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Jun 27, 2018 · Gabrielle Wanek - How to deal with boredom in hospitals in HLHS

waiting room

Have you ever been so bored out of your mind while waiting in a hospital waiting room? It’s that waiting for an unknown amount of time that can drive a person crazy. Trust me, I know all about it. I’ve had that experience far too many times so I’ve decided to create a list of ideas for one to do within a waiting room.  

  1. Bring a book. You never know how long you may be waiting for your turn.
  2. Have headphones. If you want to watch a show, movie or listen to music while waiting you’ll want to have your headphones
  3. Grab your charger so that you can charge the device you are using your headphones for in case the battery gets low.
  4. Read a magazine. They are normally all over the waiting room so just pick one and start reading.
  5. Bring a handheld gaming system. It’s something for children and nerds alike!
  6. Make friends with the people in the waiting room. There’s nothing wrong with a little small talk.
  7. If your friend or partner is in with the doctor, go for a walk. But, you should probably tell them beforehand or text them.
  8. Get a coloring book and colored pencils or crayons. What? Coloring is fun. It isn’t only for children. Haven’t you heard of the adult coloring books?
  9. You could take a nap.
  10. Make a to-do list for things you need to get done when you get home or for the next few days. You may have questions that you want to ask the doctor.
  11. Call your mother. Seriously, she would love to hear your voice.
  12. Bring snacks. You don’t know how long you’ll be sitting there.
  13. Bring a computer to do work or play games on.
  14. Clean out your phone’s memory.
  15. See how weirdly you can sit in a chair.
  16. Make a game of seeing how people dress compared to yourself.
  17. Play the Alphabet game
  18. Annoy your friends or family by constantly texting them.

These are some of the things that I have done in waiting rooms while I have been waiting to be seen and they do tend to make the time go faster. Other times you’re just so bored that you forget these options. This list of ideas can be very helpful, and useful when the time arrives.

Check back in next week to read more about Gabrielle Wanek, a twenty-three-year-old living with hypoplastic left heart syndrome. 


The Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) is a collaborative network of specialists bonded by the vision of finding solutions for individuals affected by congenital heart defects including HLHS. The specialized team is addressing the various aspects of these defects by using research and clinical strategies ranging from basic science to diagnostic imaging to regenerative therapies. Email the program at HLHS@mayo.edu to learn more.

Jun 20, 2018 · Gabrielle Wanek: Finding my place at school in HLHS

Color run

During my freshman year of college, I was a theater major. I was passionate about theater in middle school and into high school. That’s what drove me into the field. I loved the roar of the crowd and the blinding lights that filtered across the stage. I cherished the butterflies of the first performance, the feeling of nerves before you walk out from behind the curtain. I loved when my heart pounded in my chest from the energy that lurked. I ached for the stage that I had left hours before; it was an addiction. The adrenaline pulsed just under the surface of everyone who was a part of the performance. It was intoxicating to us.

When I went to college, that energy still remained as I was welcomed into the Performing Arts program with open arms. I learned how to make costumes, and work behind the stage rather than prancing around on the set. After nearly a year and a half of being a theater major, the grueling hours to complete productions and rehearsals were starting to kill the luster of the major and ended up just being too much for me. My excitement for the performing arts came to a screeching halt. During the day I was in class and then I was at the theater until late in the night. I soon realized I could not keep going like this and and I decided to change my direction.

I looked into taking up a business major but there was no interest there for me. There was nothing about it that made the heart pump and the energy run through my veins. I wanted the excitement back that I had performing, but I knew I wouldn’t be able to get it back until I walked on a stage. I didn’t want to go back to that life, however, so I kept looking. The medical field was never an option for me. After growing up with my heart defect, I knew I wanted nothing to do with it. I hated that too clean smell that all hospitals have and I’m not overly fond of blood or needles.

I didn’t know where to go, or which direction to turn because everything drew me back to the theater. I kept trying to find a place that I fit in, a place where I could comfortably be myself and have a life outside of the major. I’m sure many people can relate to the feeling of searching for a path to call their own.

