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1 day ago · Tips on Preparing for College When You Have CHD in HLHS

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Going away to college can be both an exciting and scary time for young adults, including those with congenital heart disease (CHD). This article is designed to help incoming college students with CHD navigate this new chapter in life and learn how to take charge of their own healthcare.

 

After being accepted and choosing your college:

  1. Notify the Housing Office of special requests you might qualify for: Air-conditioned dorm, lower-level floor room or elevator building, or dorm near classroom buildings.
  2. Notify Housing/Admissions Office of need for available AEDs, if appropriate.
  3. Notify Disability Office of any special requests, such as needing additional time or a quiet location to complete testing.
  4. Contact the Student Health Office to discuss your health issues. You can schedule a meeting with them, if needed.

 

Six months before you go:

  1. See your cardiologist. Have all of your cardiac prescriptions refilled by your cardiologist and ask for written prescriptions to take with you if you need to refill medication away from home.
  2. Ask your cardiologist to recommend an Adult Congenital Cardiologist near your college. The Adult Congenital Heart Disease Clinic Directory is also a great resource.
  3. Create a file with information to keep with you when you leave home. You should be able to find most of this online in your electronic medical record, but ask your cardiologist if you have questions. Make sure the file includes:
    • Your heart defect
    • All of your surgeries and dates
    • All current medications and allergies
    • Copies of recent electrocardiogram and echocardiogram reports
    • Your primary care provider’s name and contact information
    • Your cardiologist’s name and contact information
    • The address, logins, and passwords for all online medical record accounts (keep in a safe place)
  4. See your primary care provider. Make sure all appropriate immunizations are up to date including: Meningococcal, Human Papillomavirus (HPV), and any booster immunizations. Make sure to get flu shot in early Fall (every year!) whether at home or at school.
  5. When visiting your college, scope out the nearest Emergency Room and pharmacy that are covered by your insurance.
  6. Order a MedicAlert ID. Wearing a medical ID band could be lifesaving if you have an emergency and can’t communicate your medical history. Plus – they have tons of cool, sporty designs for under $30.

 

One month before you go:

  1. If you have a pacemaker or defibrillator, notify the Pacemaker Lab of your upcoming relocation.
  2. By now, you may have met your new roommate(s) either online or in-person. Take this time to let them know about your heart history. It’s important to have those closest to you know this about you so they can get you help, if needed.shutterstock_317941118
    • Remember – they might have their own medical conditions to share with you.
  3. If you have been contacted by your Resident Advisor (RA), let her/him know your heart history, too. Be sure you inform them shortly after arriving on campus.
  4. Refill your prescriptions. Go to college with a full supply.
  5. Contact your chosen cardiologist near your college. Set up an appointment around your arrival, if needed.

 

Arriving on Campus:

  1. Be sure your roommate(s) are aware of your heart history. Answer their questions, or explain what’s private versus what they need to know.
  2. Touch base with your RA and Student Health. Ask them where AEDs are located on campus, and locate the one closest to your room.
  3. Find the closest insurance-covered pharmacy. Inform your cardiologist and PCP of that pharmacy’s telephone and fax numbers. Do a practice run to the nearest Emergency Room.

 

Life on Campus:

  1. As you get to know people and establish close friends, let them know about your heart condition. It’s important that those you spend time with know how to help you.
  2. Get flu shots every Fall, and let your PCP’s office know you received it.
  3. Caffeine, marijuana, alcohol, and other stimulants can cause arrhythmias. Be cautious.
  4. Stay hydrated, exercise as directed, and get plenty of rest!
  5. Never ignore any symptoms!  Report to Student Health or call your cardiologist. Don’t wait! Early intervention can help prevent serious problems.
  6. Weekend road trip or Spring Break? Be sure to take your file of information with you when you travel.
  7. Most important of all — Have Fun! 

 


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. Our 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 us at HLHS@mayo.edu to learn more.


Meet other people talking about HLHS or CHD on Mayo Clinic Connect – an online community designed to help patients and families connect with each other.  Our community is a safe space to share experiences, ask questions, find answers, and exchange support.  The discussion groups and topic pages are moderated to ensure that all posts are respectful, and Mayo Clinic Connect never sells or shares posted information to third parties.  Here are some you might like to follow:

Mon, Jan 6 9:40am · Interview with Tim Nelson, MD, PhD - Director of the Wanek Family Program for HLHS in HLHS

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2020 marks the 10 year anniversary of the Todd and Karen Wanek Family Program for HLHS at Mayo Clinic! To kick off the celebration, I sat down with the program’s director, Dr. Tim Nelson, for a look back at the first 10 years – and a sneak peek at what’s coming next.

