Living with HLHS & Evolving Diagnoses

Annie Ulchak is a unique Heart Warrior. Born in Lima, Peru in  1979 with nomenclature HLHS, she came to the United States for life-saving surgery, after she was adopted. She joins Anna on this episode of "Heart to Heart with Anna" to talk to her about what her medical journey has been like, what complications she has encountered as an adult, and how she has taken control of her medical life.

In the 3rd segment, Annie mentions creating a medical history that Heart Warriors can keep with them. Here is a link to the Adult Congenital Heart Association page which helps adults build a convenient History Passport:  https://www.achaheart.org/media/1215/php2018web.pdf

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Transcript

Annie Ulchak : 0:00

With each complication that arose, it allowed me, as an adult, to take more control of my medical life.

Anna Jaworski : 0:15

Welcome to the 15th season of Heart to Heart with Anna. I am Anna Jaworski and the host of your program. Today's show is "Living with Hypoplastic Left Heart Syndrome and Evolving Diagnoses," and our guest is Annie Ulchak. We'll start today's program by learning a bit about Annie in segmant one, and in the second segment we'll be talking to Annie about the complications she has suffered living with Hypoplastic Left Heart Syndrome and then in the third segment, she will be giving us some advice for heart warriors who have complex congenital heart disease. Annie Ulchak was born in Lima, Peru in 1979 with nomenclature HLHS, or Hypoplastic Left Heart Syndrome, pulmonary stenosis, double inlet right atrium, and double outlet right ventricle. She was adopted and had the two stage HLHS process; the Blalock-Taussig shunt at age three and a classic Fontan at age seven at Boston Children's Hospital, she was diagnosed with congestive heart failure and cardiac cirrhosis in 2010. In June 2014, she was diagnosed with autoimmune serositus of the peritoneum. In December 2014 and January 2015, she was diagnosed with atrial flutters and has undergone two cardiac ablations. Following her most recent health struggles, Annie developed a passion for nutrition and improved her health dramatically via an overhaul of her diet. Annie works full time as a dual executive assistant Project Coordinator for a prominent Boston healthcare system. When she's not working she can be found volunteering at Quincy animal shelter and being an admin for the Zipper Sisters and an Adult Congenital Heart Association, and pet sitter Welcome to Heart to Heart with Anna, Annie.

Annie Ulchak : 2:03

Hi, Anna, thank you so much for having me on your show today.

Anna Jaworski : 2:06

I'm excited to have you on the program Annie, you and I have had the good fortune to talk in person several times, but this is the first time for you to come on my program.

Annie Ulchak : 2:16

Yes.

Anna Jaworski : 2:17

You told me in your bio that you were born with nomenclature HLHS and some other defects. This is a fairly new term for me. So can you tell us a little bit more about your congenital heart diagnosis?

Annie Ulchak : 2:32

Yeah, sure. So all of my life I've always known I had HLHS, wich stands for Hypoplastic Left Heart Syndrome, Double Inlet, Double Outlet Right Ventricle, and pulmonary stenosis. So I had assumed that I was a traditional HLHSer. And then in May of 2019, Dr. Frederick Wu at Boston Children's Hospital, fully educated me, that even though I do have a hypoplastic, left ventricle, it's not traditional, hence nomenclature HLHS. So my cardiac anatomy is much rarer than HLHS, because both atrium drain into the right ventricle, and both the aorta as well as the pulmonary artery are off of the right ventricle. So my left ventricle was this chamber that received virtually no blood flow and therefore never developed.

Anna Jaworski : 3:23

Okay, that makes us so much clearer. He did a really good job of educating you on your heart defect, didn't he?

Annie Ulchak : 3:30

He did an amazing job. And he even was able, for the first time in my entire life, I saw a real picture of it with colors and drawings and everything. So it was really cool.

Anna Jaworski : 3:41

Wow, that is really cool. I know from talking to you in the past that some people have not been able to even fathom how you could be alive until you were three, before you had your first surgery. But this explains it because the quote unquote nomenclature, HLHS, just means that your left ventricle is hypoplastic, but it was still able to function well enough for you to survive because...

Annie Ulchak : 4:09

No, no

Anna Jaworski : 4:09

... your right ventricle was doing all the work anyway, right?

