Supporting Young Hearts

Psychologist Carlye Weiner, has provided excellent information on trauma and how it impacts the brain, support, recovery, intimacy and exploring issues around sex for young people living with a heart condition.

• Blog | When the heart gets heavy: Emotional Wellbeing and Heart Conditions

Top recovery tips for young cardiac patients: Read blog here.

When the heart gets heavy: emotional wellbeing and heart conditions: Read blog here.

Exercising for the heart and soul: Read blog here.

Cardiac arrest at 33: the challenges of restarting your life: Read heart story here.

Cardiac arrest at 26: adjusting to a new ‘normal’: Read heart story here.

Cardiomyopathy; another health curve ball for Ange: ​Read blog here.

Looking after your emotional health in uncertain times: ​Read blog here.

Sami Kennedy's heart story: Aiming high after a stroke: Read heart story here.

Overcoming uncertainty: Bianca Beetham’s heart story: Read heart story here.

Family planning, interrupted: Cara Curan's heart story: Read heart story here.

Meet our consumer advisory group

A passionate group of young heart patients help guide the program and are dedicated to helping others through their heart journey.

Please get in contact with us if you would like to:

• Find out more about joining the advisory group

• Connect with the advisory group members

• Provide feedback or suggestions for the program

• Share your story and experiences

Alicia

Alicia lives with a congenital heart condition and has had open heart surgery at 4 years old and again at 29 years old. As one of the founding members of Supporting Young Hearts, Alicia is committed to openly sharing her story and experiences to help others.

‘Having open heart surgery when you’re young can confuse you and leave you feeling lonely, even when those around you are doing their best to understand. Supporting Young Hearts offered me information, purpose and most importantly, connection’. 

You can read more about Alicia’s story here.

Ange

Ange was diagnosed with cardiomyopathy at 38 years old and describes the Supporting Young Hearts community as having your own wolfpack. ‘If you’re having a bad time, you can go into the group, and you will be surrounded by people who understand’. Ange is passionate about helping other young people connect with each other and with the support they need.

You can read more about Ange’s story here.

Marcus

Marcus had a heart attack at 36 years old, followed by open heart surgery.

Marcus found joining the community as the place where he met his two ‘heart heroes’. ‘The support and information they gave me to go through open heart surgery calmed my nerves and guided me step by step. I can’t express how much this helped me get through such a tough time’.

Marcus is passionate about paying it forward and helping other younger people through their heart journey.

Nicola

Nicola experienced a heart attack at 38 years old. She has since had multiple stents inserted to unblock her artery.

After meeting other young people who have heart conditions, Nicola realised she is not alone. ‘I have met many beautiful souls, people who continue to support my journey; we all share a unique heart story or experience. It’s amazing who you meet.’ Nicola is dedicated to raising awareness of the warning signs of a heart attack, particularly for women and the challenges of living with a heart condition at a younger age.

Nicola enjoys getting out in nature with her family (including her two young boys) and going on hikes and bike rides.

Goran

More details to follow.

Melanie

More details to follow.

Caitee 

Caitee was diagnosed as having Partial Anomalous Pulmonary Vein Drainage at 26 years old. This was picked up early and by chance. When Caitee was younger, she had had some abnormal findings on scans, but they were in the grey area and never followed up. Her condition was picked up by a different cardiologist during her follow-ups as an adult. Caitee is lucky to have been given her diagnosis prior to any irreversible damage occurring to her heart.

On the other hand, Caitee faces the question of whether to operate or not to operate. There are many different opinions, and it is hard to know for sure because no one can predict the future! Caitee spends most of her workday with other heart patients and can so relate to the whirlwind of emotions associated with having cardiac investigations. She places a lot of value in the importance educating patients on what is involved in the tests and what kind of information it gives the treating doctors. 

Caitee is excited to join the Supporting Young Hearts Advisory group, where she can continue to support and educate other young people living with heart conditions.

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Let’s talk about sex and intimacy! 

Sexual health concerns are common in people with all types of cardiac conditions, such as coronary artery disease, heart failure, after a heart attack and people with implantable devices such as defibrillators or pacemakers.  

Sexual health is important for your emotional well-being and intimate partner relationships.  We’ve got some information and tips to help you talk to your partner and health professional. 

Steps to improve your sexual health 

Communicating with your partner

It’s important to communicate with your partner about your sexual concerns. 

Many patients are fearful or anxious about resuming sex or have concerns about sexual performance after a cardiac event.  

Physical changes in appearance, surgical scars, and body image concerns are also common and may interfere with sexual activity. For patients in a partnered relationship, open and honest communication with your partner about your concerns is an essential first step toward resuming intimacy. Understanding each other’s sexual interests and concerns will allow you and your partner to develop a plan of action that meets both of your needs for intimacy, emotional connectedness, and physical affection. 

