Other heart conditions with a pacer

Hi guys! I feel like this is the place to turn to for support. I'm 3 weeks post op from my dual chamber buddy. Recovery has been rough for me. I was told in the hospital I have mitral valve regurgitation but its mild and well have to watch it.

My dad has heart disease, multiple heart attacks and had a quadruple bypass 3yrs ago. He saw his cardio this morning and was told he has a severe leak in his mitral valve and will need to have open heart again.

He started having his heart problems in his 40's. I'm only 26 and mine seem to be progressing quickly. I started having symptoms in Sept and had my pacer put in Dec 7th. They say my heart looks like a 50yr olds. My heart walls and valves are thickened and they don't know why.

Im scared for my dad, his last open heart was very hard on him and took almost a year to full recover. He says he doesn't want to go through it again. I'm also scared for myself that I'm following in his footsteps and doing it quickly.. Anyone have other heart conditions other than just their pacer or defib? This just never seems to end. My parents are upset with themselves for my bad genes. Its not their fault and I don't blame them. I'm blessed to have them. My dads going through the same things I am. But as a parent myself I understand why they feel that way ...

Lost in thought
Vanessa

7 Comments

HI Vanessa,

by sue uk - 2011-12-28 02:12:50

Heart conditions can appear at any age its not just us oldies who have problems.
l was about 6yrs younger than you & was also a young mum & it came as a bit of a shock when l was told my mitral valve was leaking anyway after a few yrs it was decided l needed a replacement by this time l was feeling really ill.So l woke up with a metal valve ticking away inside me & for 20yrs or so no health problems at all,l led a full life,worked full time had days when l felt a bit tired but not necessarily my hearts fault !
Ok, l am 55 now & the last 3/4 yrs l have had an assortment of heart related issues which have led to me having a PM & l still have heart problems that need to be dealt with in the future but at least l have a future & l will be worth a fortune in scrap metal !!!
Please tell your parents not to feel guilty,because that is a negative waste of energy & l am sure you do not want them feeling like that,also the op that your dad is facing is one that can make a big difference to his life in a very positive way.
I wish you & your family all the very best & please let us know how you are all doing, Sue x

I have had mitral valve issues since I was

by kathykat11 - 2011-12-28 05:12:15

12 and did things backward fronm what you and your Dad seem to be experiencing. I had my first mitral valve replacement at 20 had 2 difficult pregnancies and a couple of pneumonias and a 2nd mitral valve replacement at 25 anther complicated pregnancy comgestive heart failure and a mechanical mitral valve implanted at 29. Most people don't have that many of the same valve replaced in a whole lifetime but when I got the surgery I had decided before I got it that there was no need to get it if I was just going to exist...I lived. I made up for the lost years between 12 and 20 and totally overdid things. You can'r cram 8 years of living into a small time without some repercussions. The thing I got off track in trying to say is you can have a full and wonderful life if you don't let your condition stop you. I got my tendency to heart issues from my mothers side of the family 7 girls and only one good mitral valve in the bunch. But I am the only one our of dozens in my generation who had issues so it is the luck of the draw. I am just glad they can fix us now days. I have been a cyborg since27 September 2010. I don't consider only one artificial part to qualify me. I got my 2nd then and I will collect new parts as long as I am able, while I hope you never have to collect ,I am happy that they have them and they work so well. By the way I have had 2 additional replacements since the ones I wrote about here.
kathykat11

Heart Problems

by SMITTY - 2011-12-28 05:12:33

Hello Vanessa,

Twenty six years old and with the problems you list I can see why you might think your world is collapsing. But that may not be as near the truth as you seem to feel. Of course if you fixate on your health problems you can compound them in a hurry.

You are three weeks post PM implant. Why did you get a PM. Was it bradycardia, heart block, or to overcome a slow heart rate induced by some medication you are taking or some of the other many reasons. The reason is important to us here at the PM Club in order for some of to say "that is the reason I got my PM and this is what it has or has not done for me."

If your reason for getting one was to overcome occasional slow heart rate, then I say forget you even have a PM, unless the implant site is bothering you and this seldom happens. But if yours is an on demand PM, then just remember that if that PM quits this minute, your heart function will simply revert to what it was doing before you got the PM and you would have the same amount of time to get help as you did before you got it. The list goes on and on as to why we should not worry about having a PM.

As for letting people know I have a PM I seldom do that but if someone does know and asks me a question about it I just tell them I don't even know I have a PM. My heart knows its there once in a while, I guess, because I'm not having problems the PM would help.