 

Tim, take us back to the beginning. How did you first meet the Wanek family?

I had the privilege of meeting Todd and Karen Wanek back in 2009. The family had long been patients of Mayo and were here looking at what was being done in the research community, specifically in the Mayo Clinic Transplant Center. They wanted to know what’s being done to change the way we take care of congenital heart disease (CHD) patients in the future.

We got to talking and I showed them the lab, and before we knew it, we were proposing a grand plan for them to fund a transformative program to do something that had never been done before. It was kind of a fast and furious introduction and planning of the program in 2009.

 

What inspired you to help create the Wanek Family Program at Mayo Clinic?

I was a medical student at the Medical College of Wisconsin in Milwaukee in the late 1990s and they were well-known for their care of complex CHD. I was actually aspiring to be a cardiothoracic surgeon, but I was doing my PhD in research at the same time and realized that many of the treatments we did were quite simple – even old-fashioned – and the outcomes of our patients were not what anybody wanted.

We were doing research with cell-based technology because Dr. James Thompson in Madison had developed the first embryonic stem cells in 1998. So there was a lot of excitement in Wisconsin about the future of stem cells. Then I came to Mayo with the Clinician-Investigator Training Program and got more involved in research. So when I met the Wanek Family, it was perfect timing because technologies had developed to the point where there was a real chance at bringing cell-based therapies into clinical practice. It was that vision that led us to double-down on research innovations as the pathway forward.

 

What have been your “Top 3” highlights with the HLHS Program over the last 10 years?

That’s hard to answer because there have been so many! And sometimes one that you don’t think is a big deal actually becomes the thing that unlocks the future.

One, for sure, was just meeting the Wanek Family, and the moment when they agreed that we could do something massive together. I remember that being an awesome opportunity, but I also immediately felt an awesome responsibility to do something that no one had ever done before.

The next was the day we got the call from the Food & Drug Administration (FDA) that our first clinical trial was approved to open. Clinical trials take years of planning, so that moment and that sense of accomplishment with our team was an awesome responsibility once again.

But the responsibility of what we’re doing culminates in the greatest highlight of all – actually treating each and every patient. Our work is about giving families hope that they didn’t have before. And that’s another level of responsibility that everyone on our team appreciates.

 

With over 60 people in the Program, we have the largest HLHS-focused research team in the world. But we’ve also now created the nationwide HLHS Consortium. For anyone who doesn’t know or still has questions, what is the HLHS Consortium?

That’s a great question to clarify because the HLHS Consortium is a unique group. We realized that our program had built an incredible infrastructure to support research.  However, the rarity of HLHS means that each hospital only sees few of these patients each year.  So although Mayo has a great heritage of breakthroughs including the heart-lung machine and outstanding clinical practice, the size of our practice here was just too small to support our research by itself. So we started expanding to more institutions to include more patients in our studies.

The HLHS Consortium today spans the country and includes hospitals and advocacy groups that are committed to providing the best care for CHD patients. But they’re also committed to innovating and transforming the future of HLHS and CHD with new products and services. So it’s a really unique club that works together to expand technology to our patients.

The identity, direction, and focus of our Program at Mayo Clinic will always be HLHS. But the Consortium allows us to expand to other sites, and also allows us to start taking on other challenges in the congenital heart world so we can enhance the impact of what we’re doing beyond just HLHS. I think this is the really exciting part of where we’re going – our HLHS-focused work at Mayo will help guide us as we take on other CHD problems with groups across the country.

 

What are you working on right now that people can look forward to in 2020?

The pride of what we do is clinical trials and offering hope to families. As of today, we’ve treated 70 patients with CHD in four different clinical trials. Our goal is to continue to increase the number of patients treated, and doing that takes new protocols, new treatments, and new products. What we talk about on a daily basis around here is “What is the next clinical trial? Where do we go? How do we do better with our resources and technologies?”

We’re developing new trials that we expect to announce in 2020. Looking beyond this year, I anticipate that we’ll move toward bioengineered cells where we can actually create beating, contracting heart tissue from induced pluripotent stem cells, and that we’ll start printing and making tissues or constructs that will be surgically applicable. This is our commitment and the next frontier, and our team’s experiences over the past 10 years will help us to more aggressively take on the new technology that’s coming.

