SOB Still, 10 days out

Hi Everyone,

Post Merry Merry day.. I hope all of you had a most wonderful Christmas.. Mine was wonderful.. Hubby became housewife wonderful gift I had my 80yr old mom here and it was a beautiful day!

As you know I had my HR changes from 70 to 60 as I was very SOB, well that has not worked. I am still SOB, and now feeling ab bit live I did before PM implant.

Soooo, I called medtronics and got a rep he said I should not Be SOB, that the Rate Response my need to be tweeked since I am such a hyper person.

I am so getting confused lol.. But I am once again SOB, Lightheaded,Getting that Old Pounding when I stand up.

So I called the Dr's office to try and come in and Got the run around. lalalallalala lalalalal they just changed your HR last week You need to wait 6 weeks.. I feel the BS coming.

I am a very patient person but I do know how I feel, and something is just not right.

Any Idea's ...

I am not after my first call to the Dr office post PM feeling like a Pain In the B______TTTT..

Cynthia

12 Comments

Sometime you gotta be

by Theknotguy - 2013-12-26 04:12:17

Sometimes you have to be a PITA (Pain In The A**) to get everyone's attention.

My questions are, how long ago, how much trauma, and any other conditions before you got your PM? 1) If it's a short time since you got your PM you still can be suffering from the change over. 2) Also, if you had a lot of trauma before getting the PM that could explain why you are SOB. 3) Do you have a secondary condition that is causing the SOB such as a-fib? I understand the frustration but sometimes the adjustments for heart problems take a long time.

Because of the trauma I had, I couldn't take a full breath for almost 60 days. It wasn't until I started rehab that I got a full breath. Broken rib and collapsed lung on the right side, PM on the left. All led up to no full breath until stuff got healed.

I also have a-fib being rate controlled instead of rhythm. So that means I can go into a-fib (and I have) which will make me SOB. It isn't the PM causing the SOB but the a-fib. But I'm one of the lucky ones who can tell when I'm in a-fib. If you can't feel a-fib (my spouse has that problem) you can be SOB and not know why.

Another question is how bad is the SOB? Is it being unable to take a full breath, or is it the "almost passed out" SOB. If it's the "almost passed out" - you'll need to punch the button and go to the ER. If it's the "I can't get a full breath" then you'll have to look for other problems.

I had to go nose-to-nose with one of the cardiologists to get a good explanation of what was going on. Once I understood that I wasn't worried about the pain, heart flips, SOB, and other symptoms.

Hopefully things will start turning around for you. While doctors sometimes go off on the female hysterics tack, you'll feel a lot better once you get an explanation that makes sense to you. Sometimes the SOB is a result of anxiety because you don't know what is going on. Once you've got a clear picture it'll help.

Theknotguy

ps.......

by cindyredd - 2013-12-26 06:12:05

I need Spell Check :-) Sorry all

SOM: Re theknotguy

by cindyredd - 2013-12-26 06:12:07

Howdy,

I was not SOB before only if I was going into VasoVagle or AFib at the Gym, I know those signs. I have had them for 15 years.
When I woke up from the operations 10 days ago the very first thing I notices was I was very SOB.
Upon leaving the hospital I was very SOB, and since.
Hence me having them lower the HR to 60 from 70.
However I felt better at 70 I think it was keeping me from constantly dropping down . I put on my HR monitor this am and watched, 60, 61, 60, 61, stilling on the couch. Amusing I am trying to drop below that all day sitting like the old days then when I stand up , Boom HR flashes up zoomo and I get that boom boom in my head ..

I think it just needs a tweaking.. And I am sure I am still recovering...

I am not a big thinker about having my new friend. I was a huge advocate on getting it , Drs wanted to put it in two years ago but Ins would not have any part of it ..

I am very grateful to have this once its tweaked right.

However The Tech does not want to listen to ME! She said it looks like all the settings are where they should be lets lower your HR.

Another thing? 1 week out after having three procedures done , I thought The DR would see me and check on everything.? He know's me well and my issues , I do not know this gal and she does not know my body.. UGH..

Anyway .. I will drive them insane until they bring me in and get it right or they will have no peace.. :-)

Post Merry Day to all..

Best Cynthia

how many docs view patients

by BillMFl - 2013-12-26 06:12:43

And the pacer reps too. If you have a non life threatening symptom, even though you feel anxious and worried about it, they aren't. If they see a mostly normal sinus rhythm and no obvious dangerous dysrhythmia issues then they consider you a routine patient who doesn't need urgent care. Believe me, if your EKG or PM showed any sign of a life threatening condition you would be in hospital and on monitors until the problem was resolved. So you are now probably among the many of us with a PM that ensures that our heart pumps steady enough for us to function normally enough, but still with uncomfortable and anxiety provoking issues. After 11 years and 2 PMs I am now of the opinion that the pump will do its job thanks to the PM but a PM is no guarantee that we will remain symptom free. Over time they may eventually tweak a combination of settings and meds to minimize your symptoms, but as in my case (and many many others) we often have to learn to live with various irritating but non-life threatening symptoms. I totally understand your frustration, but there often isn't a quick solution. Your SOB symptoms may or may not be directly related to your PM.

