Elaine Sonntag-Johnson was just 30 years old when she got her fatal diagnosis. “Your blood is weird,” her OB-GYN has said; she’d gone to see her when she’d been struggling to get pregnant with her husband Daniel and she’d run a panel of blood tests. She was loving her new career in social work, blissfully married, and eager to start a family. When she was referred to see specialist Dr. Douglas Lee, those blood tests in hand, Elaine got news that threatened everything.
“I know what you have,” Dr. Lee said, “but I’ve never one.” What followed was a long jumble of consonants and vowels that would change her life forever, teach her about resilience and hope, and make her the single highest recipient of blood transfusions in all of King County, WA’s history – over 1,000.
The diagnosis was paroxysmal nocturnal hemoglobinuria (PNH), a non-hereditary blood disorder that affects one per every two million people. PNH is characterized by a destruction of red blood cells blood clots, and impaired bone marrow function which meant her body wasn’t able to make enough of the three critical blood components for her to survive. Elaine poured herself into research about the disease, but what she found was grim.
Asymptomatic” didn’t last long. Soon after her diagnosis, her Elaine’s white cell, red cell, and platelet counts “tanked” and she was routinely admitted to the hospital. That began an 18-year stretch when she received a red blood cell transfusion every month and platelets every five days until, somehow, her platelet function was restored.
Despite her poor health, Elaine remained determined to become a mother. But when she and Daniel approached various adoption agencies, they were declined due to her curtailed life expectancy. They were heartbroken, but Dr. Lee must have known he had a medical outlier on his hands. “So we talked to Dr. Lee and the three of us sat around and cried,” she said. “I told him, ‘I need a letter that says that I’m likely to survive for 18 years.’ And we all knew that wasn’t true. There was nothing in the literatures that said that, but he wrote that letter. And we adopted two kids who are now 23 and 27.”
“I have been shockingly lucky in every way, except for getting sick,” Elaine said. One of her biggest breaks was the development several years ago of a monoclonal antibody treatment for PNH patients that restored her white blood cell production. Elaine was a participant in both the first- and second-generation studies and now, “I hardly ever need blood; I only need it really if I get a fever or something.”
Having successfully obliterated that three- to five-year life expectancy she was given on the day of her diagnosis, Elaine has found a community of PNH patients online. “I’m kind of the ‘Grande Dame’ of this Facebook group because I’m one of the people who has lived the longest with this.”
That hope, for Elaine, might be hereditary. “My dad escaped from Nazi Germany in 1936 to Brazil; there were a lot of Jewish people who got there because they couldn’t go anywhere else. And my mother’s a Russian Jew, they ended up in Brazil and that’s where I was born. My dad was full of joy; he loved music and he worked till he was 70. So I just have good models for, well, just go ahead and do what you can.
Today, Elaine lives a mostly normal life. She can’t work anymore due to pain from an intestinal clot, but she walks her dog and enjoys life with Daniel and two grown children. “If I feel sorry for myself for a second,” she said, “I feel like this is the worst place I can be. I have to go do something and help somebody because that is not a good place to be.”
And what does Elaine Sonntag-Johnson, 31-year-and-counting defier of a disease unmatched by her courage have to say to the blood donors who gave her the life she treasures today? As it turns out, a lot:
Bloodworks Northwest Joins Blood Emergency Readiness Corps
On May 1,Bloodworks Northwest joined 30 blood centers across the nation to form the Blood Emergency Readiness Corps (BERC), a first-in-the-nation partnership among community blood centers around the country to ensure blood availability whenever and wherever disaster strikes.
Bloodworks’ joining BERC means (1) that local donors can directly help when mass casualty events like natural disasters or mass shootings occur elsewhere in the United States, and (2) that when needs in our community exceed our local supply, other blood centers will be prepared to quickly transport blood to our region.
Bloodworks Northwest is the sole provider of blood to more than 95% of the hospitals in Western Washington and Oregon. As part of the BERC partnership, Bloodworks commits to storing extra units – approximately 15 units of O negative and O positive blood – on a rotating “on call” schedule to be available for BERC members for immediate emergency need.
