The Infusion Inquirer · running/jogging, roller skating/skateboarding, soccer and many others.1...

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Hemophilia Services Volume 9, Number 4 The Infusion Inquirer Choose Your Sports Carefully Is playing street hockey safe for persons with bleeding disorders? What about football, lacrosse, rugby, competitive diving and boxing? The answer is no. All these sports are not recommended in the booklet Playing It Safe: Bleeding Disorders, Sports and Exercise, published by the National Hemophilia Foundation (NHF). Also among the sports not recom- mended are BMX racing, outdoor rock climbing, power lifting, wres- tling and jumping on a trampoline. Even with so many restricted sports, the booklet advocates participation in low- or moderate-risk sports and exercise because they contribute to a child’s healthy physical, social and emotional development. List of Safe Sports Is Long According to CSL Behring’s All About Bleeding web site (AllAboutBleeding.com), the list of low-risk sports or exercise is extensive: archery, bicycling, frisbee, golf, hiking, swimming, tai chi, walking and more. Even more extensive is the list of sports that are considered moderately risky: baseball/ softball, basketball, bowl- ing, cheerleading, dance, running/jogging, roller skating/skateboarding, soccer and many others. 1 According to an article in the NHF’s HemAware publication, regular exercise from involvement in sports increases energy, helps maintain a healthy weight and reduces the risk of weight-related illnesses such as diabetes and heart disease. 2 An added bonus for people with bleeding disorders is that exercise also builds muscles and lowers the risk of joint bleeds, the article (continued on p. 2) Also in This Issue: Presurgery Checklist ..................................... 2 HIPAA Law & Pre-Existing Conditions ............... 3 Going Green: Disposal of Needles ................ 4 Keeping a Log for Better Care ....................... 5 The Value of Intuition .................................... 6 Shining Star Paul Wissman ........................... 7 Transitions: Your Baby’s First Year .................... 8 Hemophilia Hotlines in English, Spanish .......... 8 Factor Ape................................................. 9 Clinician’s Corner...................................... 10 Family Learns to Infuse ................................ 11 What Our Customers Are Saying ................. 12

Transcript of The Infusion Inquirer · running/jogging, roller skating/skateboarding, soccer and many others.1...

Page 1: The Infusion Inquirer · running/jogging, roller skating/skateboarding, soccer and many others.1 According to an article in the NHF’s HemAware publication, regular exercise from

Hemophilia Services

Volume 9, Number 4

The Infusion Inquirer

Choose Your Sports CarefullyIs playing street hockey safe for persons with bleeding disorders? What about football, lacrosse, rugby, competitive diving and boxing?

The answer is no. All these sports are not recommended in the booklet Playing It Safe: Bleeding Disorders, Sports and Exercise, published by the National Hemophilia Foundation (NHF).

Also among the sports not recom-mended are BMX racing, outdoor rock climbing, power lifting, wres-tling and jumping on a trampoline.

Even with so many restricted sports, the booklet advocates participation in low- or moderate-risk sports and exercise because they contribute to a child’s healthy physical, social and emotional development.

List of Safe Sports Is Long

According to CSL Behring’s All About Bleeding web site (AllAboutBleeding.com), the list of low-risk sports or exercise is extensive: archery, bicycling, frisbee, golf, hiking, swimming, tai chi, walking and more. Even more extensive is the list of sports that are considered

moderately risky: baseball/ softball, basketball, bowl-ing, cheerleading, dance, running/jogging, roller skating/skateboarding, soccer and many others.1

According to an article in the NHF’s HemAware publication, regular exercise from involvement in sports increases energy, helps maintain a healthy weight

and reduces the risk of weight-related illnesses such as diabetes and heart disease.2 An added bonus for people with bleeding disorders is that exercise also builds muscles and lowers the risk of joint bleeds, the article

(continued on p. 2)

Also inThis Issue:

Presurgery Checklist ..................................... 2HIPAA Law & Pre-Existing Conditions ............... 3Going Green: Disposal of Needles ................ 4Keeping a Log for Better Care ....................... 5The Value of Intuition .................................... 6Shining Star Paul Wissman ........................... 7

Transitions: Your Baby’s First Year .................... 8Hemophilia Hotlines in English, Spanish .......... 8Factor Ape ................................................. 9Clinician’s Corner ...................................... 10Family Learns to Infuse ................................ 11What Our Customers Are Saying ................. 12

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The Infusion Inquirer

Volume 9, Number 42

While surgery is never fun or convenient, planning ahead for a procedure gives you some time to prepare. Walgreens-OptionCare staff members Linda Thomas and Natalie Russo suggest the following points to consider when preparing for a hospital stay.

