Troubled Heart, Cluttered Mind

Hello to all, My name is Lmo and Im 30 yrs of age.
All my life Ive known that I would eventually need a Pacemaker, I have a Complete Conginital heart block and Murmur. Recently my Doc told me 'its time'! Im not really scared of the Pacer- but the after math of it all.
I have several questions and am hoping someone can offer some advise. So, Whats changes? Will it be the clothes I wear? I like tube tops and halters, you know the girlier side of things. How will my sleep be affected? more restless nights, I already suffer from Insomnia. How visible is the PM under the skin? Im tall and dont weight more than 145lbs, my Doc said you 'might' see it since Im thin. How true is that? I live in CO and the weather here can be tricky, will I be affected by extreme cold or warm temps? Will there be irritation to the skin when out in the sun too long? What about returning to work, Im a massage Theapist part time, Financial Counselor part time and Clerical Healthcare Support during the day....needless to say I rarely have any time and Im always on the move.
Generally speaking, how long before getting back to 'normal' routines?
Any advise you have would really help me out, Im not trying to prolong the procedure but I have TOO many unasnwered questions before making this decision....Ive been told it takes a while to get back into the swing of things. Please help ease my mind of the mental agony.

5 Comments

Welcome....

by Pookie - 2009-04-22 08:04:33

Everyone is different. Everyone heals at a different pace (no pun intended). So, it's very hard to say exactly how long it will take you to get back to "normal".

The scar...yup, you'll have one. Again, depending on the doctor and how your skin heals....will determine what your scar will look like. Perhaps you should check out the few pictures (including mine) that are on the gallery, a few of us posted pics of our pacemaker or defib scars. I think mine looks great considering they were in there 4 times! I too am very thin (116 pounds at 5 feet 6 inches) and mine does stick out a lot, but it doesn't bother me at all. I still wear anything I want. If the scar shows, so be it. I am sure as we get older, the thoughts of a scar falls to the bottom of our priority lists. However, I can truly understand if you are a younger person.

Your sleep...well, again, everyone is different. I found that the first month I didn't sleep well at all, but once I discovered the multi ways of using a pillow, I slept better. You'll find your way. You might be slightly uncomfortable for the first few weeks, but in time, it will get better. Perhaps you might ask your family doctor for a sleeping pill if you find you're not getting the rest you need.

The scar & the sun....just always make sure you wear sun protection. For me, I just make sure that I dab it a bit more generously with the lotion.

Returning to work....now that is "the" question.!! I took only a month off after having 4 surgeries within 10 days (I ran into some problems with my leads falling, etc). That was a big mistake...looking back I returned to work WAY too early. Then 6 months later after my 5th surgery (as the pacer moved into my armpit) I was smarter this time and took 2 months off!!! Again, it all depends on the individual. It's surgery, and you must give your body a chance to heal.

I hope I've helped you a bit, but I'm positive that more members will post their suggestions and responses shortly.

You sure found a great website....the support and knowledge of the people here is priceless.

Good luck and keep on asking questions!!!!!!

Pookie

Think of it as an angel on your shoulder

by sand dollar - 2009-04-22 11:04:54

Hi,
I can understand all of your thoughts and questions. You have had years to think of them. I had an emergency pacemaker put in 4 months ago at age 52 so I didn't have time to think on all of this. I can tell you my experience and it might help just like the person above told you.
Everyone is different as are the different brands of pacemakers. Mine is a Medtronic dual chamber, that means I have a wire in the top and bottom of my heart so it beats as it should when it goes off. I am not pacemaker dependent, did your doctor tell you if you would be totally dependent on it?
My surgery was sudden and I knew when I woke on the table that something wasn't right. My heart was beating out of sinc. The next morning early they do an x ray and test the pacemaker, one of my wires did not stay put so they had to go back in and re do it all.
I was in the hospital 3 full days. I was very sore when I got home, and told not to raise my arm above my shoulder for several weeks along with no lifting over 5 pounds or I risked pulling a wire out again.
Sleeping was very hard, I am a side sleeper and could only lay on the right side which made my hip and shoulder sore. I would sleep upright in the recliner some too. I finally tried to lay on the pacemaker side at about 7 weeks and found that I could do it for a few hours. I was sore for about 10 weeks and still have some jabbing pains from time to time the doctor says are the nerves that are cut through. One of the problems was wearing a bra, the strap goes right across the incision. I found a new Maidenform bra that has the straps located further out that misses the scar and it has helped so much. The incision is bright red now and is still a bit itchy. Again the doctor says it is still healing inside. You can wear anything you want that is comfortable. The scar in only a few inches long and from straight on you can't see the pacemaker but from a side view you can see a slightly raised area. It took a couple months for all the swelling to go down so give that time. I may try some of that scar therapy. The thing is, I know this will have to be done again in 8 or 10 years so I will try to keep the skin in the area in good shape so it will heal well.
This will be my first summer with it so I will use sunscreen and try and protect the scar. I don't think heat or cold bothers it.
If you fly anyplace you can walk right through the metal detectors, I fly all the time and they never go off. My friend who has a pacemaker told me she has no problems either. They will give you a card to carry but if you show it, they send you to a different line where you will get patted down. I would rather not so I don't even tell them. Oddly enough the machine at the door of Barnes and Nobles bookstore goes off every time.
After care also includes visits to the pacemaker clinic where they test and adjust it if needed. Also a phone in machine that I haven't used yet. One thing they didn't tell me is that the machine does a self test during the night when you sleep, mine occurs at 4:39am every morning. Sometimes I feel it if I am restless. Now that I know why it does it I feel better. My doctor has been great and patient with all my questions and visits. He said it does that to set the voltage needed which can vary all the time. They can turn the function off but doing so would use the battery faster as they would set it on the high side manually where as the machine is so smart it takes only what it needs.
I would say that you will do fine, you are young, and should bounce back quickly. Just don't overdue.
Seatbelts on cars are a pain, still is. I tried one of those padded things but it made it worse. I just pull the belt down lower. Try not to worry, be glad we live in this day and age when they have these little machines to help us. Good luck with it and stay in touch on the site, there are lots of great people here to talk to.