Returning to intimacy can be a slow process, but you need to start somewhere. Approach this problem as a couple, and try to keep an open mind to new ideas and experiences. Start by spending time with your partner in ways that focus on physical affection without the expectation of sex. This will help create a romantic mood that leads to a greater sense of emotional closeness and relationship satisfaction.  

If your partner is anxious about resuming sex, listen to their concerns. Try starting off slowly by  holding hands, cuddling, or kissing. As you and your partner become increasingly comfortable with resuming sexual activity, you can gradually incorporate more intimate activities into your relationship. 

Family planning; what do you need to do to prepare? 

A diagnosis, whether congenital condition or something sudden like a heart attack, this issue can get thrown up into the air.  

• You may ask can I have children?  

• How will this impact my heart health or recovery? 

• Will my children have a similar heart condition? 

Yes, there may be so many questions, but first it's important to stop and talk this through with your partner or loved one. Starting a family is a big decision, even if you don’t have a heart condition.   

You also to have this conversation with your doctor about your heart medicines. Some medicines are not safe to take when you are trying to get pregnant. They will also be able to help identify if you may be a high-risk pregnancy due to your heart condition. If you are, they can then help you find relevant health professionals who can support you through this journey.  They may also be able to help you talk through budget as well.  

Add in something about having these conversations early with your cardiac team (even if you are young and it is not on the radar yet…find out as much information as you can)  

Your sex drive: Can heart medicines affect your sex drive? 

We get this question a lot at the Heart Foundation. The short answer is yes,  

• For men, the most frequently reported sexual problems include reduced sexual desire and difficulty achieving and maintaining an erection. 

• And for Women, you are more likely to experience decreased sexual desire, problems with orgasm, vaginal dryness, and pain during intercourse. 

• It is important to talk this through with your health professional, for example your cardiologist, as they may be able to review your medications and see if there are other options. 

• For people who have had heart surgery, cardiac rehabilitation can help both physically and provide emotional support to help increase confidence and decrease anxiety. 

• Having this discussion with your providers to address frequently asked questions will allow you to receive accurate information, suggestions, or professional recommendations to help you overcome these issues. 

Other factors that can impact your sex drive to be aware of are; 

• Emotional distress 

• Fear that it is not safe to be sexually active after a recent heart event or surgery. 

• Relationship problems 

Sexual health is an important quality-of-life concern for patients and their partners, and healthcare providers can often help if they are aware of the problem. 

Your cardiologist may refer you to a doctor who specializes in treatment for sexual dysfunction. Sexual problems can also be a symptom of emotional distress or depression. These symptoms are common and can often be treated with 2 to 3 counseling sessions with a psychologist or mental health provider. Long-term struggles with depression might require additional treatment. Keep in mind that you may need to try 1 or more strategies before you find what works best for you and your partner. 

Having this discussion with your providers to address frequently asked questions will allow you to receive accurate information, suggestions, or professional recommendations to help you overcome these issues. 

My partner is scared to touch me after my surgery, and I am a bit scared to have sex and get intimate too.  

It is important for you to have an open and honest conversation with your partner about any potential challenges or sexual concerns. For example, if you have physical limitations, you should discuss them with your partner, and together you should develop a list of possible solutions or positions that maximize performance and promote mutual satisfaction with the sexual encounter. 

Without knowing your limits your partner may think it is easier to just stay away ,  fearing that sex could cause a problem for you. If you have medical clearance,  – talk it through, tell them how you are feeling.  

Communicating with your health professional 

It can be tough to start conversations with your health professional about sexual problems. However, your health professional understands sex is an important part of life and will be used to talking about it. Speaking with your health professional can help. They will be able to talk with you about your concerns and identify strategies to improve your sexual health and well-being.

The American Heart Foundation has some tips on how to start the discussion with your health professional: 

“I read somewhere that my heart condition could get in the way of intimacy.” 

“I want to be intimate with my partner, but I am worried that it will make my heartbeat too fast.” 

“My partner is concerned that sex is not safe for my heart."  

More helpful resources: 

• CALL THE HEART FOUNDATION HELPLINE ON 13 11 12
• TALK TO YOUR CARDIAC REHABILITATION SERVICE PROVIDER
• SEXUAL HEALTH CONCERNS IN PEOPLE WITH CARDIOVASCULAR DISEASE – THE AMERICAN HEART ASSOCIATION
• SEX AND HEART CONDITIONS – THE BRITISH HEART FOUNDATION
• BODY IMAGE AND SCARS – THE HEART FOUNDATION
• SEX, INTIMACY, RELATIONSHIPS AND HEART DISEASE – THE HEART FOUNDATION
• SEX AFTER SURGERY – BODY AND SOULSEX AFTER SURGERY
• DATING AFTER HEART SURGERY

Downloadable and printable resources are available to help you connect your patients with Supporting Young Hearts.