Call your insurance company to precertify the procedure and related services. 1. Estimate your deductible and expected out-of-pocket expenses.Call the hospital for preadmission. Make payment arrangements with the hospital 2. prior to your stay.Check to see if the hospital allows you to bring your own factor, ancillaries and 3. supplies to infuse (if needed).If you foresee an extended hospital stay for your child, make plans to stay at a 4. Ronald McDonald House or a similar facility close to the hospital. This will help you with taking breaks and getting some solid sleep during your child’s hospital stay.Bring all important phone numbers, such as those of your pharmacist, home care 5. company and hemophilia treatment center.Don’t forget your cell phone and charger, personal items and ancillaries (needles 6. and dressings, for example).Pack books, magazines, DVDs, MP3 player and other items to help pass the time.7. Bring plenty of change for vending machines.8.

says. According to the U.S. Centers for Disease Control and Prevention (CDC), young people between ages 13 and 19 with hemophilia and von Willebrand disease are almost twice as likely to be overweight than children their age in the general population.

Before starting an exercise program or participating in sports, the NHF article stresses the following to lower the risk of injury:

Talk with your doctor or hemophilia treatment center physical therapist or staff about the activity •Know the early signs of a bleed and how to treat it properly •Wear adequate protective equipment •Build up your activity slowly •Take part in conditioning exercises such as stretching and weight training •

You may also consider discussing with your doctor or treatment team the option of prophylactic infusion before participating in a sport.3

For a free copy of Playing It Safe or other information on exercise and bleeding disorders, call the NHF Information Resource Center at 800-42-HANDI (424-2634) or email [email protected].

References1. Diet and exercise. All About Bleeding web site. www.allaboutbleeding-us.com/diet-exercise.aspx. Last updated June 15, 2009. Accessed August 6, 2009.2. McIntosh D. For the love of sports. HemAware. National Hemophilia Foundation. March/April 2006:26-32.3. Obstein L. Home infusion. Parents Empowering Parents (PEP) Program web site. www.pepprogram.org/chapter.asp?nav_id=2&article_id=52. Accessed August 11, 2009.

Plan Ahead With a Presurgery Checklist

Choose Your Sports Carefully (continued from page 1)

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Volume 9, Number 4 3

HIPAA Law Helps End Pre-Existing Condition NightmaresIndividuals with bleeding disorders who lose health insurance coverage may be in danger of being denied coverage on a new policy. However, the Health Insurance Portability and Accountability Act (HIPAA) may come to the rescue of you and your dependents, according to the Department of Labor.1

HIPAA limits the ability of a new employer to exclude coverage for your and your dependents’ pre-existing conditions. In addition, the law:

Provides opportunities to enroll in a group health plan if you lose other coverage or experience certain •life eventsProhibits the denial of group coverage or extra charges for coverage due to your or your dependents’ •prior medical conditions, previous claims experience, genetic information or other health factorsGuarantees that certain individuals will have access to, and can renew, individual health insurance policies •

In some states, HIPAA is complemented by state laws that may offer still more protections. Contact your State Insurance Commission (naic.org/state_web_map.htm) for more information.

HIPAA, however, does not provide the solution in all circumstances.1 For example:HIPAA does not require that an employer offer health coverage or that conditions you now have will •be covered by a new employer’s health plan.You must obtain a new health insurance plan within 63 days of losing coverage or the HIPAA •protections may not apply.If you have received medical advice, care, treatment or a diagnosis for a pre-existing condition during a •six-month period prior to your new plan’s enrollment date, the new plan can exclude coverage for the pre-existing condition for up to 12 months, or 18 months if you are a “late-enrollee.” You receive other plan benefits during that time, however.

For more information on HIPAA and health insurance coverage, contact one of these sources:

Tina Dooley, pharmacist, Walgreens-OptionCare: •866-436-4376NHF’s HANDI Information Resource Center: •800-42-HANDI (424-2634)PSI ACCESS: 800-366-7741 •

Reference1. United States Department of Labor. Employee Benefits Security Administration. FAQs about portability

of health coverage and HIPAA. www.dol.gov/ebsa/faqs/faq_consumer_hipaa.html. Accessed August 6, 2009.