In all honesty, it was an accident that I met him. I was walking to my professor’s office and wasn’t paying attention. I walked right into him. I felt like an idiot as I dumped all of my books on the floor, exactly like you see in the movies, as I plowed right into a professor. How embarrassing! And to top it off, it was a professor that I didn’t even know so I couldn’t play it off. With a red face, I started picking up my books and the professor starts helping me. He grabbed the few pieces of paper that I had shoved into my text book one of which was an essay I was preparing to hand into my English professor. I wasn’t really paying attention to him as I tried to quickly gather my things and take off when he caught my attention. He was reading over my essay on video game culture and how it influences the new generations.

“You wrote this?”

“Yes, it is for my opinion writing class.”  

“What’s your major?”

“English writing.” He only smiled at me.

“I think you’re in the wrong major. Have you ever hear of games and interactive media?”

All I could do in response was shake my head no. Gathering the rest of my materials, he walked with me to my English professor’s office to drop off the essay. He then proceeded to show me to his office as we talked about the different games we’ve played, and offered more information on the major. His office was a collection of old video games, statuettes, posters, and so much more. Soon enough, I changed my major to communication with a focus in games and interactive media. Let’s just say my adrenaline started running through my veins like it hadn’t in months.

Check back in next week to read more about Gabrielle Wanek, a twenty-three-year-old living with hypoplastic left heart syndrome. 


The Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) is a collaborative network of specialists bonded by the vision of finding solutions for individuals affected by congenital heart defects including HLHS. The specialized team is addressing the various aspects of these defects by using research and clinical strategies ranging from basic science to diagnostic imaging to regenerative therapies. Email the program at HLHS@mayo.edu to learn more.

Jun 13, 2018 · Gabrielle Wanek: HLHS can't stop me from being in the marching band in HLHS

band

I was in concert and marching band from sixth grade until I was a junior in high school. I know I was a band geek, but there is a reason I am saying this so stick with me. I marched at multiple different performances, from Torch Light in La Crosse, Wisconsin to Red Rock Amphitheater in Colorado. I’ve had my fair share of experience with all types of different people, from people who have had too much to drink to hardcore marching band fans and through it all I had a blast.

We were one of the best marching bands around the area. Marching bands normally stay on the street, but we really didn’t. We would create two giant lines (hope we didn’t get lost) and weave into and through the crowd or go into buildings if the doors were open. We were a great band, but there was one thing that I learned while playing my heavy snare drum – I learned a lot about dealing with my medical issues. One thing that may affect other people with HLHS is that we can’t take the heat. Now when I say the heat, I don’t mean getting angry or facing life’s pressures. No, what I mean is that we can’t take high temperatures, which is something that I found very interesting. You’d think that maybe I would just overheat because I was wearing the full cotton material of the marching uniform. Nope, it’s actually a real that has become a part of my trials and if not taken care of immediately one can get heat stroke.

If it’s a dry heat then it’s normally fine, however, it’s the humidity mixed with the heat that will make the person overheat faster. Being a person with HLHS, you have to always be aware of how warm you are. One of the clear signs of a person getting far too warm is that they are getting out of breath. Something that I have learned throughout my twenty-three years is that even if I’m  walking a short distance in the heat, if I start to pant, then I need to get inside immediately. Another sign is my cheeks start turning red, with or without signs of sweating. Each time that I have gotten overheated, my symptoms are different. The only thing that really remains the same is that it’s hard to breathe and you feel uncomfortable in your own skin.

Overheating is something that I became intimately aware of especially while I was in the marching band in high school and I might add, it is not fun. I would never forgo my experiences, it’s just all about learning what you can handle and working around it to get what you want.


The Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) is a collaborative network of specialists bonded by the vision of finding solutions for individuals affected by congenital heart defects including HLHS. The specialized team is addressing the various aspects of these defects by using research and clinical strategies ranging from basic science to diagnostic imaging to regenerative therapies. Email the program at HLHS@mayo.edu to learn more.

