SUMMER/FALL 2007 VOLUME 14 NUMBER 1 TRANSPLANT CHRONICLES IS A TRANSACTION PROGRAM OF THE NATIONAL KIDNEY FOUNDATION. When I first went on dialysis in 1989, I chose CAPD (Continuous Ambulatory Peritoneal Dialysis) because I thought it would give me more freedom to travel. That may or may not have been true; with proper planning, people on hemodialysis can travel just about anywhere. But the point is I didn’t want kidney failure to mean the end of my traveling days. Now that I have a kidney transplant, it’s even easier to “pick up and go.” But having a transplant still requires a little extra planning. If you are a transplant recipient planning a trip, here are a few tips to help make sure your trip goes smoothly and safely: 1 TAKE A GREATER SUPPLY OF YOUR MEDICATIONS THAN YOU WILL NEED. Due to car prob- lems, missed flights, or just the desire to enjoy one extra day at the beach, trips sometimes last longer then you originally planned. By tak- ing more than you think you will need, you’ll ensure that you don’t run out of your medicines. I count ‘em out before I go. 2 —KEEP YOUR MEDICINES IN THEIR ORIGINAL BOTTLES. Although you may be tempted to transfer your medicines to smaller travel containers to save space, keep them in their original bottles. That way luggage inspectors will know what you are carrying and be less likely to hold you up at airport security. And having the original labeled bottles can make it easier to fill your prescriptions if you somehow run out. 3 —IF YOU ARE FLYING, KEEP YOUR MEDICINES WITH YOU. Don’t risk losing your medi- cines with your checked luggage. Carry your medicines with you on the plane in a carry-on case. Depending on your medicine-taking LIKE MANY OF YOU, I’M A TRAVELER. I want to see as much of this beautiful world as I can before my time is up. And thanks to the miracles of dialysis and transplantation I have lived longer and enjoyed more time traveling than would have been possible a mere 65 years ago. 1 1 have transplant will travel have transplant , will travel : traveling tips for recipients By Jack Fassnacht, Kidney Recipient schedule, you may have to take your meds during the flight. Unless you’re in a movie, it’s hard to get down to the cargo hold from the passenger compartment. in this issue… 2 editor’s desk 4 tips for nutrition and exercise 6 weight management 7 returning to work 9 People Like Us 10 transplant news digest recipient voices 12 recipient voices 13 teens & transplant 14 e-mail support group 15 facts about transplantation facts about transplantation 16 school days 18 West Nile Virus Click here to continue on page 3 20 value of a pharmacist value of a pharmacist NEXT PAGE 19 the anniversary (poem) 01-70-1401
Transcript
SUMMER/FALL 2007 VOLUME 14 NUMBER 1
TransplanT ChroniCles iS A tRANSActiON PROgRAM OF thE NAtiONAL KidNEy FOUNdAtiON.
When I first went on dialysis in
1989, I chose CAPD (Continuous Ambulatory Peritoneal Dialysis) because I thought it would give me more freedom to travel. That may or may not have been true; with proper planning, people on hemodialysis can travel just about anywhere. But the point is I didn’t want kidney failure to mean the end of my traveling days.
Now that I have a kidney transplant, it’s even easier to “pick up and go.” But having a transplant still requires a little extra planning. If you are a transplant recipient planning a trip, here are a few tips to help make sure your trip goes smoothly and safely:
1TAke A greATer suPPly of your meDICATIoNs ThAN
you WIll NeeD. Due to car prob-lems, missed flights, or just the desire to enjoy one extra day at the beach, trips sometimes last longer
then you originally planned. By tak-ing more than you think you will need, you’ll ensure that you don’t run out of your medicines. I count ‘em out before I go.
2—keeP your meDICINes IN TheIr orIgINAl BoTTles.
Although you may be tempted to transfer your medicines to smaller travel containers to save space, keep them in their original bottles. That way luggage inspectors will know what you are carrying and be less likely to hold you up at airport security. And having the original labeled bottles can make it easier to fill your prescriptions if you somehow run out.
3—If you Are flyINg, keeP your meDICINes WITh
you. Don’t risk losing your medi-cines with your checked luggage. Carry your medicines with you on the plane in a carry-on case. Depending on your medicine-taking
lIke mANy of you, I’m A TrAveler. I want to see as much of this beautiful world as I can before my time is up. And thanks to the miracles of dialysis and transplantation I have lived longer and enjoyed more time traveling than would have been possible a mere 65 years ago.1
1 have transplant will travel
have transplant, will travel: traveling tips for recipients
By Jack Fassnacht, Kidney Recipient
schedule, you may have to take your meds during the flight. unless you’re in a movie, it’s hard to get down to the cargo hold from the passenger compartment.
in this issue…
2 editor’s desk 4 tips for nutrition and exercise 6 weight management
7 returning to work
9 People Like Us
10 transplant news digestrecipient voices
12 recipient voices
13 teens & transplant
14 e-mail support group
15 facts about transplantationfacts abouttransplantation
Laurel Williams, RN, MSN, cctc editor-in-Chief University of Nebraska Medical Center Omaha, NE
Megan A. tichy, Rd San Francisco, CA
dean S. collier, Pharmd University of NebraskaOmaha, NE
Jack Fassnacht Chicago, IL
Joshua S. goldberg, teen editor Encino, CA
Shirley Schlessinger, Md University of Mississippi Medical CenterJackson, MS
Victoria L. Shieck, RN, BSN, cctNUniversity of Michigan Health System Ann Arbor, MI
debra J. tarara, RN, BSN, cctcMayo ClinicRochester, MN
Rebecca hays, MSW University of Wisconsin HospitalMadison, WI
chris L. Wells, Phd, Pt, ccS, Atc University of MarylandBaltimore, MD
Jim Warren, MS Transplant News Baltimore, MD
Editorial Office National Kidney Foundation, Inc.30 East 33rd Street, New York, NY 10016800.622.9010, 212.889.2210www.kidney.orgEditorial Director: Cathy paykin, MssWExecutive Editor: Gigi politoskiManaging Editor: sara KosowskyPublications Manager: James McCannDesign Director: oumaya abi saabConstituent Council Manager: erin Kahle
JusT The oTher DAy I heArD A True sTory ThAT TAlks ABouT
overComINg ADversITy IN lIfe—something many of us may relate too. It is about a seven-year-old boy in the 1900s who had an amazing talent for playing the piano. he had a dedication and commitment to learning to play far beyond his seven years. his family recognized his abilities and started him off with piano lessons twice a week with the woman next door. This little boy practiced every morning at 5:00 am. his piano teacher recognized this child’s talent as well and realized he would need a different type of instruc-tor to help him reach his potential. so she contacted mrs. e.C. White who was a concert pianist and an instruc-tor to further this child’s education. he continued to take lessons and practice daily and excel in his endeavors. one day mrs. White told him that one of his idols, a Polish pianist named Paderewski, would be playing in a nearby town and invited the boy to attend the concert. of course, he was thrilled to be invited to the concert and afterwards was taken backstage to meet the master himself. Paderewski asked the then-teenager if he would mind playing for him. The teen did. While he was playing, Paderewski
turned to mrs. White and just smiled. That was all she needed to know that this young man would be going far with his talent and commitment.
