Concerned Momma- new to all this info

Concerned momma

by Ileen - 2016-12-30 14:03:04

I am new here, just got mine last week. I have people telling me I am young to have this!( I am 64!) Ha ha. I can't advise much, but I can recommend you get a second opinion. That is always wise when it is a big issue. I was too told, I had 2 , three, sec pauses . One Dr said I needed it now, the other said it probably was not an emergency, but don't drive or be alone!! I decided to go ahead and get it. I know you are very worried,but I know of a young woman on here who has had 3 and I think she was twenty when she got it. She does everything, marathon, cross fit, just an amazing life. I hope she sees your post. I can't imagine what stress this is causing your . Just take a deep breath, and think about a second opinion. She sounds very healthy, this does not change that. Take care ileen

Forgot

by Ileen - 2016-12-30 14:07:42

Having a pacemaker will not shorten her life! She should not do contact sports  they could damage the pacer. People tell me you can do pretty much, if not more than you used to. Because, you will feel better . She is young she may not feel bad, but the pauses, can get worse eventually. Hugs, ileen

It'll be ok

by Lana11 - 2016-12-30 14:30:15

I was 20 when I had mine implanted a few months ago so not a teenager but still young for someone with a pacemaker. I won't lie, it was and still is a bit of an adjustment but she'll be ok. You sound like a really supportive mum, just like mine is, so you can help her just by being there. People give me sympathetic looks all the time when I tell them I have a pacemaker, and say "but she's so young" and I'm always the youngest person in the waiting room. But people react like that just because most associate pacemakers with only older people. I did myself before I got one haha. There are definitely young people about with pacemakers so she's not on her own at all. When I read your post I actually felt a tiny bit teary because I was just happy that doctors found out what was going on with her. I started passing out at 8 and didn't get a diagnosis until I was 18 and that was really difficult for me. But anyway, she'll be ok and also get her to join some young people pacemaker groups on Facebook if she wants, there are 1000's of young people on there with pacemakers

Be assured

by Good Dog - 2016-12-30 15:56:44

The need to have a PM at a young age can certainly be unsettling......to say the least. Clearly, she has a problem with the electrical system in her heart. I was in my 30's and just suddenly ended-up in the ER one day in complete heart block. Initially, I thought my life was over, but that was simply, because of the fear of the unknown. Within approx. 4-6 months I realized that I could do anything anyone else could do. I began playing competitive basketball and baseball with much younger guys. In my late 40's I decided I really wanted to get into shape. So I started running and an exercise routine that evolved into something most young people could not keep up with. My point is; having a PM had absolutely no negative impact in any way in my life. 30 years later, it still doesn't. The only inconvenience is having a 5 minute routine check every 3 to 6 months and a battery (generator) change every 10 years.

So I understand the initial shock, but rest assured that your daughter will go on and live a long and normal life. There is absolutely no reason to think that she won't outlive all of us! Now that is the good news! The best news is that after a short recovery period, she should be able to continue to swim competitively again.

I wish you all the best,

David

concerned

by Gotrhythm - 2016-12-30 16:32:51

My heart goes out to you. Of course you are worried. I agree about seeking a second opinion--no doctor knows everything, and sometimes a different perspective yeilds different results. One of the questions you might ask is "What are the benefits vs risks of waiting to install the pacemaker?"

Why people say, "I'm sorry she needs a pacemaker"... Well, it would be better if she didn't have this problem at all, but let me tell you this, If she has to have a heart condition, this is one of the best kinds to have. What she has is a pump that's just fine, but it has a faulty switch. All the doctors have to do is install a new switch (a pacemaker) and they don't even have to open up her chest to do it!

With a pacemaker, her life expectancy will be about the same as someone with no pacemaker.

Look through the archives here. We have had lots of teenagers and moms of teenagers. In the wide world, a teenager needing a PM is pretty unusual, but around here, it's not unusual at all.

Having a pacemaker need not hamper or limit her in any way. She can play any sport, go to college, have babies, watch them grow, and live to a fine old age herself.

Happy New Year. You and she are going to be just fine.

PS. Knowlege is power. Learn everything you can about her condition and about PMs. Google animated illustrations of heart block. I found good ones on youtube.

Grateful

by concernedmomma - 2016-12-30 16:41:00

Thank you all so much! I am so glad I found this group. Ileen thank you for telling me to take a deep breath. It;s exactly what I needed to hear today. I can not share too much with my close friends because they immediately get that fearful, Oh no things are grim, look in their eyes. 

Lana- you helped me realize she will be ok in the coming days, months after she gets her PM. I shared your comment with her so that she realize she's not alone and a PM doesn't mean you're going to die because your heart doesn't work "normally."