 

On that note, when we talk again in 2030, what do you hope will have been the “Top 3” moments of the HLHS Consortium and our work?

I envision that there will be a day when, as much as we celebrated the first FDA-approval to open a clinical trial, we will be celebrating much bigger when we have FDA-approval for a product. When the product goes beyond the testing phase and becomes a standard operating procedure for all patients, that’s the goal that we’re all working towards.

In addition, I can imagine the stories of hope from patients across the country, and maybe even the globe, as we pioneer new products. One product isn’t going to be the solution for all patients, so the goal is building a sustaining ecosystem in which developing one product leads to us being able to research and develop five more products. Those are definitely going to be the accomplishments that we look back on with pride.

It’s amazing how fast 10 years goes! Day to day, we can lose sight of what our teams have accomplished and the massive amount of work that everyone does. To have our infrastructure and ability to do important work for CHD patients is a real privilege, and we’re grateful to the Todd and Karen Wanek Family for their commitment and allowing us to do what we’re doing together.

 

Stay tuned for some exciting announcements from the HLHS Program and Consortium this year!

 


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. Our 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 us at HLHS@mayo.edu to learn more.


Meet other people talking about HLHS or CHD on Mayo Clinic Connect – an online community designed to help patients and families connect with each other.  Our community is a safe space to share experiences, ask questions, find answers, and exchange support.  The discussion groups and topic pages are moderated to ensure that all posts are respectful, and Mayo Clinic Connect never sells or shares posted information to third parties.  Here are some you might like to follow:

 

 

 

Dec 9, 2019 · Your Guide to Children in Research in HLHS

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Demystifying Clinical Trials Series – Part 4
The research world can seem confusing or overwhelming at times. Our ongoing series is designed to give you the information you need and help answer common questions. Part 4 in this series focuses on research involving children, and the special regulations that are in place to protect them. You can find our previous posts here: (Part 1, Part 2, Part 3).

 

The Importance of Children in Research

Clinical research is the formal process through which doctors and scientists study diseases and develop better treatments. However, most diseases that get studied – and most drugs and doses that get developed – are only tested using adults.

But children aren’t just little adults. Their bodies grow and change in ways that are very different from adults. For example, new research is showing that infants’ heart cells have a much greater potential for regeneration than adults’ hearts. So it’s vital that researchers design studies specifically for children.

“Children need clinical trials that focus on them, as medical treatments and approaches often differ for children. For example, children may need lower doses of certain medicines or smaller medical devices. A child’s stage of development also can affect how safe a treatment is or how well it works.” – National Heart, Lung, and Blood Institute (2019)

 

Protections for Children

Children aren’t just little adult, and the Department of Health & Human Services has special legal regulations to ensure that children (and pregnant women) are kept safe. For example, these rules require an Institutional Review Board (IRB), the impartial group that reviews and approves research studies, to look more closely at research involving kids and evaluate the potential risks and benefits more closely. There are also special requirements for both parents and children to agree to participate. This is called giving “consent” and “assent”.

Consent: The process that gives a research participant all the information s/he needs to make an informed decision about whether to participate in a study.

Assent: An additional process for children ages 7-17 to make sure s/he understands the study and is comfortable participating. Most institutions have a separate document that explains the study in kid-friendly language, and the research team and parents will work together to ensure the child understands.

In most cases, a child under the age of 18 cannot sign a legal consent form agreeing to participate in a research study. However, they can participate in research with their parents’ permission.

 

The Rights of Patients and Parents

It’s important to note that while “assent” is not a legal requirement, most IRBs require it for research involving children. If assent is required for participation in a study, the parents must give legal consent and the child must give assent. If a child declines to give assent, they are not allowed to participate in the study even if the parents give legal consent.

In all research, at least one parent must give consent for their child to participate. In some studies, both parents must give consent. Parents have the same rights as the child to understand the study completely, ask questions, get results of the study – and say “no”.

Some good questions to ask before considering participating in research include:

Why am I (or my child) eligible for this study? Does my doctor recommend this study for me?
What are the possible risks? When will we be told about the results?
What are the potential benefits? Will the tests hurt?
How does this study compare to the normal standard of care? Am I eligible for other studies?
Are there extra tests or visits needed for this study? Can we talk to a doctor who is not a part of this study?