Walgreens-OptionCare is here to help.Call Walgreens-OptionCare Hemophilia Services

toll free at 866-436-4376 for assistance 24/7.

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The Infusion Inquirer

Volume 9, Number 44

Why use a sharps container? Is it really a problem to just toss a needle in the trash? Yes, it is a big problem.

The U.S. Centers for Disease Control and Prevention (CDC) reports that needlesticks and other sharps injuries contribute to the spread of blood-borne pathogens such as the human immunodeficiency virus (HIV) and hepatitis B and C viruses.1

The sheer number of needles used in the home and other nonmedical environments heightens the potential exposure to these infections. According to the Coalition for Safe Needle Disposal (SafeNeedleDisposal.org), about 9 million syringe users give at least 3 billion injections outside traditional healthcare facilities each year. The coalition reports that many syringe users are not aware of safe disposal methods and simply throw used needles in the trash or flush them down the toilet.2

Many states have banned needles from residential and commercial trash pickup, the coalition says. To learn about state needle disposal regulations, visit SafeNeedleDisposal.org/resslaws.html.

The coalition has identified several types of safe needle disposal:3 Supervised collection sites or drop boxes: • Take your filled sharps containers to appropriate collec-tions sites, which may include doctors’ offices, hospitals, pharmacies, health departments, police and fire stations, or household hazardous waste collection sites. Services are free or have a nominal fee.Mail-back programs: • These programs allow you to place your used sharps in a special container, which is sent by mail to a collection site for proper disposal. This service usually requires a fee, which varies according to the size of the container. Syringe exchange programs: • Safely exchange used needles for new needles through this kind of program. Contact the North American Syringe Exchange Network at 253-272-4857 or online at nasen.org. At-home needle destruction devices: • Several manufacturers offer FDA-approved needle destruction devices, which sever, burn or melt the needle, rendering it safe for disposal. The price of this kind of device will vary according to product type and manufacturer.Residential special waste pickup service: • In some communities, you can place used sharps in a special container, similar to a recycling container, for curbside collection by trained special waste handlers. Some programs require customers to call for a pickup, while others offer regular pickup schedules.

For more information:Talk to your Walgreens-OptionCare patient care coordinator. •Call the Walgreens-OptionCare toll-free hotline 24/7 at 866-436-4376. •Search “sharps disposal” on the Internet. •

References1. National Institute for Occupational Safety and Health. Bloodborne infectious diseases HIV/AIDS, hepatitis B virus and hepatitis C virus. www.cdc.gov/niosh/topics/bbp. Page last

reviewed May 12, 2009. Accessed August 6, 2009.2. The problem. Coalition for Safe Community Needle Disposal web site. www.safeneedledisposal.org/genprob.html. Accessed August 6, 2009.3. Types of sharps disposal programs. Coalition for Safe Community Needle Disposal web site. www.safeneedledisposal.org/gentypes.html. Accessed August 6, 2009.

Going Green With Walgreens: The Proper Disposal of Needles

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Hemophilia Services

InfusionLog

Patient name: Weight: Date of infusion

Time of infusion: am/pm Treated bleed within: less than 1 hour 1-3 hours more than 3 hours

Reason: spontaneous injury surgery new bleed dental prophylactic immune tolerance other:

Type of access: port central line peripheral (area )

Did you have difficulty accessing? Y/N if yes, please specify:

Did you use: R.I.C.E.? If so, please specify:

Contacted: treatment center homecare company other

Circle level of pain: (1=no pain , 10=most pain ) 1 2 3 4 5 6 7 8 9 10

Did you use: AquaWrap ® ice pack Cryo/Cuff ® wheelchair Ace ® bandage

other Did you use pain medication? Y/N

What kind? How much? Was it effective? Y/N

Type of bleed Outcomes

N/A Nose MouthLOCATION RIGHT LEFTShoulder cm cm Elbow cm cm Wrist cm cm Hip cm cm Thigh cm cm Knee cm cm Ankle cm cm Toe cm cm Finger cm cm Head cm cm Eyes cm cm

Description Bruising Red Hot Swollen

Comments:

Was school/work missed due to

injury? No Yes # Days

Did parent/caregiver miss work due to

injury? No Yes, # Days

Unscheduled doctor visit due to injury?

No Yes

ER visit due to injury? No Yes

Hospital stay due to injury?

