First Person: My Life With Sickle Cell Disease

September 13, 2017 at 11:47 am

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Most college students’ biggest worry is their upcoming test or weekend plans. For Washington State University student Laelah Ndifon, it’s how quickly she can get to the nearest hospital.

Laelah has sickle cell disease, an inherited disorder that makes her red blood cells shaped like stiff crescents instead of flexible discs. These pointed cells can snag on blood vessel walls, preventing oxygen from reaching her tissues. As a result, Laelah often experiences intense pain, called a “pain crisis,” that can be life-threatening. Blood transfusions from local donors give Laelah renewed strength and energy by increasing the number of disc-shaped cells in her bloodstream.

Keep reading to learn about how Laelah copes with pain crises, a common sickle cell misconception, and the one thing she wants blood donors to know.

On coping with sickle cell pain crises: Most of my pain crises feel like I’m being stabbed repeatedly by knives and can last for hours, days, and even weeks. The way I take my mind off of my pain is usually by pacing back and forth around the room which sounds weird, but it really calms my mental state through the pain. When it comes to dealing with other people during my pain episodes, I may come off as rude. Not because I want to, but I’m trying to keep my composure and mental state at ease. When I’m being asked a bunch of questions and people are trying to keep a conversation with me, I easily become irritated because the pain causes me to stutter which becomes frustrating. So, I really enjoy isolating myself and dealing with my pain on my own.

Laelah4Laelah with her brother. 

On misconceptions: A common misconception a lot of people have about sickle cell is that it is contagious. Growing up, a lot of people always asked if I was contagious or were scared to share food with me because they were afraid they would get sickle cell, which is not true at all. That’s what I want to stress the most to people who are ignorant about the illness. The only way someone can have sickle cell is through birth and even then, your parents have traits of sickle cell and in some cases, one parent has the trait and the other does not.

On day-to-day challenges: Sickle has impacted my life in so many ways. When I was in high school, I became very fit and became very serious about my physical health. I was working out aggressively one day, and the workout was so strenuous that it put me in the hospital due to a serious pain crisis. From that day moving forward, I had to slow down and rest when needed. I have also had pain crisis in areas of my body that I didn’t know could even have pain crisis. I had my wisdom teeth removed and had sickle cell pain in my mouth for a month and the pain almost matched the severity of my main crisis area: my legs.

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On managing sickle cell in college: Being in college and having sickle cell has impacted my life tremendously. Washington State University is 5 hours away from Seattle, where all my healthcare providers are. So when I am having a pain crisis, I have to go to the nearest hospital that treats sickle cell which is an hour away. Receiving instant medical attention is definitely a huge problem I’ve faced. While in college, I have also developed a severe case of iron deficiency which has affected my performance in my classes. I recently just began having iron infusions that have given me a lot of energy to be academically successful which I am very excited about.

On blogging as an outlet for inspiration: I love helping people and creating an impact in people’s lives, so I decided to create a blog called The Fluer. I try to make it as relatable as possible. I talk about issues pertaining to anxiety, depression, positivity and how to get through it. In many ways my blog has helped me through so much and I have received feedback from people who go through mental illnesses/sickle cell who have found my blog resourceful to them. I hope to be able to help my sickle cell community in the future by opening a non-profit organization and a mentoring program for sickle cell youth. I think my blog is baby steps to my goals for my sickle cell community.

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On the power of blood transfusions: My sickle cell has reached its worst state when I was in high school and had two strokes and a seizure. I was immediately rushed to the hospital where I was given a blood transfusion for the first time. Without that blood transfusion, I don’t think I would be living the wonderful life I am living today. I also didn’t really pay attention to how important donating blood is. With every blood donation, donors are saving so many lives and aren’t given as much credit as they should.

On what she’d say to blood donors: Thank you to each and every blood donor who takes it upon themselves to help others. Your contribution not only is saving lives, but making a huge impact in the world. You’re needed, appreciated, and such a huge part of many people’s lives. Thank you for saving my life!

Preparing for Disaster: A Message From Our CEO

September 11, 2017 at 10:40 am

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Bloodworks Northwest President & CEO Dr. James AuBuchon shared the following remarks at the Rotary Club of Seattle on Sept. 6, 2017. 

