Too Good To Be True

I knew it!!!!!!!!!!!

Pacer since November of 2004. Miserable ever since, matter of fact, I feel worse day by day.

After 5 years I finally get to see an EP. He figures out that I have Junctional Rhythm.

He makes some changes to my pacer on December 14th. Before I leave the clinic, I ask if I don't feel "right", I am NOT waiting another 6 months for my next appointment. He ASSURES me that will NOT happen and gives me Anna's phone # (she is the one who books his patients).

I end up in Emergency on Dec 19 & 20 (it's a weekend) because of my Junctional Rhythm. I am seen in the Pacemaker Clinic on Monday, the 21st, but my EP is on vacation; so the cardiologist wouldn't change any of my settings = a waste of everyone's time. However I am re-assured that as soon as he gets back in the new year he will see me!!!!!!!!!!

So, I let Monday & Tuesday of this week go, as I know everyone is just coming back to work off of holidays and will be busy. But then I say to myself "enough is enough" and I call Anna yesterday & leave a message. I call again today and she answers this time & says: "He had NO business giving you my number and I cannot just book you in as we are short 2 techs (which means they are down to only 2 techs in the clinic as our hospital only has 4 total) She says that she has referred this to the EP's secretary and that she would be glad to transfer me.....

His secretary tells me that my EP is not available; he is taking care of the patients up in the wards & has not even had a chance to go thru any of his paperwork in his office!!!!!!!! I had also faxed a letter yesterday requesting to see him because I feel SO bad being in Junctional Rhythm for hours and hours each day.

The secretary then proceeds to tell me if I'm feeling that bad to go to the Emergency Room.!!!!!!!! I tell her I WAS THERE on Dec. 19 & 20 and was assured I'd be seen by him as soon as he got back in the new year. All she kept on saying robotically was "I am sorry, I am sorry, he will get to you when he can."

I hung up stunned as a stick. I am not even crying like I usually would. I am soooooooooooooo mad.

So, my question to all of you is: do any of you know if being in Junctional Rhythm for hours & hours each day is dangerous? when this occurs I experience severe shortness of breath, chest pain, my left arm feels swollen & tight all the way down to the wrist and my heart thumps & pounds SO hard it feels like its going to jump right out of my chest. Also, it's hard to explain, but I get this awful feeling of doom during these events.

I just need to know that I will survive these daily events and that it is not doing any damage to my heart and that it is safe to wait and see my EP OR do I drag my sorry butt down to the Emergency Room for about the 29th time in the past 5 yrs?

When I went to the ER on Dec 19, my EKG was so bad that that is why they kept me until the next day and I was seen by a cardiologist (who couldn't speak English) and he did interrogate my pacer and gave me the standard line: "Your pacemaker is working fine." However, like I said: it must have been bad enough because the very next day the pacemaker clinic called and had me come in, but the like I mentioned, the settings were not changed because the cardiologist who I got to see said my EP had put a note on my chart NOT to change any settings....just him.

I just don't know what to do and I am scared.

If these events are not harmful, then fine, I will swallow our pathetic ways of our health care system and wait, but if there is a chance that I could go into cardiac arrest or damage my heart, it would be nice to know what I should do.

ANY help would be appreciated. I know a lot of you will probably tell me to go to the ER and tell my story to them yet again, but I feel I will only be wasting their time and mine because ER is only meant for "emergencies".

Is being in Junctional Rhythm an emergency???????

Pookie

8 Comments

junctional rhythm

by golden_snitch - 2010-01-07 04:01:23

Hey Pookie,

I'm really sorry to hear that you don't get the care you need. This really is a shame!

I was in junctional rhythm after my complete sinus node ablation, for hours, days, weeks (it was my rhythm like others have a sinus rhythm), and it didn't damage my heart. Actually, they said that if my heart rate hadn't started to drop to 18bpm at night and pauses of 5 seconds, I could have gone on without a pacer.

In 2008 I started going into AV-dissociation because apparently a rhythm somewhere below the AV-node, they said it might even be a idioventricular rhythm, was faster than my pacer. So I had a different rate in my atriums than in my ventricles. Now, that was pretty bad. I felt exactly like you describe. However, my cardio never said that it would damage heart, he only said that it makes me feel bad and that my cardiac output can decrease when the atriums and ventricles don't beat insync. It wore me out. Now, my cardio put my minimum pacer rate up to 70bpm, and since this alone didn't do the trick, I was put on antiarrhythmic medication to slow that fast rhythm in the ventricles down. I'm now on Amiodarone, and the AV-dissociation is gone.

So, maybe it's not a real emergency, but when you feel lousy you should get treatment. If you don't take any antiarrhythmic meds at the moment, maybe you can get a prescription for betablockers or something like that.

Best wishes
Inga

A Thought

by ppt - 2010-01-07 04:01:25

Can you just go plant yourself in his office? That is what I would do - just go there and explain and stay there until you are seen? A bit gutsy and assertive for sure but gosh - you do not feel right. Sometime the Drs forget to tell the staff ---

After Some Thought...

by Pookie - 2010-01-07 09:01:09

First, thanks for both of your responses.

Second, I think I'll cut back on my coffee and M&M's (chocolate covered peanuts) ~ oh my ~ how will I ever do that? to see if that might help. Plus I'm sure stress doesn't help my situation either.