No Yes # Days

Attach Label/Record Vial Information

Lot#

Assay#

Exp Date

Lot#

Assay#

Exp Date

Lot#

Assay#

Exp Date

Lot#

Assay#

Exp Date

Lot#

Assay#

Exp Date

Lot#

Assay#

Exp Date

Brand names are the property of their respective owners.

Patient name: Weight: Date of infusion

Time of infusion: am/pm Treated bleed within: less than 1 hour 1-3 hours more than 3 hours

Reason: spontaneous injury surgery new bleed dental prophylactic immune tolerance other:

Type of access: port central line peripheral (area )

Did you have difficulty accessing? Y/N if yes, please specify:

Did you use: R.I.C.E.? If so, please specify:

Contacted: treatment center homecare company other

Circle level of pain: (1=no pain , 10=most pain ) 1 2 3 4 5 6 7 8 9 10

Did you use: AquaWrap ® ice pack Cryo/Cuff ® wheelchair Ace ® bandage

other Did you use pain medication? Y/N

What kind? How much? Was it effective? Y/N

Type of bleed Outcomes

N/A Nose MouthLOCATION RIGHT LEFTShoulder cm cm Elbow cm cm Wrist cm cm Hip cm cm Thigh cm cm Knee cm cm Ankle cm cm Toe cm cm Finger cm cm Head cm cm Eyes cm cm

Description Bruising Red Hot Swollen

Comments:

Was school/work missed due to

injury? No Yes # Days

Did parent/caregiver miss work due to

injury? No Yes, # Days

Unscheduled doctor visit due to injury?

No Yes

ER visit due to injury? No Yes

Hospital stay due to injury?

No Yes # Days

Attach Label/Record Vial Information

Lot#

Assay#

Exp Date

Lot#

Assay#

Exp Date

Lot#

Assay#

Exp Date

Lot#

Assay#

Exp Date

Lot#

Assay#

Exp Date

Lot#

Assay#

Exp Date

Brand names are the property of their respective owners.

Volume 9, Number 4 5

Keeping a detailed log of infusions is an important part of caring for a bleeding disorder. Getting into the habit of noting the date of each infusion and its amount, as well as the date of each bleed and its location, provides important information that can be used to better manage your or your child’s condition.

Acquiring this discipline may be easier than you think. In today’s world of iPhones, BlackBerries, PDAs and day planners, there are many electronic tools that help us keep track of our lives. And there’s nothing wrong with keeping a simple diary with pen and paper, says Walgreens-OptionCare patient advocate Cazandra Campos-MacDonald.

“There are many different versions of infusion logs,” she explains. “Depending on your preference, you should be able to find the log that best suits your lifestyle.”

What to Include in Your LogIn general, your log should keep track of the following information:

Date and amount of each infusion •The reason for the infusion: bleed, pre- or post-op, prophylaxis, other •Location of bleed •

Keeping a log will help you notice patterns. “You may observe that you are using more factor than usual and your dosage needs to be changed. Or a target joint may be forming and you have not noticed since the bleeds are far apart,” Campos-MacDonald says.

The log information also will help the hemophilia treatment center (HTC) treat you or your child to the best of their ability. When the HTC staff members have data on the pattern of bleeds and the amount of factor it takes to resolve bleeds, they can identify whether or not any additional issues other than regular bleeding may be happening, according to Campos-MacDonald.

If you are in need of an infusion log, email [email protected] or call our hotline 24/7 at 866-436-4376 and we will send one to you. Your HTC also will be able to educate you about the many different versions of logs that are available to you.

Keeping a Log: An Important Part of Your Care

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The Infusion Inquirer

Volume 9, Number 46

Many people believe the old adage “the doctor is always right.” They tend not to question the advice a medical professional gives. However, as a parent learns more about a bleeding disorder or another condition, questions may begin to surface.

For example, Walgreens-OptionCare patient advocate Cazandra Campos-MacDonald has a 3-year-old on a daily dose of factor while he is dealing with an inhibitor. He is infused through an implanted port. “Recently, his port just didn’t ‘feel’ right,” Campos-MacDonald says. “It was working, but my son was now screaming during his infusions. ‘Owchy, owchy!’ he would cry… I simply knew something was not quite right.”

Two weeks passed, and while Campos-MacDonald prepared to infuse for a bleed, the port stopped working. After a 3 ½-hour drive to the nearest hemophilia treatment center, she had her son admitted and a new port was implanted the next day. “The old port was corroded. It was falling apart,” Campos-MacDonald recalls.

