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Denisefh

More than I wanted to know

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Last week I had my pacemaker interrogated (checked out) and yesterday I went in to have it turned down a bit. It was set at 60 bpm for the lowest setting and they turned it down to 55 for me. After years of my heart rate in the 40s, I was having difficulty with the faster rate.

 

The NP was in a talkative mood and was chatting while she was checking everything out.

 

She said my pacer's history recordings show that my heart depends on the pacemaker 96% of the time. She said that my rhythm originates in the ventricles and there isn't communication between them and the atriums. My pacer does both chambers.

 

While all this is very interesting, it is also rather frightening. I think it was information I could do without....

 

Also, please say a prayer for me, if you pray, for some tests I'm having on Monday. They're checking to see if my blood clotting condition is causing clots to form on the pacemaker leads in spite of my anticoagulant. If this is the case, then they will have to go in through an open chest procedure and attach the pacemaker to the outside of my heart. My current pacer will have to be removed.

 

While the surgery is easier than surgery on the heart (no heart lung machine), it would take many hours because of adhesions from previous heart surgeries. I would have to be off anticoagulation that whole time and so there is a high risk of more blood clotting not to mention any existing clots being dislodged.

 

As you can guess, I'm a big bundle of fright right now! Actually it's hard to even put all this down... :action-smiley-077:

Denise

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Awww, Denise, I am sorry to hear this and hope your tests next week do not show you need further surgery. I agree with you that some things are better off not being known!!

 

Seems the more I learn the more there is to be concerned about...:(...so I figure the answer is to remain as oblivious as possible to new info in the future LOL. There is a commercial on TV here about a-fib possibly heralding strokes and yet, only perhaps 5 years ago, when I called my cardio's office (as I had been instructed in the event of any changes in anything cardiac) about early morning 'flutter', the receptionist told me "Oh we do not take a-fib seriously here". On that info, I have been ignoring it and that seems to be working fine as it only happens occasionally now. In fact I have not seen a cardio since then and an internist only twice since then as well. I do better without their input, I am convinced...:) It works for me anyway lol.

 

It would help us all if they would get their signals straight, huh? And what does that mean anyway...? ...Your heart would not beat but for 4% of the time without the pacemaker? That stinks...

 

Good luck with all this and HB angels will be in your pockets on Monday...

 

jan

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I am so sorry to hear that you are going through all of this. My thoughts and prayers will be with you throughout.

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Denise, my thoughts and prayers are with you. The clotting problems have to be extremely complex. As I recall, you are being treated at the UW teaching hospital, so I'm sure you are getting wonderful medical care.

 

I wouldn't worry about how much your pacer is working. Mine is doing about 90% of the Atrial load and 85% of the ventricle work, and I'm doing fine. That isn't unusual at all, I'm told. I also had to have my pacer slowed to 60 bpm. It was first set at 70 bpm, and that just wore me out, so it was set at 60, and that worked fine until my recent stomach surgery. For whatever reason the pacer reps reset it to 70 at the hospital, I think because I had some issues recovering, and I noticed I was very tired again, so it was resetat to 60.

 

Do keep us informed, and I'll repeat my thoughts and prayers are with you.

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And here I just sent you an email today so excited that you were feeling better lately. Those doctors just have to step in and mess it all up. :action-smiley-077: Joseph and I will be praying for you this weekend in hopes that the doctors don't find anything else to complain about. I guess if your heart was running smoothly on its own, you wouldn't need the pacer at all. Don't think about the numbers. Just enjoy each day as much as possible. Big hugs to you little lady. :grouphug2:

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Jan, I'm also to the point that "ignorance is bliss". There are things we need to know in order to be our own advocate, but there are things we don't need to know. I think the NP was just so happy that the device was doing so much for me she didn't think of how it might make me feel to hear that.

 

Fly, while I'm sorry to hear that you are also very dependant on your pacer, it's heartening to hear that I am not alone. I guess if we didn't need the pacer they wouldn't have put one in! I can't imagine going at 70 all the time, especially since I couldn't adjust to even 60.

 

Irene, it was great to get your email! Actually, except for this scare I'm feeling really good. Things seem to have finally settled down and it's wonderful to feel "normal" again. If I wasn't such a pessimist and a scaredy cat things would be much better. After all I AM on anticoagulants and my Hematologist had said that she didn't think there would be problems with the "thin little wires" of the leads.

 

I get this way with every test, unfortunately, and agonize until I get the results. It's those few times that you get horrid results that sensitize you to just about all the tests.

 

Gilbert, and everyone, thank you for your support and prayers. It helps so much to hear from all of you who have been through so much, and to know that you are here for me and each other.

 

Hugs,

Denise

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OK, so what's the verdict? We in your pocket are clammering to know....:)

 

Hope all went well yesterday!

 

jan

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The upper body vascular US was negative according to the tech. :)

 

The echo techs wouldn't give me a clue so I'm waiting for a call from my Cardiologist about the results from the echocardiogram. Basically I'm on pins and needles :huh:

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Thanks for updating us, Denise :)

 

Pins and needles? I am willing to share that state with you as it is better than stifled in that pocket lol :).... Maybe we could pretend it is attributable to the pins and needles from one of those 'massage mattresses' in hotels.... Remember :)?? I am surprised if any of those even survived child travellers in the 50's and 60's :D

 

Keep us posted ok?

 

jan

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Yay! While I was on the phone with another doctor's office this morning, my Cardio left me a message saying he wanted to assure me that nothing showed up on the pacemaker leads during the echo!!! You can't imagine what a relief this is...the worry about possible major surgery has been hanging over me for 4 months. Whew!

 

On another note, I looked up my medical records on the new UW patient information site and found out that I have 3rd degree AV block (complete heart block) and that's why they put in the pacemaker.

 

I don't think I'll be visiting that site anymore, and will stick with the ignorance is bliss attitude.

 

Thank you all for your support and concern, I really appreciate all of you.

Denise

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:horray:

 

SO glad to hear this Denise...now feel better ok??

 

jan

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That's great news Denise. Happy for you.

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