Connecting with Other Parents

Some studies now have websites or social media pages to provide more information and allow participants to connect with each other and share their experiences. For example, the Mayo Clinic HLHS Program has a private Facebook group for families who have joined our stem cell trial. The National Institutes of Health has a Facebook page “to increase understanding of research in kids and help families make informed decisions about participating in a pediatric study.” In addition, most physician researchers keep a list of previous study participants who are willing to share their experiences with new patients, and you can ask to talk to them.

“We felt very passionate about getting involved with the study right away because there was someone before our son who paved the way to get him to where he was. So we felt very connected to that, and it was important for us to make sure that he was a part of this study.” – Staci Strand, 2019 Feel the Beat Panel Guest

We are grateful to the families who are involved in our research work! This year’s Feel the Beat event featured a panel discussion with three families whose children participated in our Phase I stem cell delivery clinical trial. You can watch their conversation – and hear Dr. Tim Nelson discuss our current and future research – on our Facebook page.

 


Meet other people talking about HLHS or CHD on Mayo Clinic Connect – an online community designed to help patients and families connect with each other.  Our community is a safe space to share experiences, ask questions, find answers, and exchange support.  The discussion groups and topic pages are moderated to ensure that all posts are respectful, and Mayo Clinic Connect never sells or shares posted information to third parties.  Here are some you might like to follow:


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. Our 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 us at HLHS@mayo.edu to learn more.

 

Nov 25, 2019 · Children's of Alabama Joins HLHS Consortium in HLHS

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BIRMINGHAM, ALABAMA — Mayo Clinic’s Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) and Children’s of Alabama are proud to announce their collaboration within the HLHS Consortium to provide solutions for patients with HLHS. The consortium aligns regional medical centers of excellence and advocacy groups with the shared goal of bringing groundbreaking new research and treatments to individuals affected by congenital heart disease, including HLHS. Children’s of Alabama is now the 10th member of the consortium.

 

“The HLHS Consortium is a movement of inspired leaders who believe we can do things differently,” says Tim Nelson, M.D., Ph.D., director of Mayo Clinic’s Program for HLHS. “We are expecting to do things faster than ever before, and we know that bringing in the hardworking efforts and outstanding outcomes of Children’s of Alabama will help enhance our research.”

 

HLHS alabama leadersFrom left: Dr. Waldemar F. Carlo, Dr. Tim Nelson, Children’s of Alabama CEO & President Mike Warren, and Dr. Robert Dabal.

 

“The heart specialists at Children’s of Alabama combine knowledge and experience to care for infants and children with hypoplastic left heart syndrome, and we are excited that this new collaboration with Mayo Clinic gives us the opportunity to continue paving the way for more research about congenital heart defects,” says Dr. Waldemar F. Carlo, a pediatric cardiologist at Children’s of Alabama. “Joining this esteemed group of health care providers brings us closer to even more resources for our patients and their families.”

 

You can read more about this exciting collaboration 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. Our 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 us at HLHS@mayo.edu to learn more.


Meet other people talking about HLHS or CHD on Mayo Clinic Connect – an online community designed to help patients and families connect with each other.  Our community is a safe space to share experiences, ask questions, find answers, and exchange support.  The discussion groups and topic pages are moderated to ensure that all posts are respectful, and Mayo Clinic Connect never sells or shares posted information to third parties.  Here are some you might like to follow:

 

Nov 19, 2019 · Cincinnati Children's Hospital Joins HLHS Consortium in HLHS

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CINCINNATI, OHIO — Mayo Clinic’s Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) and Cincinnati Children’s Hospital Medical Center are pleased to announce their collaboration within the HLHS Consortium to provide solutions for patients with HLHS. The consortium aligns regional medical centers of excellence and advocacy groups with the shared goal of finding solutions for individuals affected by congenital heart disease, including HLHS.

 

“We’re excited to collaborate with Dr. Tweddell and the team at Cincinnati Children’s Heart Institute,” says Tim Nelson, M.D., Ph.D., director of the Program for HLHS. “They are not only a center of excellence for the early-stage HLHS surgeries, but they also provide high quality, comprehensive care for teens and adults with congenital heart disease. We’re proud to work together with them to find new ways to strengthen the hearts of individuals with HLHS.”

 

You can read more about this collaboration 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. Our 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 us at HLHS@mayo.edu to learn more.


