when is the best time to get paced

This is my second time trying to post this, so apologies if the last one went through and I am repeating myself.

Hello Everyone,
I am looking for thoughts or advise from mums with pacemakers on when is the best time to get a pacemaker.

I have a complete congential heart block, but to date I am relatively asymptomatic. I have been doing alot of reading re congenital heart block and it has scared the living daylights out of me. On my last visit to my cardiologist we decided that mayve the time is right to get a pm.

Now that I have made the decision I would rather do it asap, and not have it hanging over me.

However, I am pregnant and due in November. Since radiation is used during the implantation I will have to wait until after babs is born.

If I get a pm shortly after babs is born will I be able to breastfeed while recovering after pm insertion?

Would I be better off waiting until baby can hold on to me, that way lifting would be easier or would I be better off getting it in while baby cant move and therefore I dont have to run after him/her?

We also have 2 lovely litttle boys, aged 4 and 1 so I am not sure that I will be let off running around, pm or no pm

Both my and my husbands parents live reallly close to us. They are a tremendous help so I am not concerned re having help while recovering.

So any thoughts or advise would be greatly appreciated
Best wishes
Julie


5 Comments

when to get PM

by CathrynB - 2007-05-22 01:05:25

Hi Julie, As usual Smitty has given you great advice. Maybe you should see a specialized high-risk ob-gyn to discuss the safety issues relative to PM implant while pregnant. It's been 17 years since I was last pregnant, but I have 3 kids, as you will shortly. Presuming you gave birth to the first two (rather than adopted or are a step-mom), then you know what the post-delivery period is like, and it varies for everyone. If you found the first few months after giving birth not too challening in terms of the physical and emotional recovery -- and if your MD doesn't want you to get the pacemaker til after the birth -- then I'd have the PM implanted sooner rather than later after delivery. With a PM, most of us are advised not to lift more than 10 pounds for 6 weeks. Most newborns weigh something less than that, at least for a month or two. You would need help breast-feeding a newborn if you had a new PM -- someone to hand the baby to you, help you put a pillow under the baby to support it's weight, etc. But I don't see why it couldn't be done. It seems to me it would depend on how MUCH help you could expect from your parents and in-laws. If they can be with you almost every day for 6 weeks post-op, probably having the PM implanted sooner rather than later is very do-able. I don't think waiting for the baby to "hold onto you" is necessarily a good idea -- babies don't "hold" the way you'd want them to, and a baby's wildly waving arms could hit you and hurt your PM site. The risks of CHB are significant enough I would think you'd want to get the PM as soon as can be safely done. Please let us know what you decide, as we're all interested and care, and there may be others on this site some time with the same question. Take care, Cathryn

Rambling thanks

by juliek - 2007-05-22 06:05:21

Smitty and Cathryn,
Thank you so much for your replies.
Smitty, the answer to your question re has the heart block affected my rythm is I have no idea. I am 33 and was diagnosed with complete AV block at aged 7. My parents were told it was "little more than a curiosity", however, should any "wobbles" occur to get back to the doctor.
I have never had any symptoms of the block. I only became aware of the block when I was getting (or trying to get) life assurance. I have seen an electrophysiologist and done holter monitor and exercise stress tests. I have no structural defects ("heart is strong as an ox"). I have no abbherant beats and I reach very acceptable max rates on exercise.
I have had no problem with my 2 pervious pregnancies and my blood pressure is perfectly normal. During pregnancy my heart rate goes up to around 55, but this is to be expected due to the higher volume of blood circulating.
My cardiologist said that they would not put in a PM while I was pregnant. Although he is one of the top cardiologists in the country he said its very rare for him to see someone with CHB (I live in Ireland and the population is 3.5Million). I more or less get the impression that I am more worried about this that they are.