Not too long after that meeting, the boy’s father lost his job. The boy had to stop his piano playing to go out and work to help support the fam-ily. Though he played on occasion, his dream to become a concert pia-nist had been replaced by what was happening in his world—the need to help his family, to focus in dif-ferent directions and eventually go to war in support of his country.
That boy’s name was harry s. Truman, the 33rd president of the united states. Though he could have gone on to be a concert pianist, the challenges of his life took him in another direc-tion—a direction that gave him a far greater impact than he probably ever imagined. I think this shows us that we may not know why certain things happen in our lives, but we should embrace change, move forward in a positive direction and discover what potential we have within us. TC
off sCheDule. your doctor may have told you that you have a two to three hour leeway in taking your daily medicines. (Check with your doc to be sure of this.) If so, then if you are traveling to a destina-tion in a time zone within two to three hours of your home, you can ignore the time change and take your meds at the same clock time as you would have at home. In other words, if you take your meds at 7:00 am and 7:00 pm like me, you can stay on a 7:00 am/7:00 pm local time schedule if you travel up to three time zones away.
If you travel farther than that, you may have to adjust your medicine taking schedule to a different local time. To take an extreme example, I’ve traveled 12 times zones away from my home and have simply reversed my medicine schedule so that I take my 7:00 am meds at the 7:00 pm local time, and vice versa. When I get home I’m back on my usual schedule and haven’t missed taking any medications. (It can help to carry an extra watch set to your home time.)
5—CArry A lIsT of your meDICATIoNs WITh you.
Carry a list of your medications—and dosages—with you in your wal-let or purse. Include your doctor’s name and phone number on the list, along with your transplant center’s phone number, and the name and phone number of a close relative or two. Then, if you lose your bottles, you can have new prescriptions filled. Consider purchasing a medical ID bracelet for serious emergencies.
6—BeWAre of Too muCh suN exPo-
sure. We all know, or should know, that our medications can make us sensitive to sun exposure and, for many of us, more susceptible to skin cancer. since vacations often take us to sunny locations, pack and use proper sun protection in the form of hats, sunscreen, long-sleeved t-shirts, etc. use common sense by limiting your outdoor activities during the hours of great-est sun exposure, usually 10:00 am to 4:00 pm. Take an indoor siesta during those hours.
7 —eAT WIsely. Try the local specialties, but eat
wisely. minimize your chances of getting diarrhea by avoiding uncooked foods, except for peeled fruits and vegetables. Take an anti-diarrhea medicine along with you just in case. (Ask your doctor which one is right for you.) If you have dietary restrictions and are travel-ing on a flight where meals will be served, your airline carrier can accommodate you if you tell them in advance.
8—Be CAuTIous ABouT DrINkINg The WATer.
People who are immunosuppressed catch diseases easier than others. Tap water in many countries is not as bacteria-free as it is in the u.s., because it is often not intended for drinking. Ask the locals if the tap water is safe to drink. obey signs warning you that the water is not for drinking. When in doubt, drink bottled water. I sometimes even
rinse my teeth with bottled water after brushing.
9—CheCk WITh your DoC- Tor ABouT vACCINA-
TIoNs. vaccinations, such as for malaria, may be recommended for some destinations. If you are plan-ning to go to a place where shots are recommended, check with your doctor well before your trip about whether the shots are a good idea for you. And tell the clinic where you get your shot(s) that you are a transplant recipient. Consider tak-ing mosquito repellent with you.
1 — hAve fuN! Transplant recipients can do almost
anything other people can do. The u.s. Transplant games are proof of that. so get out there and have fun! hike. ski. golf. swim. scuba dive. run with bulls in Pamplona. Well, maybe that last one isn’t such a good idea, but you get the point. my motto: Do as much as your body lets you. And send Nkf a postcard while you’re there! TC
1 The first dialyzer (artificial kidney) was constructed
in 1943 by Dr. Willem kolff.
NEXt PAgEPREViOUS PAgE Transplant Chronicles VOL. 14 NO. 1 3
traveling tipsContinued from page 1
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last issue we asked: “What are your experiences with
medications’ side effects and in what ways did you cope?”
There are several reasons why resolutions frequently fail to be incorporated permanently into daily life. many times the resolutions are just too big and sudden to make all at once. frequently, the resolution is not fully examined to determine what it will take to stay true to your conviction. There is a lack of planning. finally, many times your resolution will affect your family and inadvertently their behaviors will sabotage your efforts.
The first step to making any lifelong change is to look at your present behavior. you need to completely understand how frequently you engage in the behavior you want to change. If your resolution is to improve your weight, you need to look at your diet and activity level. you need to know exactly what you are eating, when you are eating and how much time you spend eating, and if your eating is associated with any behaviors like feeling bored, anxious or upset when you eat. If your goal is to be more active, you need to know what time you spend engaged in activities above and beyond your daily routine.
one strategy for understanding yourself is to spend one week keeping a log about the behavior you want to change. This will allow you to better understand your behavior and look for any trends. Be true to yourself during this week; do not alter your behavior and be honest in your recording. record all that you eat, when you eat, estimate quantities of food and any emotion you are feeling while eating. you should also record the types of
activities and how long you engage in them throughout the day.
The next step is to examine your logs and look for trends. some examples of things to identify are: eating any one food too frequently, eating under stress, and eating late at night. for example, are you drinking more than one or two six ounce sugar drinks like soda? Are you eating a lot of candy, not enough fruits or vegetables, too much bread or potato chips? Are you eating sufficient amounts of protein, like chicken, turkey and fish? how much red meat are your consuming in a week? Are you
participating in any activity that is above and beyond your work day? how much time watching Tv or working on the computer are you doing during the day? how often are you using an elevator? how close do you park to the front entrance of stores?
Now you should select one thing you want to change about your eating and activity level. This change may be as small as drinking one less soda or eating one less serving of bread. An activity change may be parking further away from the entrance to a store, using the stairs, or doing some simple exercises during Tv commercials or substituting a family walk for 30 minutes of Tv. Try to comply with these small changes until you no longer struggle to be compliant with the new behavior.
It may take several weeks to make a permanent change towards a new and improved healthier lifestyle. Be patient with yourself. once you are ready, select another behavior to tackle. every six months, repeat your diet and activity logs and reexamine your behaviors in order to select the best changes to make. On the next page are some simple diet tips and strategies for improving your eating and activity habits.
tips for nutrition and exerciseBy 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.
An activity change may be parking further away from the entrance to a store, using the stairs, or doing some simple exercises during Tv commercials or substituting 30 minutes of Tv for a family walk.
NEXt PAgEPREViOUS PAgE cONtENtS
Transplant Chronicles VOL. 14 NO. 1 5
nutrition & exercise
1. AlWAys eAT A BreAkfAsT that includes protein (milk, cheese, chicken, or eggs) in order to establish a stable blood sugar for the day and satisfy your appetite.
2. oNCe you hAve PlACeD The fooD oN your PlATe, eat ¾ of the food on your plate then wait 20 minutes to make sure you are still hungry before you finish the remaining food.
3. use A smAller PlATe AND BoWl.