Meet other people talking about HLHS or CHD on Mayo Clinic Connect – an online community designed to help patients and families connect with each other.  Our community is a safe space to share experiences, ask questions, find answers, and exchange support.  The discussion groups and topic pages are moderated to ensure that all posts are respectful, and Mayo Clinic Connect never sells or shares posted information to third parties.  Here are some you might like to follow:

Nov 13, 2019 · New Long-Term Guidelines for Patients after Fontan in HLHS

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“Evaluation and Management of the Child and Adult with Fontan Circulation: A Scientific Statement from the American Heart Association.” Circulation.2019; 140:e234-e284

The American Heart Association (AHA) recently proposed new guidelines for how patients with Fontan circulation should be monitored for potential complications. The article also proposed a “Fontan Circulation Surveillance Testing Toolkit” to guide physicians on which tests should be performed and when.

Lynn Cern, RN, is a nurse research coordinator with the Mayo Clinic HLHS Program. She reviewed the new guidelines and has summarized them below. She also developed a convenient, printable checklist with these questions for your cardiologist that you can find on our website!

 


Guest Writer – Lynn Cern, R.N.

The medical community does a good job preparing you for the sta20982194[1]ged surgeries that are needed with a functional single ventricle. Those stages are completed when you leave the hospital after the Fontan operation. Then what? Of course, there are the post-operative clinic visits, but what happens when your cardiologist tells you that you don’t need to be seen for another six months, or even a year?! Regular and frequent visits to the cardiologist have been a way of life for at least the first three years of life. But once you’ve gotten through the “planned” or “anticipated” tough stuff, you may start asking “Now what do I do??”

 

Primary Care

First, make sure you have a Primary Care Physician (PCP). A PCP is a physician (pediatrician, family practice, or general internist), an advanced practice registered nurse (APRN), or a physician’s assistant (PA). You want your PCP to be someone you can trust, communicate well with, and hopefully even like.

Topics that need to be established with your PCP include:

  • The cardiologist: Your PCP must know who your cardiologist is, and accept that it is the PCP’s responsibility to keep communication open in both directions with your cardiologist. Be sure that records of any problems and routine care are sent to your cardiologist’s office. Your cardiologist needs to be informed of any necessary or elective procedures or surgeries. Any new medication also needs to be reported to your cardiologist.
  • Methods of communication: Establish the best way to communicate with your PCP. Should we email or call, or use an online patient portal? Should it be through ancillary staff (nurse or secretary)? How should I communicate if I have an emergency? When do I need to go directly to an Emergency Department? (Have a plan ahead of time and know where the closest Emergency Room is.)
  • In their absence: Who will cover or help in your PCP’s absence?

 

General Health Topics

Vaccinations, including annual flu shots, must be kept up to date!

Dental care is essential for the rest of your life. Regular cleanings are part of good dental care. Be sure to establish with your cardiologist whether you need to take antibiotics before dental visits. Have your cardiologist or PCP provide a standing prescription to your pharmacy that can be filled when you need it. Similarly, if you need antibiotics before the dentist, you will probably need them before other planned procedures. Always check with your cardiologist if you plan a surgery or invasive procedure, including tattoos and piercings.

Many drugs can compromise heart function or cause heart rhythm problems. This includes non-prescription (over-the-counter) medications and recreational substances. Patients after Fontan should have their cardiologist assess any new medications or substances.

Plan ahead: Whether traveling or relocating, have a plan to inform a new caregiver about yourself. Keep copies of current EKGs and echocardiograms. Make a list of all your surgeries and all medications you are taking, and keep it updated.

Your Cardiologist: If your cardiologist is a pediatric cardiologist, you may need to transition to an adult congenital cardiologist at some point. Some congenital cardiologists are board certified or trained to care for both children and adults, and can care for you into adulthood.

Staying Fit! It is crucial that post-Fontan patients stay physically fit! Find the method of exercise that works best for you, one that you enjoy. Follow healthy eating guidelines. Overweight or obese patients after Fontan have an increased risk of developing some of the problems known in patients after Fontan.

 

Long-Term Assessment of the Adult Patient after Fontan

The following topics are areas/body systems that need to regularly be assessed in a patient after Fontan. Your cardiologist should monitor and you should report any symptoms associated with these areas:

