Greetings

Hello everyone,
I came across this forum by happy accident - which I had found it years ago! I just wanted to post a short introduction and hello to everyone before I jump into the pond. I have SSS, 100% pacemaker dependent. Was misdiagnosed or undiagnosed all of my life until heart failure nearly killed me. That was 2003 when I got my PM. I had the battery/PM replaced once in 2009 and am now laying abed waiting for the next one. The first time I kept asking my MD to check me, I was not feeling well. (All in my head, I'm fine, bla, bla, bla). When they finally did check me the put me straight in the hospital for surgery. It amazes me that they let me get to feeling so bad before they would do anything, but when they did, they did.

Now, I am feeling quite low - heaviness, pressure on chest, extreme shortness of breath, lightheaded and ghostly pale, super fatigued.

The techs interrogated the PM, atrial lead (I have dual leads) has stopped pacing, not working at all (that scares me since I am dependent), and ventricular reduced on backup status. I thought I could go to work and just sit a desk, but kept getting worse and worse. It is hard to get from my bed to the bathroom. If I just lay, I do not feel too bad. If I get up, more pressure, shortness of breath, etc.

Instead of putting me right in for surgery, they said, " we can see you NEXT Thursday" What! They just said "Oh, you'll be fine. It won't let you die." (Such compassion from our medical industry I am sadly accustomed to).

My husband keeps asking me if he should take me to the ER. So far I have declined because I doubt ER will do anything. Now I am wondering if the ER could admit me and get me into surgery.

Any input?

3 Comments

Recommend ER

by k.rize - 2016-03-06 07:03:34

Hello,

I'm new to the group and I'm also really glad I stumbled across it. I have only had my defibrillator/pacemaker since 2014 but whenever I have any kind of problem with it I go directly to the ER to get checked out. It might also depend on where you live or what the hospital is like there but if you are feeling that bad it could move things along a lot quicker by going instead of waiting until Thursday and potentially getting worse. I hope everything goes well and you start feeling better soon!

Pacemaker symptoms

by Selwyn - 2016-03-07 05:03:00

Unfortunately some of the symptoms you describe cannot readily be associated with a pacemaker problems: ghostly pallor, fatigue, lightheadedness, spell severe anaemia to me.

I think I would get an urgent check up and make sure that this is not the case.

Kind regards,
Selwyn

Thank you both

by Datamaiden - 2016-03-11 09:03:17

Thank you both for your input and suggestion. Yes, I am anaemic, so this could definitely be worsening the symptoms. I take a supplement and increased the dosage which may have helped a little although it takes some time. My MD monitors this and I do typically require double the dosage of most patients.

I had surgery yesterday. All the while, up to the surgery my BP and heart rate kept dropping as the pm did less and less. The MD told me it was pacing only the ventricle and only at 50% of the time.

During surgery I could feel it immediately when the new pm was connected - I felt pressure come back to my head and I felt the awful heaviness leave my chest - relief and I could breath easily again.

Feeling well now though a bit tired as it was a very long day yesterday and the would is a bit painful. Last time the wound did not bother me at all.

Anyway, thanks so much. I am so glad I found this group.





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