Jaime’s story: saved by blood and cord blood donation

March 14, 2016 at 11:18 am
Jaime Scaggs, in red, poses with other members of Team Jaime.
A friend gave Jaime this monkey on the day she was diagnosed; the friend heard the news and left it at Jaime's house for her to find when she got home. This monkey has been with Jaime through every treatment and visit to the hospital, and brought great comfort to her when she was scared and the outlook was uncertain. Jaime brought her monkey to the drive to comfort her friends and former colleagues who were nervous about donating.
This special wrap was done by Juliette for our last donor of the day- the only walk-in, and unaffiliated with the group. He just happened to come across the drive while at the Columbia Center and decided to save lives.

Jaime Scaggs had just turned 39 when what she thought was a cold turned out to be Acute Myelogenous Leukemia (AML). Jaime says,

Your life turns upside down when you hear CANCER. Everything changes for you and your family in an instant.

AML affects the body’s ability to produce red blood cells, white blood cells, or platelets. It progresses rapidly, and can spread to the brain and spinal cord, skin, and gums.

Over the next year I underwent three rounds of chemotherapy, total body irradiation, months in the hospital, hours and hours of blood and platelet transfusions, all leading to a lifesaving cord blood transplant.

The intense chemotherapy to treat the cancer destroyed Jaime’s bone marrow. She needed a stem cell transplant to replace her immune system but wasn’t able to find a compatible bone marrow donor. Fortunately, a new mom had made the decision to donate her baby’s umbilical cord blood to a public bank 12 years earlier, and this donation was a match for Jaime.

On March 14, 2014, Jaime received her lifesaving stem cell transplant.

The journey doesn’t end there.  This battle results in your body being unable to produce your own blood cells (red/white/platelets) while you recover, sometimes for years.

There were extended periods of time when I had daily transfusions.

Jaime received more than eight gallons of blood components over the course of her treatment.

Jaime and her family, friends, and co-workers (“Team Jaime”) have participated in The Leukemia & Lymphoma Society’s Big Climb at Columbia Tower in Seattle for the past three years. Just over a year after her cord blood transplant, Jaime completed the climb. She is one of the honorees at the 2016 event on March 20.

Team Jaime hosted a blood and bone marrow drive at Columbia Center on February 20 to raise awareness about the need for blood and bone marrow donors.

The drive registered 34 donors, with 15 first-time donors, and added eight potential bone marrow donors to the Be The Match registry.

Jaime is grateful for everyone who donated at the drive and the 64 people who saved her life during her treatment for AML.

This all would not have been possible without people just like you taking the time to make a difference by donating blood and platelets and the work of Bloodworks Northwest.

Jaime is proof blood donation saves lives! Schedule your next donation or learn more about organizing a blood drive.

A platelet disorder leads to bleeding: Jen’s story

February 23, 2016 at 1:00 pm

Jen

Jen Schmitt is the type of person who always puts others before herself.

Her friend Erin Nissen says,

Jen is the most giving and caring person that I have ever known. If I’m having a difficult time, she’s the first friend that I call. She remembers little things. If you say there’s a type of wine you like, before you know it, she’s sent it to you in the mail. She’s so thoughtful.

The Harborview cardiac ICU nurse started having abnormal bleeding in her urinary tract at the end of November, 2015. It wasn’t profuse, but enough to be a concern.

Jen visited the doctor multiple times and had imaging performed to try to figure out where the bleeding was coming from. The week before Christmas, her doctors put her under anesthesia to investigate with an internal scope. Ironically, that’s when the real trouble started.

Jen has a rare genetic platelet disorder called Glanzmann Thrombasthenia. When she bleeds, her platelets adhere to the site of the injury, but don’t effectively clump together to stop the bleeding. Her tissues are easily irritated, so the ordinarily harmless scope used in the procedure caused an injury.