Thirdly, I'll give my EP this week to get the message from the Pacemaker Clinic and also get the fax that I sent on Tuesday as he can't be walking the wards all day....can he????? I'll certainly be calling back on Monday afternoon.

And if worse comes to worse, I'll go back to the "dreaded" emergency room ONLY if my Junctional Rhythm and all of it's lovely side effects are at an all time high..that would be the last resort.

But I sure do like ppt's advice - go sit by butt at the pacer clinic, the only problem being, he might not be there as they all take turns doing different "jobs" in the hospital, everything from being in the ER, to working on the heart ward/floor, to being in the PM Clinic, to actually sitting down in their offices meeting with patients. AND I'm sure his lovely secretary wouldn't give up his schedule to me!!!!!!! :)

I'll figure something out.

It's just really sad that when something is going on with our hearts and you are home alone and scared knowing there is no one out there to help you.

Our one and only hospital is in such a mess. They had to call a Code Orange 3 times this past weekend because the ER was full to capacity. A code Orange is everyone (all medical staff) in the hospital has to STOP what they are doing (where and IF possible) and all head to the ER to get the backlog cleared!!!!!!!!!!! And this is a brand new ER that just opened about 4 months ago. It was built bigger to accommodate more patients!!!!!!!!!!!!!!!!!!

Yes there are other hospitals I could go to, but our hospital is the one and only that has the Pacemaker Clinic...so our hospital accommodates 3 Provinces!!!!! And our Pacemaker Clinic only has 4 techs as well. It's a mess.

But I've learned a valuable lesson....when my EP told me to call Anna & that I would be seen right away....I'll make sure next time that he informs her first.

Wish we luck.

Pookie

Hey Karen

by tcrabtree85 - 2010-01-07 11:01:47

Ok Karen,
I go into the same thing that you do and miss top priority is to cut out all forms of caffeine and yes you can do it. That means coffee, soda, and your m&ms. When I did that it did help me a lot.
I don't understand why you are waiting so long to call back. I would call everyday until I can be seen. Also you could just walk into the clinic and say you have been having a lot of problems have tried calling to make a visit but feel horrible. They usually at least here in the U.S. have extra slots available for people who do that. I have done that multiple times b/c it saved me from going to the ER. Where they can't do anything.

I wish you luck and am praying for you. Love ya sweetie!

Tammy

Sites for info:

by pacepal - 2010-01-08 08:01:06

Hi Karen,
Below are two web sites you might find of interest regarding Junctional Rhythm;

http://emedicine.medscape.com/article/155146-overview

http://www.americanheart.org/presenter.jhtml?identifier=746

I hope you can find an answer/solution soon & get to feeling better......Karen

Cutting back on coffee and M&M's

by ElectricFrank - 2010-01-08 12:01:14

Now that is risky. If I stopped my coffee and sweets cold turkey I would likely go into shock and die. That is serious stuff.LOL

Something I have always kept in reserve as far as getting noticed in either ER or the doctors office. When they refuse to see me I would turn to leave, roll my eyes up, and collapse on the floor. No matter that I'm lying there wide awake trying to keep from laughing. I'll bet I would get noticed.

And now to get serious, the most effective way to handle your sort of situation is to put everything in writing. I keep the letters short, to the point, and restate my understanding. Then end it with a statement to the effect that unless I hear otherwise I assume I am correct. It has always worked for me.

Stop and think..we can't get a credit card, buy a car, etc without putting the agreement in writing. Why should something as important as a medical treatment be left to a verbal (and unverifiable) statement.

frank

oh my god

by jessie - 2010-01-09 09:01:13

i have been ill for awhile and haven't been on. i have missed so much you and frank and susie. i also have not heard from billie. i hope this weekend goes okay and you get help on monday. thinking of you karen hugs,maureen xxxooo

Junctional Rhythm and Getting Help

by ChicagoKim - 2010-01-09 12:01:36

Hi Pookie,

Boy, I can relate. I am told some people do just fine in junctional rhythm... I am not one of those people. I pretty much drop in my tracks when it kicks in. I can't get enough air and I feel incredibly weak. My heart pounds out of my chest and a sense of panic/impending doom comes over me. I know the second it hits and the second it stops. My pacemaker rep said everyone's hearts are different and can tolerate or not tolerate certain things. Whether it can actually damage your heart or anything, I'm not qualified to say. I know it can ruin your life though... that's for sure. I did pass out once while in JR due, probably, to the panic that comes over me when it happens. I don't have panic attacks or anxiety normally, so this is exclusive to JR for me. Not pleasant.

I would do as Frank said and start writing letters. Send then certified or whatever you need to do to have a record in writing. I think this will make your clinic and doctor stand up and start paying attention.

I would also be calling daily (at least). I would not/could not tolerate JR on a regular basis. There are things he can to help you. The first thing would be to increase your lower limit to 70 or so since your JR seems to run at about 64. Why he didn't do this to start with, I don't know.

Write letters, call, show up, make sure you get taken care of. You shouldn't have to deal with this for more than a few days, let alone the amount of time you have been dealing with it.

Good luck, Pookie. Please let us know what happens.

Kim

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