Name: Lizzie

How and when were you diagnosed?

I was diagnosed with ARVC in the middle of a career of ultramarathon running at the age of 31. I started to develop shortness of breath and weakness in my legs during my training runs, and not long after that I passed out alone while doing a mountain run. When I (thankfully) woke up my watch read my heart rate at over 200 bpm and I could feel it pounding in my chest. After over an hour of working my way down the mountain my heart rate finally worked itself out and I was able to go to the cardiologist office, where after many tests, and after a visit to Johns Hopkins I was diagnosed with ARVC. They told me without an implantable cardioverter-defibrillator (ICD) I had a 50/50 chance of survival within a year, as I was in danger of unstable arrhythmias. I got my ICD implanted in January and it gave me my first life saving shock in June of that year while I was hiking with my dog.

What has been the biggest challenge you’ve faced living with ARVC?

Definitely changing my lifestyle was the biggest challenge. I was a very active person and always climbing mountains, running, or riding a bike. I’ve still managed to do these things with ARVC with limitations, much slower of course, and with plenty of breaks and rest.

“While there is no cure for the condition, time does heal some of the pain of memories from pre-diagnosis. There is still life to live.”

What encouragement or advice would you give someone who has just been diagnosed with ARVC?

Give it time. It’s such an overwhelming diagnosis. When I was first diagnosed I was scared, lost and confused. Giving up my athletic pursuits was devastating for me. But after being patient with myself and my heart’s new limitations I have still found joy in life. Try something new. But most of all give it time. While there is no cure for the condition, time does heal some of the pain of memories from pre-diagnosis. There is still life to live. ARVC kills many people and I feel thankful to still be alive.

What would you like other people to know about ARVC?

It can happen to anyone. There is no history of heart disease or ARVC in my family and I am what they call “gene elusive.” I never thought, that as an athlete and a healthy person that a condition like this could happen to me. If you ever feel like something is off please advocate for yourself and get checked out. Previously I had a general doctor pre-diagnosis brush me off telling me I had anxiety. Please speak up for yourself! We know ourselves best. I try to spread awareness for ARVC and heart disease. If it helps one less person die from this condition it is worth it to me. ARVC may have changed my life. But I have found ways to keep on wonderfully living.

Name: Bobbi

How and when were you diagnosed?

In 1999 I had sustained v tach. Was treated with meds and a defibrillator. In 2018 my 16 year old grandson collapsed and died. His autopsy found ARVC. So I was tested and have it. My 3 adult children tested positive for the gene. My son has a defibrillator and my two daughters has loop recorders.

What has been the biggest challenge you’ve faced living with ARVC?

Dealing with how deadly this is and knowing how my Grandson felt before he died is very difficult. I have just went through a episode of v tach that my device didn’t correct. So at the hospital my meds were changed from Solotol to Amiodarone. I had been on Solotol for 22 years and never had any episodes until 3 months ago. I am slowly feeling better on Amiodarone but do not trust that it will keep my heart under control. It’s been very emotional for me and my family.

What encouragement or advice would you give someone who has just been diagnosed with ARVC?

Learn all you can about ARVC. Knowing all about this is a great step in having a normal life.

“It’s been very emotional for me and my family.”

What would you like other people to know about ARVC?

I have lived with this for 22 years and had a great life. I did not know it was ARVC but was medically treated the same as if we knew. I say live your life and and find what you love to do! I love to kayak!

Name: Warren

What has been the biggest challenge you’ve faced living with ARVC?

I was 69 years old, and a runner, when diagnosed with ARVC. The known part of the journey started in July 2007 when I was running and suddenly became out of breath (more than would normally be expected). I quit running, and continued walking toward home, thinking that the issue was likely heat-related. When I got home my condition continued to worsen, and asked my wife to call 911. By the time the paramedics arrived I was in heart attack mode. I was given two (2) shocks, and the situation subsided. Hospitalized for four (4) days, and the cardiologist determined that I had a slight artery blockage and inserted a stent.