Big blood clots formed, and clung to her bladder wall. The clots would break off, causing bleeding, spasms, and excruciating pain, which then caused more bleeding, clotting, spasms, and pain – an ongoing cycle of misery.

She was admitted to UW Medical Center on Christmas Eve.

Jen’s parents and close friends have been by Jen’s side through the entire ordeal, and can’t even count the number of platelets and red blood cell transfusions she’s received – Jen gets three or four units of platelets with every infusion of NovoSeven, a drug that helps her blood clot.

Because of her bleeding disorder, Jen has needed periodic blood transfusions throughout her life, and as a result has built up antibodies: there are only eight people in Western Washington whose blood and platelets she can receive.

It’s upsetting for Erin to watch her hilarious, generous, and generally private friend accept help from others and face the unknown – no one can tell when this ordeal will stop or what the long-term effects will be.

One comfort is that the blood is there:

It makes her teary-eyed – she can’t believe complete strangers would come in and donate their time and themselves.

Jen’s coworkers have rallied, visiting her in the hospital, bringing her snacks, and sending messages of support.

Jen-Coworkers

Harborview already hosts regular blood drives, and several of Jen’s colleagues have come forward to champion extra drives in February.

Many of her coworkers at Harborview are stepping up to donate blood and platelets in her honor, either at a drive or at our Central Seattle and Federal Way donor centers. Even though they may not be a match for Jen, they know that countless other patients in our region depend on their gifts of blood components.

Jen was finally able to be discharged on February 11th and is recovering with her parents in Olympia. She’s able to find the positive in the whole experience:

She’s always been an amazing nurse and amazing patient advocate – always trying to see things through the eyes of the patient. This has shed more light on how the patient has it in the hospital. It’s giving her greater passion for her profession as a nurse.

Jen’s coworkers at Harborview are hosting another drive in her honor on Thursday, February 25, 2016. Patients like Jen depend on your donations every day.

Hannah’s story: Living with Beta Thalassemia

October 21, 2015 at 1:17 pm

Hannah-h

21-year-old Hannah Husom is like many college students: she goes to class, works, and enjoys spending time with her family and boyfriend.

Unlike most, however, she has a rare blood disorder that requires monthly red cell transfusions.

Hannah’s mom noticed that she was jaundiced at birth; her mother’s intuition told her something was wrong. Though most newborns have some yellowing of the skin, Hannah’s didn’t go away. She was always tired, and had a very low blood count.

Doctors thought it might be hepatitis or leukemia, and it wasn’t until she was seven that a new doctor at Group Health finally diagnosed her with Beta thalassemia major, a genetic blood disorder that impacts the body’s ability to produce hemoglobin, the protein that carries oxygen, resulting in anemia.

It’s constantly being tired all the time. I can sleep for 11 hours and still be tired the next day, and then take a nap, and then be ready for bed 2 hours later.

She received her first blood transfusion when she was fifteen, and has been receiving them every four weeks at Seattle Children’s since then – she estimates that she’s received 100.

The transfusions of A+ blood make her feel better immediately.

It’s basically like taking a nap for a week. I have a lot more energy, and my moods start to get better. I feel more positive without even trying. My body temperature gets a little higher – I can almost start to feel it working immediately. My coworkers ask if I’ve been tanning the day before!

Beta thalassemia occurs most frequently in people with Mediterranean, North African, Middle Eastern, Indian, Central Asian, and Southeast Asian heritage. Because it’s a recessive genetic trait, both parents need to be carriers. Frequent blood transfusions can put patients at risk of organ-damaging levels of iron in their blood, and many become sensitized to antigens in donor blood because of the many transfusions they receive. A stem cell transplant is the only cure.

Hannah’s condition is so rare that she doesn’t know anyone else who has it, and most people she talks to have never heard of it.

I want to get the word out. A lot of people brush it off. It’s not cancer, so it’s not interesting to them. I want to have a conversation without it being uncomfortable.