  • Atrioventricular valve regurgitation – the valve between your atrium (upper chamber) and ventricle (lower chamber) can have problems due to leaking.
  • Arrhythmias – You may or may not feel palpitations (your heart beating fast or irregularly). This can lead to shortness of breath, lightheadedness, or passing out.
  • Brain and Neurocognitive Development – Several factors contribute to brain and neurocognitive development, which put the patient after Fontan at increased risk for deficits. Early testing and intervention help identify tools needed to optimize the Fontan patient’s potential.
  • Cyanosis – Your cardiologist will monitor your oxygen saturation. After Fontan operations, the typical person has an oxygen saturation of 90-94%. If it is lower, you are “blue” or more cyanotic. This can lead to complications and the cardiologist may discuss further testing, such as cardiac catheterization.
  • Exercise and FitnessExercise is essential for patients after Fontan!!!! Overweight Fontan patients do not do well long term. Regular exercise and fitness will help the Fontan patient grow, develop, and maintain good bone health, Be sure to discuss specifics with your cardiologist.
  • Ventricular dysfunction – Ventricular function is generally assessed on echocardiogram, or other imaging testing. If your ventricular function decreases, your medications may need to increase or change.
  • Protein-losing enteropathy (PLE) & Plastic bronchitis – PLE is the abnormal loss of protein from the body, usually in your stool. Plastic bronchitis causes a thick material to build up in the breathing tubes of the lungs causing a chronic productive cough and increased cyanosis.
  • Renal dysfunction – Fontan circulation, toxic medications, and many surgeries can lead to decreased kidney function.
  • Contraception and Pregnancy – Early identification of whether a female Fontan patient should become pregnant is essential. Preventing a pregnancy by prescribing low-risk contraception is also crucial, as well as genetic counseling. ALL women with a Fontan need to discuss these issues with their cardiologist BEFORE thinking about becoming pregnant.

 

Other adult illnesses: Just like other adults, the adult patient after Fontan will encounter other health problems: gall bladder issues, appendicitis, orthopedic issues, and gastrointestinal issues to name a few. How should they be handled? Make sure your cardiologist is always involved, and that any provider who cares for you has your complete and current medical history.

Converting YOUR Fontan: Was your Fontan completed before 1990? You may be a candidate for a revision of that surgery.

Transplantation: Though it is something no one likes to think about, cardiac transplantation can be an option for the failing Fontan, especially for those suffering from PLE. Your cardiologist should monitor your heart function to incorporate all other possible treatments to delay or prevent the need for transplant. However, if transplant is needed, your cardiologist should have an open and honest discussion with you about which hospitals specialize in transplant and have the highest volumes and best outcomes.

 

 

Oct 31, 2019 · Interview with Kate Praska, RDMS – Obstetrics Sonographer (Part 2/2) in HLHS

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October is Ultrasound Awareness Month. Because 60-70% of HLHS cases are diagnosed in utero by ultrasound, the ultrasound sonographer often plays a crucial role in a family’s HLHS journey.  Earlier this month, we shared Part 1 of our interview with Kate Praska, RDMS, an obstetrics (OB) sonographer at Mayo Clinic. Below, she tells us about the training, challenges, and what keeps her interested in this exciting field.

 


 

What got you interested in this job and what keeps you interested?

My first job was mainly in OB and then I worked in a high-risk clinic, which is where I became passionate about the heart. And the job is still really challenging, but yet it’s rewarding and fun! The majority of babies are perfect and it’s a blast. Even when there’s something minor that means they need to come back for another scan, it’s like, who doesn’t want to come back and see their baby again? I have an ultrasound picture of my 28-yr old son, and he still looks like he did in the image!

What’s also changed is that people used to come in and not say very much. But now the job has really changed into more entertainment. People want 3Ds, 3Ds of the face, 3Ds of the legs, they want to know why their friend got a better picture. And I do want to make that exam fabulous for them! When I have a fun patient come in, we have a blast! But if I have someone making a lot of demands, or if I need mom to be on her side so I can look at the baby and she’s complaining about not being able to see the screen, my first and foremost goal is that I want to make sure that anatomy is ok. That’s what I’m there for. But I wouldn’t be in this field if I didn’t love it!

 

What kind of training does a sonographer need?

I graduated in 1989 and have been scanning ever since. Back at that time, one would have gone through x-ray training for 2 years and become registered. Then if you wanted to specialize in ultrasound, you would go back through a one year program that was strictly ultrasound and then become registered. At that time, it was a nationally certified program, so you took your national boards. We didn’t have computers much then, and I had to drive to Chicago to take mine! And now it has progressed to a bachelor’s program.

 

What’s the most challenging part of your job?

The hardest part is the position of the baby. Ultrasound works using sound waves, and it’s helpful if you can go through fluid or get close to what you’re taking a picture of. But if the spine is facing up and the heart is down, then it can be very difficult to look at the heart. So we’ll flip patients around to try to get the chest of the baby up so we can get a better look at it. It seems silly when we ask people to come with something in their bladder, but it acts like a window for us and takes the bend out of the uterus to help us see better.