I went on my way, and things were OK until nine (9) months later when my wife and I were in Kauai. After a sexual encounter my heart would not slow down, went the other way. Paramedics were again called. This time, no shock, just a strong drug administered. I was medevac’d to Honolulu and a defibrillator was installed. Over the next two (2) years, I would get shocked 6-8 times each year, always after exercise. In May 2010 we were in Borrego Springs, CA, and had gone for a hike. Upon returning to our room we had another sexual encounter, then went to the pool. I got in the pool to swim some laps, got out, and while sitting in the lounge chair, my defibrillator, and it kept going off every 30 seconds for 8-10 times. In meantime paramedics were called, and by the time they arrived. Heartrate had returned to normal. Medevac’d to Escondido, checked out by cardiologist and rep from defibrillator manufacturer to determine whether my device had malfunctioned or I had again experienced heart rhythm issues. The later was concluded, and I was sent home.

By this time I had learned about ablations, discussed prospects with my electrophysiologist at the time who indicated he would not be willing to explore the that alternative because he was afraid that I would die on the operating table. Talked to my cardiologist and got a referral to a new electrophysiologist at Cedars Sinai in Los Angles. He (Dr. Charles Swerdlow) is the one who diagnosed ARVC and did an ablation in August 2010. He is my guy to this day. See him twice each year, have periodic telephone calls, and also have a monitor by my bedside. I have had a genetic test, and no abnormalities were found. Original defibrillator replaced in 2018 (Boston Scientific). I have had two (2) shocks since ablation, one in 2019 and another in 2021. Dr. Swerdlow recently had me wear a heart monitor.

“Make sure that you have an electrophysiologist who is experienced in evaluating and treating your condition.”

What encouragement or advice would you give someone who has just been diagnosed with ARVC?

The long-term emotional effects of this whole process has been PTSD. Make sure that you have an electrophysiologist who is experienced in evaluating and treating your condition. See them regularly and do what they say. Figure out a way to continue with exercise but be willing to dial back the intensity. That has been the hardest change for me, dialing back the intensity. I am still quite active, but at a much slower pace than pre-ARVC.

What would you like other people to know about ARVC?

It’s a journey not a victory. Put yourself in the hands of trusted caregivers and do what they say to do.

Name: Dawn

How and when were you diagnosed?

Sudden Cardiac Arrest on January 6, 2021, followed by genetic testing.

What has been the biggest challenge you’ve faced living with ARVC?

Besides the actual recovery from SCA (strokes, brain damage etc) is knowing how drastically different my life has been in what I am capable of doing physically. In addition finding out that two of my children also have the gene positive DSP mutation for ARVC.

What encouragement or advice would you give someone who has just been diagnosed with ARVC?

Focus on what you can do, not what you cannot do. If you can’t play soccer with your kids any more, grab a chair sit on the sidelines and cheer them on. It sometimes can take more mental agility to live with ARVC than it does to run a marathon or climb Mount Everest. You have to come to terms with not being the same person and focus on the many blessings you have and the things you are able to do. Stay connected to others who have similar diagnosis.

“It sometimes can take more mental agility to live with ARVC than it does to run a marathon or climb Mount Everest.”

What would you like other people to know about ARVC?

Take it seriously. Listen to your body and pay attention to symptoms. It’s not a disease to take lightly as the alternatives can be grim. The disease is progressive in nature so stopping physical activity, taking meds and eliminating stress is critical.

Name: Angie

How and when were you diagnosed?

After my then 19 year old son went into cardiac arrest. He survived and they diagnosed him with ARVC and did genetic testing and found out I have it.

What has been the biggest challenge you’ve faced living with ARVC?

Scared all the time that what happened to my son could happen to me.

What encouragement or advice would you give someone who has just been diagnosed with ARVC?

To really listen to your doctor’s and always listen to what your body tells you and there are never dumb questions. Having a good support system has really helped me. Stay strong you got this❤️

 

“This is a hard disease to live with. We are going to have our good days and our bad days.”

 

What would you like other people to know about ARVC?

That this is a hard disease to live with and that we are going to have our good days and our bad days and we just need everybody to be supportive and understand.

Name: Robin

How and when were you diagnosed?

2019 genetic testing to r/o ARVC for children.

What has been the biggest challenge you’ve faced living with ARVC?

Guilt associated with passing it to my children.

What encouragement or advice would you give someone who has just been diagnosed with ARVC?

There is hope and better days ahead!

Name: Jeff

How and when were you diagnosed?