There are individuals in our community who generously support others by regularly donating blood.  As Hurricane Harvey bore down on the Texas Coast, and the flood waters were devastating Houston neighborhoods, their support of human need was already evident. Many of those individuals are in this room today, and I want to thank you.

Your gift allowed us to be prepared and respond – respond by providing blood that was prepositioned at Coastal Bend Blood Center in Corpus Christi or that was shipped to Dallas and airlifted to Houston hospitals a week ago before Gulf Coast Regional Blood Center could get back on their feet. They are operational again – but now we have Hurricane Irma headed toward the United States, and we have already received requests to for support from the affected areas since they know they will not be able to collect according to their usual operations.

The moral of the story: Be Prepared. The blood that is needed in a disaster – whether it’s a hurricane or a bus crash on the Aurora Bridge or an emergency surgery that never makes the news– has to already have been recruited, collected, tested, processed and ready to go before the event. So when you hear our request to donate in coming months, or you learn of a blood drive at work or your place of worship, please sign up. When you see our blood mobiles and signs, please walk in to help, to help your neighbor, a family member or someone affected by a disaster, small or large. Your donation being there, at the ready, could indeed make the difference between life and death.

Thank you.

Help us prepare to help others in need: Register to give blood today.

New Donation Hours: Labor Day & Beyond

September 1, 2017 at 10:05 am

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We’re making it even easier for you to save a life. Keep reading to learn about our upcoming holiday hours, new Saturday donation options, and a coffee giveaway that ends this Monday, September 4.

Labor Day Hours

All Bloodworks Donor Centers will be open on Monday, Sept. 4, from  8:00 am – 4:00 pm. Take a day off from your labors and save a life in one of our comfy donor chairs–we’ll make sure it doesn’t feel like work at all. Platelet donors especially needed on Sunday and Monday.

Book Appointment Now

New Weekend & Extended Hours 

Federal Way Donor Center

  • Closed Thursdays, starting Thursday, Sept. 7
  • Open Saturdays from 8:00 am – 4:00 pm, starting Saturday, Sept. 9.

Book Appointment Now

Tukwila Donor Center

  • Closed Thursdays, starting Thursday, Sept. 14.
  • Open Sundays from 8:00 am – 4:00 pm, starting Sunday, Sept. 10.

Book Appointment Now

Lynnwood Donor Center

  • Closed Wednesdays, starting Wednesday, Oct. 4.
  • Open Saturdays from 8:00 am – 4:00 pm, starting Saturday, Oct. 7.
  • New later Thursday hours from 12:00 – 8:30 pm starting Thursday, Oct. 5.

Book Appointment Now

Bean Box Giveaway Ends Sunday

You still have until Monday, Sept. 4 to get a free Bean Box gourmet coffee sample after you register to donate. Also, don’t miss a chance to win a year’s worth of coffee!

Learn More and Sign Up

Despite Harvey, Donor Perseveres to Save Child’s Life

August 30, 2017 at 9:32 am

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When Melissa Hernandez learned a child with leukemia urgently needed her stem cell donation, she immediately booked a flight to Houston, Texas—home to the closest hospital that could perform the procedure.

There was just one problem: Hurricane Harvey was ravaging the Texas coast. As water poured into Houston, it became clear Melissa’s donation wasn’t going to happen. At least, not there.

Melissa initially joined the National Marrow Donor registry to help her mother. But to her surprise, she wasn’t a match (in fact, most patients who need marrow transplants do not have a familial match). When her friend’s son needed bone marrow, she again wasn’t a fit. “I just kind of left it at that,” she recalled.

She all but forgot about being a registered marrow donor until she received an email earlier this year. It was an alert from Be The Match, asking her to donate for an anonymous young child undergoing cancer treatment.

Melissa flew to Houston for the first time to undergo a bone marrow collection under anesthesia from the back of her pelvic bone. “I figured since I’ve had four kids naturally, it wasn’t going to hurt,” she said. “Bone marrow donation is not something you recover from immediately, but I’d do it again.”

Her willingness to help was tested again last week, when she received a request to help the same child by donating peripheral blood stem cells to jumpstart bone marrow production. “I got an email saying the child was in the hospital, relapsed, and needed my help right away,” she said.

The only thing in her way? An unprecedented tropical storm.