Bloodworks will be on call for seven days during a three-week rotating schedule beginning in June. If the units are not used, the units will be put back into the local inventory for distribution.
“Bloodworks Northwest stands ready to assist other blood centers if called upon to provide emergency shipments to help communities in need near and far,” said Curt Bailey, President and CEO of Bloodworks Northwest. “This underscores the importance of having a strong inventory of blood available at all times in order to respond immediately when natural or man-made disasters happen in our local community and beyond.”
However, with regional blood supplies hovering around a 1-2 day supply, would there be enough locally- sourced blood if the Pacific Northwest was faced with its own mass casualty event?
“Our community is running dangerously low on the platelets and Type O blood needed to supply local hospitals, and straining our ability to provide transfusions for every cancer and surgery patient who need them,” said Bailey.
“If a mass trauma event were to happen today, we would not have enough blood available to help everyone who needs it. It is vital people donate blood to support everyday needs of patients as well as unforeseen emergencies.”
Curt Bailey, Bloodworks Northwest President and CEO
Before BERC, community blood centers facing a mass need event have relied on the goodwill of other blood centers to send additional units, which is sometimes limited or uncertain. With the country experiencing an ongoing nationwide blood shortage, creating an emergency blood reserve allows Bloodworks and other BERC members to know exactly how much extra blood they can count on.
To date, the program activated to support a mass shooting at a grocery store near Memphis, TN, a mass shooting at a school near Detroit, MI, and a mass casualty event brought about by a series of tornadoes throughout the Midwest. The recent shootings last weekend in Buffalo, Texas, and California highlight the need and effectiveness of an emergency reserve system.
In Washington and Oregon, 1,000 donors per day are needed to keep the blood supply at a safe and reliable level, since every two seconds, someone in our region needs blood. It does not take much for the supply to drop: one snowstorm, one tragedy, one heatwave can send it back to an unsafe level.
To donate blood, schedule an appointment at Bloodworksnw.org or 800-398-7888. Same day appointments are available. There is an especially high need for donors heading into Memorial Day.
About BERC: The Blood Emergency Readiness Corps was founded in 2021 to meet the immediate transfusion needs of hospitals and their patients when faced with a large-scale emergency situation that requires blood transfusions. To learn more and see a list of participating blood centers, visit bloodemergencyreadinesscorps.org.
To learn more about how blood emergencies on the ground at Bloodworks, listen to this episode of our podcast, Bloodworks 101, with Bloodworks Executive Vice President of Blood Services Vicki Finson titled “We Weren’t Going to Be Able to Help Them.”
“From the Heart, to the Heart,” Chef Thierry Rautureau (S3 E23)
French-born Chef Thierry Rautureau has been a pillar of the Seattle culinary for decades as the visionary of such seminal restaurants as Rover’s Loulay, and Luc. When we approached him to join our Culinary Coalition in support of blood donation, he eagerly agreed and said in his interview with Bill Harper, “without blood, there is no life.” Well said, Chef. À table!
Chef Rautureau: Well, here we go. It’s Sunday morning. Guess what? I couldn’t find anything better to do than going to give my blood. Why? There is such a high need. Come on. It’s free. It’s simple. Those guys are super nice, welcoming, and it takes five minutes to do. Just do it.
[foreign language 00:00:21-00:00:40] .
Bill Harper: Hi. I’m Bill Harper, and this is Bloodworks 101, an Anthem Award-winning podcast from the Pacific Northwest Primary Blood Center that’s designed to inspire you to donate time, money, or blood. Bloodworks is currently hosting a region-wide campaign to partner with the Pacific Northwest’s best chefs, brewmasters, and purveyors of delicious delicacies to inspire 10,000 new donors by June 30th.
We’re calling it “Savor Life, Save a Life,” and it is magnifique. And one of those chefs is Thierry Rautureau, the French-born James Beard Award-winning chef of such Seattle culinary institutions as Rovers, Loulay, and Luc. Known as “The Chef in the Hat,” he’s one of my personal heroes. And on a gray March Sunday, he came in to donate blood. And I sat down to ask him about his life, why food is like blood, and why now, of all times, he’s asking food lovers everywhere to donate blood. [foreign language 00:01:35] .
