The story of a Bainbridge Island woman, LinMara Bluebird, who says, "Bloodworks Northwest saved my life." Bluebird was diagnosed with a rare form of hemophilia. World class doctors at the Washington Center for Bleeding Disorders say her case was one in a million.
This episode sponsored by USI Insurance and Swedish.
The story of a Bainbridge Island woman, LinMara Bluebird, who says, "Bloodworks Northwest saved my life." Bluebird was diagnosed with a rare form of hemophilia. World class doctors at the Washington Center for Bleeding Disorders say her case was one in a million.
This episode sponsored by USI Insurance and Swedish.
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this edition of Blood Works. One No. One is sponsored by US. I Insurance service is harnessing the power of one advantage. Visit us i dot com to learn more, but bricks one No. One is also sponsored by Swedish. Visit Swedish dot org's slash health for good.
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Oh, I had no idea. I had no idea. I had no idea how. Certificates this
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waas Hi, I'm John Yeager and this is Blood Works 101 It's a monthly podcast produced by Blood Work's Northwest Seattle based nonprofit, providing blood and blood products almost 100 hospitals across the Pacific Northwest. Today you're going to meet a woman named Lynn Mar a Bluebird in one of the people who helped save her life. I'll never forget the day I first met Lynn Mara Bluebird. That's the name you don't easily forget. But this is not a story about a name. It was the Pride Parade in June 2019. Like everyone else in the parade at the Blood Work's Northwest float, when Mara Bloomberg was wearing a blood work's Northwest T shirt, she was in good spirits, everybody waas. It was a day of unity and happiness, and I remember the sun was shining, but that's not what struck me that day. It was the sign that Len Mara Blueberry held it. Read B W N W Blood Work's Northwest saved my life. She walked everywhere with it. So this is the story of why she held it
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well, I have learned to be more careful about my health.
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That lesson started a year and 1/2 ago. On a cold January morning, Len Mara Bluebeard thought she just pulled a muscle
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and I woke up that morning. It was Friday and I fainted and I had a pain in my right leg. I didn't give it too much thought, and by Monday I noticed that my leg was bruising and waas getting swollen. Um, I I swim, so I felt like I couldn't walk. I was getting kind of winded. So I went swimming all week and I was very winded and I still thought, Oh, I probably pulled a hamstring.
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But when she went to get it checked out, her doctor took one look at landmark his leg and said, I
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have never seen a leg that looks like that. It was blue was bruised. It was painful and said, Let's I should take you to the emergency room. But let us do some blood work. She did. Took some blood. This was Friday afternoon around five o'clock. She was going on vacation the next week. It was a holiday weekend. Um, so I got a phone call at nine o'clock Friday night. Uh, you need to get to the emergency room. Um, this is looking serious.
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Len Mara and her partner live on Bainbridge Island. They went to the closest hospital Harrison in Bremerton. They
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admitted me. Um, I was in their most of the night. I was in some pain, couldn't get comfortable. They took some blood.
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She didn't know what to expect.
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Oh, I had no idea. I had no idea. I had no idea how serious this waas,
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but soon she would. The diagnosis sounded scary.
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I was diagnosed with acquired hemophilia. A so acquired means not genetic comes out of the blue, a healthy person. And all of a sudden I have internal bleeding. And my clotting factor eight was not working when they said you have hemophilia thinking Where did that come from? But acquired hemophilia is basically like many other clotting factors. One in a 1,000,000
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according to the Centers for Disease Control and Prevention. Hemophilia is usually an inherited bleeding disorder in which the blood does not clot properly. This can lead to spontaneous bleeding as well as bleeding following injuries or surgery. Blood contains many proteins, called clotting factors that could help stop bleeding. People with hemophilia have low levels of either Factor eight or factor nine. The severity of hemophilia that a person has is determined by the amount of factor in the blood. The lower the amount of the factor, the more likely it is that bleeding will occur, which can lead to serious health problems. In rare cases, like Lynn Maheras, a person can develop hemophilia later in life. Now, what with Saturday morning and the doctor at Harrison, Tony Roberts from Poulsbo, told her over the phone that she could see her.
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But, she said, I think you should see Rebecca Cruz. Jared is in Seattle Blood work's northwest. I live on Bay Bridge. Um, I have to take a ferry over to Seattle. Uh, but I wanted to go to the best. If she's the one who does research, she knows about the factors. Well, that's where I'm going to go. So I came into Seattle on Tuesday morning and saw her. She agreed. I have acquired hemophilia A and, uh, said I know what we are going to D'oh. She put me on prednisone at 40 milligrams
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and a medication typically used on cancer patients called cyclophosphamide.
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But she said the two of them work well together, and I also needed a medication called No boasts seven, which is an injectable medication. It's like an emergency, uh, medication. If I was given Factor eight because I'm losing my factory, it's not working. My body would reject it. It's a This is an auto immune disorder. So my body is fighting factor eight, and, um, so they can't give me factor. Eight. Uh, so Novo seven is a factor seven. That appears to your body to work. And, um so I needed in two injections of that, and over the course of I'd say a month and 1/2 I needed to have that done four times.
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This rare combination of life saving drugs began to make a difference,
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So this medication, by the way, is not available anywhere but at a blood center that hasn't the hospitals don't have it, so they had to order it from blood work's northwest. This was been Friday night, so I had to go home with some two doses and put them in my refrigerator. So whenever it was needed, like when the fire Department needed to give me one dose when I had another bleed, uh, they had to call Rebecca. She had to talk to them. And then they administered it because I had it in my refrigerator
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and this was expensive. Medicine
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dose was $10,000. Eventually, I had to have, uh, eight doses, and I had to in my refrigerator that I had paid for.