4. Do NoT eAT IN froNT of The Tv or WhIle reADINg The PAPer. Attend to what you are eating.
5. PlAN The oNe or TWo sNACks you WIll eAT DurINg The DAy.
6. Try To seleCT fooD ThAT Is NoT ProCesseD. eat steamed vegetables instead of canned vegetables. Prepare a small steak instead of eating steak-ums® or a commercially prepared hamburger.
7. PlAN your meAls for The DAy.
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.
9. lImIT The AmouNT of TImes you eAT ouT.
10 reAD The fooD lABels to begin to become familiar with the ingredients.
11. seleCT fooD ThAT Does NoT hAve hIgh fruCTose corn syrup in it or at least make sure it is not one of the first five ingredients.
12. seleCT fooD ThAT Is loW IN sATurATeD fATs, which are typically less processed food.
13. lImIT The AmouNT of sImPle sugArs (candy, soda) you consume daily.
14. suBsTITuTe A PrePAreD DrINk for WATer or at least a natural 100 percent juice drink.
15. Do NoT eAT AfTer 7:00 Pm or at least two to three hours before going to bed.
16. eAT sloWly To AvoID overeATINg; take 20–30 minutes to eat a meal.
1. eNgAge IN some form of PhysICAl ACTIvITy or exercise at the same time of day each day. It is best to select a time of day that you can consistently dedicate yourself and be active for at least 30 minutes, five days a week.
2. TrADe A hAlf hour of ComPuTer use or watching Tv for an activity. go for a walk, toss a ball around with your kids or dog, do some gardening, dance to some music. get your family involved.
3. fIND AN exerCIse PArTNer. It is harder to make excuses about not keeping an exercise session if someone else is counting on you.
4. PArk furTher AWAy from your Work or stores.
5. TAke The sTAIrs INsTeAD of The elevATor.
6. PlAN some of your Work meeTINgs As WAlkINg meeTINgs. Take along a recorder to keep notes if necessary.
7. DurINg CommerCIAls ComPleTe some sImPle sTreNgTheNINg exerCIses instead of going to the kitchen.
8. PlAN AN ACTIvITy WITh frIeNDs AND fAmIly on your day off.
9. seleCT ACTIvITIes ThAT you eNJoy. you do not have to suffer on a bike or treadmill. go outside and do some gardening, try golf (walk the course, pull or carry your clubs), or play table tennis.
10. esTABlIsh A goAl suCh As TrAININg for a community walk/run event for charity.
11. vAry your ACTIvITIes to avoid boredom and overuse injuries.
It is important to talk to your doctor before beginning any exercise program to ensure that you are healthy enough to safely engage in exercise. Also, talk to your physician about any changes you want to make to your diet to make sure there are no adverse effects from medications you may be taking and to ensure the proper function of your organs such as your kidneys and heart.
Check your progress once every two to four weeks. Do not obsess over the scale every day unless you have been instructed to weigh yourself daily for a medical reason. The progress you make will depend on several factors, including your age, gender, amount of your body weight
that is muscle, amount and degree of changes you make, and your dedication to keeping your goal. keep in mind that any positive change you make in your diet or activity level is making you a healthier person. give yourself six to 12 months to really see changes and progress. Be patient and kind to yourself; changing behaviors is hard. TCResources: American heart Association: www.americanheart.org go to the
link “healthy life styles.” AhA’s number is 800.242.8721; ask for information on healthy living.
National kidney foundation: www.kidney.org under the link “Patient” you can go to “Nutrition, Diet” and “fitness/ rehabilitation” for more information. Nkf’s number is 800.622.9010.
NUTRITION TIps
AcTIvITy TIps
Below are some simple tips and strategies for improving your eating and activity habits.
This might be the only challenge for some individuals in keeping their weight at a healthy level. for others, it might be following myths or misconceptions of what healthy eating should be or simply not exercising enough.
Balance is one of the many key components in weight management. This is important to think about when approaching your meals as well as your daily life. eating well is not the only component of this balance;
exercise and attitude can be very helpful too. Balance with snacks and meals can consist of planning ahead to ensure that you have carbohydrates, protein, and fat at each meal. Carbohydrates should consist of 50–60 percent of your meals while protein should consist of 20–25 percent of your meals and fat should consist of 20–25 percent of your meals. This is just one part of the meal; the second part should be choosing which carbohydrates, proteins and fats. some suggestions are listed below:
weight management By Megan Tichy, RD
carbohydrates:
Aim for five to nine fruits and vegetables per day. In order to meet this goal, try including a fruit and vegetable at every meal and snack.
Aim for fiber rich starches. grains with three grams of fiber or more are wonderful choices.
Include non-fat or low-fat milk products at least once per day in a meal or snack. low fat or non-fat milk not only provide calcium, but also carbohydrates and protein. (And needed fat, if the milk product is low fat).
protein:
Include lean sources of protein in meals and snacks such as:
Chicken Turkey Fish Egg whites Dried beans Low-fat or fat-free milk/ milk products
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.
NEXt PAgEPREViOUS PAgE cONtENtS
Transplant Chronicles VOL. 14 NO. 1 �
Returning to WORK after Transplantation By Rebecca Hays, MSW, LCSW
many people, although relieved at how much better they feel, are also disappointed that they don’t feel as well as they did “pre-illness.” And, of course, this limbo-land of “feeling better but not 100 percent” makes returning to work a complicated process.
first off, if you had to stop working because of your illness, I want to acknowledge that as a huge loss. There’s a myth out there, and this may even exist in your family, that going on disability feels like a vacation. But most people tell me that stopping work was one of the most profound losses from getting sick: they miss the financial stability for themselves and their families, the sense of accomplishment at work, and the companionship of co-workers.
you may have started to think about what it would be like to return to work. I want to build on that here. There is tons of evidence that working after transplantation helps people become more independent, brings in more income (obvious, eh?), and generally improves quality of life. It may even help you live longer. This does not mean that returning to work will be simple or quick. It’s often scary at first—and being worried about a “failed” return to work, or even a “successful” return, is normal. I
want to emphasize that returning to work takes planning, teamwork, and resourcefulness. In this article, you’ll read about several people’s experiences; details of their situation, including names, have been changed to protect their privacy.
Get your feet wet first:“Juan,” who got his transplant three years ago, found out that his long-term disability status at his job would end in a few months. he talked with his old boss about returning to work part-time at first (his union helped with this) got the (tentative) ok to go back to his heavy-lifting, cold-weather job from his transplant coordinator and transplant nephrologist, and gave it a try. A year later, he came back to the transplant clinic to say how glad he was to be back at work.
others have created part-time “jobs” within their family or network of friends. “rita,” who got a kidney transplant last year, now babysits for her granddaughter two days a week. she is helping her family and gets exercise to boot. Certainly, including your family in the plan for increasing your activity is key—you’ll benefit from their support and teamwork. In rita’s case, she hopes to eventually earn more money with a job at a local preschool, and plans to run this
idea by her transplant doctor. In addition to part-time work, there are other ways to gradually find out whether work will—pardon the expression—work. setting a daily schedule helps. Another way to “start small” is to volunteer for an agency that interests you—this can be fun and is a handy reference for future job applications.
