Hi
I'm hoping someone can help me.... My daugther is 11, with heart disease. She has had 3 open heart surgeries, during one they affected her conduction system and she has been thriving(quite well)
with 2nd and 3rd degree heart block for 10 yrs.
Her cardiologist down sized his practice so we now have a new cardiologist.In the Spring she had her yearly appt, he strongly recommended a pacemaker. She has been complaining alot lately about being short of breath, but no other symptoms.
SO.....what to expect???
Any info from fellow pacers would be appreciated??
The surgery?? the recovery?? What you have to stay away from??
battery changes??.........so many questions, awaiting an appt with pacemaker clinic.....hope you experienced people to help.
thanks in advance.

hello, is anyone out there ????
Ode2acardiacNode can you help me please???

bump....bump....bump

Sorry I cant be of more help. Idont have a pacemaker or anything like that. However a very dear friend had a pacemaker and I can tell you a little bit about what she went through. I know she could call in over the phone and have pacemaker checked out. It was neat how she did it. Just held the receiver up to her chest for so long and they could check the battery and all from that. You need to keep cell phones away from the side the pacemaker is on. You can still be around microwaves and things like that. Again I am sorry I cant be of morehelp.....

I would suggest www.naspe.org It is the website for the specialty of electrophysiology that deals with pacemakers.

thanks pms barbie and test for your replies, I will check out that website.I still have not told my daughter yet, we are on a waiting list right now for the pacemaker clinic(they will probably answer alot of our questions)

Hey there! I was just wondering how your daughter is doing, and if she had to have a pacemaker? I also have one, but I have had mine since birth (I am now 20 yrs old), b/c I have complete heart block in the lower chambers! Good Luck, and God Bless!

Hi holinessgurl,
Thanks for being concerned about my daughter.I have been patiently waiting for the hospital to call us, so I finally called yesterday, and the pacemaker clinic didn't even know about her. Well I was livid to say the least, as I had recieved a letter from her new cardiologist in mid August.
I always thought that our Canadian health care was great, but I'm really starting to wonder!!!!
So, fill me in, please. I guess you can't really tell if the pacemaker makes you feel better if you have had it all your life. But fill me in on everything else.Is there devices you can't be around?How long do the batteries last?Is it major surgery to have it hooked up?

Hey there hypokelly!
I'm really sorry to hear that you haven't heard from the hospital, but I really hope that it works out soon! Like you said, I really can't tell you if having a pacemaker feels any different than not having one since I have had one all my life! But I can tell you several other things about them! First of all having a pacemaker doesn't mean you are disabled as some people seem to think! The only things that I really can't be around or on are tanning beds, roller coasters that flip, and the radiation oncology department in the hospital! I have had my pacemaker battery changed 4 times, but they usually last up to 8 years. The surgery isn't real bad, and the recovery only takes a few weeks, and about 6 to fully get your complete energy back! Most of the time you only spend one night in the hospital after the surgery, and most of the pain you have is in your left arm, and upper chest, but it isn't real severe! I just got back from the University of Virginia last week, and my pacemaker report went real well! And now the pacemakers are getting better and better as technology increases. I have had one so long it's like at times I even forget that it's there! So really it's not a big discomfort at all, and it's well worth having especially if your life depends on it. As far as going and doing things, I am thankful to say that I can go as much as I like and do as much as I like! Having a pacemaker doesn't really hinder you from doing things that you want to do! So, if your daughter has to have one implanted I really hope and pray that things go as well for her as they have for me, which I'm sure that it will! If you have any other questions please feel free to ask me, and please keep me informed on how you daughter is doing! Good Luck, and God Bless!

Hi,
A great website for pacemaker patients is http://www.pacemakerclub.com. It answers many of your questions and concerns. I've had my pacemaker for 4 years and am about ready to have mine replaced in the next year or so. I'll then upgrade to a pacemaker/ICD unit. I hope that the website helps you and I post there as well. Look forward to talking with you some more.
~Ode

few years ago my brothers heart stopped. He was in the shower and blacked out, he just thought he didnt have enough sugar or something. Thank god his wife made him go to the hospital. from there he was given a temp pacemaker and shipped to Toronto. Had a proper pacemaker put in within days. (i was told that it is usually a 6 week wait but because my brother was only 26 at the time he got bumped up) He was out of the hospital 3 days after that. He took it easy, but he almost immediately returned to work. Within a three month period his heart stopped 40 times! Thank god for his pacmaker. They dont know what is wrong with his heart, they say that is appears healthy other than that. His pacemaker we joke is smarter than him. They hold this device over it and it tells his medical file how often it kicks in and everything jsut in case he is admitted to the emergency room. The one he got is a beta version though. Toronto university said that they would pay for everthing if he tried it out. From what i have heard it is much better than the regular ones. His goes to each ventricle and atrium of the heart and measures precisely the amount of "kick" he needs. I dont know much more of it, but i will see if i can get hime over to answersome of these questions for me-for you. I hope everything turns out great for you and your daughter. Medicine has advanced so much that they even have artifical hearts now. so i am sure it will turn out all great. You will be in prayers.
Francesca

