense of have a second ear and brain to help me make sense humor and time took me through that period. of everything that is new to me. Most importantly, Steroids, however, caused a brief period of the most I pray for strength, peace and health, and for my horrible anxiety I have ever experienced. If ever a sister’s gift of life (my kidney). And hundreds of other kidney could talk, mine did, telling me it wanted people are praying for me too, so I have wonderful out. Fortunately I was staying with my brother and spiritual support.” a friend while recuperating from surgery and my —Janis Viren friend called the transplant team and explained the seriousness of the side effects. I was given something After reading our articles on healthy weight, we’re asking: to calm me down, help me sleep and my prednisone dose was quickly lowered.”—Linda Essner “What helps you maintain a healthy weight?” “I am a new kidney transplant recipient (March 5, 2007). My tacrolimus level is not stable and that, Tell us by logging onto along with several of the other medications, is causing weakness and insomnia. To cope, I keep a www.recipientvoices.org

weight management Continued from page 6 The American Heart Association There are also excellent text books Seeking out clinical support from recommends exercising for 30 out there that can be found at your doctor or a local dietitian minutes, seven days per week for www.eatright.org I have also can be vital to your success. Go to average, non-transplant people. This suggested some books below: www.eatright.org and click on amount of exercise can not only “Find a Nutrition Professional” in increase health benefits and decrease 365 Days of Healthy Eating from the upper right hand corner. risks of health complications, but the American Dietetic Association it can also help elevate mood, by Roberta Larson Duyff, MS, RD, Best wishes in finding a nutrition motivation towards weight loss and FADA, CFCS. Wiley, 2004. balance that meets your health and burn calories. If you are inactive at Healthy Eating Every Day weight management needs! TC present, remember doing anything by Ruth Ann Carpenter, MS, RD, is better than nothing! and Carrie E. Finley, MS. Human Kinetics, 2005. Utilizing resources available to you

can help keep weight management For more information go to: on track. Try going to http:// mypyramid.gov and creating your www.kidney.org ⇒ Patients ⇒ A to Z Health Guide own personal food guide pyramid. ⇒ Transplantation ⇒ Nutrition and Transplantation

12 Transplant Chronicles VOL. 14 NO. 1 PREVIOUS PAGE NEXT PAGE CONTENTS teens & transplant

teens & transplant By Therese Moore, RN, CCTC, Pediatric Transplant Coordinator, Mayo Clinic We can change a teen’s life with transplantation; however, we can’t change the fact that they are still teenagers. Defined as a stage of development that is characterized by a quest for independence, the teenage years can be the best and the worst of times.

According to the North American worries and responsibilities. The some ways to help teenagers move Pediatric Trials and Collaborative most common areas of concern are toward independence: Studies’ annual report, there were with taking medications (including nearly 600 children under the age of dealing with side effects), getting l Educate teens about 18 who received a kidney transplant blood drawn for lab tests, and their illness and give them in the United States in 2005. Thirty- clinic visits with their physicians, some control by including them eight percent of those were between which takes time away from school. in decisions regarding their the ages of 13 and 17. The key to Problems can arise simply due to transplant care. caring for adolescents who undergo forgetfulness, feeling sad or powerless, transplantation is understanding or from lack of trust in the medical l Some things are not their stage of development. It is staff. Simply put, if it doesn’t taste negotiable, as in taking normal for adolescents to experim- good, hurts, is scary, or is a hassle, it medications, obtaining blood ent with risky behaviors, including will be difficult to convince a teenager tests and seeing the doctor. not being compliant with their they have to do it. medical needs. Teens strive to l pIf com lications occur gain a separate identity from their Parents of all adolescents struggle from not taking medica- parents, or other authority figures, with the transition from childhood tions, encourage discussion and have difficulty understanding to adulthood, however, parents of of why this happened and how chronically ill children are often to prevent it from happening more resistant to this transition. again. Do not place blame.

Not only do teenagers with transplants have all the struggles that their peers do, they have additional worries and responsibilities.

