I have lupus and my baby has complete heart block. We brought him home but he became unwell and his heart rate dropped more. We had to rush him to hospital for a pacemaker fitted. He is getting better slowly but has some fluid on his chest. I am scared to bring him home and scared of his future with this thing in his chest. Has any new mum like me had these fears. I know i just need time to get used to it all it was a very traumatic time. I love him so much.

 

my daughter is going on her 1st trip to colorado for a week she is 15 an has her pm for 4 years now an i am a little scarried to let her go away that far from me but she will be with there family an they willhave cell phones but i am so so so worried to let her gobut i did check with drs. an they said that ok she can go an she will be ok but i wont be ok i will worry an i alwy will forever its hard to have you little one with a pmso anyone canhelp me be ok with this something that could be helpful to tell me plz thanks allot

 

Hi again!

Just wanted to say a thank you to the people who gave me help and advice about my issue with pain and wanting have a baby but not getting any answers from anyone. You've really helped me and also made me consider options such as hypno-birthing which I'd never heard of but believe it could help a lot. Its good to know there are people in the same situation who have gone through childbirth ok and have beautiful children. Its given me hope!

Sx

 

Hello:
My 2 1/2 year old had his pacemaker implanted when he was 6 months old. He had complete heart block. He is doing well but seems to be completely dependent upon the pacemaker. My husband and i notice that in the heat of the summer he tends to get lethargic. He doesnt recover after running around when it's hot as quickly as i think he should. I am wonderng if it's due to the pacemaker. His pm is set so that as he runs around it bumps it up to a higher rate to allow him to have energy. I know that when i get hot i feel my heart beating faster at times. We are planning a family vaca to disney and it;s so hot right now. We spoke to the disney people who said we could get a pass so we wouldnt have to wait on line in case he ca...

 

Hello everyone.

I hope you are all doing ok.

I wondered if anyone would be able to give me some advice. I'm 27 years old, live in the UK, married and desperate to start a family. I've had my pm for 4 years and have 2 years and 10 months left of battery. I have it on demand and use it 50% of the time to control a condition where I would faint and my heart would stop whenever I experience pain or anxiety.

I have asked doctors, consultants, pacing techs if I will be able to have a baby and will I be able to cope with the delivery because my condition is triggered by pain. But none of them will give me a straight answer, they all just tell me to ask the next person. Yesterday I asked the pacing tech and he s...

 

Hey all! The day is almost here... TOMORROW I GRADUATE MIDDLE SCHOOL!!!!!!!!!!!!!!!!!!!!! Only 4 more years of torture and then I can go to MED SCHOOL!!!!!!!!!!

 

Hey, yeah, I know I spelled amazing wrong, but I like amazazing better. Anyway, I found two AWESOME camps for kids with pms and ICDs. One is by the Children's Hospital in Boston, and I think it's free, but I'm not certain. The other one is totally SWEET! it's called Camp Odayin and it's in Minnesota. This one costs only $25!!! They eat dinner for breakfast and breakfast for dinner: how cool is that!? I won't spoil it ALL for you, so if you're interested, Google them!!!!!!!!!!

 

Hi everyone, I recently found this site, Im a 32 y/o mother of a 2 year old. I've had my pm since 2004. They say I have maybe 2 years till I have the battery changed, but Im planning on having a couple more kids. Did any of you have to plan children around that or can you have it changed if you are pregnant? I'd appreciate any input- thanks

 

I have had my pacemaker for almost 9 years and rarely give it a second thought. But in 2 weeks I'm getting my first replacement. I'm worried, because I'm still nursing my 8 1/2 month old, and have no intentions of stopping (especially since he's a tiny preemie who needs the best nutrition he can get to catch up).

I have a supply of milk pumped for the day of the surgery, and possibly some extra after that, but I'm very worried about how we'll get through this without affecting my milk supply, or affecting my wound.

My surgeon says I won't be able to lift Dawson for 2-3 days, which will be difficult as he nurses multiple times through the night as well, so I'll need round the clock help. Also, while I'm in the hospita...