Connecting with your local state or county department of vocational or occupational rehabilitation can help you think through options, and get additional training. Ask your transplant social worker for a referral. life options is a terrific resource for folks with kidney disease in thinking out a return-to-work plan; materials, including a humongous “employment guide,” are at www.lifeoptions.org or call 800.468.7777. The National kidney foundation has a rehabilitation brochure series through www.kidney.org or 800.622.9010. Although these materials are designed within the kidney community, they can be relevant for anyone living with transplant! for additional support, you can join a transplant listserv by e-mailing [email protected] with the message: “subscribe transplant.” [Also see article on page 14 about e-mail support groups.]
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.
Think through how your health status and transplant may affect what you can do at work: you know better than anybody how you feel. If you have concerns about how a particular symptom will affect your ability to work, plan to bring this up at your next check-up. Ask specific questions once you have a plan, or even a dream, in mind. for example, “Bill,” who got a kidney transplant six years ago, was offered a job in his friend’s tree-trimming business. he talked with his transplant doctor about whether the amount of heavy lifting was ok, and whether the exposure to tree dust (Well, this isn’t the technical word, I’m sure, but go with me here!) would be dangerous given his suppressed immune system. With minor accommodations—like wearing a mask under certain circumstances—the doctor gave him the go-ahead.
How do I explain my transplant to employers?many people have asked on the listserv, “how do I explain my illness to a future employer?” and “how do I explain that I’ve been out of work for years?” first off, you don’t “have” to explain anything to anybody—it is, of course, against the law to discriminate against employees based on health status and, in problem situations, you can contact the equal employment opportunity Commission or a local health advocacy organization (one in Wisconsin is called ABC for health). That said, if you’ve been out of the workforce for awhile, it helps to rehearse what you’re looking for in a job now, what your skills are, and an (honest) explanation of what you’ve been doing lately. This is where volunteer work, new training/
education, or new interests come in handy. A local job bank, or a local community college can help you practice what to say in interviews, on applications, or in your resume.
In some cases, it makes sense to be upfront. for example, “larry” lives in
a rural area where everybody knows him and about his transplant. he decided to say something like, “look, if I can keep track of 44 medicines a day, I can keep track of inventory—I am way more organized than anybody else around here. yeah, there may be an occasional day when I’ve got to call in sick. But overall I’m stable, and when I’m here, I’ll be here 110 percent.” It worked.
Returning to WORK after Transplantationcontinued from page 7
>> How work may affect your insurance benefits:There used to be a major “trap” where, once you became disabled, it was risky to go back to work, because you’d lose your health insurance benefits. In an old study, a third of heart transplant patients said this fear is what kept them from returning to work. There are now much better safeguards in place:
1. If you Are elIgIBle for ssDI and work, you can keep your medicare for at least eight and a half years, long after the cash benefits stop. Part A will continue for free; you have to continue to pay the premiums for Parts B and D.
2. If you goT A kIDNey TrANsPlANT, you will continue to qualify for medicare for three years after your transplant regardless of your work status or disability status.
3. If you Are elIgIBle for meDICAID AND Work, at least 28 states will allow you to “buy-in,” or purchase, medicaid for much less than the “spend-down” you might typically have to pay—it works like an insurance premium.
4. ThANks To The heAlTh INsurANCe PorTABIlITy AND ACCouNT-
ABIlITy ACT of 1996, large employer group health plans (insurance offered through a job) can no longer turn you down, or charge you more, for having an expensive medical condition. There may be a preexisting condition clause for up to a year, in which you pay the premiums but do not get coverage for existing health problems (such as transplant).
5. If you hAve heAlTh INsurANCe Through A JoB BuT Are IN A
PreexIsTINg CoNDITIoN WAITINg PerIoD, you can apply to the companies that make your medicine for assistance. you may also be able to get high-risk health insurance, offered through most states, at a reduced premium during this time—though even the reduced rate can be expensive.
for more information, check out www.ssa.gov/work/index.html and look at topics such as “What happens to my medicare benefits if I work?” and “What happens to my medicaid benefits if I work?”
work & transplantation
Click here to continue on page 9
visit www.transplantrecipients.org ⇒ resources to read this and other articles.
>> How transplant and work may affect your disability benefits: A little background on how ongoing disability eligibility works: Anybody who earns supplemental security Income (ssI) or social security Disability Income (ssDI) through social security must complete a routine “disability review process” every couple years. These are forms that ask for health updates and are sent directly to you. social security collects information from you and from your medical team about how your health currently affects your ability to work. keep in mind that both ssI and ssDI eligibility are based on being unable to work ANy job, not just the job you used to have.
Certainly, having had a transplant will affect this disability review process—if you qualified for disability solely on the basis of organ failure, you may no longer be considered disabled once you’ve recovered from the transplant surgery. of course, you may also have a collection of health conditions or symptoms that will be officially “disabling” for the long term. either way, if you are earning ssI or ssDI, there are some helpful work incentive programs that can be a help if you give a return to work a try.
As always in coping with chronic illness, it helps to plan ahead and learn what resources may be available. you can sign up for a “ticket to work,” which then allows a “trial work period” for up to nine months, during which time your ssDI check is unaffected (though your ssI check may
drop). you can use this trial period to enroll in job training/school and, for ssI recipients, write a “plan for achieving self support,” which can include assistance buying equipment for your own business. In addition, if you got ssDI, and your monthly work income drops below $830 per month any time in the next three years, you can get your disability check again that month. If a decline in your health means you have to stop work within six months, social security calls it an “unsuccessful work effort” and benefit eligibility is unaffected. for more information, check out www.ssa.gov/work/index.html
for example, “sam” didn’t think he would ever feel up to going back to work as a car mechanic— since his transplant, he feels tired sometimes and also suffers from neuropathy. he also knew he wanted a job with health insurance. he connected with the Department of vocational rehabilitation in Wisconsin, enrolled in a Ticket to Work program, and is now in training to be an x-ray technician. he figures his own extensive experience with the health care system gives him some “inside scoop” on medical vocabulary and how the system works. his benefits have continued throughout his schooling, and he will finish the program may 2007.
If you are earning a disability-related pension from a previous job, check the job policy or the job’s human resources office about how returning to work might affect these benefits.
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. 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 sample letter that you can personalize and, with a click of your mouse, e-mail directly to your members of Congress.
Join here: http://capwiz.com/kidneyyou also can help build our e-advocacy network by asking your colleagues, patients and friends to join as well. Thank you for your support!
Please contact Jayne mardock with any questions: [email protected] ; 800.889.9559.
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 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
Deceased donors top 8,000 for first time; Record 31,184 trans-planted in U.S. in 2006
The number of organs donated and ultimately transplanted in the u.s. has grown steadily in the past four years, and 2006 proved to be another banner year, according to preliminary data announced by the federal government.
for the first time ever, the number of deceased donors exceeded 8,000 in 2006 and, when coupled with the 6,723 organs donated by living donors, resulted in 31,184 organs transplanted, according to the health resources and services Ad-ministration (hrsA) of the Depart-ment of health and human services (hhs).
of the organs transplanted, 78.4 percent came from deceased donors and the remaining 21.6 percent from live donors.
The number of Americans receiving kidney and liver transplants also set a record. A total of 17,084 kidney transplants were performed in 2006, which represented a 15.6 percent increase since 2002. In addition, a record number 6,650 liver trans-plants were performed, compared to 5,331 in 2002.