Diagnosed at age 55 in 2012 while working out the gym. Collapsed, never lost consciousness. Taken to ER shocked 3x. Had heart cath next day, had ultra sound and electrical mapping done and ICD installed the following day.

What has been the biggest challenge you’ve faced living with ARVC?

Not being able to exercise. I was a long distance runner and played every sport until my collapse. I walk instead. Anxiety has been an issue probably due to the 30 times that I have been shocked. Have been diagnosed with PTSD.

What encouragement or advice would you give someone who has just been diagnosed?

Live your life and if you need to cut out your exercise to live longer then do it. I suggest joining the ARVC and SADS Facebook groups. Nice to be able to share and console one another there.

“I have run into cardiologists in ERs that never even have heard of it. They have to look it up on their laptops.”

What would you like other people to know about ARVC?

To educate themselves about the disease. To understand that I can no longer do all the things that I did before. I have run into cardiologists in ERs that never even have heard of it. They have to look it up on their laptops.

Name: Nathan

How and when were you diagnosed?

In 2013 after a genetic test. For 5 years prior to this my diagnosis was DCM.

What has been the biggest challenge you’ve faced living with ARVC?

Having to be mindful of my heart/body limitations. As a previous athlete, I can no longer ‘push through’ or over-exert when exercising or doing activities. I was 29 when I got an ICD, which is young in medical terms, so living with this condition is/was always in the back of my mind when thinking about family, life goals, etc. I have lived with an ICD for 14 years now so in some ways it is ‘normal’ for me now. I am comparatively symptom free thus far and able to do most things I enjoy. Still, I somehow feel less whole or capable than if I did not have this condition.

“ARVC deserves attention and funding just like other more well known diseases.”

What encouragement or advice would you give someone who has just been diagnosed with ARVC?

With proper medical care and lifestyle changes you can still be active and enjoy life. ARVC awareness is growing as is the potential for improved treatments.

What would you like other people to know about ARVC?

It is not a death sentence or terminal illness. It presents differently in different people. It deserves attention and funding just like other more well known diseases.

Name: Steve

How and when were you diagnosed?

I was diagnosed during an EP study on 6/24/20, and genotype confirmation a month later in a DNA test indicated the existence of the DSC2 gene mutation.

What has been the biggest challenge you’ve faced living with ARVC?

Turned my world upside down. I was an avid high-level cardio and strength trainer. I have scaled way back on that but I still stay active. I constantly deal with the mental side of the disease (anxiety, depression).

What encouragement or advice would you give someone who has just been diagnosed with ARVC?

Look at the changes in your life as a new challenge that may come with unexpected positive experiences along the way. Don’t dwell on the past and what you thought should’ve been or the distant future that may or may not occur the way you think it will. Live in and enjoy the moment.

“I constantly deal with the mental side of the disease (anxiety, depression).”

What would you like other people to know about ARVC?

It will affect you more mentally than physically. Realize you’re not alone. 1 in 5000 people has ARVC, roughly 1.6 million worldwide. Medical professionals are available for treatment. Cures are being tested (for some gene mutations). Create your own support group. Ask questions. Read about studies that have been done so that you have a full understanding of what you are dealing with.

Name: Jenny

How and when were you diagnosed?

Spring of 2021. I had sought medical advice after I began passing out while playing recreational sports (soccer, ultimate frisbee,…). I knew I was out of shape, but that wasn’t it. My PCP prescribed the full suite of tests: blood work, chest x-ray, echo cardiogram, stress test, and a Holter monitor. I scheduled an appointment with a cardiologist six weeks out so I could chat about my results with a specialist. All my tests came back mostly normal. A few PVC’s, but I was healthy. There had been a delay with my Zio patch so those results weren’t in yet when I saw my new cardiologist. After spending a whole day getting there, he didn’t have much to say. He said I looked relatively healthy and sent me home saying he didn’t even feel comfortable prescribing me any drugs and instead advised me to just stop getting worked up.

Three days later he got my Zio patch results— I got a call Friday evening advising me to check myself into the nearest ER. I was experiencing NSVT (up to 275 beats/min) intermittently. I live on an island so I knew this meant getting flown to Seattle (to where I’d just ferried/driven to have the cardiology appointment!). I was mad. I didn’t want chaos. I resented the emergency being inflicted on me after I’d been the one saying there was a problem all along.