Chef Rautureau: And, you know, it’s like restaurants are just like anything [inaudible 00:01:42] . If it’s really good and really small, the guy at the helm eventually has to quit.
Bill Harper: Yeah. That’s…
Chef Rautureau: Nobody lives forever.
Bill Harper: Yeah.
Chef Rautureau: So it brings me back to the next subject. Nobody lives forever; however, in order to live, you gotta eat, you gotta drink, and you most definitely have to donate blood because your good blood is good for someone else as well. And it’s so painless to do it, so simple. Just need to take the time. Make the appointment. Come and visit. In 30 minutes, you’re in and out.
Bill Harper: [foreign language 00:02:18-00:02:57] .
Chef Rautureau: And in the middle of all this, you speak perfect French.
Bill Harper: [foreign language 00:02:59] .
Chef Rautureau: How does that work? How does that work? To translate what he just said, if anybody needs translation, he says reading the white lines on the bottom of the screen he was just mentioning how he had leukemia a few years ago. And you know what? That’s what saved your life.
Bill Harper: [foreign language 00:03:18] .
Chef Rautureau: All that blood collected from people donating, and it’s so easy. You can save one’s life so easily. One pint, one life. By the way, how you doing today?
Bill Harper: Great. Perfect. No problems at all.
Chef Rautureau: Wow.
Bill Harper: Just had recent surgery. So that’s why the crutches, but I had a stem cell transplant from a girl from Oklahoma, saved my life. And I got 267 transfusions of blood from Bloodworks. I was a patient at Seattle Children’s for eight years. And physicians there, they couldn’t have done the work that they did for me in chemotherapy and surgeries without the blood from Bloodworks. And so…
Chef Rautureau: 267 pints.
Bill Harper: Yeah.
Chef Rautureau: That’s 267 donation.
Bill Harper: Yeah.
Chef Rautureau: That’s so little to save one’s life.
Bill Harper: Yeah. This is…
Chef Rautureau: But it’s a miracle. I mean, you look like nothing has ever happened.
Bill Harper: Yeah. I mean, it’s just it’s so great to come back here and see people. And…
Chef Rautureau: No. Of course. Of course.
Bill Harper: Yeah.
Chef Rautureau: It’s like a family.
Bill Harper: Yeah.
Chef Rautureau: [crosstalk 00:04:11] .
Bill Harper: It’s good just to know that, you know, like, when I was in those hospital beds at Children’s, like, there are people out there coming in, taking their Sunday morning, Sunday afternoons, and taking time to save my life without even knowing my name or anything about me. So when was the last time you donated blood?
Chef Rautureau: I donated blood when I was 17 years old in France.
Bill Harper: [inaudible 00:04:31] .
Chef Rautureau: So that was… It was a long time ago. Let me see. Seventeen, you know, in ’62. So you do the math.
Bill Harper: So we came to you. Now, what’s the “Savor Life, Save a Life” campaign? And so what’s really driving you to want to be involved in this program, be involved with us? What? Like, why now?
Chef Rautureau: Well, as mentioned before, you know, when we had the [inaudible 00:04:53] the restaurant industry is one of those industry for some reason you hear “I need,” and somehow they show up.
Bill Harper: Mm-hmm. Yeah. [crosstalk 00:05:03] .
Chef Rautureau: I mean, at the worst of day, broken down, you still show up. Why? Just because it doesn’t… I think one of the main reason is it doesn’t involve cash. It only involves time, and it involves spirit. And it involve belief in the community. It involve, you know, believing in the support of each other. Today, I’m healthy, and I’m joyful. You might be broken and hurting. You know, and that’s just the way life goes. Not everybody is all at once up, and not everybody’s down at one time. So when you’re up, you have to think of the people who are down because, just so because, tomorrow it could be you. You know, you don’t donate anything in life. That’s what donating means. It means you’re not thinking, “I’m gonna need it.” You’re thinking, “They need it.” Right? That’s what the word “donate” mean. “Donate” doesn’t mean you’re thinking, “What am I gonna get back for it?” That’s business. That has nothing to do with donation. Donation is when your heart says, “That’s the right thing to do for the people that needs it.” So you donate without thinking because you can. That’s all there is to it, not, “I have money so I can buy anything I want” because you can. That’s a different story. This one is donation. It’s from the heart, goes straight to the heart.
