I don't have a PM yet, feeling scared.

Hello there! I'm really glad I found this site before the big day. You guys seem all great!!!

Sorry if my english is bad, my mother tongue is french! I'll try to make it short! 

I'm a 33 yo woman with SSS and WPW syndrom. Recently, I've been having some episodes of atrial fibrillation (AF) and my heart rate was around 200 BPM. When it happens I feel my heart pounding in my chest, but other than that nothing really (no chest pain, no shorthness of breath, no dizziness) I got some IV pronestyl and I got back to NSR with some PAC. I got 5-6 episodes in the last 3 months... They couldn't give me some propafenone PIP because one time when they gave me IV pronestyl I went into infranodal block but only for a couple minutes.... so the PM story started... If they want to treat my AF, I would need a PM... I was in complete shock, I cried like a baby. I felt like as if my world was ending.  My last episode was Feb. 2nd. Back to the emergency, scared as I ever was, the doctors decided to try IV pronestyl again and it worked perfectly! My cardiologist, who's also an EP, decided to prescribe me 150mg Propafenone 2  times a day. I've been AF free since! 

But he told me that a PM would come soon... maybe in a couple of months. 

I work as an MRI technician in a heart institute... (how ironic!!) this means I might loose my job... I know now some PM are MRI compatible, but they still have to be programmed before and after the MRI, in my case everything day I'm working??!! 

Also, I'm very active and go for long hikes with a heavy backpack... should I have it under skin or under muscle? (I heard there is more lead fracture when under muscle)

I feel fine right now, I'm very ambivalent to have a PM since I can live a normal life now with propafenone. By the way my echocardiogram is conpletely normal (small left atria) and I wouldn't be a great candidate for ablation according to my EP.

I feel very sad right now... Every time the idea of me having a PM comes up, I'm crying...

I know you all seem to be fine with your devices...

Any advice / opinion anything you can think of could help...


4 Comments

MRI

by PacerRep - 2018-02-26 00:00:54

I'll leave the coping portion of your question to the more qualified here. However, If you work in an MRI field, ask your implanting doctor for the Biotronik device. They have a new MRI mode they can enable Pre-MRI, but it remains active for 14days. Once the device detects a magnetic field >= 10millitesla, MRI mode is activated automatically in the device and it will revert itself back after leaving the magnetic field. No post check is required and you can have as many "scans" you want in 14 days.

 

I would get the reps number and just contact them directly and have a coffee ready for them every 2 weeks to activate the MRI mode.

 

Just make sure it has "ProMRI Autodetect" don't let them give you the cheap device, it doesn't have this feature. The Eluna device has it (biotronik), not all device are created equal.

check this link out for more info

https://biolink.biotronikusa.com/global/assets/products/promri/BR340hq.pdf

Active exercise, backpack OK

by Theknotguy - 2018-02-26 12:04:02

Unless you are doing very hard exercise I don't feel you will need the under muscle implant.  

Mine is under the skin and I've worn the heavy backpack through airports and on a tour of the UK.  Got along fine as the padded strap didn't press directly on the pacemaker.  

You may have some stiffness the first couple of times you wear the backpack.  It will be that way until the scar tissue is stretched out.  I would suggest some short backpack trips to get the muscles worked into the new positions.  That's four weeks after the pacemaker implant.  

Long hikes are very good for the heart.  

Sometimes the idea of having a foreign object inside the body is frightening.  There can be a lot of angst before you actually have the device implanted.  

A hard concept for me to convey is that I don't like having the heart problems that make me need a pacemaker.  But I am glad to have the device because I can lead a normal life.  A concept of having two different mind sets about the pacemaker device.  I hope it translates into French well.  

Hopefully with the medication you won't need the pacemaker for a very long time.  Then, when you do, maybe you can have the inside the heart pacemaker instead of the large, bulky, under-the-skin device.  

My best wishes for you. 
 

Tears come but don't stay

by Gotrhythm - 2018-02-26 12:58:43

Cry as much as you need to. Recognizing we have a severe, potentially life limiting heart condition is a shock. And tears are a normal part of emotional healing when we experience a loss. But as Theknotguy says. Be clear that what you have to cry about is your heart condition. 

Your loss is a heart that beats dependably on it's own. 

Fortunately, with a pacemaker, despite the heart condition, you can live a long, satisfying-as-you-want-to-make it life.

I think asking about the backpack indicates that you are already moving toward acceptance and looking for ways to cope with a pacemaker. You won't let it hold you back from what you enjoy. That's really good.

Full acceptance doesn't happen over night--at least it didn't for me--but it does come.  Stay open and positive about job possibilities. Maybe you can continue in your job. And perhaps letting go of this one will lead to a much better job.

Keep your eyes on the future. Despite the heart condition, you have one.

Thank you!

by Hiker Girl - 2018-02-26 20:26:57

Thank you both!! I thin Theknotguy got something wright; I don't like to have problems that make me need a pacemaker. That's exactly it! And Gotrythm; acceptance doesn't come overnight! 

I was hoping for a leadless pacemaker. Unfortunately, I would need two wires and the leadless can't only be put in if you need one lead. Also my EP said that I'm too young to have that kind (like the Micra) be cause when the battery life is over, they leave it in the heart, and they don't know how much of these can be put in the RV!

I feel very lucky that I get some extra time to accept the situation and see options since I don't need a pacemaker right away! And I hope in fact that the meds will buy me some years, who knows! Thanks again and I'll be reading you!!

You know you're wired when...

Bad hair days can be blamed on your device shorting out.

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