“Did my son have signs of a port infection? No. Was there any medical reason to believe that something was wrong with his port? No. How did I know something was wrong? It was simply intuition,” she says.

Intuition Can Come From the Brain’s Problem-Solving ProcessWhile many believe intuition is a natural instinct possessed primarily by women or mothers, Chicago-area psychologist Jeanette Quirk, MS, says intuition is commonly viewed as a product of the brain’s ability to constantly process information. “Intuition may come from a problem-solving process that goes on at three levels of brain function—unconscious, subconscious and conscious. The brain works to put together pieces of a puzzle, whether we realize it or not, and even if we do not have the medical or technical information or knowledge that might be needed to solve a problem.”

For these reasons, Quirk says parents should not discount intuition because they lack medical training. “When you’re around a child and a problem he or she is having all the time, you simply see things others don’t. And that’s valuable knowledge, whether you’re a doctor or not,” she says.

Campos-MacDonald agrees that intuition is a powerful thing. “In the bleeding disorders community, there is a saying that goes ‘When in doubt, infuse,’” she says. “We also need to remember not to doubt ourselves. Our instincts are strong. Our basic ‘sixth sense’ is very accurate where our children are concerned. When in doubt, trust your gut, trust your abilities and trust those around you who help make decisions regarding your child’s care.”

Quirk, Jeanette. Telephone interview August 13, 2009.

The Value of Intuition

“How did I know something was wrong? It was simply intuition.”

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Volume 9, Number 4 7

An engineering student at the University of Missouri at Columbia, Paul Wissman uses his mechanical ability to build things out of metal and wood. For use on his family’s sheep farm in Leasburg, MO, Paul recently constructed a flatbed, a tack box and stock trailers. He also recently built a doghouse and bed frame.

His skill extends to cars and tractors. He works part time as a mechanic for John Deere, providing him the means to pay for college. This kind of industriousness has enabled the 22-year-old to build an exciting life and future for himself despite having severe hemophilia A since birth.

“I don’t base my life around hemophilia but I do require medi-cation before activities and I’ve learned my limitations,” Paul says. He infuses prophylactically three times a week, as well as on demand to prevent or manage bleeding. As a result, he enjoys running to stay in shape, as well as other sports.

He and family members are active in the Gateway Hemophilia Association chapter. Paul has participated in the association’s golf tournament, Christmas functions and Lobby Day at the Missouri state capitol. He also attended the Midwest Hemophilia Association’s Wilderness Camp. “It allows you to see that there are others out there just like you,” Paul says. “You develop relationships with others like you.”

His parents, Lois and Don, participate in chapter meetings and events for family. Lois is a strong advocate for individuals with hemophilia in regard to insurance issues.

Even though his college course work and part-time job keep him very busy, Paul still finds time to hang out with friends and participate in the university’s Brothers Under Christ fraternity. His network of friends and colleagues give him an extra measure of support when he needs it.

His advice for others? “Don’t let hemophilia control your life,” he emphasizes. “Live your life and enjoy it.”

Building an Exciting Life and Future: Shining Star Paul Wissman

“Don’t let hemophilia control your life,” Paul emphasizes.

“Live your life and enjoy it.”

Paul Wissman working on his truck.

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The Infusion Inquirer

Volume 9, Number 48

“Having a child,” Bill Cosby once said, “is surely the most beautifully irrational act that two people in love can commit.”1

That statement applies especially to the first year of a baby’s life, when growth spurts are more like growth sprints. Within 12 months, a child grows more quickly than in any other devel-opmental stage. He or she goes from moving arms and legs, to rolling and crawling, to walking and falling over and over again.

Walgreens-OptionCare social worker Wayne Richards says bumps and bruises are normal during this period of develop-ment. For parents of a baby with a bleeding disorder, a natural reaction may be to form a protective barrier around the child. But being overly protective is a mistake, he says.

According to the National Hemophilia Foundation (NHF) Orientation Manual for Healthcare Professionals,2 “parents are frequently tempted to keep their child in a playpen to prevent injuries… Parents may even be hesitant to handle their infant with hemophilia. Holding, rocking, hugging and patting the baby will not harm him… Since touch is a major means of communication with the infant, frequent physical contact is important.”

