rmlyonsfamily Posted June 26, 2011 Report Share Posted June 26, 2011 We have been out of town since Thursday night for a death in the family and I had to take K with me. Things have not gone smoothly with her and I hate that we had to be traveling, it only made it worse. Her BP has remained dangerously low (low 70's over low 40's) and she has been in Bradycardia since last Wednesday again. I spoke to the nurse Wednesday, Thursday, and again on Friday. On Thursday we were told "she is in no danger... just monitor and write everything down". Then on Friday when I called because her heartrate was 38 they got concerned (finally) and wanted her taken to the ER... but, we were 8 hours away! So, they scheduled an appointment for first thing tomorrow, but said that if the symptoms didn't improve to take her in to the closest ER. Well... her symptoms haven't improved, but I didn't want to really take to an ER in a small town 50 bed hospital. They just aren't equipped to handle much. So - we watched her like a hawk! Then, on the way home today, she took her afternoon dose of Midodrine around 1pm when we stopped at Wendy's. By 2:30pm she was complaining that she felt "weird", dizzy, and felt like she had a big air bubble in her chest. Her BP was WAY up for her to 124/76, heartrate was 38 again, 02 95%, and sugar 76. We had 2 more hours to drive so I kept trying to get her to drink fluids to which she said she felt like she'd throw it up. We are home now and I have left a message for the cardiologist on call at Duke, but nothing back as of yet. She's at 111/70, but still in a very low brady at 38-42 for a heartrate. I'm not completely convinced that Dysautonomia is our answer... Reading other forum posts, most of them talk about higher blood pressures and tachycardia which is not K's case at all. We are completely the opposite. We were with my step-mom all weekend who is a RN and said the same thing... she's concerned they are missing something. For now, since she's "stable", we are trying to stay here at home until we hear back from the doctor. Again, don't want to take her to the ER here because we had a terrible experience. She sees her cardiologist at Duke in the morning (2 hours away), so we are trying to just hold off on going.Just feeling very frustrated with it all. If there are so many people suffering like this, why can't they come up with a treatment plan that works?!? Ughhh! Quote Link to comment Share on other sites More sharing options...
skiberthoud Posted June 27, 2011 Report Share Posted June 27, 2011 I'm so sorry for what you and your family are dealing with! I hope so much you have a good appt tomorrow! I'm sorry I don't have anything to say to help, but know I'll keep you guys in my thoughts and prayers. May you get some answers and some help soon!! Try to get some rest tonight... Quote Link to comment Share on other sites More sharing options...
Brye Posted June 27, 2011 Report Share Posted June 27, 2011 I just responded twice to this and both got deleted somehow so this will be short. My HR was in the low 30's when I was 1st diagnosed with POTS. No one was very concerned about it even though I was lightheaded, fatigued, and fainting. It was just that low at rest and when up it was 160's. It has improved, not sure why, maybe I'm just finding a happy place with my meds. Low 40's occasionally at rest and still some low BP's. One doctor said "people your age don't die from HR's in the 30's (I was 35) GREAT!! Hope they can give you some good advice. I've considered a pacemaker but not sure that's the answer. Keep us posted. It's hard when you have to go so far for an ER. You need a heart monitor so you can send the rhythms over the phone.Brye Quote Link to comment Share on other sites More sharing options...
potsgirl Posted June 27, 2011 Report Share Posted June 27, 2011 I was diagnosed with bradycardia a year or so before my OI/POTs diagnosis after I wore a Holter Monitor and my HR was in the mid-30s to low 40s. I got a pacemaker and I think it's helped. It certainly gives me peace of mind. My pacer is set to not go below a HR of 60. My BP remains low, sometimes very low, but my HR doubles or goes higher when I stand up. I'm glad I got the pacer. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted June 27, 2011 Report Share Posted June 27, 2011 Kayber'sMom,Hey, I was reading your response to the "appetite" post, and you listed what your daughter ate and drank. I would be more concerned with the fluid versus the food intake. Apparently, whe drinks on average, about 1/2 or 3/4 of a bottle of fluid a day?? That's roughly 8-12 oz. of fluid/day. She definitely needs more fluid intake, UNLESS for some reason her doctors have her on fluid restriction, which I can't imagine. Does she drink more than that?? Quote Link to comment Share on other sites More sharing options...
toddm1960 Posted June 27, 2011 Report Share Posted June 27, 2011 Before I was first diagnosed I also had a very low HR, always in the 30's or low 40's. I was a personal trainer and worked out like a house and just told I had a runners heart.....no need to worry. Now in the past 5 years my resting HR has increased steadly to the mid 60's. One more thing, DRINK,DRINK,DRINK Quote Link to comment Share on other sites More sharing options...
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