Rate Response

by cindyredd - 2013-12-27 01:12:41

Yep its on.. Med High #6
Going to speak with him about the RR

Check Up: SOB Better :-)

by cindyredd - 2013-12-27 04:12:50

Hi All,

Back for the Dr thank goodness. feel much better!!
He upped the heart rate back to 70 as I keep trying to go below 60,
And adjusted the sensitivity in the rate response to cope with me moving all over the place.

I do feel better... Not perfect but better..

Also gave me a happy lecture since he almost fainted that I went to the gym yesterday lol.. his face actually went white hahaha poor man.. " I told him the girl that works on the machine told me to rock and roll as long as i don't lift my arm. Ohhhhhhe was not a happy camper...

lecture: I am still in recovery, i am still healing , i am still in recovery, i had allot done , then repeat :-)
I got the message...

Thank you for all your support. You all were right

Best Cynthia

SOB

by manaman - 2013-12-27 07:12:48

SOB doesn't always relate to your PM!!!
I fought that for 5 months before a heart cath revealed a couple of blockage (95% and 90%). Opened with stents and SOB GONE!
Talk to your cardiologist!
Cecil

Ya Gotta be.....

by donr - 2013-12-27 10:12:50

.....The biggest PITA they have ever met. THG is right on there. Then there is Cecil in the last comment.

BUT - one of the rules of fixing things is that when things go wrong after a procedure of any sort, whether it be on a heart or a big ol' honkin' machine, is to go back & examine what was last fixed for creating the problems.

In your case, they installed a new PM. SOB IS a symptom of a mal-adjusted PM. Also - you don't need to wait any &^%$%$$%%^^ 6 weeks to find out if a change in PM parameter has an effect. That will be noticeable in just a few minutes usually.

You are getting the "Just another hysterical woman..." treatment by a bunch of MCP's (Male Chauvinist Pigs) who don't want to be bothered.

I just finished a sit down w/ my Cardio & discussed the same issue - but did not have to be a PITA to get the session - taking nearly 90 minutes while he tinkered w/ my AV delay & RR parameters, searching for an optimal setting among several variables.

Cynthia - you are NOT a hypochondriac, hysterical woman or anything else bad. You have a real problem.

Now go be a pit bull & get them to solve it You have earned it.

Don

If your RR is ON

by KAG - 2013-12-27 11:12:36

then my guess is that's what needs to be adjusted, as long as it's your PM doing it. Your lower rate 60 is probably not the problem. There are several adjustments that are used by the RR function and it may take a while to get the right combination for you, but keep after them. I agree that 6 weeks is way to long if you don't feel right. A piece of advice I've seen before that makes a lot of sense is that when they do make a tweak they should adjust only one thing at a time. See how you feel, you'll know within minutes, before they do any more tweaks. Otherwise if they tweak multiple things you / they won't know what didn't work, or what might have helped.

If your can meet with your pacer techs and discuss your symptoms, they should be able to figure out what to tweak. If they'll work with you.

What model PM do you have? If you're technically inclined you can go to the Medtronics website and look up the manual for your model. Even if you don't follow all the technical details you can pick up the terms used. It could help in talking with them. Many on this site can help you too.

Kathy

You Gotta be : re Donr, Knot

by cindyredd - 2013-12-27 11:12:49

Hi Donr,Theknotguy,

Thank you !!
I know I am getting the run around. :-) , The finally called me back last night at 6pm and Conveniently told me the Dr had a cancellation at 1pm today. So Off I go.

My Dr know's I am relentless. I am very in tuned to my body, He has been working with me for 2 years.So.. in saying that if he wants any rest over the New Year he know's he had better get me in.

I am never SOB unless I am on the elip machine for 40 min or doing squats.. these with my Vaso issues are a given to give me SOB. So I know what to do when that happens.

I took a shower last night and I was totally out of breath drying off. I am sure I am still recovering from all the physical stress of things, But I can feel something is off.

I am close buy not right. I THANK YOU ! Donr' I am not a hypo.. I have all your notes I will bring with me as well as what the medtronics help man said.He thought the RR need to be adjusted to be more sensitive since as i stated I am a pop tarte :0....

I will keep you posted.. I guess its hit or miss..till it gets right..

Hope your well and feeling great!!

Best Cynthia

RR - you gave the answer...

by donr - 2013-12-28 09:12:54

...to a lot of your problems. I, likewise have a Medtronic w/ a dual slope/sensitivity RR function.

Looking at your situation from that aspect, the simplest solution is tinkering w/ the RR functions. MY Cardio just spent time doing that & it worked wonders. There are two sloped lines of RR response to activity. Sounds like he should have you on the lower slope as opposed to the higher. Makes a big difference how the PM reacts to stimuli from a hyper host.

BTW: you deserved the lecture. There's no rush - you have the rest of your life to do all the things you want to do.

Don

Glad you're getting better

by KAG - 2013-12-28 12:12:25

Once you settle in and heal more you'll know if you need anymore tweaks. Just remember it can take a bit of time (as I think you know) but I'll say it anyway. :-)

Good time to focus on getting into your normal routine. Just don't over do it.

Kathy

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