Cathryn with regards to the pregnancy, it is my third and I had no problems during either of my previous pregnancies, both boys weighing 9lb 7oz and 9lb 6oz, so that gives me very little time before they hit 10lbs. You also make alot of sense regarding "holding on". My youngest was 1 a few days ago and its great fun to jump out of my arms or steal my glasses (or both). Unfortunately a speciaist obgyn is not an option. There is a baby boom here and a paucity of consultants. Having said that I am very happy with the guy I managed to get. My cardiologist doesnt seem to think that there will be a problem, there wasnt either of the last times and has written to the obstatrician to that effect (with the added do watch out for wobbles).

So in conclusion, my cardiologist was going to consult with an EP he referred me to. At the moment I am waiting to hear from him so am more or less in Limbo. Thanks again for your replies and sorry for rambling for so long
Best wishes
Julie

Getting PM?

by SMITTY - 2007-05-22 12:05:50

Hi Julie,

I’m certainly not a mom, but I have some thoughts about your getting a pacemaker implanted at this stage of your pregnancy.

Unless the implanting procedure has been changed drastically since I got mine, the only radiation you will be exposed to is that from an X-ray used for the fluoroscopy. As you know a fluoroscopy is necessary for the doctor to place the leads in the proper place in your heart. I would say your doctor is the one to answer the question about that amount of radiation putting the baby at risk. I have no idea, but if it would, possibly shielding could be used as only the heart will in the direct path of the X-ray.

My next question is that if you have complete congenital heart block, is this affecting your heart’s rhythm. Upset the rhythm of the heart and its function can be impaired which can lead to less than optimum blood flow which I can see as being a risk for the baby.

I can see why you are concerned and I’ll repeat, I think your doctor is the best person to answer your questions.

I wish you the best.

Smitty,

Good luck

by Meerkats - 2007-05-23 08:05:03

Julie,

You got great advice from Smitty and Cathryn. I'm sure you and your doctors will figure out just the right thing for you to do.

I also have complete congenital heart block. Mine wasn't diagnosed until I was in my 20s and I was never symptomatic (except for things I didn't know were symptoms at the time, like slow rates, cold feet, etc.). I had my PM put in last year (I'm 40) as a precaution because I too was getting scared reading the latest research. Luckily for me, my daughter is long past the carrying stage so I didn't have the same concerns you have.

I just wanted you to know that yes, CCHB is pretty rare...but you're not alone.

Hang in there and keep us posted.

Lisa

what to do

by pace1 - 2007-05-23 10:05:53

I'm 32 and was just diagnosed with complete heart block this past December! Complete shock that it was never caught earlier. I'm very active and used to run quite a bit, so doctors just thought that was why my heartrate was lower. I like Lisa, did it more for precaution. (Hi Lisa!) I too never had any symptoms and it's been 3 months since I had the PM and I truly don't feel any different. I don't think my dr. knows what to tell me because I was disappointed that running, etc. didn't become easier for me. ANYWAY, I had an almost 2 1/2 year old and a 10 month old when I had it done. My biggest concern was how I was going to care for my kids because I read a lot of where you couldn't lift anything for 6 weeks, etc. I know everyone is different, but my dr. just told me for a week I should take it easy, but after that don't lift over 20 pounds with my left arm. It was MUCH easier than I thought, but I was still careful. I saw several EP's before going with the one that did my surgery and they all asked if I had complications during my pregnancies and I said none whatsoever and they said I was lucky because you can go into cardiac arrest with the stress of labor. I recall reading someone asking about the recovery because they were going to have the PM put in and they were pregnant. I too, did not think it would be a problem, but then that's why I'm not a dr., don't know! Oh, and to FINALLY answer your question, I would think breastfeeding shouldn't be a problem...you're a little sore for about 3 days and then you feel much better and that's without pain meds. I've heard many people say they didn't need anything more than Tylenol; personally I took pain meds twice just to help me sleep and then I was ok with the little bit of pain. To answer your other question, I would think you'd be better to do it sooner than later....newborn is smaller (of course more fragile!) and hopefully yours will sleep a lot so you can try to get some rest. If you have parents and your husband there ready to help, take advantage of them! The downfall is lack of sleep from a newborn might make recovery a little harder. I at least was getting to sleep through MOST of the night MOST of the time! Good luck!!

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