If a patient weighs 300 pounds and I’m trying to look at something that’s as big as my thumbnail, that can be hard. We can sometimes push into the abdomen to get closer and see better, but that’s understandably uncomfortable. But if there’s six inches between the baby and my transducer it can be hard to see the baby’s heart. Sometimes we can scan through the belly button or on the side of the abdomen instead. Also, some people’s skin just scans differently. For example, diabetic patients’ skin seems a little tougher, and some ethnicities have skin that scans differently. Sometimes we bring patients back to reevaluate, not because we’re concerned, but because we may need more time for the baby to grow so we can see better.

 

What’s the most important thing that you tell the students you work with?

Even as I get older, I don’t just want to do easy cases. I still like to be involved in challenging and complex work because it keeps me on my toes and forever learning. I tell students all the time, if I see them going fast, I say, “Ok, you’re fast now. But your pictures are sloppy. What are you going to do if you miss something?”

I know we sound difficult sometimes when we want people have to have a full bladder, lay in an uncomfortable position, or are annoyed if they want to be entertained the whole time. But in the end, I’m there to make sure the baby is healthy. Once we can check all the little boxes in our head, then we can entertain away!

comparison

 

How many people want to know the sex?

It’s totally changed again. It went from not wanting to know, to wanting to know, then we had the gender reveal trend. I had one patient ask me to call the local bakery and I got put on hold for five minutes. It was such a busy day and I got so far behind, so now we just put it in an envelope. But I’d say today it’s about 50% want to wait for it to be a surprise. They say over in labor and delivery now, it’s so much fun!

 

Thanks for your time, Kate!

 


Meet other people talking about HLHS or CHD on Mayo Clinic Connect – an online community designed to help patients and families connect with each other.  Our community is a safe space to share experiences, ask questions, find answers, and exchange support.  The discussion groups and topic pages are moderated to ensure that all posts are respectful, and Mayo Clinic Connect never sells or shares posted information to third parties.  Here are some you might like to follow:


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. Our 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 us at HLHS@mayo.edu to learn more.

Oct 29, 2019 · Interview with Kate Praska, RDMS – Obstetrics Sonographer (Part I) in HLHS

 

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October is Ultrasound Awareness Month. Because 60-70% of HLHS cases are diagnosed in utero by ultrasound, the ultrasound sonographer often plays a crucial role in a family’s HLHS journey. I sat down with Kate Praska, RDMS, an obstetrics (OB) sonographer at Mayo Clinic who has 30 years of experience. While she primarily performs routine OB ultrasounds, she’s also board certified in fetal cardiac echocardiography. Below, she shares her thoughts on ultrasound technology, how the job has changed, and her connection to her patients.

Below is Part I of our interview — check back later this week for the concluding Part II!


 

Hi Kate, thanks for talking with me! Can you start by giving us an overview of fetal ultrasound? When is it done, what do you look for, what’s the process like?

Sure. While ultrasound can be used in a pregnancy as early as about 5 weeks gestation, the first scan is usually done in the first trimester around 7 weeks for dating, and the anatomy scan is done at 18-20 weeks. That scan is the most important because it’s essentially “baby’s first physical.” We do a very detailed evaluation of all anatomical structures to make sure the baby and pregnancy are progressing normally. At our site, we have been implementing a first trimester anatomy scan to evaluate for any large fetal defects.

If everything looks good and there are no other concerns, then patients might not have another ultrasound. So it’s incredibly important that we get a good look at everything during that visit.

 

What happens if you see something that doesn’t look right?

First and foremost, it makes me look at things more thoroughly. If I’m scanning and the heart looks funny, I’m going to look at everything that I possibly can on that baby. If I see a definitive heart defect, I tell the patient and then tell them I’m going to have the high-risk doctor come in and speak to them. The doctor comes in and talks to the patient, and then we call Cardiology to get them in for an echocardiogram as soon as possible.

Patients might get a little worried when I tell them we want to take a closer look at something, but I don’t want them to have a concern that we missed something or send them home thinking everything is perfect. I also want them to start preparing and thinking of questions to ask the doctor.