Hannah is very grateful for the blood donors who allow her to live a normal life: she’s studying at Everest college in Everett to become a medical assistant, and can’t wait to be in the field to help others like she’s been helped.

I wouldn’t be here today if it weren’t for your many donors, and I will always be grateful for those who continuously donate their blood.

Everest is hosting a blood drive on October 27, and Hannah would love to see everyone who is eligible donate.

Want to help patients in our community like Hannah? Schedule your next blood donation.

Steven’s story: 40 years of hemophilia treatment

March 16, 2015 at 11:17 am

Hemo_awareSteven* was born with hemophilia in the late 1960s.

At that time, there was no treatment for joint bleeds, the most common complication of hemophilia. If he did have a bleed, his parents could only pack his joints in ice and wait for the pain and swelling to subside.

Steven recounts that his parents wrapped his knees in foam when he was learning to crawl.

Steven’s family moved to Washington State in 1976, and he began receiving care from Bloodworks Northwest (then known as Puget Sound Blood Center).  Back then, BloodworksNW was among the first in the U.S. to establish a comprehensive care center for people with bleeding disorders. Over the years that care has evolved to meet the changing needs of the bleeding disorder community.

[T]he wonderful people at the Hemophilia program are truly my go-to group for most medical concerns…from a stubbed toe to a bloody nose to a total knee replacement.

In addition to patient care, BloodworksNW developed the first practical means of producing cryoprecipitate on a large scale in order to treat patients with hemophilia, allowing them to begin to live more normal lives with the hope of better longevity as well. For Steven, this meant he could do things like play outside and go to school.

During Steven’s 40 years with BloodworksNW, the Hemophilia Care Program staff has become like a second family to him. They have prepared plans for surgeries, assisted with insurance gaps and glitches (critical for an expensive condition like hemophilia), coordinated travel (including to meet the woman who’s been his wife for the past 17 years), and provided emotional support—all in addition to tending to his bleeding disorder itself.

Today, Steven leads a happy life with his wife and their Chihuahua — he’s grown far beyond that baby with foam taped to his knees.

When asked how his life would be different without BloodworksNW, Steven says:

Plainly speaking, I would be lost… Without the confidence that I have through my medication via the Hemophilia Program at the Puget Sound Blood Center I would literally be crippled, bleeding, in pain, scared, and hopeless. Without exaggeration, I owe everything to them and the medications, resources, and compassion they provide. To answer the question bluntly – My life would be different in that I wouldn’t have one.

The road continues for BloodworksNW’s research, too. Our scientists are pursuing better, more effective treatments.  Short-term, our goals include developing personalized care plans for people with bleeding disorders to help them live free of pain, disfigurement, and disability.  Long-term, we’re working for a cure.

You are a critical part of this work.  Your support can help patients like Steven live longer, healthier lives.

*not his real name.

Bloody Fun Run on October 25

October 2, 2014 at 1:54 pm

BLOODY (2)Our Hemophilia Care Program is excited to be walking in the Bloody Fun Run, the Bleeding Disorder Foundation of Washington’s (BDFW) second annual hemophilia walk, on Saturday, October 25, 2014 at Greenlake park in Seattle. The morning promises to be fun for all ages!

The Bloody Fun Run’s goal is to raise awareness about bleeding disorders and raise funds for the BDFW for research — it not only helps children and adults in our state, but edges us closer and closer to a cure.

Bleeding disorders affect a small percentage of the population; our Hemophilia Care Program serves many kinds of bleeding disorders, including Hemophilia, von Willebrand Disease, and Platelet Disorders. People with bleeding disorders tend to bleed longer than the rest of the population, not harder or faster. Small cuts (like paper cuts) and bruises are generally not a problem, though traumatic injuries can result in life-threatening bleeds and crippling joint deformities.

We welcome you to join our team and walk with us or make a donation.

In addition to the walk, the event offers pumpkin painting, carnival games, trick-or-treating, a costume contest and more. Admission to the festival is free with a suggested donation of $25 per family.

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