It is vitally important that teens l Be honest and hopeful be involved in medical decisions about their health and future. and caring for themselves so they and accepting things that are not have some degree of control over l Seek prOFEssional help concrete and detailed. Teens who their situation. Proper supervision for behaviors that affect physical have difficulty following their until the child is ready to act or psychological health. Teens medical care plan after transplant independently is critical. The with transplants need emotional are at higher risk for rejection or loss age that independence occurs is and physical balance to cope of their transplanted organ. different for every child; however, with their health. Parents with they need to know from the very added insight and awareness Not only do teenagers with beginning what the consequences will be able to help teens transplants have all the struggles that will be if they do not cooperate emerge from adolescence as their peers do, they have additional with the medical care plan. Here are self-directed, happy and healthy adults. TC

PREVIOUS PAGE NEXT PAGE CONTENTS Transplant Chronicles VOL. 14 NO. 1 13 support group how and why I started an interactive e-m@il support group By John Mitas, Liver Recipient

After my liver transplant (November 14, 2001), I went back to the pre- and post- transplant support group at the hospital. I found that I had quite a lot of questions, problems and side effects (one of which was neuropathy in my hands and feet) that were not appropriate to talk about in this group because it was so focused on the positive aspects of transplantation.

I understand that hearing about online support group has grown to or doctors. Since we have all been post-transplant problems may include people all over the world. through a real trauma in our lives, frighten some pre-transplant people, We help each other. we can help each other. but I think others like to know what they might encounter. My Our online support group is called John Mitas and Jennifer Sutt are the solution to this problem was to start the Kidney, Pancreas & Liver Co-Founders of ADTAS—Alliance for an online support group for those Transplant Support Group, Alliance Donation, Transplantation, Awareness who wanted more information and for Donation Transplantation and Support, home of the online to talk about post-transplantation. Awareness and Support (ADTAS). It support group; www.freewebs. It started with the people I knew is located at: com/adtas ; 951.689.2822 or post-transplant from my transplant http://groups-beta.google.com/ 909.795.7411; ADTAS@ DTAS.org center. I asked the social worker for group/Kidney-Liver-Pancreas- [See also article on page 7.] permission to start an “in-person” Support-Group post-transplant support group and the hospital gave me an ok! Shortly Even though our name after I started the support group, says kidney, liver and several people who were waiting pancreas, all transplant Internet Sites for wanted to know what the “post” individuals, including Transplant Recipients: thing was all about, and wanted caregiver families and The following Web sites have more information about after- friends are very welcome. We information about health, news, policy, transplant problems and side effects. now have our own transplant legislation, finances, insurance and So this group expanded to include support group that meets employment: pre-transplant individuals. twice a month. We really want www.kidney.org to try to help and support www.transplantrecipients.org It was like two different worlds as many individuals as we www.unos.org before and after transplant. I met can. We are talking to our www.ustransplant.org a kidney and pancreas transplant support group members about www.transplantliving.org recipient, Jennifer Sutt (KP recipient, advocating for themselves; www.organdonor.gov December 23, 2002). Jennifer and we try to help and explain www.a-s-t.org I think and feel the same way. We about multiply listing. We are www.medicare.gov both want to help and support here for support and they, in www.socialsecurity.gov others. She was a facilitator for the turn, support us. We really www.disabilityinfo.org kidney and kidney/pancreas support want to offer a venue that www.donorfamily.org groups at our transplant center. We will let individuals talk about www.livingdonors.org started working with each other issues or things they don’t If you have a Web site you would like as volunteers and support group understand without worrying to highlight visit the www.transplantrecipients.org message facilitators to give back and to help about possible repercussions board, write about it and provide a link! others at our transplant center. Our from their transplant centers

14 Transplant Chronicles VOL. 14 NO. 1 PREVIOUS PAGE NEXT PAGE CONTENTS FACTS about TRANSPLANTATION in the United States

On June 1, 2007, the OPTN National patient waiting list for organ transplants include the following:

77,159 registrations for a kidney transplant 73,123 patients waiting for a kidney transplant 17,247 registrations for a liver transplant 16,743 patients waiting for a liver transplant 1,664 registrations for a pancreas transplant 1,641 patients waiting for a pancreas transplant 231 registrations for a pancreas islet cell 230 patients waiting for a pancreas islet cell 2,373 registrations for a kidney-pancreas transplant 2,315 patients waiting for a kidney-pancreas transplant 211 registrations for an intestine transplant 209 patients waiting for an intestine transplant 2,640 registrations for a heart transplant 2,631 patients waiting for a heart transplant 116 registrations for a heart-lung transplant 116 patients waiting for a heart-lung transplant 2,369 registrations for a lung transplant 2,349 patients waiting for a lung transplant

104,010 TOTAL REGISTRATIONS 96,859 TOTAL PATIENTS*

NOTE: Figures as of August 31, 2007. OPTN/UNOS policies allow patients to be listed with more than one transplant center (multiple listing), and thus the number of registrations is greater than the actual number of patients. * Some patients are waiting for more than one organ, therefore the total number of patients is less than the sum of patients waiting for each organ.

Numbers of Transplants Performed 2006** (Total 28,934) 10000 kidney (no pancreas) (6,435 living donors) 17,094 8000 liver 6,650 pancreas (no kidney) 463 6000

kidney-pancreas 924 4000 intestine 175

heart 2,192 2000

heart-lung 31 0 Deceased Living lung 1,405 14,755 TOTAL 0 5000 10000 15000 20000

** Based on OPTN data as of May 25, 2007. Double kidney, As of May 29, 2007, 257 medical institutions in the double lung and heart-lung transplants are counted as one United States operate an organ transplant program. These transplant. transplant centers can be separated into organ-specific * During 2006, 6,229 patients were removed from the OPTN programs that include the active programs listed below. National patient waiting list for reason of death.

NOTE: Data subject to change due to future data submission or Organ-specific Programs correction.

248 kidney Transplant Programs 126 Liver Transplant Programs 144 Pancreas Transplant Programs 29 Pancreas Islet Cell Transplant Programs 45 Intestine Transplant Programs 135 heart Transplant Programs 58 heart/Lung Transplant Programs This data is from the United Network 66 lung Transplant Programs for Organ Sharing. For more information

851 TOTAL visit www.unos.org

PREVIOUS PAGE NEXT PAGE CONTENTS Transplant Chronicles VOL. 14 NO. 1 15 transplantation & school

school days, school days, days By Cindy Brown, MSW, LMSW, and Victoria L. Shieck, RN, BSN, CCTN

I think that all of us have some fond memories of our school days, whether they were grade school or high school. Going to school is a big part of being a child. For children who have chronic illnesses, school is especially important—not just for learning, but for socialization and maintaining a sense of normalcy. So, let’s start from the beginning and look at what you as a parent or guardian will need to do to help your child through some of the daily school challenges.

Pre-Transplant: team works very hard to protect approximately how long your child Depending on the type of organ your child’s privacy. If you have any will be out. Depending on the type transplant that is needed, the questions or concerns, talk with of transplant, most children will physical symptoms will vary. For the transplant team in advance be out of school for about 6 to 12 example, many children waiting for to review what information will weeks after transplantation. You a kidney, heart or liver transplant be shared. If your child has been should consult with your transplant may have fatigue. Depending scheduled or listed for a transplant, nurse coordinator to determine how on the degree of fatigue, many let the school know the possible long your child will be out. children are not able to participate date of the transplant (if it is going in a full day at school. If your to be a live donor transplant). Homebound Teaching: child is having any difficulties Homebound teaching is a situation participating in school activities An important thing to keep in mind in which a teacher from your child’s or is missing an excessive amount is that your child’s participation in public school district comes to your of school due to illness, it might school is not only for education, house and helps your child with be necessary to talk with the but also socialization. Seeing and classroom assignments. Your public school about a modified school schedule or to start homebound Some children are excited to get back to school, but many teaching. As a parent or guardian, parents are concerned about their health. Prior to your you should work to develop good child returning to the classroom, you should contact his communication with your child’s teacher, school nurse, principal and or her teacher(s) and school nurse. transplant team regarding these issues. The school will likely request keeping in touch with friends is an school district should be able to that any special accommodations be important aspect of a child’s mental offer a homebound teacher when made in writing and be signed by health. It may be worthwhile to requested by a physician. Be aware the child’s physician. Members of consider a reduced school schedule that visits made by the homebound the transplant team and members in which the child continues to teacher are very limited and may of the school staff may need to attend class for even just a few only be about an hour or two per communicate with each other about hours a day so that he or she can week. The homebound teacher will your child’s accommodations, so maintain their social contacts. obtain some of the school work you will likely be asked to sign a directly from your child’s teacher(s), release of information form so that Post-Transplant: and your child will be responsible this can occur. The school will Within several days of your child for completing as much of the require some medical history and having a transplant, you should work as possible during the rest of information on your child’s current contact the school to inform them the week. Private schools do not health issue in order to provide the that the transplant has occurred. typically have homebound teachers, appropriate support. The transplant If possible, let the school know but they may be able to make some Click here to continue on page 17

