A Connection between the Flu, Arthritis & Heart Disease: A Mother’s Instincts

Marie O’Donnell is Heart Mom to Anna who was born with complex, congenital heart disease. Anna is a Fontan Warrior and has been a model cardiac patient for more than a decade. Anna was born with double outlet right ventricle, complete atrioventricular canal defect, patent ductus, heterotaxy syndrome, ADHD and anxiety disorder. 

Marie O’Donnell is a return Guest. During Season 2, Marie joined Kathy Baker and Dawn Silverman in an episode entitled, “Making Memories Every Day.” Marie is a schoolteacher and has worked with the Make a Wish Foundation as a Wish Granter.

In this episode of "Heart to Heart with Anna," Marie talks with Anna about her daughter's experience after she contracted the flu. Is there a connection between heart defects, the flu, and arthritis? Tune in to hear what Marie's motherly instinct believes about her daughter's chronic illness.

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Transcript

spk_0:   0:00
Like I said one day she was fine. The next day she had the flu and she has never been the same.

spk_2:   0:12
Welcome to heart to heart. With Anna, I am Anna Gorski and the list of your program. We're in our 14th season, and we're so happy that you're with us today. I'd like to announce the new contest that will be conducted for the summer of 2019. We want to hear your stories. We want to know how an episode of heart to heart with Anna has impacted your life. We'll share your 500 to 2000 words. Story will post them on our website, and we'll let people vote for this story that touches them the most. The first place winner will get a heart to heart with an a shirt of their choice. The second place winner will get a heart to heart with Anna Tote bag and 1/3 place winner. We'll get a heart to heart with Anna Mug. See hearts unite the globe dot work for more information. Today's show features Ah, heart Mom In our episode is entitled a connection between the flu, arthritis and heart disease, a mother's instincts. Marie O'Donnell is heart mom toe Anna, who was formed with

spk_3:   1:08
complex congenital heart disease. Anna is a Fontane warrior and has been a model cardiac patient for more than a decade. Anna was born with double outlet right ventricle. Complete Atria Ventricular can now defect. Peyton Deck Tous arterial assists. Hetero Taxi Syndrome. A D H D, which is attention deficit hyperactivity disorder and anxiety disorder. Marie O'Donnell is a return guest during Season two Marie Joint, Kathy Baker and Dawn Silverman in an episode entitled Making Memories Every Day, Where is a schoolteacher and has worked with the Make a Wish Foundation as a wish grant. Er welcome back to heart to heart with Ana Marie. Hi. Thanks. Thanks for having me again.

spk_0:   1:53
So great to talk to you.

spk_3:   1:54
I know it's been a while.

spk_0:   1:56
You It has been 23 years,

spk_3:   1:59
maybe so. I was mortified. Marie, when I heard that Anna contracted the flu last year, Why don't you tell us about what happened?

spk_0:   2:07
So she had been immunized and we get her the flu shot every year. I get it through my work. My husband gets it. We always air really careful about that But for somehow she got a strand that she was not. That wasn't covered in the vaccine, so it put her out for at least two weeks. She missed school. It was bad, really bad.

spk_3:   2:28
Yeah, it's unusual for a kid to stay down that long, and Anna was a junior when this happened,

spk_0:   2:34
right? She was a junior in high school, so it's really crunch time. She's always been eyes to college, and here she was, missing two weeks of school, and then when she got back to school, even then, she was calling to be dismissed day after day because she was exhausted. She really was to the point where she couldn't get from one class to another. Some of her clashes that were spread out in the building. It was really bad. It was like he was a different kid for months. It was months before

spk_3:   3:02
Oh, my gosh. For months she would come

spk_0:   3:05
home from school early and then go right to bed and sleep through. It was really scary.