David- you gave me hope that she will have a long, productive life. She can still have adventures and live a full life. 

I am so grateful to you all for talking me off the ledge. I too associated a PM with "old" people and heart failure. I'm now more positive that things will be okay, maybe not perfect, but pretty dern close.

Happy New Year.....I will stay on this group to read everyone's stories, suggestions, issues, concers and joys. And I'm sure I will post again in the future to help me get through the days leading up to and the day of implant. 

Gotrhythm

by concernedmomma - 2016-12-30 16:46:55

I will go through archives. Thank you so much for all your valuable info. I like your analogy of a PM to a switch. I wish my daughter's Dr would have explained that to us. It doesn't seem quite so grim now.

I really needed all these words today.....eternally grateful!

Mary

To Concerned Momma

by Good Dog - 2016-12-30 18:59:43

If you are going to read through the archives and try to keep-up with posts in this forum.........................PLEASE keep in mind that many you are reading about here are experiencing problems and/or having difficulties. There are some that just post for information. A lot of good information is shared here.

MY POINT IS: the folks with issues you might read about here are in a very small minority relative to all the people with pacemakers. I just would not want you to get the impression that, because of the issues you read about here, they are common. I think that about 99% of people with PM's have no significant problems at all. That IS the point.

It is kinda like trying to google your symptoms when you are ill. You are likely to come-away with the belief you have something much more serious than what you really have.

David

David is right!

by Ileen - 2016-12-30 20:32:16

Read them , but take away only the positive! I had a post, negative one, about my fears, so I deleted it hopefully before other people could read it and worry. The people on here come for help, some like me, knew nothing, so asked so many questions because they goggled and found only bad news. I know what you mean about how people look at you if you tell them. I am determined not to tell anyone else! Not their busness, we should not share everything with people. Glad I could help! Keep that beathing , I know I am!!! Hope to hear from you with news that is good. Try not to worry, someone on here told me before I had mine last week,we will think about you but we will not worry! I think that was David!

 Good advice! Hugs, Ileen

Mobitz 2 also

by Pm - 2016-12-30 23:44:30

Hi concerned Momma,  Just saw your post now.  For some reason everything has been going to my junk mail.  UGH!  Anyway,   I also was diagnosed with Mobitz 2 heart block about 8 months ago and immediately had a pacemaker  with two leads put in.  I'm glad you are going for a second opinion as I'm surprised your daughter's doc suggested waiting a few months or even a year.  Also surprised that he commented that it is for life.  Yes, of course it is for life, thank goodness.  Remember that it is there to take over  only when needed.  Otherwise it is just sitting there comfortable waiting "just in case".  I also had skipped heart beats off and on for several years but silly me didn't do anything about it except to worry.  Then one evening it wouldn't stop and I had to rush to hospital where I was diagnosed and when I returned home, it was not only me, but me and my trusted new friend, St. Judes double lead PM.  I can sometime tell when it kicks in as I feel a little sort of jump start if you will, and I say "Thank G-d for my PM.  As far as continuing with her swimming....absolutely....of course....and any and everything else she wants to do.  ( For a short period of time, I think a few weeks she'll be instructed not to lift her arm above her shoulder). Other than that,  forget it's there, go for your checkups once every few months, (that takes like maybe four minutes) and continue with normal life....because it's going to be long and wonderful.....and may I add....worry free.  I do understand your worry.  It is normal,  but breath deep, take some long walks,  and tell yourself and of course your daughter just how wonderful modern medicine is.  Good luck to you and if you can, let us know how your daughter and you are doing.  I really hope your daughter has the pm put in without further delay.  BTW,  it is a very easy, short surgery done under local.   Keep well and try to stay calm.  

Coping

by Pacemum - 2016-12-31 08:52:08

Your daughter will be able to still participate in her swimming after pacemaker implant. Speaking from experience the cardiologists will probably ask her to stop her swimming schedule immediately after implant for a period of between 8 to 12 weeks.  Providing your daughter follows her doctors guidance she then should be able to resume her love for swimming after the required period.

It is probably best to also seek a cardiologist who also deals with children who are born with heart defects as they will have the most experience of the issues faced by younger adults.

My daugther is 16 and has been paced since she was a few months old and will be paced for all of her life.  She has never had any issues with her pacemakers.  Issues are rare but sometimes things do occur as you will notice from this forum.  It is important she attends regular checks after implant to ensure that any problems can be resolved quickly.  The battery generators will need replacing every number of years and the number of years for each patient varies.  My daughters have lasted from between five and a half years to seven and a half years.

Best wishes to you and your daughter.