Jun 6, 2018 · “Is there something wrong with you?” in HLHS

Gabrielle hospital

This is the second part in a blog series about Gabrielle Wanek, a twenty-three-year-old living with hypoplastic left heart syndrome. Catch up by reading the first post.

“Is there something wrong with you?”
“Pardon?”
“Is there something wrong with you? Your heart it’s beating like a jack rabbit. Is there something wrong with you?” I was sitting in a doctor’s office in North Carolina trying to get some medicine for an illness. The question just caught me off guard.

It’s not that doctor’s fault. I know I need to remember that. It’s a rare congenital heart defect but it’s happened so many times at this point it shouldn’t really bother me, but it always does. That little voice that is nagging in the back of your mind saying, oh, here we go again. It’s been going on for years now; people asking if something is wrong with my heart. Doctors, nurses, friends, people who don’t know or don’t know better.  No, nothing is wrong with my heart. When I tell them that I have hypoplastic left heart syndrome they give me a confused look or they laugh thinking I’m making it up. No, it’s not fake, it is real. It’s a defect I was born with, I tell them, where the left ventricle of my heart is severely underdeveloped. Their look quickly changes to one of concern and I’ve seen that look too many times. Curiosity and concern, it’s not unwelcome.

“How were you able to get to this point, I mean where you are now?”
“Surgery and medicine.”

It’s enough of an explanation for them to be quiet about it and get on with what we were doing. It works for the most part. Some people understand that it’s a part of me and they accept that. Then there are others who have a million questions and most of the time you can’t exactly prepare for them. But you have to try to make them understand, try to make them aware of it all. Even if you can’t answer every question that they have, you try your best.

“Does it hurt?”
“Hurt?”
“Your heart. Does it hurt, like if you do too much does your heart start hurting?”
“Does your heart start hurting if you run a marathon?”
“Well, yeah.”
“It’s the same thing. My heart will start to hurt if I exhaust it.”
“Are there things you can’t do?”
“I can do anything as long as I do it in moderation.”
“You know that you’re the first person that I’ve ever heard of with this condition.”

That’s a comment that I’ve heard so many times and it always leaves a sour taste in my mouth. It’s hard for people to understand something they’ve never heard of before. So you sit there and watch as they try to figure it out. You can see the gears turning in their head as they process the information you have given them. It’s been this way for as long as I can remember through middle school and now into college. It’ll be like this for the rest of my life; me trying to explain something that I don’t even know all that much about.

“What causes it?” Heck if I know.

“How do you fix it?” Currently, there is no cure.

“Is there anything you can do about it?” Besides a heart transplant, so far there’s nothing.

“Is it permanent?” Well, that one always stumps me.

These questions are always asked. Perhaps not right away, but they are always there on the tip of someone’s tongue. I’ve grown up with this defect. I’ve been to so many doctors’ appointments that I have the buildings memorized. I’ve walked those halls and know the floors like the back of my hand. It’s ingrained into my brain now and it’s something that I have come to expect. It’s not normal and I know that, but then again, there is no such thing as normal. It’s routine for me to take medicine every day. It’s common to take care of myself as best I can. It is normal for me to be aware of my sodium intake and the caffeine I drink. How do you live with that? How do you live with knowing a hospital sometimes better than your own home?

You learn. That’s how you survive, you learn to blossom in a difficult situation. You learn how to deal with a world that can’t answer your questions. You adapt to the possibility of not knowing the outcome or ever seeing a finish line. So you learn to live for the moment, you thrive on the thrill of day-to-day life. You take one step at a time and if you misstep, you better keep moving. The world isn’t going to slow down for you, so you better pick up the pace.

Come back next week to read more from Gabrielle as she tells her story of living with hypoplastic left heart syndrome.


The Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) is a collaborative network of specialists bonded by the vision of finding solutions for individuals affected by congenital heart defects including HLHS. The specialized team is addressing the various aspects of these defects by using research and clinical strategies ranging from basic science to diagnostic imaging to regenerative therapies. Email the program at HLHS@mayo.edu to learn more.

May 31, 2018 · Gabrielle Wanek: My Life Growing Up in HLHS

Gabrielle with dog

This is the first part in a blog series about Gabrielle Wanek, a twenty-three-year-old living with hypoplastic left heart syndrome. 

I think a few of you may know me, or maybe have heard of me. I am Gabrielle Wanek, the daughter of Todd and Karen Wanek and I was born with HLHS. I was raised in Arcadia, Wisconsin, a tiny town with a tight knit community. Let’s just say that even if I wanted to get away with something, I never did.  

My parents found out I had HLHS when my mom was about 7 months pregnant. This early diagnosis allowed them to find a doctor with the best success rate in the Norwood Procedure. (You have to remember that the Norwood Procedure was still being perfected, so many parents didn’t want to take any chances.) Through the assistance of the doctors at Mayo Clinic, we flew to Switzerland, where Dr. Norwood was practicing. For the next month, we lived in Switzerland until I was born. After which time we came home and they had to learn how to take care of not only my brother, who is three years older than me, but a child with a heart issue. It was a struggle, but raising kids is a big challenge on its own. Now, they had a whole new challenge to the mix, a challenge that very few people had experience with. My grandparents did what they could to help, coming over often to help my parents take care of us.   

I grew up learning how to properly manage my situation. I had to learn how to do things differently than my brother, I couldn’t do all of the things he could. Don’t get me wrong, I was a very good child, but ultimately I didn’t like sitting on the sidelines for very long. As I grew older the more I could do, the more I could keep up with him. I proved that I was able exert myself more and more. I could go climb the tree out on our front lawn, join the swim team and go hiking with my family. I just had to learn to read the signs that my body was giving me and be aware when it was time to take a break and rest. As I reached high school, I became more independent. I knew I had to be home before my curfew, (10pm on weekdays) and take my medicine before I went to sleep and when I woke up. If I ran out of pills, I had to be the one to order them and pick them up. I had to deal with a low sodium diet, which is really hard to do and that caffeine maybe wasn’t the best thing for me. I joined different teams such as swim team, golf team and I got good grades. I would spend weekends with my friends, and I would go to the water park for the day. I would go to golf meets as a member of the varsity team, and could ride on roller coasters with my best friend. I learned to be responsible and was trusted to not overexert myself and to take care myself.

When I went off to college, I had to learn how to make friends that I wasn’t raised with. I had to be aware of each choice I made because my parents weren’t there any longer to fix my mistakes. I was just another college kid in everyone’s eyes and that was okay with me. The only people who knew about my challenge were a few of my professors who became aware of it, but they never said anything aloud and they would talk to me after class if needed. Most of my professors and friends don’t know that I am different. One time when I was talking to one of my professors and telling him about it, he looked me over and then told me, “you look and act no different than every other student that is here. You’re still the only person that is able to come up with enough snark to come back at me, so don’t change.” His words help me deal with the complications of everyday life and it makes me smile. It’s a strength that I didn’t think I needed.  

Come back next week to read more from Gabrielle as she tells her story of living with hypoplastic left heart syndrome.

 


The Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) is a collaborative network of specialists bonded by the vision of finding solutions for individuals affected by congenital heart defects including HLHS. The specialized team is addressing the various aspects of these defects by using research and clinical strategies ranging from basic science to diagnostic imaging to regenerative therapies. Email the program at HLHS@mayo.edu to learn more.

May 24, 2018 · New blog series featuring Gabrielle Wanek starting in June in HLHS

Gabrielle Wanek 1

We are very excited to announce that we will be featuring a new blog series by Gabrielle Wanek starting the first week of June. Gabrielle is a twenty-three-year-old born with hypoplastic left heart syndrome (HLHS). She will be uploading blogs about her experiences and answering questions. Check in each week for a new post and to ask any questions you may have for her!


The Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) is a collaborative network of specialists bonded by the vision of finding solutions for individuals affected by congenital heart defects including HLHS. The specialized team is addressing the various aspects of these defects by using research and clinical strategies ranging from basic science to diagnostic imaging to regenerative therapies. Email the program at HLHS@mayo.edu to learn more.

 

May 8, 2018 · Children’s Hospital Colorado, Mayo Clinic announce rare congenital heart defect collaboration in HLHS

Red-heart-in-the-hand-of-a-physician_shutterstock_135683396

AURORA, Colorado — Mayo Clinic’s Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome and Children’s Hospital Colorado are collaborating to provide solutions for patients with hypoplastic left heart syndrome, a rare and complex form of congenital heart disease in which the left side of the heart is severely underdeveloped.

“We are thrilled that Children’s Hospital Colorado has joined the hypoplastic left heart syndrome consortium because it brings the research to more patients who may have otherwise had to travel in order to participate,” says Timothy Nelson, M.D., Ph.D., director, Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome. “It means that individuals with HLHS [hypoplastic left heart syndrome] now have more options at their fingertips while the consortium members are coming together to accelerate finding new and better solutions for these patients.”

“We’ve already taken advantage of this exciting new opportunity,” says James Jaggers, M.D., cardiothoracic surgeon and co-medical director of the Heart Institute at Children’s Hospital Colorado. “Just last week, we had a mother deliver her baby with hypoplastic left heart syndrome, and we collected cord blood and sent it to Mayo Clinic. When we perform the surgery on this baby in three to four months, we’ll be ready to inject the baby’s own stem cells into the heart muscle, which, hopefully, will help make it even stronger.”

Read more on the Mayo Clinic News Network..


The Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) is a collaborative network of specialists bonded by the vision of finding solutions for individuals affected by congenital heart defects including HLHS. The specialized team is addressing the various aspects of these defects by using research and clinical strategies ranging from basic science to diagnostic imaging to regenerative therapies. Email the program at HLHS@mayo.edu to learn more.

 

May 2, 2018 · Why is participating in research important? in HLHS

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Medical research helps expand our knowledge of medical issues.

As doctors treat patients and see opportunities for advancing patient care, they work together with scientists and research teams to develop new and improved diagnostic tools, medications, devices, treatment protocols and more.

At the Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) we are working towards finding solutions for individuals with HLHS. So, what exactly does that mean?

Genetics
To study the cause of HLHS, we have a team of researchers studying the genetics of HLHS. In order to do that, we study the genes of individuals with HLHS and their families. Individuals, immediate family members, and occasionally extended family members participate by each donating a blood sample or cheek swab to be analyzed. The genetics team looks at the genes of the individuals to try to find genes linked to HLHS. At this time, we do know that there isn’t one single gene that is associated with HLHS.

Imaging
We are using echocardiograms and MRI images to determine how the right ventricle (or right side) of the heart is functioning. This is important because, in HLHS, the left side is severely underdeveloped so the right side of the heart must do both jobs of the right and left ventricles. By using these images, we can identify possible issues and determine a plan moving forward.

Regenerative Medicine
Regenerative medicine means using stem cells to restore tissue and organ function. To do this, stem cells are developed, through a process called differentiation, into different types of cells. This study takes a small skin sample from an HLHS individual, parents and siblings and then “reprograms” the skin cells into heart tissue.

In addition to these studies, we also have three clinical trials open. For more information on any of these studies or clinical trials, please contact us at HLHS@mayo.edu.

Thank you to all of the individuals and families that have participated in the research! Without your help, we wouldn’t be able to do the work that we are doing to find solutions for HLHS.

 


The Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) is a collaborative network of specialists bonded by the vision of finding solutions for individuals affected by congenital heart defects including HLHS. The specialized team is addressing the various aspects of these defects by using research and clinical strategies ranging from basic science to diagnostic imaging to regenerative therapies. Email the program at HLHS@mayo.edu to learn more.