Bill Harper: Yeah. Donating blood is literally a gift from the heart.
Chef Rautureau: Yeah. Absolutely.
Bill Harper: [foreign language 00:06:31] .
Chef Rautureau: From the heart to the heart. I mean, from one heart to another. It’s like a little love story.
Bill Harper: It is a love story.
Chef Rautureau: Probably is love of life, for sure.
Bill Harper: Absolutely. Yeah. So how did Chef Rautureau from a small town in France who came to America on a newspaper ad with $14 in his pocket end up in Seattle?
Chef Rautureau: Started with 14 bucks in my pocket and never looked back. I was in Los Angeles for five years and then came to Seattle to see that same buddy had moved back up to Seattle with his wife, Caroline, and so went to visit Cyril and Caroline in Seattle and went to this place called Rover’s, had just got the little review in the LA Time. And little house converted into a restaurant, very small, 24 seats. Went into there. So bought the restaurant with a partner, and two years later, I bought my partner and never looked back. Been flying solo ever since, and it’s been an incredible career. You know, in the last two year… No, not two years. In the last six months, and I have no restaurant left. You know, been working, and just the paperwork needs to be wrapped up and all that. But in general, I don’t have to go to restaurant every day. And I start looking back a little bit, which I never done in my entire life. It’s a bit weird and scary to see how much one can do in a lifetime. That’s a lot of blood, as they say. You know, it’s like lot of sweat, lots of tears, and lots of blood is given into that life. I feel like I’ve already worked two lifetimes since 14 years old. You know, the average day is such a long day. It’s like I’m 62. So at 61, I worked from 14 to 61. I’m like, “Yeah. In terms of hours, that’s definitely two lifetime of work.”
Bill Harper: Yeah. Well, yeah. That summer that I was working in that French restaurant, it was 18-hour days 6 days a week. Yeah.
Chef Rautureau: And it’s not a joke. I was 14 years old. I was skinny like a green bean, like a small kid. I wasn’t tall. I was short on top of it. So that doesn’t help, but, I mean, I would work 7:30 in the morning. You would come downstairs. You have your coffee, your cigarette…
Bill Harper: [inaudible 00:08:52] .
Chef Rautureau: …non-filter first thing in the morning. I mean, talking about the worst health ever. Most importantly, the heart was definitely taking a beating because you were pumping really hard all day long. But anyway, yeah. I mean, you start at 7:30 in the morning. The chef would come at quarter to eight. We had an 1897 coal stove, all beautiful porcelain and metal and, of course, iron. But every morning, we’d have to fill up the… Three times a day, we had to fill up from the pile of coal and then fill up the stove, taking the rings off, filling up the stove. I mean, looking back, I’m like, “That’s pretty cool. Looking in, absolutely horrible.”
And the chef would walk in. He was just like, oh, you wouldn’t believe this. This person was a monster, but he would walk in and be like, “What are you guys, not awake this morning?” Like, anyway, shaking all day long, smoking bad cigarettes, and eating chicken wings for dinner. You know, it’s like whatever. It’s like it was just horrible.
Bill Harper: Chef certainly has come a long way from those days, with three beautiful restaurants in Seattle winning the highest accolades in the culinary world. After the pandemic shut down his last two, what’s next for Seattle’s “Chef in the Hat”?