The number of minority donors also increased slightly in 2006. African-Americans comprised 15.5 percent of deceased donors and hispanics 13.7 percent; hrsA pointed out both rates are slightly higher than their proportion of the overall u.s. population.
The growth over the previous five years has been attributed mainly to the success of the organ Donation Breakthrough Collaborative which, due to its success, is now called the organ Donation and Transplanta-tion Breakthrough Collaborative (oDTBC), managed by hrsA and the Alliance for organ Donation and Transplantation.
The oDTBC held its learning ses-sion 2 on April 17–18 in Atlanta, gA, to launch the second phase of the collaborative. They introduced a goal of eliminating all deaths on the waiting list by the year 2013 by spreading known best practices to the nation’s largest hospitals and to all transplant programs.
The results of the first initiative underscore the optimism expressed that the goals are achievable. Con-sider:n over 300 hospitals in the u.s.
have already achieved organ donation rates of 75 percent or greater for at least 12 months. many other large hospitals, clus-tered in certain donation service areas (DsAs) also have average donation rates that are well above the national average.
n Thirteen entire DsAs have been able to achieve an average 75 percent conversion rate for a 12-month period since the onset of the collaboratives.
n Two DsAs have exceeded a rate (oTPD) of 3.75 or higher of organs transplanted per donor for at least eight months.
Participants at the learning session were told that if 3,000 new kidneys were transplanted annually, this
would eliminate the growth of the waiting list, and adding 4,000 annually would result in shrinking the list. To achieve that, each of the nation’s 58 DsAs would have to increase the number of kidneys procured by 10 per month for 12 months.
Federal ruling opens way for more paired donations In a step that proponents say could save thousands of lives, the u.s. Jus-tice Department has cleared the way for hospitals to begin performing organ transplants in which multiple donors give kidneys to unrelated recipients.
“It’s going to make dramatic dif-ference in removing barriers we’ve all faced trying to perform paired transplants,” said Dr. richard B. freeman, Chairman of the legisla-tive Committee of the American society of Transplant surgeons and a surgeon at Tufts-New england medical Center in Boston. “It’s go-ing to really create a large number of kidney transplants, nationwide,” said robert montgomery, an Associ-ate Professor of surgery and Director of Johns hopkins hospital’s Com-prehensive Transplant Center.
The Justice Department issued a memo saying that nothing in federal law prevents someone from donating an organ in exchange for having a relative or loved one receive an organ from someone else. last year, 4,056 kidney patients died while awaiting transplants, ac-cording to the united Network for organ sharing.
Poll shows public support of or-gan/tissue donation increasingThe percentage of Americans who have officially designated them-selves as organ donors has nearly doubled since the early 1990s and even more say they would donate their organs or those of a family member under many circumstanc-es, a new public opinion survey reveals.
The gallup organization survey found that 53 percent of Americans have indicated their wish to donate on their driver’s license or signed an organ donor card, almost double the 28 percent who had done so in 1993 when the last poll was taken. In addition, almost three-fourths (73 percent) said they would likely give permission to donate their organs regardless of whether they had taken action.
Nearly all the survey respondents—97 percent—said they would donate a family member’s organs if they knew the person’s wishes ahead of time, about the same response as in 1993; however, in 2005, 71 percent indicated they would donate a fam-ily member’s organs when they did not know their wishes—a signifi-cant increase over 1993 when only 47 percent said they would.
“The fact that 97 percent of respon-dents said they would donate a fam-ily member’s organs if they knew their wishes ahead of time is huge,” James Burdick, executive Director of the Division of Transplantation (DoT), told Transplant News Digest. “The finding that 71 percent would donate even if they didn’t know the family’s wishes…is a 20 percent increase over 1993 findings.”
The news was not all good. The poll also found that disturbing and significant pockets of mistrust and misunderstanding still exist among minorities, particularly African Americans. for example, 61 percent of Caucasians were most likely to indicate their permission to donate on their driver’s license, almost double the number of
African-Americans (31 percent) will-ing to do so. other minorities were slightly more willing with latinos (39 percent) and Asians (39 percent) saying they would give permission on their licenses.
The survey also found that beliefs do affect the willingness to donate. for example, the more than 50 percent who answered “yes” when asked if they believe organ donation can often transmit diseases such as hIv, hepatitis, West Nile virus were significantly less likely to donate.
And the concept of brain death still remains a mystery to many, with more than 22 percent agreeing with the statement—“It is possible for a brain-dead person to recover from his or her injuries.” This group was also significantly less willing to donate.
Burdick admitted that brain death per se is not totally understood, but credited the public with be-ing “a little smarter than we give them credit [for]” and professed to be optimistic that progress is being made. for instance: “We’re working with the entertainment industry as closely as we can to keep their facts straight as possible,” he said. “The public often has the ability to see the more ridiculous” plot lines in Tv shows and movies.
Not surprisingly, the current state of access to health care in the u.s. is reflected in the response to the question—“given equal need, a poor person has as good a chance as a rich person of getting an organ transplant.” A total of 52 percent disagreed or strongly disagreed with this statement, while 49.3 percent agreed or strongly agreed.
Intestine transplants added to organs covered by HRSAIntestinal transplants have been added to the list of human organs covered by the organ Procure-ment and Transplantation Network (oPTN) and the list of human or-gans defined in the National organ Transplant Act (NoTA).
The announcement was made by elizabeth Duke, administrator of the health resources and ser-vices Administration (hrsA) in the march 9, 2007 Federal Register. The final rule went into effect on that date.
The new rule means that transplant programs that perform intestinal transplants must adhere to intes-tinal allocation policies developed by the oPTN and are subject to enforcement sanctions by the hhs if they fail to comply.
Intestinal transplantation—which may include the esophagus, stom-ach, small or large intestine, or any portion of the gastrointestinal tract—is considered for patients with irreversible intestinal failure due to surgery, trauma, or acquired or congenital disease that cannot be managed through the intravenous delivery of nutrients, also referred to as total parenteral nutrition.
The first successful intestinal trans-plant was performed in 1989. The oPTN adopted voluntary intesti-nal organ allocation policies and began maintaining a list of patients waiting for intestinal transplants in 1993. on December 31, 1993, there were only 43 candidates on the waiting list for an intestinal trans-plant, compared to 169 patients on the list in 2003.
The number of intestinal trans-plants performed has more than tripled in the past decade; how-ever, the volume of transplants per transplant center is relatively small, hrsA noted in the Federal Register announcement. Ten transplant centers performed one or more intestinal transplants in 2002 and only five performed more than 10 transplants. The overall median waiting time was 319 days for pa-tients added to the list in 2001.
In 2005, there were 178 intestinal transplants in the u.s., the high-est number ever. There were 175 performed in 2006.TC
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The American heart Association recommends exercising for 30 minutes, seven days per week for average, non-transplant people. This amount of exercise can not only increase health benefits and decrease risks of health complications, but it can also help elevate mood, motivation towards weight loss and burn calories. If you are inactive at present, remember doing anything is better than nothing!
utilizing resources available to you can help keep weight management on track. Try going to http://mypyramid.gov and creating your own personal food guide pyramid.