Annie Ulchak : 4:12

Correct. That's right. Yes, I thought you're gonna say that my left ventricle was able to do a little bit even. But unfortunately, it was never developed and so yes, the right side grew and doubled its size and did all the work for both of them.

Anna Jaworski : 4:28

It's just amazing how nature can compensate for itself. Sometimes I just am astounded. And I think from having spoken to you personally before that you and my son also share another commonality with your original diagnosis of HLHS, in that both of you have good valves, which is fairly uncommon in an HLHS patient.

Annie Ulchak : 4:51

Yeah, I have to agree with that 100%, and I was also very fortunate where my pulmonary artery and my aorta are normal sized. So they weren't shrunken, they weren't thinned, they weren't pinched off, or blocked in any way. They are completely normal, they just shifted over to the right side.

Anna Jaworski : 5:11

Right. I know that you said you had your Blalock-Taussig Shunt at three years of age. Do you have any memory of that? I know that's still pretty early, but some children do remember things from when they were toddlers?

Annie Ulchak : 5:26

No, I do not have any memory of that one. If there was any memory, it was the Fontan.

Anna Jaworski : 5:30

You had the font in at seven, by seven, you definitely can remember things. What was your life like before and after the Fontan?

Annie Ulchak : 5:41

As you know, I'm an adopted child. So it was working with me getting into Boston Children's Hospital and the medical visa to get looked at to see exactly what my CHD diagnosis was. So when the doctor Castaneda and the other doctors over at BCH saw it, they realized that my condition was a lot more severe than originally told in Lima, Peru at that hospital and knew that immediately I needed the BT shunt, and so I went in. I don't remember that. But I have to say after the Fontan, aside from the open heart surgery, I had a very typical childhood. That was, what I would consider, my normal. And I grew up in a family that was half Ukrainian and half Irish. So I learned all those recipes, and learned to love those foods. I went to school full time, I played with friends that were both in school and on my street. You know, I played with my family. I have a younger brother who's also adopted with different parents. Because my mother didn't trust camps, it's not like today where they have heart camps that people are aware and they know, it was just regular camps, so my brother and I, during the summer, we became best friends. We constantly played with each other. I had a pool that I was always swimming in. I was very lucky. I had a very healthy immune system. I had a very healthy system. My Fontan was exactly what they had hoped it would be, which was amazing. I climbed trees. I played in a dirty marsh, we'd play kick-the-can you know, I hated wearing shoes.

Anna Jaworski : 7:11

Oh my gosh. I can see you doing that, Annie! Oh my gosh. I can definitely picture it!

Annie Ulchak : 7:15

Yes, I was so dirty and so, like messy and it's- and I tried to be the dainty little girl, it just wasn't me. I got grounded like normal people too. You know, you did something wrong, you picked on your brother, you're in someone's backyard and you're grounded. My rules growing up were very similar to a traditional childhood rules. You don't follow or do what your parents say you get in trouble. There was no "Oh, no, she's gentle or she's fragile." It was "No, she's not, let her play." I was very fortunate whem Dr. T(?) did tell my mother, when my mom asked him, "Are there any restrictions?" and he said, "No, there are no restrictions because she, as a patient as young as she is, will let you know when she cannot do something." And that's exactly what happened. I would let people know just by saying, "I'm tired and need to sit," or putting me to bed a little extra early than most people and getting in my sleep. For me, my also typical childhood including yearly appointments, or sometimes more often at Boston Children's Hospital, and getting my physicals and my bloodwork and seeing all the amazing doctors and nurses that were fortunate, and I was fortunate, to take care of me during my BT shunt and Fontan.

Anna Jaworski : 7:22

Well, yeah, you said Dr. Castaneda, he is one of the greats in HLHS surgery.

Annie Ulchak : 8:32

Yeah, he is, and what people don't always recognize or know about this man is that he was the surgeon teacher who taught Dr. Norwood the Fontan.

Anna Jaworski : 8:43

Wow. Thats amazing. That's such a great story.

