Here I am

Hi,
My name is Taryn Simbrow. I'm 31 years old and I live in Thronhill, Ontario. I have been living with arrhythmias for 10 years and have had one pacemaker put in 10 years ago for bradycardia, but it failed due to infection. I had it taken out and was doing well until 5 years ago when I started fainting again and they discovered that I have not only bradycardia, but I also go into junctional rhythms and I also have SVT and slow a-fib. I'm currently on medications to try to control it, but it's not working anymore and my doctors don't know what to do anymore for me. I haven't seen my EP specialist in over 5 years since he didn't feel there was a need to see me, but now he does. I have been trying to contact his office for a while now and they just booked me for an appointment 2 weeks ago because I was admitted to hospital. I currently am on an event recorder to see if my heart is doing anything new, but I don't think the doctor are going to do anything since I'm so high risk for another pacemaker. I'm in a bit of a jam and I'm just trying to cope day to day with everything. My hospitalization was because I have started fainting again and they don't know why.
That's me. Here I am and this is me.

9 Comments

Hang in There

by Pelelives - 2010-01-20 09:01:34

Well, let's hope the event recorder sheds some light on what is happening. And, I would imagine that over the last five years some things may have changed from a treatment perspective that your EP might be able to offer you. Good luck to you and try to be optimistic. I know it is hard.

Thanks

by tsimbrow - 2010-01-20 11:01:02

I'm in between a rock and a hard place tonight. I have been told earlier today that I went into rapid a-fib rather than my usual slow a-fib and then went into SVT which they think was caused by trying to get out of a-fib., but this is just a reading from the recorder. On top of this, I left a message with my G.P on Monday because I was dizzy and nauseas before the heartrate and rhythm changes and when I checked my messages a little while ago they left a message for me to call them. They have a message from my G.P. This concerns me because they never phone me back with good news, only bad and I don't think I can handle anymore bad news especially after the cardiologists call this afternoon about the recorder. I have never had rapid a-fib before and if it happened and then went into SVT they say it's dangerous, but they also are not rushing to do anything about it so I'm not sure what to make of it. I think the recorder is sheding light, but just what type, I'm not sure. I'm trying to be optimistic, but like you said, it's hard. I just don't know what to do.

Still no answers

by tsimbrow - 2010-01-21 07:01:49

OK so I went to my cardiologist today and he wouldn't see me. Said there aren't enough recordings to tell me much. I asked him about what the cardiologist yesterday said and his answer was that he didn't hear anything about this and wasn't sure that it was a-fib or SVT. Again, just as I suspected. I'm so frustrated with the medical system here. I don't know if this is an American or Canadian website or both, but I live in Canada and as good as our healthcare system is, it just sucks in other areas and this is one of them.

Canadian System

by ElectricFrank - 2010-01-21 11:01:38

I'm totally out of my field when we are dealing with Canadian medical politics. I understand the problem though. My experience has been that with any system you can get what you want if you learn to manipulate it. Maybe some of our members from Canada can give you some hints.

good luck,

frank

Lost

by tsimbrow - 2010-01-21 11:01:59

Tonight I feel totally lost. The medical system is not what it should be and I feel like I'm falling through the cracks eventhough I have this recorder on. I feel like nobody is paying attention to me. I just recorded another event tonight and called the on-call cardiologist and he basically told me that there is nothing they can do for me until they get all the info and it does make sense, but what do I do about the fact that I feel physically awful and had to come home early from work today and have a class tomorrow which I'm not sure if I'm going to make. My gut is telling me to go to the ER in the morning if I don't feel better, but I don't think they will do anything. They may admit me and watch me for 24-48 hours, but isn't that the point of this recorder? So confused and lost and upset.
Thank you Frank for the comment you left and I don't know what the American healthcare system is like although I do work in the Canadian healthcare system. I know that they both are very different from each other and that some Americans view the Canadaian syatem as good, but I have had my doubts lately and I hate feeling this way.

at least it's news

by justme - 2010-01-21 12:01:29

Your cardio is calling you to tell you what's going on. That's a good thing. Them not rushing to do something is also a good thing. When it has to do with your heart, everything is dangerous in one way or another. If you were in immediate danger based on an upload from your event monitor then the call would have directed you to the ER. Keep recording symptoms and following through with all the testing. The more information that your cardio's have the better informed decision can be made about your treatment and care. It is scary, but things will work out. You may also want to record when you start to feel nauseous and dizzy on your event monitor. That's what I did and it's where my EP saw what the "real" issue was. It's not like they charge you more for uploading more symptoms. Hope everything goes well and you get some helpful answers soon.

Infection problem

by ElectricFrank - 2010-01-21 12:01:50

Just because you had an infection once with a pacer doesn't mean you will again. A lot depends on the surgeon and how well he handles things. The procedure these days often involves an IV antibiotic before and after the implant. I had my first implant in 2004 and just had it replaced due to battery depletion and I've had no sign of infection either time.

If you need to have one implanted try to find a cardiologist who does a lot of them. Don't let any old GP mess around with your heart.

frank

Re: Lost

by jm48 - 2010-01-22 02:01:36

I'm sorry to hear about all your trouble. What the Canadian and American (and most others) share is that your experience of the system (assuming you can get access to any care) depends on the people, the doctors, you have contact with. That is not really a function of the system. In our case the greatest benefit of the healthcare system is that we all have access regardless of income or employment and without fear of crippling medical bills. It sounds like the doctors you're seeing don't know yet what you need, but when they do know what you need, you'll get it. And you won't have some private insurance company telling you that what you need is not covered by your policy.

Incidentally I live in Toronto too and have had a fairly positive experience within the health care system. I'm grateful that it is there. My positive experience is probably in part because my condition (complete congenital heartblock) is probably pretty simple in comparison to your troubles. I had a few dizzy spells last summer, and one particularly bad one that lead me to go to the ER. From your post it was probably nothing in comparison to what you're going through but at the time it was pretty scary. I think they must have been very alarmed to see a case of untreated complete heart block because I barely had a chance to sit down before the called me in. In any case the cause and solution were clear and a week later I had a pacemaker . I was unemployed at the time, so in certain other countries I'd have had no medical coverage and I don't know what would have happened.

As I mentioned before, our experience of the system depends a lot on who we're dealing with. If your current cardiologist keeps on giving you the run around look for someone else. Its probably more a people problem than a systemic problem, but take some comfort in the fact that you may be getting closer to an answer. You have a recorder on, you're being monitored and your doctors do talk to you. If it gets bad DO go to the ER. Better to play it safe. I hope you get some answers soon! And look around this site. Goodness knows you're not alone.

Jesse

Dealing with the situation

by ElectricFrank - 2010-01-22 03:01:02

My feeling is that you are likely to get better attention if you can hold out until you get the number of days recording they want. I know how lousy you can feel. My last phone check before having my pacer replaced shows I was having over 10,000 PVC's/day Since October. They don't feel good, but I am not willing to start on their meds unless they actually cause me to be light headed.

Hopefully, the recordings will show something helpful. Don't let all the serious sounding diagnosis scare you. They often aren't well documented and aren't serious. In fact if anythng they know is really threatening I doubt they would be so reluctant to see you. No doc no matter how unfeeling is willing to risk having a patient experience a life threatening event. It's bad for their reputation.

best wishes,

frank

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Member Quotes

I just want to share about the quality of life after my pacemaker, and hopefully increase awareness that lifestyles do not have to be drastically modified just because we are pacemaker recipients.