Toni1231
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Toni1231, September 2,  2019  12:33pm EST

Daughter at 22 has AVNRT & SVT

HI- i just joined your site today- looking for some support for my daughter and realized I could use some too. I'm still in shock that this has happened to her at such a young age. She had ablation done but her av node is too close together .  If medicine doesnt work (currently she is taking two meds) then she would need a pacemaker. My biggest wish is to help her realize she can still live a happy healthy fulfilling life- thanks for listening :) Anntoinette

3 Replies
  • JamesPL
    JamesPL, September 3,  2019  7:59pm EST

    Hi Anntoinette,

    So sorry to hear this but you are right that she can live a happy healthy fulfilling life. Treatment for heart conditions are getting better and better as the technology constantly improves. I had quintuple bypass surgery almost eight years ago and today I feel great! My condition would probably have left me with little hope 30 or 40 years ago. Today the treatment is almost routine. My cardiologist has consistently told me about the amazing improvements in surgical procedures, medications, diagnosees...etc. Even some of the devices used for treatment, such as pacemakers, have gotten smaller and better at the same time. And there are always new treatments being researched so who knows where we'll be in just a few short years. I would recommend that you keep an open conversation going with her cardiologist. Ask a lot of questions and ask them to explain anything you don't understand. I have often asked my cardiologist what some of the numbers mean in my test results and she will usually respond with a very thorough answer. Also ask about cardiac rehab. This will give her a boost both emotionally and physically. I can't emphasize that enough! 

    I wish you and her all the best in her treatment and recovery.

    Jim

  • Toni1231
    Toni1231, September 4,  2019  6:51am EST

    Thank You James for your kind words and insight!  I'm very happy to hear your health has improved and you are right about technology.  Thank you for the optimistic reminders- this is the perfect time to place them at the forefront of my mind.:) Wishing you continued wellness!! Anntoinette

  • jerzeycate
    jerzeycate, October 15,  2019  9:05am EST
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    Hi Toni,

    I saw your post and was wondering how things are going for your daughter and for you.

    Having been a caregiver (my mother) and then 7 years ago developing a sudden onset critical cardiac disorder I've been on both sides of the bed. Let me tell you I think the caretaker may have he more stressful job of the two. Please take care of yourself. It's like when the Flight Attendant on a plane tells you that in an emergency be sure to put on your Oxygen Mask before helping others. If you don't take care of your needs you won't be able to help/care for/work with and a hundred other things caregivers do--assist your daughter.

    Having a pacemaker impated, if that's the way they decide to go can be a life-changer. Her issues are two of the electrical issues I developed after a viral infection (Coxsackie B) decimated the electrical system in my heart leaving me with just 11% heart function and prognosis of "3 months without an immediate transplant." Well, I was not eligible for a transplant but had wonderful docs who kept me in the hospital (for most of 6 months) while they searched for options. Eventually, an experimental S CRT-D (a new-fangled complex cardiac device that paces differently than a traditional pacemaker and also includes an ICD) was implanted to "buy us some more time." To the surprise of everyone within a couple of days, I was up walking, dressing, going to the BR by myself--things  I'd been unable to do for 6 months previous. Over the next two years, my heart function continued to improve. It now stands at EF65%--normal. In the last two years, all signs of active CHF have been in remission, my heart has returned to normal size.

    A complex cardiac device (today's name for things like pacemakers) can help your heart restore function, protect you against dangerous arrhythmias which help the medications and lifestyle changes work more efficiently. Look at me I went from a 3-month "Expiration Date" to closing in on 7 years. As JamesPL said the treatment of cardiac disorders and disease has really come far. Forget 10 or 20 years ago--the First Cardiologist we saw in the ICU summed up his treatment plan to my husband this way--"Take her home. Make her comfortable. Get her affairs in order." He was immediately fired. The next doctor--who is still my Primary Cardiologist today--had the same diagnoses, but a very different attitude and commitment to my living a productive life.

    That's where I will leave you. remeber that if you want to explore what else may be available, she can always get a Second Opinion. If you have a University Hospital in the area they usually are doing the latest (even experimental procedures like mine) stuff and have their pulse on what's come down the line. Here's a link to a section of the website that includes information on getting a second opinion.

    https://www.heart.org/en/health-topics/consumer-healthcare/doctor-appointments-questions-to-ask-your-doctor/getting-a-second-medical-opinion

    This brings you to a section of the website that is chock-full of helpful information and resources regarding heart disease and disorders.

    https://www.heart.org/en/healthy-living/healthy-lifestyle/mental-health-and-wellbeing/busy-parents-and-caregivers-must-care-for-themselves

    This link brings you into the section on Healthy Living with an article directed at caregivers front and center.

    I hope you find some helpful information in these resources. I know that for most people (patients and caregivers). having the information helps them feel better equipped to deal with the disease/disorder. Please let us know if there is anything else we can assist you with...

    It's A Great Day To Be Alive...

            Cathy

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