Recovery - still short of breath

Hi everyone,  I am a newbie.  I had my pacemaker put in on July 24th.  Just to give a little background - I have a rare disease called TTR Amyloidosis. It's where amyloids attack my heart and stiffen it, thereby making pumping of the heart an issue.  As a result I am in a clinical trial study for my disease.  I have been experiencing a lot of shortness of breath of late and the usual symptoms of congestive heart failure, bloating, etc..  My doctor suggested that I get a pacemaker with a third wire.  The third wire goes behind the heart and helps the chambers work in sync as mine were not.  I believe this pacemaker is called a biventricual pacemaker. They felt if my chambers were in sync, my heart would not have to work as hard and my breathing would improve.  In any event, when they went to put in my pacemaker, they discovered that my heart's electrical signals were frayed by the amyloid and that I definitely needed the pacemaker, even though initially I was getting it for the sole need of the third wire to sync my chambers.  However, due to open heart surgery four years back there were blockages which prevented the doctors from getting the third wire attached.  They tried very hard, but unfortunately, they were not successful.  That third wire was supposed to help me with shortness of breath due to the chambers not in sync.  My questions for everyone is this - do you feel immediate relief of your shortness of breath or does it take some time.  I ask because I was feeling shortness of breath due to the chambers not being in sync and in addition from my electrical signals not working and afib.  I was hoping to get some breathing relief just from the regular pacemaker, but now I am concerned that I will never be without shortness of breath.  Can anyone tell me how long it took to walk after surgery without any shortness of breath.  Thank you. 

1 Comments

SOB?

by Gotrhythm - 2019-07-27 19:42:23

Being short of breath can have many causes. Can a pacemaker help? It depends on what is causing the SOB.

Stripped of all the fancy programming options, a pacemaker is really a very simple device. All it can do is speed up the heartbeat. It helps a heart that is not beating as much as it should.

So, to the extent your SOB is caused by your heart not beathing as much as it should--either in the atrium or ventricles or both, the pacemaker might help. For instance before my pacemaker I felt pretty good, sitting still in a chair. My heart was healthy but I had exreme SOB when climbing stairs, because my heart did not speed up enough--i.e. go as fast as I needed it to when exercising. The pacemaker enabled me to climb stairs without getting SOB.

In your case, yout heart isn't healthy. There's no telling whether, or how much, a pacemaker will help SOB, because there's no telling how much of the SOB was caused by a slow hearttate, and how much other causes.

But I think giving in to despair is premature. You've only had the pacemaker three days. It can take a while for the heart to get used to being paced. Some people feel better immediately, but for some it takes 6 months to see improvement.

Feeling SOB is unpleasant, but I would urge you not to focus on that to the exclusion of everything else. Every organ in your body will begin to work better now that it's getting a steady supply of fresh blood, and the waste-laden blood is being taken away. That's a lot of ways you could start feeling better.

The difference probably won't be instaneous, but start looking for it. And even if the SOB doesn't go away completey, be ready to rejoice over any amount it gets better.

Work on seeing that cup half full. Attitude makes a difference.

 

You know you're wired when...

A thirty-day guarantee is not good enough.

Member Quotes

I have had my pacer since 2005. At first it ruled my life. It took some time to calm down and make the mental adjustment. I had trouble sleeping and I worried a lot about pulling wires. Now I just live my life as I wish.