 

i have such a hard time with my daughters heart prob she has long q t syndrom and sick sinus syndrome then she got epelpsy at the age of 10 she died onme on christmas morning an 8 times after that it so hard i am scarried evey time she leave on her own , but i hope to share more with other moms who have been there may help me out.. it has caused me probs like im dizzy dail now from all the stress anyone else going throue this to ok hope to chat w someone

 

I'd like to respond to the message sent requesting information about camps that are offered to kids with PM's. The hospital for Sick Children, which is located in Toronto Ontario offers a summer camp to kids with Pacemakers. The camp is open to children that are pacemaker patients at the hospital. It is fully staffed with doctors/nurses etc, and is a great opportunity for the children to meet with others with similar medical concerns....and just to give a little info on the hospital, "Sick Kids" is merely a short form name for this great hospital.

 

Hey i have noticed that lots of people have AIM And Yahoo instant messaging . I do too it would be cool to talk to anyone with an account !!!

 

My son is 21 he has had a pacemaker since age two. We let him live a pretty much normal life. No contact sports, But he has a brown belt in karate, Also played played baseball since age 5. Now at age 21 his softball team is ranked second in Indiana NSA. Also he works full time as a asst manager at a local store and goes to college full time and is on the Deans List. We are very proud of him. So parents with special kids good things do happen just love them and be there for them. Our son was also fed with a feeding tube till age 4

 

Our son is about to have his motion detector turned on in his PM next week. Currently he has CHD which required pacemaker implant at 10 mos of age after two open heart surgeries at 4 days and at 4 mos of age. Over the past month he has not been very active when awake and we think that it is because his active heart rate has been between 80 - 100 bpm. His current PM is set to respond at 80 because he went bradycardic when he slept.

Is there anything that we should be aware of from the motion detector and him having a suddenly fast heart rate? Don't have a clue what to expect from the doctor / nurses or from our son. Any advice would be great.

Thanks

 

hi peoples of pace.I am only 11, and i have had my PM for 6 years. I got complete heart block from my mom b-cause she has lupus. If anyone else has the same stuff and is near my age, then let's chat!!!

 

Maisie has had her Pacemaker since she was 2, her school are in the process of having wireless laptops in each class have heard so many things about this but woundered if any one had any advice

 

Hi,

I found one document which contains general guidelines for Child care with Pm.

Here it is....

http://www.cw.bc.ca/library/pdf/pamphlets/Pacemaker_392_mar06.pdf

 

Hi,this is my first time on this website and I'm hoping someone out there has been through a pregnancy with an abdominally placed pacemaker. I'm in the very early stages of pregnancy for the first time at 44 and I just had my last pm change in May and they were forced to locate it under my abdominals (very painful). They had to place new leads externally and the ventricular lead touches my diaphragm and sometimes causes a spasm that feels like a shock. I'm worried that during pregnancy this will get worse. Anyone out there been through a pregnancy with this situation?????

 

Hi, I just found this website. My son is 15 years old and has had a DDDpacer since he was 2. He has a 2:1 AV block. He has had 3 surgeries since 1994 for replacements and leads. He played baseball, ice hockey, soccer and swimming til he was 12. Now he concentrates on soccer and swimming. He played in a National Soccer Tournament this winter and plays for two teams at all times and swims in the summer. He will also be a lifeguard this year. I have read many comments here and went through many of your similar fears and concerns. Some coaches feared my son's potential health needs so I was always at every practice and game til he was 12!
I finally found a good chest protector online that I think everyone needs to know about. M...

 

Hi
I am a 33 year old mother of two beautiful girls aged 2 years old and 6 months old and had my first pacemaker implanted in November 2007 - 3 months after the birth of my second daughter. I was diagnosed with complete heart block at 17 weeks into my second pregnancy.

I have breasfed my baby from birth, and despite assurances from my Cardiologist, I am still so nervous that the pacemaker will somehow damage my daughter since she is in such frequent contact with my chest and obviously with breastmilk produced by my body which now has a pacemaker in it! The pacemaker is just below my left collarbone. I know in theory, nothing should 'leak' from the pacemaker battery, and surely if it was to leak I'd have some kind of infec...