spk_3:   3:11
What did the doctors do

spk_0:   3:13
when she was first diagnosed in the pediatrician's office? They immediately had me call the cardiac office at Boston Children's to find out if she could take Tamiflu and this was crazy. I called them and the nurse on the line in the cardiac clinic. When I told her my daughter was just diagnosed with flu a the nurse goes, Oh, I was like, Lady, don't say, Oh, now you're freaking me out. What do you mean? Oh, it's like That's not what I want to hear. Yeah, but yes, In fact, it could take the Tamiflu. So we gave her the Tamiflu, which is supposed to make the symptoms not as severe, but yet, still, she was out of school for two weeks and still not bouncing back. We ended up seeing the cardiologists. Probably it was probably six or eight weeks after she had gotten the flu, and he didn't like what he saw. Her liver was enlarged, and it just kind of snowballed. She was. He started working with her medicine to try to combat the swelling of her liver and her pressure's, but nothing really touched it.

spk_3:   4:17
Ah, that's just so scary. Marie, what were you thinking as your daughter faced yet another chronic diagnosis?

spk_0:   4:26
It was hard because we had been smooth sailing for a long time, especially cardiac wise. Her Fontane she had when she was four and 1/2 and she'd been pretty problem free. Sense on. And so it's, you know, it's really worrisome and and she was acting like an 85 year old woman. So she was really struggling then to have this team, you know, she's a teenager and you want her to be able to do all the things that all her friends were doing. But she was just sleeping. She was m tired.

spk_3:   4:57
Yeah. So did you worry that maybe the upper respiratory flu symptoms were going to affect her heart?

spk_0:   5:07
Absolutely. I mean, at that point, you could see shed a lot of heavy breathing. She was showing signs of cyanosis or lifts were blue. She was really struggling, so I felt like there was definitely a connection just cause it was like a light switch from the day she, you know, the day before she had the flu, she was fine, and then she just never was better.

spk_4:   5:30
Take this hot industry. We're offering us a mechanical hot, and he said, now that I've had enough to give it to someone who's worthy. My father promised me a golden dressed twirl. It held my hand and asked me where I wanted to go. Whatever tried for conflict that we experience in our long career together was always healed by humor.

spk_5:   5:51
Heart to heart With Michael Please join us every Thursday at noon, Eastern as we talked with people from around the world who have experienced those most difficult moments

spk_2:   6:06
tonight forever by the Baby Blue Sound collective. I think what I love so much about this CD is that some of the songs were inspired by the patient's

spk_5:   6:17
many listeners will understand many of the different songs and what they've been inspired. Our new album will be available on iTunes. Amazon dot com. Spotify.

spk_2:   6:27
I love the fact that the proceeds from this CD are actually going to help those with congenital heart defects.

spk_5:   6:34
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spk_0:   6:34
HOME Tonight forever

spk_1:   6:44
You are listening to heart to heart with Anna. If you have a question or comment that you would like to dress down show, please send an email to Anna Dworsky at Anna at heart to heart with anna dot com. That's Anna at heart to heart with anna dot com Now back to heart to heart with

spk_3:   7:02
Marie. Before the break, we were talking about how Anna contracted the flu and the problems that that cause. And as if the flu wasn't bad enough, I know that Anna started to experience some other symptoms. So can you tell us about that? Sure. During

spk_0:   7:17
that time, she started complaining about her hands and her knuckles being store under her fingers. We were so focused on her breathing struggles in her cardiac struggles. That pain was secondary. And I did mention it to the cardiologists at the time. It just didn't feel like it was a burning problem at the moment because I was so concerned for her. Cardiac wise,

spk_3:   7:42
Sure, sure well and breathing. And if you're saying that she was turning blue and all of that, that seems way more concerning than some hands that are sore. So now the next thing you know Oh, we have referrals. Why don't you tell us about some of the referrals that Hannah had?

spk_0:   8:03
Absolutely. And wouldn't you know it was This was the one year my husband and I switched our insurance from a p p o N h m O. So literally I had to do all the referrals we've switched with since switch back so that I don't have to do with girls. But anyway, they referred us to a palm ologists. Ah huh, Pathologist and a rheumatologist. And they the rheumatologists was amazing. And she ended up diagnosing and with arthritis

spk_3:   8:29
remind all of our listeners. How old is Anna?