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And yes, if you were wondering, Bluebeard had health insurance.
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Uh, Medicare paid everything.
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Even with all that you went through land Mara Bluebird still considers herself incredibly incredibly lucky. Lucky because she had insurance, but also because of the world class expert in blood disorders. Here about to meet. That's coming up. Next one. Blood works 101 continues this edition of blood works. One no one is sponsored by us. I insurance service is harnessing the power of one advantage. Visit us. I dot com to learn more. Broderick Swan No. One is also sponsored by Swedish. Visit Swedish dot org's slash health for good Welcome back. The blood work's wanna one I'm your host. John Jaeger. Dr. Rebecca Cruise Jaros at the Washington Center for Bleeding Disorders says something like a choir hemophilia that Hitler and Mara from out of the blue is usually not picked up very frequently.
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People usually think it's a pulled muscle. It's an injury that seems to be maybe having some bruising and swelling over the top. But nobody thinks about a bleeding disorder because these people are born normal. They don't have a bleeding disorder to begin with, and that's not on their radar. Acquire Team Affiliate A is a bleeding disorder that is caused by our body making an auto antibodies, so an antibody against something in our body that they shouldn't. So it's an auto immune disease,
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and Rebecca says it's very, very rare
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happens one in a 1,000,000 sometimes it's associate ID with people who have other autoimmune conditions, such as some thyroid disease, Um, some other rheumatoid arthritis, things like that,
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and Cruz Jars says it can literally come out of nowhere
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because it's not while recognized, because these people are not born with it. So they're not gonna come to you and say I have a bleeding disorder. They come with abnormal bleeding that a lot of people are not thinking that there is something going on on the blood that's causing it. For example, those this Ah, uh uh, patient behind in eastern Washington that I got called on this lady presented with swelling in her arm. That turned out to be what we call compartment syndrome. Meaning there is too much pressure in a compartment in the arm, compressing the nerve in the artery and therefore not supplying blood to the fingers. At that point, you have to open up that space to release the pressure. So this happened. Nobody was really thinking what was causing that. They did what they needed to do. Emergent Lee in what's called a fashion Adami or release off the space. Um, and she was bleeding, bleeding, bleeding. And at that point, still, nobody thought about wise this lady bleeding as much as they is. She does. And they thought, Mom, maybe they nicked an artery. And that's what she's bleeding from took her back to the operating room. I could not stop the bleeding and ultimately amputated her arm, but just something that maybe could have been prevented if he would have known that she had acquired hemophilia to begin this.
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So what did she prescribe for Len Mara? Bluebeard, Given all she'd been through
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for Len Mara, the treatment for acquired hemophilia is twofold. One of thumb. We need to stop the bleeding because we don't We didn't want her to develop this compartment syndrome, so we needed to give her something to stop the bleeding. You can't give Regular Factor eight because we have this antibody against it. So that's not something that's going to be working. So we'll be used, is what we call a bypassing agent, and that might be a factor. Seven. Or there is another factor. Concentrate that's called a pro from and complex concentrating are a couple of other treatments to kind of circumvent this this antibody to stop the bleeding, and the other thing you need to do is to get rid off that antibodies so that this disease state really goes away.
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Cruise Joris admits her center is a magnet for cases like this because she's published in the field and she's well known for her work with acquired hemophilia.
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Hopefully, I will get these calls on. Hopefully anybody who reads or hears this will call us. It's a very, very complex condition to treat because this SS ed happens in elderly people. The older we get, the more prone we are two clotting as well. So this is a bleeding disorder that comes out of nowhere in a patient that potentially is also a risk for clotting. So really needs a lot of expertise to handle those patients.
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What does she want people to know?
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I want them to know that if there's even the slightest question about having a patient like that, we can be reached 24 7 We have a consultation service to patients on dhe, to providers to your physician's to anybody so they can reach us and say, I'm experiencing these symptoms or I have a patient that has X Y Z cannot run this case by you so we can bring the expertise to them. A Sinise possible.
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As of July 2018 Len Mara Bluebird was in remission,
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and the remission means that your body is sustaining that without any medication, I have to remind myself that I have this disease that I will always have. Um, I can be in remission, but it's always in the back of my mind. And now I'm I've been having blood draws every three months, has gone from three times a week, toe once a week, toe once a month. And she said, If this last blood draws as good as they've been that I don't even need to come in anymore.
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The funny thing is, before all this happened, when Mara Bluebird was a regular devoted blood donor. Now, because of the hemophilia, strict FDA regulations do not allow her to donate anymore, ever. But she still find a way to give.
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Are you here to donate today? It's
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AM come by the blood work's Northwest Central Donation Center on Seattle's first Hill. You just might notice the person at the desk when you check in. And do
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you have an appointment? Yes, OK, great.
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So, Len Mara Bluebeard, the lady with the sign, has two messages she'd like you to keep in mind. One of them, she mentions, to make you think it can happen to anyone and the other. Well, remember the message that was written on the sign she held that day. Blood Work's Northwest Saved my Life. Washington Center for Bleeding Disorders is located at 9 21 Terry Avenue, Seattle, Washington, 9810 for Dr Cruz, Jara says consultation is available 24 hours a day to help patients, families and physicians assess symptoms and get effective treatment like that Morris case when acute bleeding problems occur. I should also add that Len Mara told me she did eventually find a way to donate blood for research purposes. Well, that's just about it. For this episode of Blood Works one of one. If you have an idea for an upcoming show or someone we should talk to, please let us know where blood works and w dot org. But in the meantime, please share this episode with your friends for blood works 101 I'm John Yager. See you next time