16 Transplant Chronicles VOL. 14 NO. 1 PREVIOUS PAGE NEXT PAGE CONTENTS transplantation & school arrangements to assist your child. You might want to contact school staff in advance to inquire whether these services will be available, and if not, what other options might be available.

Homebound teaching should be implemented soon after your child has been discharged from the hospital after transplant. Once your child’s medical condition is stable, and he or she is able to do so, they should start working on some of those school assignments. Start off with simple assignments that do not take excessive time and energy, and then advance the complexity of the work as tolerated. Some of the medications that are given after transplant (such as prednisone) can school. Let them know that if your most issues. Remember that, while cause difficulty with concentration child has been exposed to any they are responsible for any missed for your child. As the dose of communicable infections (such as assignments when away from these medications decrease, the chicken pox), you should be notified school for clinic visits, lab draws, concentration problems should at once. Your transplant nurse hospitalizations, or illnesses, your improve. Do not be surprised if your coordinator will give you guidelines child cannot be penalized for the child needs a nap after working on at the time of discharge regarding actual absence. If you feel that the their homework. This is normal. what types of infections to be school is unfairly penalizing your Also, long hospitalizations can concerned about. Your transplant child for medically-related absences, cause deconditioning. Just being team will also need to send a letter inform your transplant team. in the hospital and lying in bed to your child’s school giving your can wear children out, and it may child permission to return to the Your transplant team is here to take several weeks for them to start classroom. The letter should include assist you, your child, and your regaining their energy. the transplant type and date, a list family in many aspects of care, of current medications with doses, including the significant transition Returning to School: a note about any medical needs back to the classroom. Be sure to let Returning to the classroom is a that your child might require while them know how they can be of help great sign of progress and that life at school (example: having the to you. TC is slowly returning to “normal.” blood pressure or glucose readings Some children are excited to get done during school hours), and Cindy K. Brown, LMSW, ACSW, is a back to school, but many parents if there is any special equipment clinical social worker assigned to the are concerned about their health. needed during school (example: a University of Michigan Pediatric Liver Prior to your child returning to wheelchair). Transplantation Program. the classroom, you should contact his or her teacher(s) and school School attendance is taken very nurse. Update them on the current seriously these days, but good medical problems, and let them communication between your know if there are any medications family, the school, and the that need to be given while at transplant team can easily resolve

PREVIOUS PAGE NEXT PAGE CONTENTS Transplant Chronicles VOL. 14 NO. 1 17 West Nile Virus West Nile Virus West Nile Virus West Nile Virus