There are also excellent text books out there that can be found at www.eatright.org I have also suggested some books below:
365 Days of Healthy Eating from the American Dietetic Association by roberta larson Duyff, ms, rD, fADA, CfCs. Wiley, 2004.
Healthy Eating Every Day by ruth Ann Carpenter, ms, rD, and Carrie e. finley, ms. human kinetics, 2005.
seeking out clinical support from your doctor or a local dietitian can be vital to your success. go to www.eatright.org and click on “find a Nutrition Professional” in the upper right hand corner.
Best wishes in finding a nutrition balance that meets your health and weight management needs! TC
weight managementContinued from page 6
recipient voices
let your VOICE be HEARD
For more information go to:
www.kidney.org ⇒ patients ⇒ A to Z Health Guide ⇒ Transplantation ⇒ Nutrition and Transplantation
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Last issue we asked:
“What are your experiences with medications’ side effects and in what ways did you cope?”
And you said:
“I was fortunate to have so few problems. I did acquire the tacrolimus shakes. for a receptionist, that can cause typing mistakes. A good sense of humor and time took me through that period. steroids, however, caused a brief period of the most horrible anxiety I have ever experienced. If ever a kidney could talk, mine did, telling me it wanted out. fortunately I was staying with my brother and a friend while recuperating from surgery and my friend called the transplant team and explained the seriousness of the side effects. I was given something to calm me down, help me sleep and my prednisone dose was quickly lowered.”—Linda Essner
“I am a new kidney transplant recipient (march 5, 2007). my tacrolimus level is not stable and that, along with several of the other medications, is causing weakness and insomnia. To cope, I keep a
journal and log of what is happening every day: symptoms, improvements, setbacks and feelings. I also record my daily weight, blood pressure, temperature, drug dosages, times I take medicines and side effects. I also communicate frequently with my local nephrologist and my transplant coordinator, because they help keep me grounded and make adjustments. I keep a list of the questions I ask and the answers I received, and try not to hesitate to ask more, even though they may seem simplistic. I communicate everything to my husband so that I have a second ear and brain to help me make sense of everything that is new to me. most importantly, I pray for strength, peace and health, and for my sister’s gift of life (my kidney). And hundreds of other people are praying for me too, so I have wonderful spiritual support.”—Janis Viren
After reading our articles on healthy weight, we’re asking:
According to the North American Pediatric Trials and Collaborative studies’ annual report, there were nearly 600 children under the age of 18 who received a kidney transplant in the united states in 2005. Thirty-eight percent of those were between the ages of 13 and 17. The key to caring for adolescents who undergo transplantation is understanding their stage of development. It is normal for adolescents to experim-ent with risky behaviors, including not being compliant with their medical needs. Teens strive to gain a separate identity from their parents, or other authority figures, and have difficulty understanding
and accepting things that are not concrete and detailed. Teens who have difficulty following their medical care plan after transplant are at higher risk for rejection or loss of their transplanted organ.
Not only do teenagers with transplants have all the struggles that their peers do, they have additional
worries and responsibilities. The most common areas of concern are with taking medications (including dealing with side effects), getting blood drawn for lab tests, and clinic visits with their physicians, which takes time away from school. Problems can arise simply due to forgetfulness, feeling sad or powerless, or from lack of trust in the medical staff. simply put, if it doesn’t taste good, hurts, is scary, or is a hassle, it will be difficult to convince a teenager they have to do it.
Parents of all adolescents struggle with the transition from childhood to adulthood, however, parents of chronically ill children are often more resistant to this transition.
It is vitally important that teens be involved in medical decisions and caring for themselves so they have some degree of control over their situation. Proper supervision until the child is ready to act independently is critical. The age that independence occurs is different for every child; however, they need to know from the very beginning what the consequences will be if they do not cooperate with the medical care plan. here are
some ways to help teenagers move toward independence:
l EdUcATE TEENs ABOUT THEIR ILLNEss and give them some control by including them in decisions regarding their transplant care.
l sOmE THINGs ARE NOT NEGOTIABLE, as in taking medications, obtaining blood tests and seeing the doctor.
l IF cOmpLIcATIONs OccUR FROm NOT TAKING mEdIcA-TIONs, encourage discussion of why this happened and how to prevent it from happening again. Do not place blame.
l BE HONEsT ANd HOpEFUL about their health and future.
l sEEK pROFEssIONAL HELp for behaviors that affect physical or psychological health. Teens with transplants need emotional and physical balance to cope with their health. Parents with added insight and awareness will be able to help teens emerge from adolescence as self-directed, happy and healthy adults. TC
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.
Not only do teenagers with transplants have
all the struggles that their peers do, they have
additional worries and responsibilities.
teens & transplant
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14 Transplant Chronicles VOL. 14 NO. 1
hOw AnD why I started an interactive e-m@il support group
By John Mitas, Liver Recipient
I understand that hearing about post-transplant problems may frighten some pre-transplant people, but I think others like to know what they might encounter. my solution to this problem was to start an online support group for those who wanted more information and to talk about post-transplantation. It started with the people I knew post-transplant from my transplant center. I asked the social worker for permission to start an “in-person” post-transplant support group and the hospital gave me an ok! shortly after I started the support group, several people who were waiting wanted to know what the “post” thing was all about, and wanted more information about after-transplant problems and side effects. so this group expanded to include pre-transplant individuals.
It was like two different worlds before and after transplant. I met a kidney and pancreas transplant recipient, Jennifer sutt (kP recipient, December 23, 2002). Jennifer and I think and feel the same way. We both want to help and support others. she was a facilitator for the kidney and kidney/pancreas support groups at our transplant center. We started working with each other as volunteers and support group facilitators to give back and to help others at our transplant center. our
online support group has grown to include people all over the world. We help each other.
our online support group is called the kidney, Pancreas & liver Transplant support group, Alliance for Donation Transplantation Awareness and support (ADTAs). It is located at: http://groups-beta.google.com/group/Kidney-Liver-pancreas-support-Group
even though our name says kidney, liver and pancreas, all transplant individuals, including caregiver families and friends are very welcome. We now have our own transplant support group that meets twice a month. We really want to try to help and support as many individuals as we can. We are talking to our support group members about advocating for themselves; we try to help and explain about multiply listing. We are here for support and they, in turn, support us. We really want to offer a venue that will let individuals talk about issues or things they don’t understand without worrying about possible repercussions from their transplant centers
or doctors. since we have all been through a real trauma in our lives, we can help each other.
John Mitas and Jennifer Sutt are the Co-Founders of ADTAS—Alliance for Donation, Transplantation, Awareness and Support, home of the online support group; www.freewebs.com/adtas ; 951.689.2822 or 909.795.7411; [email protected] [see also article on page 7.]
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.
support group
Internet sites for Transplant Recipients:
The following Web sites have information about health, news, policy, legislation, finances, insurance and employment:
FACTS AbOuT TRANSPLANTATION IN THE United StateSON JuNE 1, 2007, ThE OPTN NATiONAL PATiENT WAiTiNg LiST FOR ORgAN TRANSPLANTS iNCLuDE ThE FOLLOWiNg:
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.
