I'm not sure how to handle all of this..

I just turned 21 and I've been diagnosed with complete heartblock since May when I passed out and had a heart rate of 48. I was in the hospital for 2 days and have been on a heart monitor since then. I'm also 29 weeks pregnant which complicates the situation. They're trying to wait until after I have the baby to insert a pacemaker for the sake of the baby but the doctors have all told me I'm going to have to have one and they're worried about how I'll do in labor being in complete heartblock with such a low heartrate. The guy who got me pregnant has all but removed himself from my life recently so I'm feeling really down. I googled pics of people with pacemakers and you can see it through their skin. I know I'm going to feel so bad about myself with a scar and a bulge on my chest. I'm just really sad and I wanted to know how other people have dealt with the whole pacemaker thing. I don't know anyone who has one and I definitely don't know anyone my age with any problems like that.

11 Comments

Hello from Uk

by Loopy Lou - 2008-08-07 04:08:13

Hi Hannah

I am so sorry to read your story .....

I am a lot older than you and have had my pacemaker for 3 weeks now.... I have two young children and know exactly how you feel about the pacemaker....... the scar and the bulge...

Well, I love wearing vest tops and t.shirts... and was very upset as I now have a scar and a bump - I am told the scar will fade as the surgeon did a very good cosmetic job...... the bump will go down a little bit but still not sure how much.

I am feeling a bit down tonight but have been chatting with some other who have had their pacemakers longer and have given lots of positive advice.

I cant really offer much advice Hannah but just wanted to know I was really touched by your posting and wanted to send a huge hug !

Regarding your pregnancy - I hope all goes well and you have support from friends and family.

Please stay in touch.... would love to hear from you and perhaps meet up in Chat.

where are you from?

Take care, and try and be positive. My pulse rate was lower than yours.... and I guess if Doc says you need one well, then you do.

Hope to hear from you again.

Love, Louise xx

I can answer part...

by turboz24 - 2008-08-07 05:08:30

Not being a woman, I really can't help with the pregnant situation, but...

There are choices when implanting a pacemaker. Several women on this site have their device under their breast, which I hear does a good job of hiding it better. You can also request a sub-pectoral implant, which will also not only protect it more, but basically make it unnoticable.

Most EP's should suggest a more cosmetic and hidden location for anyone who is younger and/or more active.

all the best and have faith

by verger - 2008-08-07 05:08:34

wow,
sounds a little rough, the guy wasn't worth it anyway. you're young, you'll be amazed how easily you adapt. plus it's just not you you have to worry about, you will soon have a family. as far as i'm concerned wear that scar like a badge of courage, and go get one of those baseball caps with pacemaker club written on it.

you hang in there, everything will be fine, in ten years you'll be able to laugh about it all.
best wishes,
verger

I'm with ya!

by big_piglet - 2008-08-07 05:08:42

Hey there...
I am new to this site as well and I just found out last week that I am going to be getting a pacemaker (don't even have a date yet). Last week I was a wreck and in the same place you are right now. The best advice I can give you right now is take FULL advantage of this site. There are soooo many postings that will help you understand everything that is going on. My biggest concern was the placement and I think we should be able to talk to the surgeons to have the pacemaker planted in a place that is less visible. I have known for a week now and because of this site and the people that will give their advice, I already feel ALOT better about the whole situation.

Another hello form UK

by Katielou - 2008-08-07 06:08:59

Hi Hannah,

Like Louise I was very touched by your story and hope I can offer a few words of comfort. I have had an ICD (which is bigger than a pacemaker) for several years now and I can honestly say that it has become such a part of my life that I really don't notice it anymore. The scar healed beautifully and very quickly, and is just a very thin line which is hardly visible. Of course there is a bulge, but it really is so slight as my implant is under the muscle and you certainly cannot see the shape of the ICD. I have just come back from a holiday in Cyprus and I spent all of the time in little vest tops and bikini's and never once have I been aware of anyone looking at me as though I'm a freak. In fact I've pointed it out to others and they have been quite surprised that I have this little generator in my chest.

I know it's hard for you to accept - it was for me but it does get easier I promise you. I don't consider myself to be any different and I gain comfort knowing that I'm protected against the unthinkable.

I hope you can find strength knowing that you will soon have a beautiful little one to love and care for and then I'm sure that you will be so glad that you have your pacemaker. I am so grateful to have my ICD as it has given me the opportunity to still be here with my children and the people I love.

We are all here to help you so keep posting, especially when you're feeling down. There will always be words of encouragement for you.

Private message me if you want to chat some more - would love to hear how you're keeping.

