Can i go back?

A week ago I was happy and relatively healthy. After my implant on 12/10 my happy life ceased to exist. I expected some issues like getting used to having a machine regulate my heart. I was prepared for some pain. My EP told me I needed a PM for bradycardia and I stupidly and naively went along with the suggestion. The procedure itself wasn't too bad although I did feel more pain during than I anticipated. But it's the after effects that nearly killed me. A reaction to Vancomycin. My neck and shoulders seized up after I got home that night. Didn't sleep a wink. Next day came shortness of breath and a trip to ER where they discovered a pneumothorax and i was admitted to the hospital. I was terrified and felt close to death and unable to have my husband by my side due to Covid. Next day (2 days post implant) I developed pneumonia. Got to come home after 2 days in hospital and then started having tachycardia episodes. Every time I think the worst is behind me something new crops up to scare me. Anxiety is through the roof, can't sleep even though I'm exhausted. Every time I start to fall asleep I wake up with a start, like the PM won't allow me to sleep. I just want my old life back! Will I ever feel normal again? I'm so afraid of dying every minute that I've come to feel it might be a blessing. I just want the damn thing out. 

I have been asked to provide more history. I am a female, almost 69, living in Indiana, on Medicare with a great supplemental insurance plan  Retired in 2015 but now work part time as a school crossing guard. Suffered with SVT for 30+ years which was fixed by ablation in 2019. Felt great for 10 months then got fatigue, syncope, shortness of breath. 30 day Holter disclosed Sick Sinus Syndrome with episodes of non sustained v-tach. Pacemaker suggested. My sinus node was worn out. I thought I did my research and mostly heard good things about pacemaker like "you'll feel so much better with a PM!" I guess I acted prematurely when at my last visit with EP he said "it's time" and said it could be done close to Christmas break so I would have plenty of time to recover. My bad, my mistake. I am totally responsible for the predicament I'm now in and maybe my story can help someone not make the same mistake. I feel I probably could have lived many more years just the way I was, but I took the entire situation too lightly thinking "it's just a minor procedure and I'll come out of it so much better." 

Thank you for your words of encouragement. They really help! I will reach out to my EP or primary care doctor for more help and support. I think I'm in a deep depression and desperately need help.

 

3 Comments

I totally sympathize

by lmljohnson - 2020-12-15 01:31:54

The first couple of weeks were rough for me as well. I had a CRT-D implanted Nov. 18 th. I felt like just as I would fall asleep the dang thing would zap me. I was totally exhausted and defeated. I developed what I believe is RLS which doesn't help with sleeping either but it did get better. I don't sleep through the night by any means but I do feel more rested than I did in the beginning. My procedure wasn't all sunshine and rainbows either and dealing with it all alone is rough. Lean on your husband for moral support and know that it will get better. 

Give it time

by Gemita - 2020-12-15 05:22:19

Dear Kat,

I am truly sorry to hear of the trauma you have been through.  You have been more than unlucky to have suffered so many of the potential risks associated with this procedure. 

Looking at your medical history, I believe there was good reason for your pacemaker (SSS and syncope which are potentially dangerous if not treated) and I would like to believe that you initially had confidence in your doctors to go ahead with implant.  Unfortunately there are risks with any intervention, however necessary the intervention, however good the doctors, and you have been more than unlucky to have suffered from so many of the associated potential complications. 

Can you go back?  Should you go back at this time?  I believe not dear Kat.  It would just make things worse.  You need to recover your strength, your peace of mind before you make any decision at all.  I am not surprised you feel worse with your pacemaker after the trauma you have been through but the pacemaker is really not at fault here.  It wants to protect you and it will protect you once you are healed. 

Please try not to question yourself any more.  It will only cause harm and you need to build strength.  Your decision to have a pacemaker based on your history and your investigations alone suggests to me that a pacemaker was absolutely needed since your symptoms would only have got worse and low heart rates and syncope are not without considerable danger.  You will feel normal again, you will get your life back and a better life.  You didn't act prematurely.  You and your doctors acted in good faith, with knowledge that the dangers of doing nothing were greater than having a pacemaker implanted.  Your body has been traumatised by the procedure Kat, yes I cannot deny that, but with peace of mind, adequate healing time and confidence that you absolutely made the very best decision at the time, your body will heal.  Of that I am certain.

I have Sick Sinus Syndrome (SSS), episodes of non sustained VT, SVT, Afib and many other atrial tachy-arrhythmias.  I also have a history of syncope.  Initially, following pacemaker implant, I had some pretty awful reactions when I noticed my arrhythmias worsened and I got tachycardia every night for several months.  Today I am free from the fear of losing consciousness, my  heart is quieter and I am at peace with myself.  My higher heart rate suits me very well and I am able to do more.  I love my little device because I know it is protecting me.  My husband (who is 82) bless him suffered too during his pacemaker implant when he was traumatised and had a bleed leading to pneumonia and pleural effusion (fluid on lung) which had to be drained.  He made a full recovery and now wouldn’t be without his pacemaker.  

You haven’t made a mistake Kat.  You are just feeling very low.  Keep talking to us, please, and let your fears, disappointment, doubts for the future come out.  You will find that a lot of us had the same feelings and physical discomfort when we first received our pacemakers.  Hubby and I certainly did.  Give everything time to heal dear Kat and your world will be brighter.  

Therese xx

Update

by Katwilly - 2021-07-12 16:32:13

I am now 7 months post implant and doing pretty well. I see my Electrophysiologist every 6 months now. At my last checkup he said I'm pacing at 80% so I see I really needed the pacemaker! My anxiety attacks have tapered off thankfully. The summer heat and humidity have been hard to deal with and I'm getting lots of palpitations. But all in all I'm grateful to be alive!

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