77,159 registrations for a kidney transplant
17,247 registrations for a liver transplant
1,664 registrations for a pancreas transplant
231 registrations for a pancreas islet cell
2,373 registrations for a kidney-pancreas transplant
211 registrations for an intestine transplant
2,640 registrations for a heart transplant
116 registrations for a heart-lung transplant
2,369 registrations for a lung transplant
104,010 TOTAL REGIsTRATIONs
73,123 patients waiting for a kidney transplant
16,743 patients waiting for a liver transplant
1,641 patients waiting for a pancreas transplant
230 patients waiting for a pancreas islet cell
2,315 patients waiting for a kidney-pancreas transplant
209 patients waiting for an intestine transplant
2,631 patients waiting for a heart transplant
116 patients waiting for a heart-lung transplant
2,349 patients waiting for a lung transplant
96,859 TOTAL pATIENTs*
0 5000 10000 15000 20000
lung
heart-lung
heart
intestine
kidney-pancreas
pancreas (no kidney)
liver
kidney (no pancreas) (6,435 living donors)
Numbers of Transplants Performed 2006**(Total 28,934)
17,094
6,650
463
924
175
2,192
31
1,405
0
2000
4000
6000
8000
10000
LivingDeceased
ORgAn-SPECIFIC PROgRAmS
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
66 lung Transplant Programs
851 TOTAL
14,755 TOTAL
** Based on OPTN data as of May 25, 2007. Double kidney, double lung and heart-lung transplants are counted as one transplant.
* During 2006, 6,229 patients were removed from the OPTN National patient waiting list for reason of death.
NOTE: Data subject to change due to future data submission or correction.
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As of May 29, 2007, 257 medical institutions in the united States operate an organ transplant program. These transplant centers can be separated into organ-specific programs that include the active programs listed below.
This data is from the united Network for organ sharing. for more information
school days, school days, days By Cindy Brown, MSW, LMSW, and Victoria L. Shieck, RN, BSN, CCTN
pre-Transplant:Depending on the type of organ transplant that is needed, the physical symptoms will vary. for example, many children waiting for a kidney, heart or liver transplant may have fatigue. Depending on the degree of fatigue, many children are not able to participate in a full day at school. If your child is having any difficulties participating in school activities or is missing an excessive amount of school due to illness, it might be necessary to talk with the school about a modified school schedule or to start homebound teaching. As a parent or guardian, you should work to develop good communication with your child’s teacher, school nurse, principal and transplant team regarding these issues. The school will likely request that any special accommodations be made in writing and be signed by the child’s physician. members of the transplant team and members of the school staff may need to communicate with each other about your child’s accommodations, so you will likely be asked to sign a release of information form so that this can occur. The school will require some medical history and information on your child’s current health issue in order to provide the appropriate support. The transplant
team works very hard to protect your child’s privacy. If you have any questions or concerns, talk with the transplant team in advance to review what information will be shared. If your child has been scheduled or listed for a transplant, let the school know the possible date of the transplant (if it is going to be a live donor transplant).
An important thing to keep in mind is that your child’s participation in school is not only for education, but also socialization. seeing and
keeping in touch with friends is an important aspect of a child’s mental health. It may be worthwhile to consider a reduced school schedule in which the child continues to attend class for even just a few hours a day so that he or she can maintain their social contacts.
post-Transplant:Within several days of your child having a transplant, you should contact the school to inform them that the transplant has occurred. If possible, let the school know
approximately how long your child will be out. Depending on the type of transplant, most children will be out of school for about 6 to 12 weeks after transplantation. you should consult with your transplant nurse coordinator to determine how long your child will be out.
Homebound Teaching:homebound teaching is a situation in which a teacher from your child’s public school district comes to your house and helps your child with classroom assignments. your public
school district should be able to offer a homebound teacher when requested by a physician. Be aware that visits made by the homebound teacher are very limited and may only be about an hour or two per week. The homebound teacher will obtain some of the school work directly from your child’s teacher(s), and your child will be responsible for completing as much of the work as possible during the rest of the week. Private schools do not typically have homebound teachers, but they may be able to make some
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.
transplantation & school
some children are excited to get back to school, but many parents are concerned about their health. Prior to your child returning to the classroom, you should contact his or her teacher(s) and school nurse.
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Transplant Chronicles VOL. 14 NO. 1 1�
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 cause difficulty with concentration for your child. As the dose of these medications decrease, the concentration problems should improve. Do not be surprised if your child needs a nap after working on their homework. This is normal. Also, long hospitalizations can cause deconditioning. Just being in the hospital and lying in bed can wear children out, and it may take several weeks for them to start regaining their energy.
Returning to school:returning to the classroom is a great sign of progress and that life is slowly returning to “normal.” some children are excited to get back to school, but many parents are concerned about their health. Prior to your child returning to the classroom, you should contact his or her teacher(s) and school nurse. update them on the current medical problems, and let them know if there are any medications that need to be given while at
school. let them know that if your child has been exposed to any communicable infections (such as chicken pox), you should be notified at once. your transplant nurse coordinator will give you guidelines at the time of discharge regarding what types of infections to be concerned about. your transplant team will also need to send a letter to your child’s school giving your child permission to return to the classroom. The letter should include the transplant type and date, a list of current medications with doses, a note about any medical needs that your child might require while at school (example: having the blood pressure or glucose readings done during school hours), and if there is any special equipment needed during school (example: a wheelchair).
school attendance is taken very seriously these days, but good communication between your family, the school, and the transplant team can easily resolve
most issues. remember that, while they are responsible for any missed assignments when away from school for clinic visits, lab draws, hospitalizations, or illnesses, your child cannot be penalized for the actual absence. If you feel that the school is unfairly penalizing your child for medically-related absences, inform your transplant team.
your transplant team is here to assist you, your child, and your family in many aspects of care, including the significant transition back to the classroom. Be sure to let them know how they can be of help to you. TC
Cindy K. Brown, LMSW, ACSW, is a clinical social worker assigned to the university of Michigan Pediatric Liver Transplantation Program.
transplantation & school
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1� Transplant Chronicles VOL. 14 NO. 1
West Nile virus and Transplant RecipientsWest Nile virus (WNv) causes a potentially serious illness that affects the central nervous system. WNv is now in most of the united states. The most common way people become infected is through the bite of an infected mosquito. People who have received a transplant may be at significantly higher risk for developing serious outcomes of WNv disease, including meningitis, encephalitis, or possibly death.
The diseaseWest Nile virus causes a seasonal epidemic in North America that flares up in the summer and continues into the fall. People infected with WNv may develop serious and sometimes life-altering or even life-threatening illnesses that require hospitalization, such as West Nile encephalitis and West Nile meningitis (conditions associated with inflammation of the brain or the area around the brain) or West Nile polio-like paralysis. WNv disease occurs between three and 14 days after being bitten by an infected mosquito.
symptoms of severe WNv disease include high fever, headache, neck stiffness, stupor, disorientation, coma, tremors, muscle weakness,
vision loss, numbness, and paralysis. symptoms can last several weeks, and neurological effects can be permanent. In the general population, usually there are no symptoms with WNv, but it may cause less severe illness with fever, headache, body aches, nausea, or vomiting. sometimes this includes a skin rash on the chest, stomach, and back. These symptoms typically last a few days, but may last several weeks.