spk_0:   8:33
Anna is 18 now. At the time, he was 17.

spk_3:   8:37
17 and she's being diagnosed with arthritis. Does arthritis run in your family?

spk_0:   8:43
It doesn't. And then at that point, I started really googling like crazy, even though they tell you not to. But I kept feeling like there has to be a connection here. That has be a reason. And I did find that there is something called reactive arthritis which could come on after ah, illness. None of what I read online said flew to teenage girls. Turning teenage girls are having upright is. But again, I just kept feeling there was a link because it seemed too coincidental.

spk_3:   9:13
Rights, right, because if she had been experiencing problems with her hands before she had the flu, then you might have thought, Oh, this is just something special with Anna. But the fact that it happened concurrently, Wash is also suffering from these flu symptoms. I would think there's a connection as well.

spk_0:   9:32
The really tricky part is that now the rheumatologist has to work with the cardiologists because medication for arthritis is very complicated, as is her medication for her cardiac symptoms. So they had to get together and figure out which course of medication would be best for Anna.

spk_3:   9:53
Oh, my goodness. And you said that she also saw pulmonologist, right? Why did he have to see a pulmonologist?

spk_0:   10:01
They did a catheterization. She hadn't had one in 10 years, and they detected her pressures were too high in her Fontane pathways. So that's what led us to the lung specialist and the liver specialist because of her liver was swelling at the time as well. And so they wanted to rule out lung disease, liver disease, and what they determine was the only damage was what they would have expected from Fontana from the Fontane Pathways. So it was ah, heart issue that was causing the pressures to be high. If that makes it

spk_3:   10:39
Wow. But it seems odd that none of this came about until she had the flu.

spk_0:   10:45
Exactly like I said one day she was fine. The next day she had the flu, and she has never been the same.

spk_3:   10:52
Even now, over a year later, she still hasn't been the same.

spk_0:   10:56
She's still struggling right now. Yeah, she's using a wheelchair to go distances even now, but they do have an idea of what to do to help her. So that's good. But it's taken a year and 1/2

spk_3:   11:10
that's just so scary. Hard to

spk_0:   11:12
believe and where I Boston Children's. So we're at one of the top heart centers, her cardiologists. It doesn't get better than him, and he has said to us time and time again. I just don't know what's going on.

spk_3:   11:24
Dr. Marx has been on heart to heart with Anna before, and I just think he's fabulous and he's world renowned. People know about him all over. So yes, she's had excellent care. Well, if he doesn't know what's going on, then I'm sure he's reaching out to other cardiologists and other places, too. Do you know if there are other parents who are also experiencing a heart child having the flu with such severe consequences?

spk_0:   11:56
I don't That's a great question I could probably find that out in the Facebook groups that I'm part of. Of course, it might scare the poor people that are afraid to take their heart babies out in public.

spk_3:   12:06
I I know. I do worry sometimes. I know you know what, Murray? This is what scared may about having Alex in school. And this was one of the reasons I was so happy. I was Ah, homeschool, mom. Because during flu season, we didn't know out that much. We just stayed away from the crowds because even though we got the flu shot just like you did, this is a perfect example of how you can get the flu shot, But it does not cover every single strain of the flu.

spk_0:   12:36
It's so true. But I do remember Dr Marx telling us when she was teeny tiny, live a life, live your life. You have to live your life. Homeschooling wasn't an option for me, and it was unfortunate. It really is. She's still struggling with the arthritis. There's no cure per se for arthritis, but you can go into remission.

spk_3:   12:56
Oh, I didn't know that I have a friend who has rheumatoid arthritis and her hands definitely seem worse affected at certain times, like if it's real rainy. If it's cold and rainy, especially, we don't have a whole lot of rain in Central Texas where I live. So that's not usually a problem in the cold. Rain is only in the winter, so she's actually from ST Thomas. And in the winter, when she goes back to ST Thomas, maybe there's a solution wave in New Hampshire. So yeah, no,

spk_0:   13:30
that's not gonna work for us. Our life is a caption.