Annie Ulchak : 8:49

I was fortunate to have such a brilliant surgeon who, as I've grown up and gotten to know through colleagues and people that did work with him, I work in healthcare, so they said that what he would do is he'd have a plan in mind, but once he would open up the patient, because it's not like today with the different MRI scans and the CT scans like it is now. He would look at it, look at the heart look at the anatomy and realize, okay, the plan he had might have to be changed and this is what he has to do. So, I was fortunate that he saw mine and said, "Alright, let's build this little thing called the Fontan on her and work with what anatomy she does have." And I think that's why I've been very fortunate to have such a quote unquote, normal lifestyle of playing and running and swimming and doing all the things that you would think a four chambered heart person

Heart to Heart with Michael : 9:37

"Texas Heart Institute were offering us a mechanical heart and he said, "No, Dad, I've had enough. Give it to someone who's worthy." "My father promised me a golden dress to twirl in. He held my hand and asked me where I wanted to go." "Whatever strife or conflict that we experienced in our long career together was always healed by humor." Heart to Heart with Michael... please join us every Thursday at noon Eastern as we talk with people from around the world who have experienced those most difficult moments.

Content Disclaimer : 10:06

This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. The opinions expressed in the podcast are not those of Hearts Unite the Globe, but of the Hosts and Guests and are intended to spark discussion about issues pertaining to congenital heart disease or bereavement.

Questions and Comments : 10:27

You are listening to Heart to Heart with Anna. If you have a question or comment that you would like addressed on our show, please send an email to Anna Jaworski at Anna@HearttoHeartwithAnna.com. That's Anna@HearttoHeartwithAnna.com. Now back to Heart to Heart with Anna.

Anna Jaworski : 10:47

Annie let's start this segment by talking about your first serious complication as an adult. It sounds like you had a great childhood after you had your Fontanne. Can you tell me when you were first diagnosed with congestive heart failure and cardiac cirrhosis?

Annie Ulchak : 11:02

Yes. So actually, I had been training for the marathon in 2007, and it was around the summer of 2007 that I started gaining a lot of fluid and I didn't know why. I looked about nine months pregnant by the time I finally said, "This isn't fat. This isn't me there really is something going on with my system, and it's probably my heart," and so in comes my hospitalizations at Brigham and Women's, that work with Boston Children's Hospital. After many procedures and operations and different tests and studies. It was the end of 2007 actually, because it took a very long time for them to figure out what was going on. So the end of 2007, I ended up getting diagnosed with congestive heart failure and then actually it wasn't until 2008, around the middle of 2008 that they were able to diagnose me finally with what was known as cardiac cirrhosis and is now known as fontan associated liver disease,

Anna Jaworski : 12:03

Wow, it took them two years to be able to come up with that diagnosis.

Annie Ulchak : 12:09

Yeah, it was a very long and painful and emotional and heartbreaking moment. Because for the first time, I could see that my doctors were very human. You know, you always look at them as, in a sense, Gods because they repair you. I do not like that would repair you and help you along the way and help parents and for the first time, they had no idea what was going on. I kept filling up with fluid. My systems weren't doing well. I just couldn't even walk. So, yeah, it took them a very, very long time.

Anna Jaworski : 12:42

And this is after you were training for the Boston Marathon. So before this, you were used to being able to do pretty much what you wanted to do, right?

Annie Ulchak : 12:51

Oh, I was severely spoiled. Yes.

Anna Jaworski : 12:55

Yeah, and that's just got to be terrifying to live this life where you have a brother You hang around with your brother, whatever he does, you do. You live what you consider to be a normal life and then all of a sudden your world comes crashing down around you. So how did they finally determine that you had cardiac cirrhosis or Fontanne associated liver disease?

Annie Ulchak : 13:17

When they had to go in for the first surgery, they did biopsies of everything, including taking my appendix out. And it turned out that I had cancer of appendix which is very rare because you know, let's stick with that word rare. They thought, 'oh, okay, so this was the reason for the societies and the ascities will go away,' and it did not. It kept coming on strong. I would have to be tapped, as they call it, or for those who don't understand it's a paracentesis it's a measure that they will take where they will put a needle inside of you and a draining bottle at the end of that too, from the needle so that all that fluid gets drained out of you. I've had over 40 something paracenteses with all of the stuff. Yeah, it was not fun, and so they kept going And going and it wasn't until they did biopsies of my liver, finally, that they saw and they brought in Dr. Ukomado, Chweike Ukomado, from Brigham and Women's. He's no longer there, but he's doing research on liver disease in the heart, which is amazing. He's an amazing man. He kept me sane. And we worked out medications and that's how we were able to get that diagnosis, that it was my Fontanne that was doing this, and not liver disease from anything else. Mm hmm.