There is no specific treatment for WNv disease. Human vaccines for WNv are still in the early stages of development.
Transplant recipients are at increased risk of severe West Nile virus diseasemedicines taken by transplant recipients can make it hard to fight infections. Transplant recipients may develop the severe forms of WNv disease, including encephalitis, meningitis, and even death, more often than persons with normal immune systems.
special considerations for Transplant Recipients• WNv disease should be considered
in any transplant recipient with unexplained fever and/or neuro-logical symptoms during mosquito season. This is true, even for recipi-ents who develop the symptoms long after their transplant.
• Contact your health care provider as soon as possible if you think you have symptoms of West Nile virus infection.
• Immunosuppressed recipients may have longer incubation periods, delayed development of antibod-ies, and an increased likelihood of
getting severe disease compared to people who are not immunosup-pressed.
AvOId mOsQUITO BITEs!n Look for repellents with EPA-regis-
tered active ingredients:
repellents containing DeeT (N, N-diethyl-mtoluamide), picaridin (kBr 3023), or oil of lemon eu-calyptus (p-menthane 3,8-diol) typically provide longer-lasting protection than other products. Permethrin is registered for use on clothing, shoes, bed nets, and camping gear, though not directly on skin. It can provide protection through several washings.
n wear clothing that can help re-duce mosquito bites
Wear long sleeves, long pants, and socks whenever possible outdoors. mosquitoes may bite through thin clothing, so consider spraying clothes with repellent (including permethrin) for extra protection.
n Be aware of peak mosquito hours
The hours from dusk to dawn are peak mosquito biting times. you can get bites even during a short time outdoors. Take extra care to use repellent and protective clothing.
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.
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Transplant Chronicles VOL. 14 NO. 1 1�
Resourcesfor detailed information about prevention and repellent use, see www.cdc.gov/westnile or call the CDC public response hotline at 800.CDC.INfo
for additional information on repellent safety see the National Pesticide Information Center at http://npic.orst.edu or call 800.858.PesT
for information about WNv transmission in your area consult your local or state health department.
for information about organ donation and transplantation, go to http://organdonor.gov
for more information about West Nile virus, go to: http://www.health.state.ny.us/diseases/west_nile_virus/
To download a brochure version of this article go to: http://www.kidney.org/atoz/
By Debra Washington, Kidney Recipient
Continued from page 18
I thought we’d go out on the town and dance the night away,Or to a quiet restaurant for dinner and a play.
A cruise to a small island to enjoy the golden sun,Enjoy the sites, the clubs at night, have lots and lots of fun.
My girlfriend wants to take me out so we can celebrate.
We’d eat and drink and laugh and cry and stay out very late.
If I had won the lottery there’d be a big “to-do,”For everyone who knows the things that we have both been
through.A band and ballroom dancing, I’d have
Whitney Houston sing,A tribute to your life and to the special joy
you bring.While making preparations to give thanks
for one more year,I thought of what you did for me and stopped
to shed a tear.Someone whom I have never met who gave unselfishly,
A gift that no one else could give, a perfect match for me.I woke up on our special day and it was very clear,
There’d be no night on the town, no fanfare and no cheer.
I’ll light a candle to you and your lovely family, Who hold you in their hearts always
in loving memory.Your Mom told me you did enjoy the taste
of ice cold beer,I raise my Michelob to you, and to another year.
Debra Washington lives in Maryland and received a kidney from a deceased donor 10 years ago.
remember!keep repellent close at hand during summer months. The easiest and best way to avoid WNv disease is to prevent mosquito bites.• use protective clothing and effec-
tive repellents whenever you go outdoors.
• mosquito-proof your home. In-stall or repair screens on windows and doors to keep mosquitoes outside.
• empty water from buckets, cans, pool covers, flower pots, pet wa-ter dishes, birdbaths, and other items daily because mosquitos lay eggs in standing water.
NEXt PAgEPREViOUS PAgE cONtENtS
JoIN Nkf in the fight to extend immunosuppressive drug coverage under medicare for the life of the kidney!
www.kidney.org > News and Events > Advocacy & Government Relations > “Help Extend coverage for Immunosupressive drugs”
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.
PREViOUS PAgE cONtENtS
This is one of many examples of how our pharmacist has been wonderful: my son needed a form of medicine that had to stay cold. I knew that condition would not fit into our lifestyle. from experience with my other children, I knew I could forget medicines that had to be kept in the refrigerator. so I told my pharmacist the problem, and he said he could make this particular medicine so that it would be stable for two weeks. This way it would not need to be refriger-ated or put on ice when we traveled. That made life easier and also en-sured that my son got all the medi-cines he required on time.
my son was born with congenital heart disease. he had a heart trans-plant two weeks before his second birthday. I already knew the value of an experienced pharmacist because my son had been on some type of medication his whole life. When he was one year old we moved to a new town. As soon as I knew the area we would be living in, I found a pharma-cy. I made sure we had a pharmacist even before we had a house to live in. That is how necessary I knew it was.
I picked a local pharmacy with the same person to help me each time. I went in with paper copies of my son’s prescriptions to make sure the phar-macy could stock his medicines.When my son was transplanted 15 years ago, his medical team would not discharge him until they had talked to our pharmacist. After the heart transplant surgeon and the
cardiologist, our pharmacist has been the most important medical profes-sional involved in my son’s life.
These are a few things you should consider when deciding if you have the right pharmacy to help with your transplant prescriptions:
n If you do not have a good phar-macist, find one you can trust before your operation. explain that you or a loved one will have a transplant and make sure they can get the medicines you will need.
n your pharmacist needs to be will-ing to talk to you, listen to you and not be so busy they cannot discuss your special needs.
n make every effort to have a one-on-one relationship with your pharmacist.
our pharmacist has caught, on more than one occasion, prob-lems or possible issues with my son’s medicines. A doctor had prescribed an antibiotic that did not interact well with my son’s immunosuppression medicines. our pharmacist spotted a problem and prevented a possible deadly situation. he called the doctor requesting that a different antibiotic be used.
Tell your pharmacist if you are having a problem with your medicines. They may have an idea that helps. When my son was first transplanted, he was so small he
needed a pediatric dose of medicine that had to be mixed using a mortar and pestle. our pharmacist mixed liquid cherry syrup with the crushed tablets. on my next visit he asked how my son liked it. I told him he made a face and it was hard to get him to take a dose. our pharmacist sent an employee to the grocery store to buy wild cherry syrup for the mixture. my son had no problem taking the medicine the next time.
A good pharmacist can also detect when a patient may not be taking their medicines correctly. Teenage compliance is a real problem. When my son got older, it was our pharmacist who noticed that my son was not taking one of his medicines. The pharmacy records indicated that the medicine had not needed to be refilled as it should have been.
Carry the pharmacist’s telephone number with you. often it is easier to contact them than it is the transplant coordinator if you just need a refill while out of town.
It is best to give your pharmacy a call three or four days before your refill is due so they will have it on hand and you don’t have to wait while they fill your medicines.
every pharmacist is human and can make mistakes. Take the time to check that your medicines are the right color, size or number.
most important: find a great pharm-acist. my son has one.