spk_3:   13:34
So did she notice that during the wintertime it did affect her more severely?

spk_0:   13:40
Oh, absolutely, absolutely. She has days that it's awful part of what she's being treated with now for the arthritis is a biologic. So it's an infusion once a month and she can feel at Week three, she feels it's starting to bother her again, and she looks forward. She looks forward to these five or six hour infusions sessions because she knows she's going to get relief. It really I can't tell you. It's really a bummer, because she did not need another thing. Really.

spk_3:   14:14
No, she did it,

spk_0:   14:16
and she went through her senior year feeling fatigued and breathless and sore. It was a rough year, but she did it. So now we celebrate her persistence and her accomplishment. I

spk_3:   14:29
know I saw her in her cap and gown on Facebook and I was like, You goanna?

spk_0:   14:35
Yes, exactly. We were. So yeah, I know that we were very celebratory, that graduation, and people may have thought I was a crazy person, but I earned it.

spk_3:   14:46
I don't think you're crazy. I think any time your kid graduates from high school that's an accomplishment. But any time one of our kids who is dealing with chronic illness is able to persevere through those chronic illness diagnoses, I mean especially the poor kid had a catheterization thes infusions. She had a lot going on for those kids to make it. Wow.

spk_0:   15:11
Yeah, her school was amazing. And actually, at graduation, her principal mentioned her not by name, but mentioned his opening speech was for some of you graduates, this was easy. And for others, you faced some really serious medical challenges and you're still here and we see you when we're proud of you. That was a really special moment for us because we knew he was talking to her.

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spk_2:   16:50
Marie and this segment, I really want to talk to you about trusting your mother's instincts.

spk_3:   16:55
But before we get there, I just want to say how cool those photos were of Anna in her cap again. And you have to tell everybody what she put on her cap because that was so cool. Yeah,

spk_0:   17:08
I love this tradition that started about the kids decorating their caps for graduation. I missed out when I graduated. She took a long time to figure out what's perfect to be on there. So what she put on there the message was, the ups and the downs were worth it was the message in shit. Yes, she created an AM Atomic Lee correct heart in glitz. Scrap it, glittery scalps rep of paper. And then she made an E k g lined as the up and down to signify the ups and the downs. So, yeah, we were really excited about that.

spk_3:   17:42
When I saw that on Facebook, it gave me chills. Yeah, she was clever. She's a plate of brought tears to my eyes because I knew she'd been through so much. And I thought what we had I'm so she has really been through so much. And what a great accomplishment for her to make it to graduation, and I'm sure you'll tell us later whether or not she's going to college or if she has a job or what she's gonna do. We'll talk about that in a little bit, but right now what I really want to talk about is you trusting your mom's instincts because a lot of times I think we doubt ourselves. But you knew when your gut that something was wrong, talk to us about that.

spk_0:   18:23
It was nagging and she, you know, I was getting text messages from Anna at her school. She would text me about being exhausted and how she had to sit down in the hallway to take a break before she continued. And I come home and she'd be asleep in this. You know, I just knew this wasn't typical teenage behavior, and I wanna

spk_3:   18:41
wear it right.

spk_0:   18:43
It was just really worried something. You know what's interesting. Ever since she's been young, I am the person that is calm, cool, collected and I shelved all my emotions so that I can be focused and then later they hit me. I've always been worried about some little thing was going to cause a big problem for her. You know, like we have all the big things covered because we have the smartest doctors ever. It always worried me that something small was gonna take her down. And so in this, in some ways, this flu was my biggest nightmare come true. Yeah, I just kept listening to her, kept calling the doctors and kept bringing her in to see them, which just didn't stop. We persisted. Really?

spk_3:   19:24
That's what I love about you is that you are such a strong advocate. So what was the most frustrating experience since enter contracted the flu?