The following information was just released from the Health Resources & Services Administration, U.S. Department of Health & Human Services. West Nile Virus and vision loss, numbness, and paralysis. getting severe disease compared to Transplant Recipients Symptoms can last several weeks, people who are not immunosup- West Nile virus (WNV) causes a and neurological effects can be pressed. potentially serious illness that affects permanent. In the general population, the central nervous system. WNV usually there are no symptoms is now in most of the United States. with WNV, but it may cause less The most common way people severe illness with fever, headache, become infected is through the bite body aches, nausea, or vomiting. of an infected mosquito. People Sometimes this includes a skin rash who have received a transplant on the chest, stomach, and back. may be at significantly higher risk These symptoms typically last a few for developing serious outcomes of days, but may last several weeks. WNV disease, including meningitis, encephalitis, or possibly death. There is no specific treatment for WNV disease. Human vaccines for WNV are still in the early stages of development. AVOID MOSQUITO BITES! Transplant recipients are at n Look for repellents with EPA-regis- increased risk of severe West tered active ingredients: Nile virus disease repellents containing DEET (N, Medicines taken by transplant N-diethyl-mtoluamide), picaridin recipients can make it hard to fight (KBR 3023), or oil of lemon eu- infections. Transplant recipients calyptus (p-menthane 3,8-diol) may develop the severe forms of typically provide longer-lasting WNV disease, including encephalitis, protection than other products. meningitis, and even death, more The Disease Permethrin is registered for use often than persons with normal West Nile virus causes a seasonal on clothing, shoes, bed nets, and immune systems. epidemic in North America that flares camping gear, though not directly up in the summer and continues into on skin. It can provide protection Special Considerations for the fall. People infected with WNV through several washings. may develop serious and sometimes Transplant Recipients n Wear clothing that can help re- life-altering or even life-threatening • WNV disease should be considered duce mosquito bites illnesses that require hospitalization, in any transplant recipient with such as West Nile encephalitis and unexplained fever and/or neuro- Wear long sleeves, long pants, and West Nile meningitis (conditions logical symptoms during mosquito socks whenever possible outdoors. associated with inflammation of the season. This is true, even for recipi- Mosquitoes may bite through thin brain or the area around the brain) or ents who develop the symptoms clothing, so consider spraying West Nile polio-like paralysis. WNV long after their transplant. clothes with repellent (including permethrin) for extra protection. disease occurs between three and 14 • Contact your health care provider days after being bitten by an infected as soon as possible if you think you n Be aware of peak mosquito hours mosquito. have symptoms of West Nile virus The hours from dusk to dawn are infection. peak mosquito biting times. You can Symptoms of severe WNV • Immunosuppressed recipients may get bites even during a short time disease include high fever, headache, have longer incubation periods, outdoors. Take extra care to use neck stiffness, stupor, disorientation, delayed development of antibod- repellent and protective clothing. coma, tremors, muscle weakness, ies, and an increased likelihood of Click here to continue on page 19

18 Transplant Chronicles VOL. 14 NO. 1 PREVIOUS PAGE NEXT PAGE CONTENTS Continued from page 18

Remember! Keep repellent close at hand during summer months. The easiest and best way to avoid By Debra Washington, kidney recipient WNV disease is to prevent mosquito bites. • Use protective clothing and effec- tive repellents whenever you go I thought we’d go out on the town and dance the night away, outdoors. Or to a quiet restaurant for dinner and a play. A cruise to a small island to enjoy the golden sun, • Mosquito-proof your home. In- Enjoy the sites, the clubs at night, have lots and lots of fun. stall or repair screens on windows My girlfriend wants to take me out so and doors to keep mosquitoes we can celebrate. outside. We’d eat and drink and laugh and cry and • Empty water from buckets, cans, stay out very late. pool covers, flower pots, pet wa- If I had won the lottery there’d be a big “to-do,” ter dishes, birdbaths, and other For everyone who knows the things that we have both been items daily because mosquitos through. lay eggs in standing water. A band and ballroom dancing, I’d have Whitney Houston sing, Resources A tribute to your life and to the special joy For detailed information about prevention and you bring. repellent use, see www.cdc.gov/westnile or While making preparations to give thanks call the CDC public response hotline at 800. for one more year, CDC.INFO I thought of what you did for me and stopped to shed a tear. For additional information on repellent safety Someone whom I have never met who gave unselfishly, see the National Pesticide Information Center at A gift that no one else could give, a perfect match for me. http://npic.orst.edu or call 800.858.PEST I woke up on our special day and it was very clear, There’d be no night on the town, no fanfare For information about WNV transmission in and no cheer. your area consult your local or state health I’ll light a candle to you and your lovely family, department. Who hold you in their hearts always in loving memory. For information about organ donation and Your Mom told me you did enjoy the taste transplantation, go to of ice cold beer, http://organdonor.gov I raise my Michelob to you, and to another year.