Chef Rautureau: I think I’m in a stage in my life where consulting, you know, doing jobs like that perfectly, I’ll use my experience to help, you know, to input into other businesses. But physically being on the line, now way. I can’t do it no more, and this is not a weak person talking. This is a smart person talking. I’ve already spent 60 years, most of my 60 years, working. Is this a goal of me to die in the kitchen? Never. I am not that guy. I wanna see the world. I want to see more of the diversification we have offering on this planet. I’m not the kind of person that just want one thing. I’m not monochromatic, I hope. I mean, I love what I do. Don’t get me wrong. It’s been my life. It’s been so fun. You know, having the chance in a lifetime to have a restaurant like Rover’s where you can just play every single day at your craft is one of the biggest wish anyone should have.
Bill Harper: [crosstalk 00:11:19] .
Chef Rautureau: I never knew this was gonna be like that, but I’m glad I walked that life. You know.
Bill Harper: You contributed to the entire food culture in the city and, I think, well, the country too. I mean that’s…
Chef Rautureau: And I’m glad I was part of that movement or part of, you know, helping or part… I don’t even know if it was any help. I think it was a… You know, restaurants are like blood. You need them. You need that blood to be part of your community. You know, it’s part of us. What would life be without a restaurant or a bar? It’d be pretty sad. I mean, it would be very sad. We saw that during COVID where you couldn’t get out of your house or you couldn’t go into public places. How much was that missed? Tremendously. It changed our entire life.
That was a very sad… I don’t think people do well without the social part of life, you know, which brings back the whole thing to what we started with. We live in a community. We are sensing each other.
You definitely need to have and donate blood because, you know, without blood there is no life.
So, you know, that great campaign that’s happening right now, “Savor Life Save a Life,” is such a great momentum because all those restaurants everyone needs to eat. And the saying is if you go out and you’re gonna go into a restaurant and you’re gonna give life to that restaurant.
The same thing is true for blood. You go to the Bloodworks, and you just donate your blood. And you save a life, and it’s such a simple, simple thing to do. Make an appointment. Show up. Give your blood. Save a life. I mean, in four steps, you just saved someone’s life. It’s very simple.
Bill Harper: Many thanks to Chef Rautureau and all the other participants in our “Savor Life Save a Life” blood donation campaign. I like what Chef said there, “from the heart to the heart,” like a [foreign language 00:13:20] or [foreign language 00:13:22] or the last blood transfusion before a child reaches remission, the best things in life really do begin in the heart. Merci beaucoup for listening, and please remember to subscribe.
I’m Bill Harper with Bloodworks 101 asking to please go to bloodworksnw.org and make an appointment to donate blood. Make that donation by June 30th, and you can enter to win a one-of-a-kind culinary experience. [foreign language 00:13:50] .
“It Takes All Types at Three Magnets Brewery” (S3 E24)
Something special is brewing at Olympia’s Three Magnets Brewery. It’s a new blood orange red IPA that’s part of a blood donation awareness campaign with Bloodworks Northwest called, “Savor Life Save a Life.” And on this edition of Bloodworks 101, producer John Yeager tells us that there’s a lot more to this special beer than ingredients like hops and barley and even the creativity of the brewers. If you want to find the heart of this story, just ask Sara Reilly, one of the co-owners at Three Magnets.
Click here to listen to this delicious episode if our Bloodworks 101 podcast and when you’re done, be sure to schedule a blood donation appointment too; you never know who’s out there counting on you for help. Below is a local news spot about the “It Takes All Types” launch, followed by a transcript of this episode.
John: One, two, three. One, two, three. One, two, three. All right, can you tell me who you are and what you do?
Sarah: My name is Sarah Reilly. My husband and I own Three Magnets Brewing Company in Olympia, Washington.
John: So why are you guys involved? Well, just give me an overview about what’s going to happen regarding Savor Life with you guys here.
Sarah: Yeah, so we were asked to join the campaign to brew a special beer for it. And we are doing that in collaboration with many different organizations, Lucky Envelope Brewing, Flatstick Pub, of course, Bloodworks, and Imperial Yeast. We’re making a blood orange IPA for it, which is kind of a [inaudible 00:00:52], I suppose.
The reason why we wanted to get involved was partially because blood transfusions helped save my father’s life. While he was going through some heart failure, he ended up with a heart transplant. And of course, blood is an imperative part of that process.