spk_0:   19:34
So one difficult thing with Anna's history is that she has in the past, it had anxiety. Take physical forms beyond butterflies in your belly. When you're nervous, there's always a factor about it. Could just be anxiety, causing her heart to race her to be breathless, her to be fatigued, Or is it these cardiac symptoms that they were able to detect? So what was so frustrating was that we had to continue to remind ourselves of the physicals symptoms we could see. Her liver was enlarging. She was blowing up retaining fluid. She gained £25 in two months.

spk_3:   20:14
Oh, my gosh,

spk_0:   20:16
you blew up Eventually put her on a restricted diet and restricted fluids to combat the water retention. And they kept up in her diary ticks throughout the last year.

spk_3:   20:31
Did it help?

spk_0:   20:33
Yes, it has helped some. It's helped new kind of keep the fluid at bay, but it hasn't changed her status so much. She's still very bloated, so that hasn't gone away. And they're keeping her on this restrictions. And it's, you know, that's not easy. She's restricted to

spk_3:   20:52
oil, especially for a teenager,

spk_0:   20:55
right? 40 ounces of fluid on Lee. Eight ounces of water. Ah, today say, think about that. That's crazy, right? Like

spk_3:   21:05
that is crazy.

spk_0:   21:06
She's really remarkable. She's doing it the best you can.

spk_3:   21:11
That's extremely restrictive. So issue thirsty all the time,

spk_0:   21:15
all the time. She's dry, dry ger. Her skin is dry. She's dry, dry, dry because then she's also on on elephants. Dose of diuretics as

spk_3:   21:24
well. There's something else going on here. Marie.

spk_0:   21:29
Yeah, they believe they know what's causing the problem. They don't know how to fix it.

spk_3:   21:37
It's just so frustrating. That is so frustrating. Well, what do you wish that you had known then last year, when she was first diagnosed that you know now I don't

spk_0:   21:49
know. It's always those lessons of which I have spent more time appreciating the fun times that we had together. Had I known that the year and 1/2 beyond was going to be so difficult, I would have come ter up with more positives together. Ready? But instead, I'm afraid I was telling her to do her homework and cleaner room and all those awful mother everything's, you know,

spk_3:   22:13
you were treating her like a normal kid. That's what Dr Marx told you to do. So

spk_0:   22:19
exactly slow, Not myself, since lack. As a teacher, we think about filling kids buckets with all those positives, right? And so if by chance somebody knocks their bucket of love over than they don't lose so much. So we wish I could have filled her bucket better. We'll get there, we'll get there were very hopeful. We have to be right. We have to be hopeful people, so it's not gonna be like this forever.

spk_3:   22:42
Well, that is exactly where we have to head that it's not going to last forever and that she is going to beat this somehow. But when she does, you're going to need to come back on the show and talk about what it was that turned the tide. Because look, we see it doesn't take that much for things to go from stable to Oh my goodness, what in the world is going on? And we have a new chronic illness diagnosis? How did you get back? What's the tipping point? How do we tip it back the other way so that we can be stable again and have energy? I mean, for me, 55 years old, I got bronchitis. It went from viral to bacterial. I took a ton of medicines and it it really took me about six weeks to start Feeling better. Anna is much younger than I am, and she's been six so much longer that you wonder. I mean, what is it that can help her to get back on that stable path where she has energy? And even now I'll be honest. Even now, I don't feel like I'm 100% tumble of energy like I was before. I think that you know some of these upper respiratory illnesses, especially for our kids, because they're lungs have already been compromised by having been on the heart lung machine. I think it just hits them harder. So what do we have to do to hit back to make it more normal for her,

spk_0:   24:09
especially kids with the fund tan pathways? Because the body already takes a hit because it's not functioning the way that it was meant

spk_3:   24:18
to our

spk_0:   24:20
ends. And so, um, I think it gets them even harder.

spk_3:   24:25
I think it does, too. I think it does, too.