I didn’t go. Not at first. But my family leaned in hard. So I compromised and calmly took the ferry to the mainland. A friend picked me up and served me a huge serving of homemade shortcake and whip cream with fresh strawberries, blueberries, blackberries and raspberries piled over it. We consumed and then she took me to the nearest hospital ER. And so the emergency began.

“Collectively, we can tell you what every step feels like, what other options exist, what hurdles may lie ahead, what has worked well, and what has not. We can fill in the blanks that your doctor inadvertently left gaping.”

Several hours later, I was whisked off in an ambulance to Seattle where my new cardiology team was expecting me. It was late on Saturday night/Sunday morning of a three day 4th of July holiday weekend. Things moved slowly during the holiday, but over the course of the next six days in the cardiology wing, I was repeatedly visited by a gaggle of doctors explaining various aspects of my symptoms, their concerns, possible tests, possible outcomes. etc. I had a CMRI and was told I either had Chagas’ disease (a parasite) or ARVC. I had an ICD placed (sub-muscular single lead). I took a DNA spit test to help determine if it was ARVC. To rule out Chagas, an additional blood sample was procured. Then my boyfriend came to take me home 🙂

Three weeks later my spit test results came in and I was unofficially officially diagnosed with ARVC (it was an unusual gene because it is typically associated with HCM and DCM, not ARVC— not exactly the smoking gun).

What has been the biggest challenge you’ve faced living with ARVC?

The vulnerability of being in the hospital, especially the ER, where everything feels so urgent and it’s hard to evaluate the legitimacy of the information being presented to you. There doesn’t feel like there is time to consider other options or seek second opinions. There are white coats telling you what they know about your body and not fully aware or disclosing all that they don’t know about your body. Do you trust their authority (confident tone, experience, training, etc.) or your own (wait, this doesn’t feel right; that isn’t what I know about my body, but then again I never ever thought I had something wrong with my heart to begin with!). It’s confusing.

There have been moments looking down at me— my blue stained IV punctured elbow creases, my plastic patient ID labeled wrists, my vials of drugs, my incision sites, my ridiculous hospital socks and gown, all the doodads collecting my vitals— and wondered if I haven’t defiled myself in my effort to preserve my health. Doesn’t this look like a bad decision? I hate that moment. The one when you aren’t sure if you have pushed forward, or asked for too much.

“You don’t know our hearts. We play by different rules. Our code of health is different than everything you thought you knew about a heart.”

What encouragement or advice would you give someone who has just been diagnosed with ARVC?

Connect with other ARVC patients. Doctors have read about this condition. Collectively, we can tell you what every step feels like, what other options exist, what hurdles may lie ahead, what has worked well, and what has not. We can fill in the blanks that your doctor inadvertently left gaping. We can put words to what you are experiencing but haven’t had the clarity to enunciate. We can help lighten the emotional burden.

What would you like other people to know about ARVC?

You don’t know our hearts. We play by different rules. Our code of health is different than everything you thought you knew about a heart. Shocked me too. Literally.

Without SADS, I would not have found the help and treatments I needed. My care team is now ginormous. My life is by no means normal, but it is back to being enjoyable again.

Name: Sarah

How and when were you diagnosed?

Coming out of surgery at Toronto Sick Kids hospital for Osteomyelitis, they picked up an irregular heart rhythm. I was sent for testing. Holter, ECG, Echocardiogram, and an MRI. Diagnosed at age 15 with ARVC and was pulled out of all my sports teams in high school. First ICD put in at age 17. I’m now 37 and just had my 3rd device put in a couple of weeks ago. Still in recovery.

What has been the biggest challenge you’ve faced living with ARVC?

Living with an ICD and taking heart medication. 

What encouragement or advice would you give someone who has just been diagnosed with ARVC?

I’ve been living with ARVC for 22 years and have had no progression in the disease. Take good care of yourself and take things one day at a time.

What would you like other people to know about ARVC? 

ARVC is difficult to live with and has caused depression in my life. The abnormal heart rhythms can get bothersome. It also causes me to feel very tired every day. I am grateful for this opportunity to share my story. It’s been a very long journey. I’m hoping I can help contribute to learning more about ARVC through my experience. 

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