Not seeing the light at the end of the tunnel

Background:
Began experiencing "odd" symptoms EOY 2015, slow, thunderous heartbeats, occasional almost passing out. EKG and blood tests from new primary care dr in Jan 2016.  Was told nothing was wrong other than very low iron, take iron supplements.  Symptoms worsened, primary care kept saying just iron related.  Went to urgent care in Feb 2016 and was told I was in complete heart block and had been even in Jan (primary care missed it on EKG).  Rushed over to hospital, pacemaker put in next day.  Hours after surgery tried to situp and began having involuntary diaphram contractions.  Evaluation revealed phrenic nerve was being stimulated by lead.  Back into surgery next day for lead repositioning.
After discharge felt overall ok although had to get used to faster heart rate and would sweat and get worn out easily.  Eventually began experiencing chest pressure (no pain).  Also kept feeling the pacing and pacemaker self testing.  Went back to my drs many times about the chest pressure and what I was feeling. They continually told me nothing was physically wrong with me and blamed chest pressure on anxiety (who wouldn't be anxious tho??).  Put me on anxiety meds. Had major chest pressure on out of county camping trip Aug 2016 and went to local ER and was admitted.  Drs there said I had a large pericardial effusion and pericarditis which was causing the chest pressure (why hadn't my drs been able to find this before it got this bad?).  Back from trip and prescribed lots of meds to try to reduce effusion and inflammation.  Eventually learned that original surgery lead placement had punctured my pericardium thus the effusion/inflammation.  Sought out new drs and have went through numerous trying to find competent drs.

Today:
Feel worse than I did pre pacemaker and frustrated that this is my new normal.  Granted I no longer feel the slow, thunderous heart beats and haven't experienced the sensation of almost passing out, but now still dealing with mostly constant fatigue, palpitations, chest pressure, etc after 2+ yrs.  On top of that I'm now overweight due to the anxiety medicine which I never should've been put on in the first place (have been off the meds for a while now but weight isn't coming back off quickly).  Exhausted from dr appts for my symptoms and dealing with non-believing drs on occasion that do not believe my symptoms are physical.  Have recently begun seeing a therapist but he doesn't seem to know what to do/say.  

I know I should try to think positive and be grateful I'm still alive and kickin.  I do realize things could be worse.  But I'm angry and frustrated that I continue to feel like crap most days.  It causes me to miss work and not feel good enough to participate in family and friend events/fun.  And since  no one seems to get to the bottom of why I don't feel well or what's causing my issues/symptoms, it just feels like this is it.  There isn't going to be any "better" days ahead.

Not sure what the purpose of my post is other than to vent.  I continue to try to make the most/best of every day and get out of my head as much as possible but I truly dislike the new me.  For those that have experienced post pacemaker surgery complications, how do you "keep your chin up" despite having constant/chronic health issues?

2 Comments

Believe.

by CFelix - 2018-11-21 15:08:35

Hi CJ2.0,

You have been through alot of stress and no one seems to understand you. It’s normal to feel how you are feeling.

There will be better days. Give yourself love and don’t pressure yourself to feel good. It’s normal to be in a bad place after our health has been shook. Give yourself a chance. Give yourself love. I know that it’s easier to say than do, but just be patient and give yourself time to heal.

Anxiety is tricky, it gives us signs that our heart may be in danger, palpitations, dizzyness, chest pain, fatigue... all anxiety.

You may not be the same person as before, you are stronger, you are more aware of the fragility of life. You may not see it now, you are in your bubble and it’s quite dark in it, but there is light all around, your just to into it to see the outside.

Try to find somebody to talk to about your anxieties and fears. And with your therapist, try to find ways to reassure yourself when you feel you’re in a crisis.

Don’t give up, better days are ahead. And when there not that good, a better one will come along.

One step at a time....

by BOBTHOM - 2018-11-21 22:49:37

You have found out the dirty little secret, doctors don't know everything.   If you don't fit the text book description they take their best guess.  You need to be your own advocate, research your symptoms, have educated discussions with your doctors.  Eventually you will find one that will listen and will help you.  It is very frustrating and can take alot of time, which isn't easy when you're feeling miserable, but it's sometimes what we have to go through to get to that better place!  Good luck!

You know you're wired when...

The meaning of personal computer is taken a step further.

Member Quotes

I'm 35 and got my pacemaker a little over a year ago. It definitely is not a burden to me. In fact, I have more energy (which my husband enjoys), can do more things with my kids and have weight because of having the energy.