new pacemaker

Hi everyone! 
 

i just got my first pacemaker after experiencing quite a few episodes of prolonged syncope with asystole theoughout the years. I also have hashimotos and a slew of other issues that aren't quite bad enough for treatment yet- we are just "watching". I just got my pacer last Tuesday and was able to go back to work today (also I am 23 F, so any tips about getting a pacemaker at a young age are appreciated!). i have way more energy than I ever have before and getting my PM has already been amazing- even after 5 days. I've also dropped some weight already- did this happen to anyone else? I'm assuming due to the increase in my metabolic rate?

 

edited to add: I have the antibodies for Hashimotos, but my TSH levels are fine. Taking synthroid would cause me to be hyperthyroid, so I get blood work every 6 months to check my TSH levels. My doctors want to take thjngs one step at a time to determine what treatment works best, and the cardiac stuff was the most pressing. 
 

I've been to nearly a dozen doctors that told me my symptoms are psychosomatic, hence the multitude of episodes. It took me years to be listened to. My current doctor, who is fantastic, put me on two medications and I tried the POTS exercise therapy program, as well as supplement changes, to determine what we are really working with here to make sure that surgery really was my last resort. It ended up being the last resort for me, but I do feel better knowing that I gave everything else a good effort. Today I am a week out from surgery, back to work, and feeling pretty good!

6 Comments

Weight loss

by Lexitoo - 2020-03-02 20:08:00

I am a much older female and had a pacemaker installed two months ago today, and I am happy to say I have lost 6 lbs so far. I had gained about 12 lbs over the past couple years, despite all efforts. My doctors ignored my concerns. I continually complained that after a life time of being slender...why would I gain weight ( very slowly, like 1/2 lb a month, but like clockwork). I dieted, always was active, even started IF , which I loved and still do.  But only after the pacing upped my HR....solved. I even saw a nutritionist!  I actually think the excess weight around my midsection started my afib.  Anyhow, congratulations! You are off to a healthy life. Guard and respect it.

"Just watching"

by AgentX86 - 2020-03-02 22:48:45

Unbelievable! You had syncope/asystoles, and your doctors were "just watching"? I'd not only fire them but I'd have a lawyer stake their head on a pike right outside the hospital.  Syncope is life threatening on its own but asystoles are a direct route to SCA. 

You're only a few days out of the OR and it's really good that you're feeling a lot better aready.  I did too, euphori inf fact.  That settled down after a few weeks but still a lot better.  

Your weight loss could easily be fluid loss due to your impoved heart function causing improved kidney function.  All of your organs will be better served by more blood. That's undoubtably why you're feeling so much better.  Your brain is working better and you're probably sleeping better too.  ...or will be after the wound heals so your position isn't limited.

being paced young

by Tracey_E - 2020-03-03 12:16:02

I got my first at 27. I'm 53 now. My best advice is live your life and don't let your health define you. I forget the pacer is there most of the time, after all these years it's just a part of me. A part I'm really grateful to have because it gives me a great quality of life. I get sad when I hear someone say they hate their pacer, or they don't want it. I felt awful without it, I feel great with it. What's to hate?? Also, I'd be dead without it so there is that! I see it as a miracle of technology and feel blessed to live in a time where there is a fix for my heart condition. 

I, too, had a huge burst of energy after surgery. It's amazing what a normal heart rate can do! Good stuff, that oxygen :o)  I was suddenly able to do things I'd only watched others do for most of my life and became a kid in a candy store trying out new things. I haven't really slowed down since. I just got back from visiting my youngest daughter, we skied and made plans for a hiking trip in Europe in the fall for her graduation. I'm doing a 5k with my Girl Scout troop on Sunday, and a 10 mile run with my older daughter when she comes home for spring break next week. 

Not sure what else you have going on that they're just watching, and this may be something totally different, but I had a few abnormalities in my blood work before I was paced. They all went away once I had a normal heart rate. Obviously pacing is not a cure-all for everything and I've never once read scientific proof so this is just my own personal theory, but organs starved of oxygen aren't going to function as well as they should. edited to add, a better heart rate isn't going to fix anything related to autoimmune disorders. 

If you have questions about being paced long term, feel free to message me any time. Young and newly paced can be a scary place, but most of us heal and move on and learn it's just a little bump in the road. 

Young Guns

by nhorner10 - 2020-03-03 15:21:46

Glad to hear you're already noticing a difference! I'm 24yo and had my pacmaker placed last August. Honestly, the surgery and physical aspect of it have been a cake walk. My only real physical limitations are slightly reduced mobility in my left arm when raising it upright and no intense overhead weight lifting.

The mental side of it has been a different story - it's really a lot to wrap your head around. The average age to get a PM is around 75, so getting one so young can feel isolating, like there's no one that really understands you. It's not like we have a lot of friends and peers our age that have also had heart surgery, in fact I don't have any. What's gotten me through it is time, the power of positive thinking, and learning as much as I can about what's wrong with me (this forum isn't a bad spot either). 

Feel free to reach out if you have any questions, and remember that the grass is as green as you make it.

Hashimotos is serious.

by Graham M - 2020-03-03 18:59:55

Welcome to the club.  I am fairly new to being paced, and  can identify with the way you are now feeling.  Pacemakers don't just save our lives, they increase the quality, and I am pleased to have mine, even though it was a hard road to get here. I had only one episode of syncope, and that was enough for me - I admire the way you seem to have coped with multiple syncopes and asystole. I agree with AgentX86 about the treatment of your doctors.

I also have Hashimoto's (it's rare in men, but I seem to have been unlucky), and I didn't have any treatment for years, until it got so bad that I nearly collapsed.  I had the following symptoms:-

Severe myxoedema causing me to put on a huge amount of weight (mostly fluid).

Chronic fatigue and muscle weakness.

Swollen tongue so that speaking and eating were difficult.

High BP.

Dry flakey skin.

Hair loss.

Constipation.

Chronic heartburn.

Untreated Hashimoto's is potentially fatal and can cause enlargement of the heart or AV block.  I would urge you to get some treatment - it's only one or two pills each morning and it makes the same difference to the way you feel as the PM implantation.  It's also a good way to lose weight!

Best wishes,

Graham.

Newbie comment

by BradyJohn - 2020-03-04 23:15:34

I'm 8 days into life with a pacemaker.  I'm 56 y.o male, I too thought pacemakers were for old people :-)  However, after feeling more energy even on the operating table, and feeling strangely 'more well', also better breathing, etc, I wish I had had this done years ago.  I run, hike, cycle and kayak, and I can't wait to get out there again soon.  Maybe it's a bit of post op euphoria, but being able to stand up without a head rush is for real.  

Pace to you all.

:-)

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