Take care,

Lesley

pregnancy

by Shell - 2008-08-07 08:08:21

I know right now you're going thru alot at a time that should be happy. I was born with a complete heart block and only got my pm 2yrs ago. (I'm 36) I had 2 kids now 11 and 8). My heart rate during both pregancys was the mid 40's. During labor the only thing my cardiologist wanted was for me to have an epidural no my heart wasn't strained. I delivered vaginally both times and had no problems.

My pm you ususally can't see unless I point it out. It doesn't bulge at all. The scar is small and light can't isn't too noticable. I wear tank tops frequently.

good luck. I hope you have family or good friends around to help you during this time. Let me know how you're doing.

{{hugs}}

by Tracey_E - 2008-08-07 09:08:55

You poor thing, what a lot to have dumped on you at once! Please feel free to vent here all you want and don't be shy about asking questions. I'd be happy to chat with you off list if you'd like. I have CHB also. I was diagnosed as a child and got my first pm in my 20's. What we have is rare around your doctor's office, but around here it's pretty normal :o)

I do not have a bulge or visible scar. I have a submammary (behind the breast) implant so the scar is hidden by my bra and the pm itself is completely buried under the breast. If I poke around, I can barely feel the edges of it and I always have to remind my doctor where it is. I'd be happy to tell you more about it if you want to know. I can wear strapless dresses and tanks, no one can tell I have it. I also don't have the problems with seat belts or backpacks that you sometimes hear from women with a more traditional location. And I breastfed two babies. My ob thought it might be a problem but it wasn't! The surgery is a little more complicated doing it this way and the recovery is a bit longer, but I feel it's well worth it.

48 really isn't that low. Low for the rest of the world, but pretty darned high for CHB! Unless it starts to drop off, you should be fine in labor. Did you do sports, etc before you were diagnosed? I was never above 45 until I got my first pm, and I put off getting it until my rate dropped off and was in the 20's. 40's is optional, 20's is not! LOL I was afraid of getting it and procrastinated until I ended up in emergency surgery one day. If I'd known how easy the surgery was and how wonderful I was going to feel, I would have done it years sooner. I was literally bursting with energy from the time I woke up after getting it.

It takes some time to get used to the idea that your heart doesn't beat like everyone else's, but eventually it will just be part of you and days will go by where you never give it a thought. I would have died years ago without it. Instead, thanks to that little chunk of titanium, I have two healthy children and an active lifestyle. I feel fortunate to have something that can be fixed relatively easily.

support?

by winesap - 2008-08-07 10:08:26

Goodness - sometimes life is so unfair. I agree that a pulse rate of 48 seems high enough to cause minimal trouble yet you say you have been passing out - we are all unique. I just had a checkup today and 48 is not a lot lower than my average pulse for the last 3 months - my minimum is set at 40 (I'm a 58 year old male). I'm thin and the nurse today commented that the scar was barely noticeable and no lump is visible. For a young woman, sounds like under breast may be the best option - be a demanding patient. Sorry the father of your baby is being a jerk - good riddance, but of course you need some support. Reach out - explore resources for support. This site can provide some but you will also need physical help that we cannot provide.

Hang in there

by kyrunner - 2008-08-07 11:08:39

Although I am not a women or pregnant I feel for ya. I found out last year that I had the same thing. 8-10 years of doctors telling that their was nothing wrong. But they still couldn't figure out what was causing my syncope, Then my heart stopped for 90 seconds, luckily I was getting some test done in the hospital at the time. They were able to look at of my data and finally diagnose me. Be thankful that it was caught while you are young, I am 40. It would seem that since they know what they are dealing with they can take all of the precautions to get you and your baby through the delivery safely. Good luck with everything.

Bump/scar

by janetinak - 2008-08-08 01:08:47

I am really pulling for you & hope you let us support you on this site. Being too old to be PG, I'll let the younger gals help you there. Good news about that above from Shell.

I am on my 2nd PM & it is in the usual site just under the shoulder in front of collarbone. I swim every day & no-one has ever noticed the scar nor the PM. I believe that it is typical that with time the PM settles into its pocket & the scar heals well esp. if you put Vitamin E oil on it everyday after everthing closes up.

Keep in touch with us, your extra large support group.

Hugs, Janet

hannah

by jessie - 2008-08-08 04:08:37

hi congratulations on the baby! i am so exited for you. do you have family nearby? when is the babe due? you are in england i think. you have universal healthcare right? so whe is he she due? i admire your strength. you will be okay. life is funny sometimes. please stay with this group of people. take care hugs jess

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Life does not stop with a pacemaker, even though it caught me off guard.