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When natural disasters like Hurricane Harvey strike, local hospitals rely on organizations like Bloodworks to meet the demand for blood components. What many people don’t realize is the shipments aren’t just for trauma patients. Many of the Northwest-donated pints help fill the gap left when donors in the disaster area can’t reach their nearest donation center or mobile drive.

And when precious resources like stem cells can’t be flown out, sometimes donors are flown in.

On Monday, Bloodworks—a partner with Be The Match program as a stem cell donation center, received a call to see if they could help Melissa complete her donation. Peripheral blood stem cells are donated through a process called apheresis: a machine draws blood from one arm, extracts the cells it needs, and returns the remaining blood components back to the donor—much like donating plasma or platelets.

Bloodworks’ apheresis staff responded with an emphatic “Yes!” In a heroic effort, the team completed what is usually three weeks of paperwork in just one day, clearing the runway for Melissa’s donation.

Melissa completed her donation at Bloodworks yesterday morning. It packaged and shipped on a red-eye flight last night. And today, it was received by the hospital treating the child in need.

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When Melissa’s children asked her why she goes to such great lengths to help someone she doesn’t know, her answer was simple and heartfelt.

“I said, ‘If you were sick like that, I would appreciate anyone who would do the same thing for you.’”

Despite tragedies like Hurricane Harvey, Melissa says donors—and opportunities to donate—give her hope.

“Just like down in Houston, how everyone’s helping each other,” she said. “I like to think of it as, humanity’s not lost. In spite of everything that’s going on in this world right now, if more people realized we could help each other just be human, it would make the world a better place.”

Reading Hurricane Harvey headlines, but not sure how to help? Bloodworks sent emergency blood shipments to Houston and Dallas. Help us restore our inventory and prepare to support communities in need: register to give blood today.

Meet a Blood Donation All-Star

August 24, 2017 at 1:47 pm

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John-Paul Europa likes to joke about his sports aptitude as a kid.

“I won the ‘Most Inspirational’ award many times as a youth, which is code for ‘Hey, you’re not that good…but you try as hard or harder than anyone else,'” he said with a laugh.

Despite often landing on the bench, he loved being on a team. And though he didn’t know it then, his enthusiasm for sports prepared him to save countless lives as a blood donor, collector and administrator.

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It started with a high school sports medicine class. “It was a great opportunity to start learning about the healthcare industry and get experience,” he said. “I found myself on the bench during sporting events, but I thought, ‘Hey, I have a purpose here.'”

The class also regularly organized blood drives which, John-Paul admitted, were a great way to get out of school. “It was easy for me to sign up and donate blood, and miss class and have a good reason to do it,” he said.

The blood donation habit stuck. As a student at the University of Washington, John-Paul donated regularly. To date, John-Paul has made 98 lifetime donations of whole blood and platelets.

Platelet Machine

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At UW, John-Paul knew he was interested in a healthcare career, but didn’t know which path to take. Drawing on his sports medicine experience, physical therapy seemed like a natural fit. That is, until a new field caught John-Paul’s eye. “I interned as an athletic trainer for two years and was exposed to UW’s nursing school,” he said.

A seed was planted. John-Paul graduated with a degree in psychology and set his sight on becoming a nurse.

His first job out of college was a step in the right direction: he became a Bloodworks Northwest phlebotomist, and collected blood at mobile drives. John-Paul remembers particularly enjoying working with blood donors and volunteers. “We make the experience for the donor as simple as possible to alleviate the stress and first time nerves of donating blood,” he said.

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John-Paul went on to earn a formal nursing degree and landed a pediatric oncology nursing job at Seattle Children’s. “It was a difficult but very rewarding experience,” he recalled. “It was a daily reminder of the importance of blood donation, not only having experienced donating and collecting the blood, but seeing the process of how to administer the blood safely and the young patients being helped.”

Today, John-Paul works as a registered nurse for Northwest Kidney Centers where blood transfusions are vital for many dialysis patients. Looking back, he said his experiences have given him a greater appreciation for the blood collection process and our generous community of blood donors. “It’s an elaborate process to make sure that patients get blood safely,” he said. “We can’t do any of this without the donor.”

No matter which part of the blood donation process you support, take it from John-Paul: we’re all on the same lifesaving team.

Want to be a blood donation MVP? During the summer months, local patients need your blood more than ever. Register to give today. 

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