At some smaller clinics, the sonographers aren’t allowed to tell the patients anything, and they instead have to contact the obstetrician and have them arrange follow-up. Our clinic is an OB/Maternal Fetal Medicine department that has all high-risk specialties readily available to care for the patient (MFM doctors, nurses, genetic counselors, etc.). In the case of heart defect, we often times can get the patient in for a fetal echocardiograph that same day. But even if they can’t get in for an echo that day, that’s ok because they can usually see them within a few days. This gives them time for further testing and they can think about more questions, or make sure their significant other is there or bring an additional person so they have more sets of ears.

 

Most people can’t tell a head from a foot in an ultrasound. How hard is it to see HLHS in utero?

We can sometimes see it at the 20-week scan if we get a good picture. The best way to describe a lot of heart disease is that it’s “progressive.” For instance, I could scan a patient at 16 weeks and the heart could look normal. But sometimes it’s caught later as the rest of the heart is growing and one part isn’t. There are also some defects that don’t show up until the third trimester. Other times, a baby goes in for its three-month check-up, and they hear a heart murmur. Now, if they hadn’t seen it when the baby was a newborn, imagine us looking back at 20 weeks gestation.

There was one particular baby with HLHS that I scanned a few years ago. It was around 19 weeks and the four heart chambers all looked fine, but I just had an odd feeling. There was one view where the left outflow tract, which becomes the aorta, ballooned out a bit as it came out and the mitral valve seemed a little bright. I just didn’t feel comfortable, so I asked the high-risk doctor who suggested doing a fetal echocardiograph, and they were able to diagnose the HLHS.

Our policy now is that we only let one other person in the room during the scan. I’ve worked at places where they allowed more than one person, and if there are a lot of people, the room gets loud, and the mother might be turning her body to visit with relatives and laughing. Some people think it’s rude that we don’t allow more guests, but if I missed something on a baby, I would honestly feel horrific. It’s a medical procedure to thoroughly evaluate the fetus, mother, and pregnancy, and we need to be sure we can concentrate and do our job well.

 

Does diagnosing HLHS or other conditions in utero change the course of prenatal care?

Yes, and that’s why I’m very passionate about the heart in particular because early diagnosis means patients can get the treatment they need. In some cases, they can undergo surgical interventions in utero to correct a defect or help the heart grow better before birth. There are many fetal anomalies where an early detection completely changes the course of the delivery. These can include: genetic testing, more ultrasounds, specialty nursing care, social work, fetal surgery, or moving closer to a specialty hospital or clinic to deliver.

It’s also so important for a baby to be delivered at a specialty care center and have the right staff available. Some of these babies are taken to surgery right away or are put on medications and taken to the neonatal intensive care unit. If a baby is born at a small hospital or there’s no knowledge of the defect, it can be the difference between life and death.

 

How much has ultrasound changed?

It’s changed a lot. When I started, we really didn’t do any vascular scanning. It wasn’t until I was finishing my training, and a doctor asked me to go scan an adult liver using vascular ultrasound (I had no training because it was new), and I thought, “Sure, why not?” (laughs) So we learned as we went. I don’t really feel like the kids that are getting out now are any smarter than someone who’s been doing this for a long time has the experience and has seen everything. You know when something just feels “off.”

And ultrasound itself has progressed. When I started, we used to look at the back of the head for several structures but not the posterior fossa. For spinal defects, we looked at the spine. But I worked at a high-risk clinic in Seattle, and I remember calling my class friend and saying “We’ve got to be looking at the back of the head, because if the posterior fossa is abnormal, it means the spine is abnormal!” And we didn’t have the internet yet, so I sent her pictures in the mail and we incorporated everything new that we learned as ultrasound progressed.

 

Are the pictures better today?

Definitely, you can see a lot more. We look at the lens of the eye now, we’re trying to get better with the palate, we can see the lip pretty well. But in all honesty, I once missed a cleft lip and we went back and looked at my pictures and they looked totally normal. I asked the doctor how that was possible, and he explained that sometimes if there’s a cleft, the skin can fill the spot and it wouldn’t have been visible on ultrasound. So in the end, ultrasound “describes” it doesn’t “diagnose,” and it’s not perfect.

 

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Four-chamber view of HLHS at 30 weeks gestation in 2D (A) and color Doppler (B) imaging. In this case, the diminutive left atrium (LA) and left ventricle (LV) with wall hypertrophy are seen (A) and in color Doppler some blood filling of the LV is recognized in diastole (B). RV, right ventricle; RA, right atrium. https://obgynkey.com/hypoplastic-left-heart-syndrome-and-critical-aortic-stenosis/

 

Check back later this week for the concluding Part II!

 



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. Our 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 us at HLHS@mayo.edu to learn more.