Where do I begin?

Hello everyone,

I'm a 25 year old female and had a pacemaker implanted 6 days ago. A bit under 4 months ago I had a tricuspid valve replacement because of having both Ebstein's anomaly and damage to my tricuspid valve from what my surgeon suspects was rheumatic fever. I have a porcine valve. On my last day of cardiac rehab my nurse determined I was experiencing 2nd degree heart block while exercising and sent me to the ER. These symptoms had never been present before in therapy but I had began experiencing them when climbing the 5 flights of stairs to my old apartment the last two weeks. The pacemaker was implanted later that day (I had planned on oral surgery to get my wisdom teeth out that day, still need to do that). 

I have a hard time even describing the sensations to my doctors about my heart when it wasn't beating, pain wouldn't be the most accurate thing, hallow is the word I want to use but it seems like that means little to them. Now I'm not sure if my current issues with the electrical pathways of my heart are because of the new valve or were occurring before and attributed to the obviously damaged and malformed heart valve I had. It took 22 years for someone to diagnose the Ebstein's anomaly and 5 cardiologists over 10 years before the surgery to fix my valve was mentioned as something to do now. Cardiologists before my current one were always waiting for ny symptoms to become much worse than light headed, dizzy, palpitations, and chest pain when stressed out. I wasn't on any medications before the first surgery. Now I'm on beta blockers and aspirin. My mother had been told I'd need heart surgery in my 40s when I was a child. Now after waiting a decade for one surgery I've had 2 in less than 4 months. 

To top it off, I live alone and am alone. I moved into a new apartment 3 days ago and can't unpack. I'm still going to work, because I have no time or money to stay home after the time I took off for the 1st surgery. Any suggestions to help with the recovery, positive stories, or other realistic advice? My moral is pretty low and the take it easy message everyone keeps giving me shows how little they understand about what I am capable of doing and an overestimation of my nonexistent support system. (By capable I mean, they seem to think I'm not in enough pain to barely move off my couch or stay awake at work.They seem to think I'm debating running or heavy lifting.)

5 Comments

A few thoughts

by Grateful Heart - 2016-11-30 09:39:07

I see you have a little stress in your life.....new surgery and new apartment.  Both can be overwhelming one at a time.

Some things in life we can control.....others not.  If you have no help from family or friends, I would call the hospital where you had the surgery and ask to speak to the Patient Advocate.  They are there to help you.  Explain your situation and ask for help and guidance, even if it is at home help for a little while. 

It sounds like your new cardiologist is a keeper.  He saw the problem and fixed it.  He didn't postpone the necessary due to your age. 

The surgeries are behind you now....recovery may be slow but each day you will see some progress.....baby steps.  It may not seem like it now but it will come.  If you are still in pain, that should ease up.  Ask your Cardio what you can do for the pain regarding meds, tylenol, etc.  He knows your condition and is best to advise you.  

Stay hydrated with pleny of water to flush out the lingering drugs in your system.  They can also make you very tired.  Many of us never needed meds before our heart woes but they are keeping us going so don't fret the meds.  

Good luck and keep us posted.

Grateful Heart

rough times

by Tracey_E - 2016-11-30 10:21:55

You've had a rough year! Hopefully you've been through the worst so it's just a matter of getting through this last bit. Boxes will wait. Take care of yourself first for now, do what you can and don't stress over the rest, take what support and help you are able to get. I know it probably doesn't feel like it now but this is temporary. 

It's very possible you had the heart block the whole time. Second degree block is sneaky. It means sometimes you're in block, sometimes your heart beats normally, so unless you happen to be on a monitor when it happens it can go years undiagnosed. 

I got my first pacer for 3rd degree block when I was 27. That was before the internet so I couldn't easily learn more, my doctor had no one else like me, and all the other people I met with pacers were 3x my age. Terrified doesn't begin to describe it. Fast forward, I just turned 50. I'm healthy and active, have two kids in college, run a business, do Crossfit 5 mornings a week ... No one looks at me and sees a heart patient. There's nothing I want to do that I cannot, and those first days when it hurt and I was scared are just a vague memory now. You'll get there too. Many of us have been in your shoes and we're always happy to chat and answer your questions. Let us know how we can help you. Wish I was close enough to come take care of the boxes for you!

A new beginning

by Topdog - 2016-11-30 22:02:24

They say the bad things in life happen together.  I disagree, I say the new opportunities in life come all at once.  You have a great new apartment and a new lease on life.  Doesn't feel like it?  I can only imagine.  Each day will get a little easier and you will soon look back and wonder why you were so stressed.

You might not be able to move a box, but I found myself alone in a new city some years back.  I found a few of my favorite things and put them on a shelf.  Magically, the rest of my stuff followed.  

Take care of you.  The rest will fix itself.  

Been through a lot

by Cajun Girl - 2016-11-30 23:12:24

You have been through a lot physically and emotionally over the recent past, now into the present.  I can't imagine doing it alone.  I admire your ability to return to work no matter what the reasons.

I have been fighting my own battles this year.  I try to remember 2 things:

1) How do you eat an elephant?One bite at a time.

2) Many things about tomorrow I don't seem to understand, but I know who holds tomorrow and I know He holds my hand.

Will keep you in my prayers for a speedy recovery! Don't worry about the boxes, when you are ready, they will still be there.

Much appreciated

by Ncrespo3 - 2016-12-01 12:50:10

Thank you everyone for your stories, support, advice, suggestions, positive words, and the community that is here. I appreciate it a great deal and very much needed it. :-) 

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