Anna Jaworski : 14:26

Mm hmm. Wow. So that's pretty scary that you were having to deal with all of that all at the same time. So you were 29 years old when all of this started to happen?

Annie Ulchak : 14:40

Correct. Yes. Or I should say when all of this was happening, I was 28 going into 29 when all of it blew up, so correct.

Anna Jaworski : 14:48

In your bio, it also said that you had autoimmune serositis of the peritoneum. What is that and when did that start happening?

Annie Ulchak : 14:58

So we have our intestines, and between our intestines and our muscles, we have this specialized shield that holds and houses a lot of white blood cells and immunity and it protects the intestines in the internal cavity. And so for some reason, my body was attacking that, like coding shield that goes over us. And so for years, they were doing testing to figure out what this was because they kept seeing it over and over with all these biopsies and checking the fluid for the paracentesis. So when they finally had to do another hernia repair, I've had three, I'll going on my fourth, I've got one right now, but that's okay. They did a specialized test, and this test showed that I had, what they thought mesothelioma, and why they thought it was mesothelioma is because my mesolium cells were all sloughing off and dying. So Dr. Chinweike Ukomado said to me, "we need to make sure that this is true because if it is you have a very advanced case and only have a few months to live, if even." He wrote to my insurance company at the time begging and praying that they would cover this specialized test that's only done in one city in one state of the United States, and he sent it out. And now if this came back positive, then yes, I had mesothelioma. If this did not come back positive, then they realized that I had an autoimmune disorder of my parotineum, and luckily it came back negative. it was probably the best New Year's present of my life that I've ever had. So in 2012, this goes to show you in 2012, this is what happened. They got that diagnosis, and said that for whatever reason, the liver caused an autoimmune disorder in my intestine, and this is what was going on and that actually also played into some of my ascities fluid intake as well. So I was on prednisone and we played around with my medication and keeping the fluid off and we came to a sweet spot, where I was able to, little by little have less and less fluid build up, and it got to the point where, knock on whatever wood is around and I'm so thankful for, I have not needed a tapping in a very, very long time.

Anna Jaworski : 17:12

What a huge blessing but what a complicated path you have traveled.

Annie Ulchak : 17:18

You could say that again. Yeah.

Anna Jaworski : 17:20

Yeah. 2014 was a really tough year for you too, because then in December, you had some arrhythmias. Talk to us about that.

Annie Ulchak : 17:30

So yeah, so in December, I had an atrial flutter. That's when I got to meet Dr. Vassilios Bezzerides, over at Children's, who became my EP specialist. And with him, and working with him and learning all about it, we first went the medication route, and we went through trying to restart my heart in other ways. And so the medication kept it off for a little bit, but it wasn't until January of 2015, that it came back full force and the medication wasn't going to do it. And so I had my first ablation January 2015. And then that did not work, that I remember in the recovery room going to use the potty and, or the urinal, and next thing you know, my heart just went straight into flutter again.

Anna Jaworski : 18:16

Oh, no,

Annie Ulchak : 18:18

Yeah, they decided, with me talking with them, that's what I mean by we, I always work with my medical team in the best decisions of my body and myself. And that we were going to try more extreme measures with medications because my body just went through an ablation, they went through my groin, it just wasn't gonna work to try to do it again. We figured well let my body repair itself, let my heart calm down, and maybe it's not really another atrial flutter that maybe it's just my heart going crazy from having the ablation. But unfortunately, that was not the case and so July 2015, I had my second ablation, and knock on wood, that one worked. I was so happy and elated. It worked wonderfully

HUG Store Promo : 19:04

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HomeTonightForever : 19:40

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HUG Message : 20:20

Heart to Heart with Anna is a presentation of Hearts Unite the Globe and is part of the HUG Podcast Network. Hearts Unite the Globe is a nonprofit organization devoted to providing resources to the congenital heart defect community to uplift, empower, and enrich the lives of our community members. If you would like access to free resources pertaining to the CHD community, please visit our website at wwwcongenitalheartdefects.com for information about CHD, the hospitals that treat children with CHD, summer camps for CHD survivors, and much, much more.