spk_0:   24:28
But yet it's a you know, it's kind of invisible, right, because they don't seem fragile. No, well, right, they don't We have lots of years that we forgot.

spk_3:   24:41
Tell us what advice you can offer other families who are doing with something like this, where it's not heart related. But it's something that compromises their entire body, compromises their health. I would

spk_0:   24:55
say to definitely find the right specialists and make sure that the specialists are working together. All of Anna's specialists have Dr Marx is the go to. They didn't give her a medication before clearing it with him because they're so many other medications. She's on for her heart. That was always the worry for me to make sure they didn't counter Act show. You have to make sure that everybody's working from that perspective and then and keep listening to your child. It's easy to brush off symptoms we all do initially because kids are kids, right? But you have to really know well, then you have to continue to push the medical field. In fact, it was Anna in April of this year. Who said to Dr Marks, Well, if you don't know what's happening, who do we go to to find out what's happening?

spk_3:   25:51
Good for her? Wow,

spk_0:   25:54
it was pretty remarkable. Of course, all the adults in the room, my husband and I were like, Oh goodness, you know, Dr Marks is the guy you go to. I said, Honey, he is the second opinion. People come from all over the world to ask Dr Marx. One's going on,

spk_3:   26:08
but good for her, for standing up for herself and saying, OK, you don't know who else might know I made. That was a good question.

spk_0:   26:16
It was a turning point because Dr Marx put us in touch with Dr Bloom from the heart transplant in Heart failure Clinic from Boston Children's. And it turns out Dr Bloom is the teenage girl patient whisperer, and she connected with Anna immediately. Dr. Bloom was the one who said to her, You're not gonna feel this way forever because I'm gonna make sure you don't

spk_3:   26:40
where grass her Wow, that was Dad's. He's amazing. That's just amazing. And that's what you need. You need somebody else who's on your team. Who says we're going to go through this together? It's not going to be like this forever. Exactly. Exactly. Okay, So I said earlier that we would find out how Anna is doing now, and I want to know now that she has graduated what is next for Anna

spk_0:   27:07
and has enrolled in our local community college National Community College and her highest A T scores qualified her for a dual enrollment program with the University of New Hampshire. What's great is that she wanted to go to you. Unh anyway, she must be a child life specialist, and they are the only school in the East Coast that has an undergraduate minor in child of life. So we're just working out perfectly that she's gonna go to the queen of the college while we get her health under control. She's already of student at U N H. In their minds, she just has to tell them well, and she wants to show up. So it's gonna be great.

spk_3:   27:44
I just love that. And I love that she's going to be working in a hospital setting and helping other people. Then, you know, awesome. Oh, my gosh, I'm so glad I asked. I'm so glad to hear this coming home. Thank you so much for coming on the program today, Marie, and for sharing all of this information with us. You know, we just take for granted that our kids are going to get a cold or maybe even get the flu and be perfectly normal after that. You bringing our attention to the fact that now they could develop arthritis or they might develop some liver issues. This is really helpful because now, if there's another mom or dad or adult who hears this and they start having those symptoms, they can say, Wait a minute, I know somebody else,

spk_0:   28:31
right? Right. Well, it's been my pleasure, really. I'm always happy to share our experiences because I've learned so much from others to So we just pass it along

spk_3:   28:40
while you were awesome. And that does conclude this episode of heart to heart with Anna. Thanks for listening today. Please check out our website for this special program we have for our patrons. You can get special opportunities merchandise. You might even be able to meet with my heart to heart with an A team in person. All it takes is a small regular donation to make a big difference. Of course, a large donation could make an even greater difference. So go to www dot patriot dot com slash heart to heart to learn even more. That's all for this episode of heart to heart with Anna. Remember,

spk_0:   29:16
my friends, you are not alone.

spk_1:   29:22
Thank you again for joining us this week Way Hope you have been inspired on. Empowered to become an advocate for the congenital heart defects community Heart to heart with Anna With your hose down, Jaworski can be heard every Tuesday at 12 noon eastern time