Hi Lmo

by sputnick - 2009-04-23 04:04:00

I am only skinny too and my pm does show, but I find it doesn't bother me as much as I thought it would. I thought I would feel self conscious when I went swimming after, but I don't think anybody else really noticed it, and if they did it really doesn't matter. Tell yourself you will belong to a special club of people who are able to live a longer and healthier life than they would otherwise be able to!
As for sleeping, I used to wake up quite often during the night, bur since I had my pm in (12 weeks) I sleeplike a top!
Good luck, Jan

Go for it.

by ElectricFrank - 2009-04-23 12:04:47

It shouldn't be all that limiting. In fact you will likely feel better. You can have it implanted under a breast (easy for a man to say) which eliminates the bump on your skin. The only down side is that it takes a bit longer to recover.

Plan on taking time off from the massage work for a couple of weeks or so. It requires quite a bit of arm strength even for the more gentle kinds. As you can see I am a fan of massage.

As for sleeping the first few nights after the implant it helps to sleep on the side opposite the pacer and put a pillow in front of you to support your upper arm. You might also try some of the slow deep breathing you likely recommend to your massage clients.

So, that's my free advice (and worth every cent you paid for it)

good luck,

frank

mine doesn't show

by Tracey_E - 2009-04-24 12:04:23

A few of us here have submammary implants rather than the standard under the clavicle. I was 27 and underweight when I got my first one (5'6", 110 lbs, small boned), my cardiologist was worried about a lump showing too much so he called in a plastic surgeon to help him make it look good. Submammary still isn't common, but it's not as rare as it was when mine was first done. Odds are your doctor hasn't done it that way, but it's not that rare or difficult and he should be able to find out about it easily.

You'll only see my scar if I wear a string bikini and throw my arms up in the air! (and I'm not 27 and 110lbs anymore so that's not a problem, lol) It's a bit more work to bury it like this and recovery is a bit longer but I feel it is totally worth it. A scar and/or lump isn't the end of the world, but with a little creativity on your surgeon's part, you don't have to have either one. My scar is on my side, about where the underwire of my bra hits. The pm itself is buried behind the breast, I can barely feel the edges of it if I poke around looking for it. I have an itty bitty scar on my chest where they put the leads in, it doesn't show now unless you look closely. I never have problems with seat belts rubbing or carrying a backpack, common complaints among women with a traditional clavicle placement.

I've got CCHB with a murmur also and always knew I'd end up with a pm. I'm 42 and on my 4th one now. The most important thing you can expect is to have a lot more energy! I was astounded at how much better I felt. I didn't realize how tired I was until I felt better. We've got one of the easiest conditions to fix with a pm. Our hearts set the pace and do the beating, the pm just steps in and completes the broken circuit. I can do things now I never dreamed of having the energy for before. I hike, ski, work out, anything I want!

It shouldn't have any affect on your sleeping. If you are more active and energetic during the day, it may help your sleep.

Weather won't have any affect on it. Altitude doesn't either. I live at sea level but my parents live at 7500. I tolerate the altitude a LOT better now than before I got the pm.

Desk jobs, you can expect to be back at work in a few days. You'll be sore but it should go away quickly after the first week, completely by 4-6 weeks. You won't be able to lift weight or raise your arm higher than shoulder level for 6 weeks, so it'll be a bit longer before you can return to mt.

If you have more questions, please don't be shy! Thinking about it and worrying are a lot worse than the reality. I'd be willing to bet you're back on here after it's done, saying how good you feel and you can't believe how easy it was.


You know you're wired when...

Your pacemaker receives radio frequencies.

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I wouldn't be alive if it wasn't for pacemakers. I've had mine for 35+ years. I was fainting all of the time and had flat-lined also. I feel very blessed to live in this time of technology.