Daughter diagnosed with low heart rate

CCHB

by Tracey_E - 2017-10-25 10:35:37

I have CCHB also, was diagnosed when I was 5. That was 1970 and they didn't pace kids then unless it was life threatening so I got by with a low heart rate (44) until my 20's. In hindsight, I should have been paced by my late teens. My quality of life after was considerably better. I thought I was ok and mostly asymptomatic before, but my energy level skyrocketed once my heart was beating normally. If she is losing weight and there is no other reason for it, perhaps she doesn't feel as well as she says she does? I know how I was at that age, I knew I'd have to have surgery one day and I was determined to say whatever it took to make sure that day wasn't any time soon. 

She may be a candidate for a leadless however, I personally would not want it just yet. Someday, sure, but they are still pretty new and facilities that can monitor them are limited. Also, they won't use them yet if we are dependent (most of us with CCHB pace 100%), and it's only single chamber pacing. Theoretically with heart block we only need the ventricles paced, however the atrial lead provides information and some of us end up using it. If the doctor suggests it as an option, do your homework. 

Yes, a pm is for life. These things don't correct themselves but it's not as scary as it sounds.

Lifestyle with a pacer? Pretty much the same as someone without one. I have a check up once a year. I have a home monitor that does a download every 3 months. I don't do anything, it happens automatically and I get a call or email a few days later letting me know it's all good.  I can generate a download if something feels off. My batteries have lasted on average 7-8 years, replacements are super easy. The rest of the time I live my life and barely give it a thought.  I hike or ski every vacation, do Crossfit 5 mornings a week. I had two babies while paced, perfectly normal pregnancies and deliveries. My babies are in college now. One of them does CF with me when she's home and we meet for races. She picked a half marathon for us to do to celebrate her 21st birthday next month. My other daughter is the thrill seeker of the family, when she was home on fall break we went ziplining, kayaking, and spent a day at Disney on the coasters. There's nothing I want to do that I cannot. The pacer is just a tool to give me a normal life. I've always considered myself blessed to have  a condition that has a fix. 

Low heart rate

by Chestpain - 2017-10-25 14:49:40

I have low bpm, found out by accident. I ended up in the hospital for alcohol poisoning, nearly died, but the doctors found an underline condition that I had no idea about. My heart rate was abnormal, it would beat normal and then it would have a hiccup. I ended up seeing a bunch of specialist, for my anemia, hypothyroidism and my heart. I had lost weight before I received the pacemaker and gained weight after the pacemaker, 143lb - 160lb. Any way pacemakers are for ever and they change batteries every 10 years or so, next time you see the cardiologist ask her if she is going to run a test on how strong her heart is. The test is to find out if    Your daughter needs a pacemaker. I had dizziness and would faint due to my low bpm. Good luck 

Thank You for all the help

by Rogerj - 2017-10-25 22:34:48

Thank You guys for all the help. It reall helps to know what we have to expect and how to deal with it as we keep praying and keep our figers crossed during the upcoming visits.  It really helps to know that there is such a supporting community who can share their experiences. I wish you a blessed life and best wishes. Thank You again.

Needed or not

by Finn - 2017-10-27 19:29:00

hi, I still wrestle with that question, but it's silly, I also lost weight, weak, fainting spells, didn't have complete heart block.

im 56, had one for 8 yrs, not much in lifestyle change, I usually forget I have it, very unnoticeable after the swelling goes down. I'm not sure if wireless is there yet?

good luck finn