Hartfelt: Living Life with Congenital Heart Disease

Welcome back! Check out the new episode to celebrate CHD Awareness Day. My friend Jenna Ohrn (from Episode 4) joins me for an informal chat about living life with Congenital Heart Disease. Enjoy!

Hello everyone, 

Welcome to Episode 6. In this episode I interview my therapist, Charu Malhotra (click Charu's name for her Facebook page). We discuss all the emotions we're feeling these days, how to deal with them and ways we can reach out for help. In this episode I also talk about my own mental health journey.

I want to let you know, this podcast may be triggering for some people. Please know, that is not my intention. Rather, I'm choosing to share my story because I'm okay now. I am a survivor and yet, still a fighter. Mental health is not just a temporary thing. It's an every day thing. 

In the episode, Charu mentions a few websites and organizations that you can reach out to for help. Here is a list:

Psychology Today www.psychologytoday.com

Distress Line Ontario http://www.dcontario.org/centres.html

Ottawa Rape Crisis Centre (ORCC) http://www.orcc.net/

Government Mental Health Portal https://ca.portal.gs

In this episode I talk to Heidi Shallow, an end of life Doula from Cornwall, Ontario. We met randomly via Facebook and it just so happens that Heidi has a pacemaker/defibrillator (ICD) as well. How random. 

One of the topics discussed is how to make an advance care directive. These directives (or plans) are so important to have. It tells your loved ones how you would like to pass. It discusses needing medical machines to stay alive, pain control, feeding tubes, etc. It's important to let your advocate (partner, child, mother, father, best friend, etc) know exactly what you want. To start your advance care directive, you can go to www.advancecareplan.ca 

To get in touch with Heidi, you can find her on her Facebook page or you can reach her at [email protected] 

Continue to stay safe and healthy!

Meet Jenna. A phenomenal young lady trying to live a normal life. Learn what Jenna does to make her life appear normal. 

FYI: This episode is quite technical in the beginning. To help, I have posted a glossary of terms along with photos on our social media pages. I hope this helps to explain everything. Even if you don't quite understand Jenna's congenital heart defect, you'll still very much be able to relate to her. 

Search @HartfeltCHD on Facebook, Instagram or Twitter

Hi Everyone, 

So I openly admit that I've had a rough couple days. I've been very sad and angry and in this journal I try and tell you why and what I'm doing about it. I'm not sure that I'm doing a good job, but it's the best I can do right now. 

Continue to stay healthy and smart!

Jen

Here's today's audio journal. 

I'm thinking of you all! Continue to hang in there!

 

Cheers, 

Jen

Top o' the morning to ya!

Happy St. Patrick's day my little leprechauns! Today is one of my favourite days! Listen to find out what I'm doing to celebrate in isolation!

Wishing you much health and happiness!

Jen

 

PS www.cangap.ca is the link I mention in this one!

Hello all! 

I hope you will bare with me. I have decided to share short little "journals" about how I'm surviving Covid 19/Coronavirus. As I'm sure you can appreciate this is a very trying and difficult time for me. I am scared. But I'm determined to face this challenge with my usual smile and zest for life. I hope I succeed. Feel free to listen, or don't as the case may be. I also welcome all of your comments and thoughts about this dreadful virus. 

Here's the link that I mention in this journal. 

www.advancecareplanning.ca

Stay safe everyone. And think of those of us who are unable to fight with the same vigor that you may be able to! 

J.

Patrick and I met randomly one day a couple years ago. We connected online through one of the many available support groups and had a great couple chats. Shortly after that, we were both at the Defibrillator/Pacemaker Clinic at Toronto General Hospital. He came out to the waiting room to ask if I was Jen, but before he could ask, I asked if he loved his backpack for his oxygen. I had just gotten mine and thought it was the best thing since sliced bread. He looked at my funny and said, “are you Jen? I’m Patrick!” That meeting further sparked our friendship and we actually share almost all of the same doctors at TGH. We continue to have long chats about life and how we can make the most of it!

As a side note, throughout the podcast, you will hear beeping. This is from Patrick's oxygen machine and I was unable to edit it out.

Episode 2 features Dr. Hyder Fazal, (Jen's former) pediatrician in Markham, Ontario. Dr. Fazal talks about diagnosing babies before they are born, testing available once they are born and the most common types of CHD. During the interview, Dr. Fazal refers to this website during the interview: aboutkidshealth.ca

Photos are available on our social media platforms. Facebook, Instagram, and Twitter @hartfeltchd