Anna Jaworski : 20:56

Before the break we were talking about a number of complications that you suffered in your adult life. Let's talk now about what you've been able to do for yourself to become healthier.

Annie Ulchak : 21:07

With each complication that arose, it allowed me, as an adult, to take more control of my medical life. It allowed me to question things and research things and truly talk with my doctors not just the patient to doctor, but also as, in a way, friendship so that we could grow together and making sure that this is going to be the best way or the best procedure or the best medication, tell them my fears I would tell them my moments of "well this doesn't seem to be doing anything What else can we do?" And they would say, "you know, sometimes this takes more patience and time, you might need a few more weeks," or "Okay, let's try this route instead." And so I think by taking control, and little by little each thing, and what finally catapulted me into full 'I am no longer going to lay down ever again and be 100% advocate for myself' was when I suffered my stroke in 2013. It was a rare thing. It wasn't because of my heart at all. But I realized, that whatever was going on in my body, my body was trying to tell me something and so, through all of that, I learned that making sure that I was always on time about taking my medication. Working with all of my providers 100%. One thing that I realize is, it's not working for some patients is that they let their providers tell them what to do. No, you need to work with them. You need to understand. You need to do what little research you can, because sometimes the big words in the medical textbooks you have no clue, but being able to talk to them and say, "What does that mean?" or, "How does that relate to me?" or. "How will that affect me?" or "What should I be looking for if it's not working or if it is working?" All those questions help you and then by becoming curious and learning and knowing you become a stronger advocates for yourself. I started exercising more, and differently as well not just sticking with one thing. So I love yoga. I love polities I love walking and doing incremental running and walking. I love kickboxing. I love boot camp. I love a lot of different things, because sometimes I get bored, but also, you know, the body requires all sorts of different things to be able to be strong. And then with that strength, you need to fuel it with healthy food. And don't get me wrong, I enjoy my treats, but for me healthy food is important just as medicine because food is medicine. And then finally, I also learned to work through my very minor but it's still there, PTSD with my chest tubes and my paracentesis and then also the other personal things that had gone in my life while everything sort of, the crap hit the fan.

Anna Jaworski : 23:50

Right. I like how you're attacking your life in multiple modalities. You're looking at your diet, you're looking at exercise, but you're also looking at your mental health. I think that's really, really important. And I think that's an area now that more and more doctors are coming to see plays a vital role in our overall physical health.

Annie Ulchak : 24:11

Yes, I couldn't agree more. Because as human beings, we're very complex, just as real complex with our congenital heart defects. And we need to understand that all of that works together. Or if one piece is missing, or one piece is broken or defective, that the puzzle just kind of follows.

Anna Jaworski : 24:29

Yeah, yeah. Well, I know that you've been very focused on food and that you even had a food blog. Can you tell me a little bit more about that and why you decided to do that?

Annie Ulchak : 24:41

So I had a food blog because some of the other issues that came up because of my HALD is not being able to process gluten properly and not being able to process grains as well. And so then you have the "Okay, I've got FALD and CHF," which means you need to be lower sodium. So you have all these complexities added into a diet and you say to yourself, "Well, how can I still make food fun and delicious, and something I still enjoy partaking in with the eating aspect." And so with that blog, I started experimenting with simple recipes that I would find and love, and then making it gluten free, lower sodium, and also for myself grain free so that people enjoyed it. It didn't change anything of the enjoyment of the actual food, and it would be simple enough for people to follow and use whatever herbs they wanted. And people don't always realize how much herbs can really add to a dish and make it just as delicious as adding all the salt,

Anna Jaworski : 25:45

Salt or fat or things that we really don't need. You're absolutely right.

Annie Ulchak : 25:50

Well, there are healthy fats. That is one thing that I have learned and worked with my team, is that we have to remember you do need some salt, you do it need some fat, and you do need a little bit of fun.

Anna Jaworski : 26:04

You need a lot of fun Annie! I know you you like to have fun girlfriend.