Sue

Exercise and the heart

by Selwyn - 2016-12-31 12:17:09

It is not unusual to have a slow heart rate, some minor degree of heart block ( as you say due to the vagal tone conditioned by exercise). A pause of 2.2 seconds is below the threshold ( 3 seconds) for a pacemaker in a otherwise well person.  

To wake at night,"She woke up at 4am one morning and rushed to my room sobbing. She stated she felt her heart STOP. She was so afraid to go back to sleep. ", is a sign of anxiety, and as such is associated with SVTs. Extra ventircular beats are followed by a compensatory pause (felt as a palpitation and a 'stoppage' of the heart).

What I would do?

1. If your daughter is without symptoms in the day, then follow up monitoring should be carried out. A low blood sugar can be detected at the time of the 'faint' by a simple finger prick test. I know teenage swimmers often have difficulty getting enough calories.

2. If there is true type 2 Mobitz block, then maybe catheter electrophysiological studies would determine if this is a nodal problem. Often ECGs are difficult to interpret. A repeat ECG at another, calmer. time would be mandatory.

3. There is no established risk of sudden death at present.

4. If a pacemaker is needed, normal activity and a normal life span are to be expected.( I continue to swim a mile every other day as I have for the last 30+ years).

5. Note that excessive exercise is associated with an increased cardiac mortality, certainly as you leave your 20s and age furhter.

6. Another opinion?  As mentioned, it is always a good idea for life changing  medical opinions. Often doctors have team meetings and already get that opinion.

Now, personally speaking, I continued to exercise in middle age ( ? to excess) and had developed, asymptomatic, aptical left venticular hypertrophy  ( try to explain that to the life insurance companies!). My ECG has been abnormal for 10+ years .  There is a J shaped relationship to exercise. Too little is bad, too much is bad.  Certainly, for us older folk, there should be some moderation. I recently looked at this problem having had my 3rd attack of atrial flutter after doing too much exercise ( and I have had an ablation)- some people never learn!

I have sent you some more detailed medical information - I hope this eases your anxiety, and that of your daughter.

Kind regards,

Selwyn

Opinion

by LORIAAA - 2016-12-31 14:52:58

I had AV Block: 2nd degree, Mobitz I (Wenckebach Phenomenon) for 10 years before getting my pacemaker at 65.  

I have a lot to learn and this group is amazing.

My advice is always go for a second and third opinion with a good Cardiac Electrophysiology.  Always get the second opinion from a cardiologist from a second hospital.  Take your time and research your daughters specific problem and develop your questions.

My heart rate went low - in the high 30s, but I always felt great -never dizzy.  I went for yearly checks.  (I wish I would have done 6 month checks)  I was always athletic - a swimmer and road my bike long distance.

When my cardiologist retired I should have located another doctor specializing in heart electrical problems.  

Always follow advice from your cardiologist and your family doctor.  Once under a cardiologist care always check with him and your pharmacy before starting a new prescriptions. Too many mistakes are made.

This group is outstanding.  

Also new here

by todd_654 - 2016-12-31 15:41:46

I've had my PM for two weeks. I had 3rd degree heart block while I was in the hospital for something else, so the EKG machine was attached. Before that, I had no concern about my heart as all the normal tests looked good. I am 53 but had fainted a handful of times over the years (even prior to high school). The doctors assumed it was vagal. But this time, they had evidence; otherwise, my heartbeat looked normal. So, something always triggered mine and it was temporary. But this time, my heart stopped for at least five seconds (guessing, based on comments from people in the room)

I'm an avid cyclist and typically ride 10,000 miles a year. My doctors said I can resume my normal level of activity. Like the others said, though, no contact sports. But no restrictions on pushing my heart rate up on a tough bike ride.

Amazing support and info

by concernedmomma - 2017-01-02 00:08:08

Happy New Year everyone! Thank you all so much for your support and information. I am so grateful I found this group. 

I feel so enlightened and relieved knowing that my daughter can have an amazing future with no major disruptions because of a PM. 

Thank you all for sharing your experiences too. I don't feel so anxious or quite so fearful anymore. 

I will be calling a different Cardiologist to seek another opinion just to be on the safe side. 

Eternally grateful to you all!!

So good to be able to sleep at night!

by MathTeacher - 2017-01-15 23:21:48

Hi,

    I hope by now you've gotten a second opinion about your daughter.  I, too, had problems sleeping.  My heart would stop long enough for me to wake up gasping for air each night.  Sometimes I would be afraid to go to bed.  They originally told me it was sleep apnea.  This went on for years, and I never got used to it.  Really scary when you wake up before the gasping and know your heart isn't beating.  Since my pacemaker, it's so nice to be able to go to bed at night now and not have to worry about it any more.  I can really appreciate what your daughter is going through.