You mention recently being diagnosed with mistral valve regurgitation. My wife was diagnosed with this problem when she was 9 years old. She turned 83 last month. It has never caused her any problems, so maybe your's will be just as symptom free as hers. As for following in your dad's foot steps, I am not a believer in that. We have three sons age 54 to 61 and none of them have a heart problem. I'm 83, had my first heart attack in 1952 at age 53 and had quadruple bypass surgery. Since then I've collected four stents and a pacemaker which I got (the first one) eleven years ago and a second one 2 years ago and I'm still here. So please don't think you have a little black cloud following you around. I'm not saying you have no heart problems, because of course you do, but you may have already seen the worst of the things to come from them.

So my suggestion to live life as it comes to you, that is one day at a time. And above all don't worry about that PM. The chances of it quitting are somewhere between zero and none. I'm sure you have heard of the Energizer Bunny, well he ain't got nothing on you and your PM.

I wish you the best,

Smitty

Hi Vanessa !!

by Tattoo Man - 2011-12-28 05:12:37

Hi, as one of the 'Cold , huddled masses' of the Cardio people out there,..your position is both at the same time quite commonplace and at the same time,..uniquely your own.
Sue uk has told her story, and we may all thank her for it.
For me , a new valve nearly five years ago was, in reality the best gift that our blessed, and 'oft maligned National Health Service could have ever given me.
A PM last year was a bit of a startling "gift" to be sure,....but.
IT WILL BE OK
Talk to us about your emotions and worrys/ needs.

You will not be alone, some are really great at Techie Stuff, some at Feely Stuff, others at all that essential Other Stuff.

Do keep in touch, I cannot speak for all, but for a guy, here in the UK,..your news is worthy of sharing.

Seems to me that when people post,...some reply,.. but SO many read,...and maybe its for the silent readers that this Forum has so much to offer.

Do take care.

Tattoo Man

not so bad??

by Vmurph - 2011-12-28 06:12:45

Its nice to hear I'm not alone. Thankyou for all of the imput. Ive accepted my pm and that my heart is not exactly healthy and am fortunate it is not worse. Just days like yesterday and today when I don't have the energy to get off the couch I tend to get aggitated.

Smitty they put my pm in due to my bradycardia.. I also have tachycardia. They call it Brady/Tachy from what I understand. I looked like a gray colored zombie before. My hr would be in the low 30s jump to the 180s and fall back to the 30s. Id get dizzy, blackout and all kinds of fun stuff. I blacked out cold after my surgery too, had perfect vitals everytime. The gentleman from St. Jude said I am pacing over 50% of the time. The rest of the time I am tachy. We are trying diff meds to help with my resting heart rate being 185 sitting on my couch at times. They say that is why I am so fatigued and out of breath all of the time.

I know my heart is not exactly healthy but could always be worse. The unknown of the symptoms i am still facing without a real explinstion is where my worry comes from. I was told in november i wouldnt need a pm by one doctor. 30 day halter monitor later and i have one. They say my pm took care of one of the ten things were fighting and this will be a long process of trying meds to try to get me back to normal. So ive been put on couch arrest and disability until further notice. I'm still unable to function at a normal capacity. They say its severr neurocardiogenic syncope. There's no cure just try to treat the symptoms ... its been 6 months....

I have 2 young kids in school that count on me. They understand I'm sick but they don't understand or like that I'm not better. My husband has been a saint with everything but I need to get well and return to life!! I am going stir crazy!

patch

by Vmurph - 2011-12-29 02:12:45

All I can say is WOW!!!! I'm going to make my dad read your story. The fact you kept a sense of humor through all of that.... I should be skipping down the hall singing a little diddy. THANKYOU for the prospective. Ive had a pretty good attitude so far from what ive been told. But your journey proves I'm agiant baby and need to "man up" loo

You have a gift of turning a serious story into a funny and enjoyable tale to read. I'm very happy you made it through all and with a wicked sense of humor!!!!

NESSA

we all share in something with the heart

by keveri - 2011-12-29 03:12:28

I had a new St. Jude mitral valve replaced by the Da Vinci Robot (1997) going into the heart from my right chest. It certainly is not as invasive as sternal opening but invasive without the big chest incision. The heart thoracic surgeon probes through your right side of your chest using the robot for markings and instrument use, ask your physician if you are a candidate. the mitral valve is the only valve that can be replaced with use of the robot because the valve is on the right side of the heart.
We never know all that's happening and physicians are too busy pushing you thru those 15 min. office visits. And remember it's all about money and insurance. Be a smart consumer. Fight for yourself.

I also have had ablation and electo-cardioversions for ongoing atrial fib and use coumadin and beta and calcium channel blockers, I continue with fatigue. With so many suffering with AF I feel something is coming to cure it soon.
Good luck
Jan

You know you're wired when...

You fondly named your implanted buddy.

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