Annie Ulchak : 26:08

I do, I do. But I have to be healthy with my fun too. And I have to be realistic. Because anytime I see maybe a pattern where I might have had two weekends in a row of having a couple of cocktails and a few unhealthy appetizers, I say to myself, "all right, I went on a little slope." I don't shame myself, because that's the one thing that we in the society, I've noticed. is we shame when we want to have a hotdog, we shame when we want to have a cocktail. And instead what we should do is say I enjoyed that. I earned it. And now the next meal is going to be healthy. The next meal I'm going to fuel my body with.

Anna Jaworski : 26:49

it's just like we learned from, was it Socrates or Aristotle, all things in moderation?

Annie Ulchak : 26:56

Correct, correct.

Anna Jaworski : 26:58

It's okay to have a treat every now and then as long as you don't make that your everyday occurrence, it's not a treat if you're doing it every single day anyway.

Annie Ulchak : 27:07

Exactly. You just get so used to it, it becomes the same thing all the time instead of enjoying the luxury of biting into that piece of pie or enjoying the luxury of having that sliver of bacon out with your family for one family breakfast.

Anna Jaworski : 27:21

Mm hmm. What advice do you have for other adults who have complex CHDs?

Annie Ulchak : 27:27

So like I said, everything in moderation. Following and listening to your doctors, and here's my biggest thing, if you haven't already, sit down and truly learn about your congenital heart defect, your CHD. Read up about it, and write down all the important dates for yourself, your diagnoses, and your procedures you have had, and keep that somewhere on you. So if you end up in a situation, you have it all at your fingertips, because our system is so complex, our life has become complex that we need to be able to have it simplified so that when we have to speak or if we can't speak and we can show someone a piece of paper or an iPhone or Android with our information, they have a better understanding and awareness of who we are and what they're dealing with. I also want people to do the homework of writing out, and this is hard for a lot of people, but your living will talk to people you trust regarding your health proxy. Really sit down and actually make that part something that you treasure and honor not something that you look at as, 'Oh, this is so dire, this is so final.' No, you get that luxury, hopefully, of making it what you want it to be so that when your time does come to an end, it's how you wish it.

Anna Jaworski : 28:51

Oh, I love that.

Annie Ulchak : 28:54

It is very hard to face that reality. That our story and who we are, that beauty of us will end. So whether we die young or we die old, we must be willing to be proactive for our own sanity and our family's sanity as well. Doing these steps, working with your medical teams like really, like I said, work with them. I have it's taken me a while, but I have gotten there and whenever I meet a new professional, the first thing I say is "I need it straight and to the point I need to hear the truth, even if it hurts me, because I need to be slapped into reality sometimes." Also, learning through different groups, such as the ACHA, the Adult Congenital Heart Association, they have such wonderful webinars and podcasts just like Anna's, also has been amazing. This is another group that I find amazing in learning about and being able to be part of. You want to become the strongest advocate you truly can be for yourself, that you need for yourself, you want for yourself. You want to be that person, for your family, for your friends, for your children, or your pets and also for the medical community because we learn, but they also learn from us.

Anna Jaworski : 30:08

Exactly. Oh my gosh, that is such amazing advice. Thank you so much for coming on the program today, Annie.

Annie Ulchak : 30:17

You welcome. This is truly an honor Anna, to be part of something that's become really so wonderful for the CHD community. I mean, I love when I'm able to take one of your podcasts and send it to a heart parent or a patient or a group and say, "Listen, this is what they had," "Listen, this is pretty awesome," "Listen, this will help you learn or help you understand that we're all here for each other. We're all working as a community through the fear to the anxiety, but also through the love and community."

Anna Jaworski : 30:48

Yes, yes, yes. Well thank you for being an advocate of the podcast. I do appreciate that, and you're right. It's with all of us working together, that's what makes us a community and I think that's What makes us such a tight community. I have just enjoyed every minute of this with you today, Annie.

Annie Ulchak : 31:07

I have too. Thank you again, Anna. Really, thank you.

Anna Jaworski : 31:10

Well, it was my pleasure, and that concludes this episode of Heart to Heart with Anna. Thanks for listening today, my friends. If you've enjoyed this episode, please leave a review of our podcasts on Apple podcasts or YouTube. And remember my friends, you are not alone.

Closing : 31:29

Thank you again for joining us this week. We hope you have been inspired and empowered to become an advocate for the congenital heart defect community. Heart to Heart with Anna, with your Host, Anna Jaworski, can be heard every Tuesday at 12 noon Eastern Time.