For more information about West Nile Virus, Debra Washington lives in Maryland and received a kidney from a go to: http://www.health.state.ny.us/ deceased donor 10 years ago. diseases/west_nile_virus/

To download a brochure version of this article go to: http://www.kidney.org/atoz/ Join NKF in the fight to extend immunosuppressive drug coverage underM edicare for the life of the kidney! www.kidney.org > News and Events > Advocacy & Government Relations > “Help Extend Coverage for Immunosupressive Drugs”

PREVIOUS PAGE NEXT PAGE CONTENTS Transplant Chronicles VOL. 14 NO. 1 19 pharmacist value of a PHARMACIST By Susan May, Recipient Mom A pharmacist is an important part of any person’s medical care but is especially invaluable in a transplant patient’s life. Every transplant patient should have a pharmacist who knows their needs in handling their medicine.

This is one of many examples of how cardiologist, our pharmacist has been needed a pediatric dose of medicine our pharmacist has been wonderful: the most important medical profes- that had to be mixed using a mortar My son needed a form of medicine sional involved in my son’s life. and pestle. Our pharmacist mixed that had to stay cold. I knew that liquid cherry syrup with the crushed These are a few things you should condition would not fit into our tablets. On my next visit he asked consider when deciding if you have lifestyle. From experience with my how my son liked it. I told him he the right pharmacy to help with your other children, I knew I could forget made a face and it was hard to get transplant prescriptions: medicines that had to be kept in the him to take a dose. Our pharmacist

refrigerator. So I told my pharmacist n If you do not have a good phar- sent an employee to the grocery the problem, and he said he could macist, find one you can trust before store to buy wild cherry syrup for make this particular medicine so that your operation. Explain that you or a the mixture. My son had no problem it would be stable for two weeks. This loved one will have a transplant and taking the medicine the next time. way it would not need to be refriger- make sure they can get the medicines A good pharmacist can also detect ated or put on ice when we traveled. you will need. That made life easier and also en- when a patient may not be taking their medicines correctly. Teenage sured that my son got all the medi- n Your pharmacist needs to be will- cines he required on time. ing to talk to you, listen to you and compliance is a real problem. not be so busy they cannot discuss When my son got older, it was our My son was born with congenital your special needs. pharmacist who noticed that my son heart disease. He had a heart trans- was not taking one of his medicines. plant two weeks before his second n Make every effort to have a The pharmacy records indicated that birthday. I already knew the value of one-on-one relationship with your the medicine had not needed to be an experienced pharmacist because pharmacist. refilled as it should have been. my son had been on some type of Carry the pharmacist’s telephone medication his whole life. When he Our pharmacist has caught, on nu was one year old we moved to a new more than one occasion, prob- mber with you. Often it is easier to town. As soon as I knew the area we lems or possible issues with my contact them than it is the transplant would be living in, I found a pharma- son’s medicines. A doctor had coordinator if you just need a refill cy. I made sure we had a pharmacist prescribed an antibiotic that did while out of town. even before we had a house to live in. not interact well with my son’s It is best to give your pharmacy a call That is how necessary I knew it was. immunosuppression medicines. three or four days before your refill is Our pharmacist spotted a problem I picked a local pharmacy with the due so they will have it on hand and and prevented a possible deadly same person to help me each time. I you don’t have to wait while they fill situation. He called the doctor went in with paper copies of my son’s your medicines. requesting that a different prescriptions to make sure the phar- antibiotic be used. Every pharmacist is human and can macy could stock his medicines. make mistakes. Take the time to When my son was transplanted 15 Tell your pharmacist if you are check that your medicines are the years ago, his medical team would having a problem with your right color, size or number. not discharge him until they had medicines. They may have an idea talked to our pharmacist. After the that helps. When my son was first Most important: Find a great pharm- heart transplant surgeon and the transplanted, he was so small he acist. My son has one.

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