Anyone with arrhythmogenic right ventricular dysplasi, RVD, who rides a bike?

This is a message from Chris D who askes:

Hi; I have been looking on the web to talk to people with heart issues who cycle still or in the past. I heard Paul Sherwin describe Haydens durin the TOC and have been on the web looking since. I get the Riki thing he shared however he is younger and likely with much less scar tissue etc… I do not doubt Riki and will likely try it. question, does anyone else know what other treatments he went through; meds etc…. I told the Doc his story and She said that he is is taking great risk regardless of Riki and any meds etc…. I have been a cyclist since I can remember . Over the past 6-8 years I have experienced fatigue issues and lightheadedness and poor results but I fought through and thinking I could get back to the Level; but I never have come back and now just ride with a slower group and not with the bigboys here. I had no idea that I had this condition like Hayden Roulsten arrhythmogenic right ventricular dysplasi. That is until I stood up one morning after breakfast and hit the floor like Ali did Fraizer. a VTAC type arrhythmia slowed blood flow to the brain and I went out. The good news is my family say what happened and forced me to go to the hospital. Whereas before I would have chalked it up to over training and poor recovery nutrition etc… After many days in and out of the hospital and Dr’s office’s; Cardiac Ablation and Meds (BetaPace)(Toprol). Another Ablation procedure is in the table and if that fails and my ejection fraction remains low then it is a Defibrillator…great. My question is this: Do people ride moderately on Betapace? Can one at least spin for leisure and fitness still? I have the same question to anyone with cycling experience and defibulators? And improve fitness level? My Doc saiy no riding….I mean this hurts me like nothing else Cycling is ingrained into my life and family I fear losing the ability to stay involved… The question is real here and I do not ask anyone to play Doctor. I have heard it all from them and understand the risks from their perspective. However I feel like my definition of exertion is different than theirs and I know they are not the least bit athletic aerobically…. I am not in denial; just looking to learn and live on the bike again regards

Advertisements

5 thoughts on “Anyone with arrhythmogenic right ventricular dysplasi, RVD, who rides a bike?

  1. Hi Chris,
    I really don’t have any knowledge of your condition and can’t help you with regard to people riding with RVD but I have some thoughts that might get you some answers. I’m lucky that 2 of my cardiologist are very active. 1 is a national ranked body builder former cyclist, former tri-athelete and the other is a very avid cyclist. I mention this because they understand my desire to stay active, understand what the body does under these activities and is proactive in understanding the benefits of exercise on the heart (and the mind). I have met some doctors and nurses that said yes to me riding but when I told them what kind( mileage, speed, heart rate) they said no way. I suggest you ask your hospital, nurses and other doctors if they can recommend a doctor who they feel is the most progressive, athletic and/or is a cyclist. I don’t know if you go to a cardiac rehab program but if so ask those nurses for a recommendation. I have found that many cardiologist are fantastic doctors but not always the most proactive in learning about the latest in what can and can’t be done after the surgery. Speaking of rehab would your doctor be willing to let you go to a cardiac rehab program so you can at least be monitored while your on a stationary bike?

    I also suggest asking around on http://www.bikeforums.net/ or http://www.roadbikereview.com/. Also cylcingnews.com has a ? and answer section with experienced cycling trainers, maybe they have had people with your condition or know about how your drugs will interact with you
    http://www.cyclingnews.com/fitness/?id=2009/letters03-04

    Good Luck and please keep me updated on your story.

    Eric
    heartATTACKrider

  2. Hi Eric,
    Strange we haven’t crossed each other’s path in the blogosphere. My (very un-updated blog) discusses my adventures with VT and a non-genetic form of ARVD/C… you and your readers may be interested. I will update soon, currently in my final weeks in grad school, then freedom, and time. I still train – 8-10hrs a week, no competition until some issues get figured 0ut (occassional VT = zaps by the ICD)…
    http://v-tach.blogspot.com/
    Nice effort on your blog, keep up the good work.
    Best,
    Craig

  3. Pingback: Rider site regarding VT and ARVD/C « heartattackrider.com

  4. Hi Craig-
    Glad we found each other. Thanks so much for posting and providing a link to your site. Looking forward to hearing more news on your condition, how you handle it, experiences and how it effects your riding. I’m sure others will be happy to know about it also.
    Please feel free to stop in anytime and write.

    Thanks,
    Eric

  5. I am both a Genetic Heart Defect survivor & have a Polymorphic Ventricular Tachycardia that were not found until Oct.22, 2009. I had open-heart surgery Dec.23, 2009 at the Cleveland Clinic. My heart defect was leaking almost 50% backwards. I went into v-Tach during testing. My doctors tell me I should not be alive. I’m an endurance athlete for 30 years, marathon, ultra-marathon, endurance cycling, Triathlons, even an Ironman before I found out.

    Look at the events I complete within months of surgery still with a Ventricular Tachycardia.

    I take a Beta Blocker. In 2011, Big Sur marathon, Leadville trail 100 mile run, Ironman Arizina.

    Take a look at my blog & email me. I’d live to help you out.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s