Hi all
I want to thank all of you that responded, that is why these boards all wonderful, so we don't feel like we are alone.
Well I still haven't recieved a call back from the pacemaker clinic, I'll have to call back early next week.
I'm concerned about how my daughters' heart will respond to a pacemaker,as her heart has been in 2nd (to 3rd degree at times) for so long. I'm sure the heart block has put stress on it, but I don't know,like has her heart enlarged? I wished they had just put it in her when she was a baby, so I wouldn't be second guessing the docs.She has been through so much already.
Holinessgurl have you had other heart surgery?....howcome you have heart block?
Fran.....You must be from Canada too.....I hope your brother is doing well.Thank God for technology......have they ever found out why your brothers' hearts stops? had he been sick?
Ode thanks for the website......good luck with your replacement surgery. Why does it have to be replaced?......how often?.....how do they know?Have you had other heart surgeries?How come you have a pacemaker?
TIA, Kelly

Hey Kelly! Other than having the battery replaced in my pacemaker, I have not had to have any other heart surgeries, nor do I have to take any heart medicine! Which I am very thankful for! My mom found out when she was just 4 months pregnant with me that I was going to have to have a pacemaker, b/c I had complete heart block in the lower chambers of my heart! My mom has Rh factor blood and it affects every 3rd child and I was her 3rd child so that may have some cause to why I was born with complete heart block, but other than that the cause is really unknown. I hope you hear from the doctors soon, and I pray that everything goes well with your daughter! Please keep me informed, and let me know if you have anymore questions!
God Bless,
Brooke...holinessgurl02

Hey Kelly
They still have not figured out what is causing my brother's hear to periodically stop, but they (doctors and technology) have made it so it doesnt affect his lifestyle. He runs his own photography business and is a very busy guy. He is on no med, has to watch his salt intake though. He only has to go see the cardiologist every three months now. But other than that he doesnt feel sick or anything out of the usual.
Goo dluck with your daughter, I am sure with the advances they have made with heart surguries and pacemakers your daughter will take well to it. Things always work out, for whatever reasons, stay strong and know that you have support here. I agree these forums are a godsend.
Francesca
ps yes i am from canada, southern ontario actually.

My son Nathan was diagnosed with complete heart block in October 2002 at Children’s Hospital of Michigan. He was fine until his 18-month check-up, or they never notice his slow heart rate. He turns 4 this January and has no real symptoms yet, just short of breath now and then. The doctors tell us to wait till he shows more symptoms and then they will put a pacemaker in. maddynathan@aol.com

Hi kolar,
sounds like you are in the same boat as my daughter.My daughter just recently started having symptoms of SOB, but no other signifigant symptoms, but with her different degrees of block, her new cardiologist strongly recomends it as "they have done studies" .
We are still waiting for word on the app't.
Good luck with Nathan, has he had heart surgey? what caused the heart block?

Hi hypokelly,

I guess we don’t know what caused it. They just notice his low heart at his 18-month check-up. (about 50-60 bpm) From the test they did. Everything else with his heart looks O.K. He has never had any surgery. Good luck with your daughter. Kolar

Hi all,
My daughter just got out of the hospital(3 days)
She complained of headache, dizziness, nausea, blurred vision.
She had a heart rate of 35bpm, well home hospital freeked......
ambulance took us to "Sick Kids" in Toronto, been there many times, but not by ambulance.
The 1st day said monitoring, probably put the pacemacer in while we were there.2nd day,don't think she needs it right away, if at all.They did an angiogram to make sure the vein was good enough to put pacer wires in,3rd day said put pacemaker in, but not right now.We never did see HER OWN cardiologist.
I really prefer not to have one, but if its better for her.....lets do it.
They didn,t want to jump to conclusions..... thought symptoms might be from her recent ear infection with the antibotic,.....or because she is close to puberty.........WHAT!!!!ARE YOU JOKING,SHE HAS 2ND DEGREE HEART BLOCK(sometimes 3rd degree)

Hi all,
Its me AGAIN.
My daughter still has a headache, she was vomting this am, but still wanted to go to school, she has no fever.GP is away on holidays. We were at the hospital 2 nights ago, as she had a rash all over her chest from either the dye from the angiogram, antibiotic, or maybe the hand cream I had rubbed on her dry skin.
My anxiety levels are hitting the roof.

I hope that your daughter feels better soon. Just a word of advice (I know that this is easier said then done), but try to relax and stay calm. Your daughter will feel your anxiety and sense it. If in doubt get a second opinion. Keep your chin up and try to stay positive. I have found that it helped me in my tough times of being a cardiac patient. I'll keep you in my thoughts. Keep on ticking...
~Ode

HI Ode,
Thanks for replying, Please tell me what your symptoms were before you got your pacemaker.Are my daughters symptoms indictative of the need?I'm sorry for sounding like a woman on the edge, but I feel helpless and my health has not been the best lately either.
She never complains about headaches, but this headache dosen't seem to leave.I thought headaches in cardiac patients would be high bld pressure, but her bld pressure was 104/53,HR ranging from mid 30s to mid 60s.She is still active, but she does complain about being tired and SOB occasionally.
TIA,kelly