John: So could you tell me who you are and what you do?
Jim: Yeah, my name is Jim Ellsner. I’m a retired sales rep with an oil company.
John: So, Jim, tell me about what went through…well, what you went through in that period before you had to get the heart transplant, and then just bring us along for that ride, if you will.
Jim: Sure, I was working, and in January of 2011, my heart pretty much went into heart failure. And I spent a few weeks at the local hospital at Providence, working with my cardiologist and everyone there, and was slowly but surely dying.
And my cardiologist, thoughtfully, about two years prior to that, knew that, at some point, I was going to need more help than he could give. And he sent me to the University of Washington, the Northwest Heart Center. And I met with a doctor up there, Dr. Wayne Levy.
And so, I had an association with this fellow. And in January of 2011, my heart pretty much went into failure, and they did as much as they could for me in Olympia, and then sent me to the University of Washington. And within a few days up there, they ended up putting an LVAD heart pump in me, a little rotary vein pump that runs all the time. It was pretty cutting-edge stuff at the time. And in fact, our ex-vice president, Dick Cheney, had one just like that.
And so, I think I was somewhere, like, maybe in the 40s, number 44 or something like that, of the number of LVAD heart pumps they’d put in. And now they’ve done just tons of them. And as a result of that, I was on that for about 23 months, whereupon, I finally got a heart and had a heart transplant in December of 2012.
And so, as you know, during things like that, they have to put you on a heart-lung machine and transferring fluids in body, you know, blood and everything around. And so, the blood was a very big part of it, and I used a lot of it.
And so, I’ve been very grateful to, you know, the Blood Center and to the University of Washington for giving me an opportunity to live a longer, fuller life.
John: So when you see people donate blood now, it’s personal?
Jim: It’s very personal. Yeah, there’s such a demand for it now. And I guess now, especially. And I think most people just don’t realize how big a need that there is out there. Every day, there’s a huge need.
John: And what do you feel like seeing him…having him around for a few more years?
Sarah: Yeah, I mean, my dad was only 59 when he went into heart failure. I was married, but I didn’t even have children yet. Now I have a 6 and 8-year-old that have a grandfather that they would not have had if the technology wasn’t around and if the donations weren’t around. So very grateful to have him around. We did lose my mother five years ago. And so, it’d be pretty hard to have lost both parents so young. Yeah.
John: So what’s your message for people out there? I mean, I can pretty much fill in the blank. But personally, how do you want people to consider blood donation right now? What’s your message to people, in short?
Sarah: I think giving blood is something that’s very simple, doesn’t take very much time, but makes such a massive impact. People just have to remember that it’s something they need to do and try to make make it a regular basis and constantly give. And, you know, it really makes an impact, something very simple that can save a life.
John: So, as far as Three Magnets, give me an idea as far as what you guys are doing for the campaign or how we… Yeah, give me an idea of what you’re doing for the campaign.
Sarah: Yeah, the whole idea behind this campaign is to make sure that people are aware that there is not enough blood right now. It’s critical levels. And so, really, we’re just trying to get the word out. So that will be on our can, and that message will be given across at many different restaurants and pubs throughout the Pacific Northwest to just remind people that it is a dire time.
John: Is there a special brew that you guys are making?
Sarah: Yes, yeah. Blood orange IPA, along with Lucky Envelope Brewing. It seems appropriate, of course, because of blood. And then you always think of blood donations and orange juice. And, you know, just a little reminder to people and also kind of funny at the same time.
John: Is there anything else that you’d like to add that I didn’t ask? Jim, what about you?
Jim: You know, I think one of the things that’s important is for people to really think about this is, it is such a simple thing giving blood. And what most people really don’t put in their mind is that it could happen to you. Tomorrow, you could be in a car wreck.
Tomorrow, you could have a massive hemorrhage or something and need a massive amount of blood. And so, we’re all vulnerable, and it’s important to just get out there and let that little simple thing save somebody’s life, and it might be their own.
John: Thank you. Thanks, guys.
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