The NHF warns against keeping a child in a playpen for more than 20 minutes. Instead, the organiza-tion suggests child proofing the house by putting gates on stairwells and removing furniture that tips easily or has sharp edges. While crawling and walking do increase the risk of bleeds, these activities help develop normal motor and cognitive skills and strengthen muscles. Strong muscles, in turn, help decrease joint bleeding.

References 1. Bill Cosby quotes. Brainy Quote web site. www.brainyquote.com/quotes/quotes/b/billcosby386505.html. Accessed September 17, 2009.2. Clements M. The growth and development module. In: Orientation Manual for Healthcare Professionals. New York, NY: National Hemophilia Foundation; 2001:118.

www.hemophilia.org/NHFWeb/MainPgs/MainNHF.aspx?menuid=106&contentid=99. Accessed October 15, 2009.

Transitions: Managing Your Baby’s First Year

Walgreens-OptionCare is here for you whether you say “hello” or “hola.” English and Spanish hotlines provide access to an experienced bleeding disorders specialist 24 hours a day, seven days a week. Leading the English hotline team is pharmacist Tina Dooley, with patient advocate José Iglesias in charge of the Spanish hotline.

Hotline staff can provide information on medications, products and supplies, camps, special events, and local and national resources to patients and their families. Healthcare professionals—including doctors, nurses, pharmacists and discharge planners—also can contact the hotlines for support with treatment plans, dispensing processes and transitions to home. Hotline staff also can answer questions relating to insurance, governmental programs and educational opportunities, including scholarships available to individuals with bleeding disorders. Whether you have a simple question, a special concern or just need a sympathetic ear, the hotline team members are here for you!

English: 866-436-4376 En español: 800-456-1923

Hemophilia Hotlines Provide Help in English, Spanish

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Volume 9, Number 4 9

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The Infusion Inquirer

Volume 9, Number 410

Catalina Mireles, RN, of Walgreens-OptionCare answers questions important to parents of children with bleeding disorders.

1. What exactly is “half-life” and how do you figure it out? Half-life is how many hours it takes before only 50 percent of the infused factor product remains in your bloodstream. Before you can determine a half-life, you need to be infused to 100 percent as a baseline level. Medical staff then monitors how long it takes for the factor level to decrease to 50 percent. The typical half-life of factor VIII is 8 to 12 hours and factor IX 18 to 24 hours.

2. Can you take too much factor? What symptoms, if any, would you have? Too much infusion of a factor product can increase the risk of blood clots, especially if your child receives continuous infusion through an indwelling venous catheter.

Blood clot symptoms can include chest pain, breathlessness, severe headaches, confusion, loss of balance and coordination, surface vein inflammation causing pain or tenderness, swelling, redness or warm sensation, sharp pain when the foot is flexed and throbbing calves when walking.1 Blood clots can lead to heart attack, stroke or pulmonary embolism.

3. I’ve been told to infuse my child in the mornings. I have three children and the mornings are crazy! Is it terrible to infuse in the evenings?

Prophylactic infusions in the morning work best because they bring the factor level to its highest point during the most active part of the day. Evening infusions will increase the factor level during the nighttime hours, when a high factor level is not necessary. It’s important to discuss your child’s infusion schedule with your hematologist/hemophilia nurse coordinator.

Incorporating infusions into an already hectic morning routine can be difficult.

It may be helpful to discuss ways to accomplish this task with another parent who deals with similar circumstances. Walgreens-OptionCare’s Families Supporting Families Program allows parents to connect with other parents familiar with the issues your family faces daily.

To learn more about this program, please email Cazandra Campos-MacDonald at cazandra. [email protected] or call 866-436-4376.

Reference1. Bantwai L. Blood clot symptoms. Buzzle.com web site. www.buzzle.com/articles/blood-clot-symptoms.html. Published December 29, 2007. Accessed August 18, 2009.

Clinician’s Corner

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Volume 9, Number 4 11

In response to an Infusion Inquirer request for stories about why and how parents or children learn to infuse, Celeste Sanchez wrote that an accident finally tipped the scales in favor of placing a port.

“My husband and I were at odds about the port,” Sanchez says. “He was for it, and I was against it. I was worried about infections and how he [her son] would do with the surgery, and my husband was very confident and calm about the process.

“One day, Josh fell on a Lego® block and cut the bottom of his lip badly,” she continues. “His lip looked as if it was detached and just hanging as the blood kept pouring out. That week, we took him to the doctor every day for an infusion. What made it worse is that the nurses always had a hard time accessing a vein; they would poke him in different parts of his body till they found vein access.

“That was the hardest week for me, seeing him in that state and then listening to the doctors strongly recommend the port,” she recalls. Because she did not take the decision about placing a port lightly, she says she researched the topic and consulted with several people involved with hemophilia patients. After completing her research, “I told my husband I was on board with him to place a port,” she says. Sanchez says Walgreens-OptionCare sent a nurse to the home to show Sanchez and her husband how to infuse.

“It’s been a year since Josh (now age 3) received his port, and it has been the best and easiest way to

handle his severe hemophilia A. He is as active as he ever was, and he often forgets he has a port. The port has worked very well for us,” Sanchez says.

Josh helps his parents infuse. “He will help push the syringe as we are flushing his port, and he helps set up the mat with all the items needed,” Sanchez explains. “After all is done, we offer him a special treat for doing such a good job. We have special treats that he can only have after infusions—little surprises such as small toys, stickers and candies. He looks forward to that time.”

Family Learns to Infuse

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Walgreens-OptionCare National Hemophilia Services Team

Vicki Billups-Oberkrom, LPN

Director, Biotherapeutics

Cazandra Campos-MacDonald

Patient Advocate

Tina Dooley, PharmD

Pharmacist, Hemophilia Services

Cheri Graham

Purchasing Manager

Evan Hammett

Regional Sales Manager, Ohio Valley

Jadd Helma

Regional Sales Manager, Midwest

Kurt Himes

Regional Sales Manager, Northeast

José Iglesias

Care Coordination Manager

Matt Kempf

Regional Sales Manager, West Region

Priscilla Lanigan, RN

Hemophilia Nurse Educator

David Moss

Regional Sales Manager/Field Trainer, Southwest

Wayne Richards, MSW, LCSW

Social Worker

Natalie Russo

Hemophilia Care Specialist

Caleb Sellers

Director, Business Development

Linda Thomas

Hemophilia Care Manager

Hemophilia Services Office 1410 Heriford Rd. Columbia, MO 65202 866-436-4376 HemophiliaOptions.com

Brand names are the property of their respective owners.

The Infusion Inquirer is a publication for members of the bleeding disorder community. The opinions expressed are not necessarily those of the Walgreens-OptionCare staff or Walgreen Co. The information or opinions on medical topics in this pub-lication should not be used as a recommendation for treatment nor is it a substitute for medical advice. Any questions regarding medical advice or treatment should be directed to your doctor. Inclusion of resources in the Infusion Inquirer does not imply an endorsement by Walgreen Co. or any of its subsidiaries and affiliates. Although the Infusion Inquirer is intended to be accurate, neither Walgreen Co., its subsidiaries or affiliates, nor any other party assumes liability for loss or damage due to reliance on this material.

Questions, comments, subscription orders and change of address inquiries may be sent to:

Walgreens-OptionCare Hemophilia ServicesAttn: Cazandra Campos-MacDonald517 Ivy St.Truth or Consequences, NM 87901866-436-4376 [email protected]

Volume 9, Number 4©2009 Walgreen Co. All rights reserved. HC11889-100912

Walgreens-OptionCare is here to help.Call Walgreens-OptionCare Hemophilia Services

toll free at 866-436-4376 for assistance 24/7.

What Our Customers Are Saying

Hemophilia Team

The Infusion Inquirer received this note from a reader:

“Walgreens-OptionCare was the first pharmacy we were referred to when our son was diagnosed with hemophilia three years ago. It has been nothing but the best customer service, the fastest service and the most professional. Natalie Russo (hemophilia care specialist) is also the most helpful person. She always makes sure that we never run out of supplies for infusion. She constantly updates me with any news concerning important meetings that we can attend concerning my son’s condition, and sometimes just calls to say hello. I feel the service that the company provides is exceptional, and my husband and I will always try to do what we can so we can continue receiving service from them. Simply the best!! Thanks again Linda [Thomas], (hemophilia care manager), Natalie and everyone at Walgreens-OptionCare for everything you have done for our family.”

Pictured left to right are: Wayne Richards, MSW, LCSW; Matt Kempf; Kurt Himes;

Jadd Helma; Evan Hammett; Vicki Billups-Oberkrom, LPN; David Moss;

Tina Dooley, PharmD; José Iglesias; Caleb Sellers; Cazandra Campos-MacDonald