Tate's Getting PM on Aug. 6

Hello new friends,

WOW! This is all so new to me. Please offer any information that might be helpful to us. Our soon to be 5 year old son (Tate) will receive a pacemaker on Monday, Aug.6, 2007. Tate was born with Hypoplastic Left Heart Syndrome and has recently developed a slow heartbeat & irregular heart rhythms. Tate has had 3 open heart surgeries & several heart caths during the past 4 1/2 years. He has gone into total heart block on 4 different occassions. We knew he would have maintenance type stuff along the way with his complicated defect, but never imagined he would be receiving a pacemaker.

He will get the kind that goes into the abdomen. We've been told that it's an "on demand" pacemaker. This is all I know.

Please write back and let me know that this is REALLY ALL OK!!!

Fully Relying on God,
Cheri Lewis and family
Paris, TX

8 Comments

God Bless Tate and your family!

by bini - 2007-08-01 09:08:00

Dear Cheri,
welcome to the PM club. This is such a helpful group of people!
I am 31 years old and got my Pm implanted on June 27th and I am already seeing dramatic differances!

Tate seems like a very strong boy who had already been through so much. Like Tammy said above -if Tate can go threw open heart surgery he will make it threw the Pm surgery.

PM's for many people are truly life savers, I think of it as like my gardian angel.

Please know that Tate and your family are in my thoughts and prayers...and if you ever need to chat please feel free to email me privatly. Please keep us updated as to how Tate is doing.

With all my caring thoughts sent to tate-
Christine

Welcome!

by tcrabtree85 - 2007-08-01 09:08:57

Welcome to the club you came to the right place for questions. Tate sounds already like a little fighter. I know that through the time that I have been on this site I have heard of other parents coming on having young ones getting a pacemaker. I am 21 and got mine in March. I am completely dependent on it. I can tell you that it does help keep the heart beating correctly the surgery is nothing compared to open heart surgery. I am sure he will make it through it just fine. The question is already out waiting for Smitty's response on explaining exactly how the pacemaker works he is very good at explaining things for all of us.
It will take time for the adjustments to get right but a pacemaker could help him live a lot longer. I noticed that you are from Texas and I know they have a great hospital out that way. Please never be afraid to ask the doctors lots of questions.
We are all here for you and your family. I will be praying for your son and you guys please keep us all up to date.
One site that explains a pacemaker pretty well is this site. http://www.cardiologychannel.com/pacemaker/

Take care and Blessings,
Tammy

Tate

by hooimom - 2007-08-01 10:08:45

Cheri,

Fully relying on God is exactly what will get you through this! It sounds like Tate has been through much worse than a pacemaker will be. I have two children and neither have a PM, but I got mine last year at 42. My son did have surgery at 3 1/2 weeks of age on his stomach and it was the scariest thing I have ever experienced. I can empathize and understand a little of what you are going through walking this out with your son. We would rather go through it ourselves than watch our child have surgery. A pacemaker implantation isn't a walk in the park, but it will be nothing like his previous open heart surgeries. I understand that they place PM's in a child's abdomen because there is more padding to protect it there. Kids are not going to be quite as cautious as we grownups. My doctor uses more sensitive pacemakers with younger people (even me at 42) because they want as little pacing as possible. Mine only kicks in if my HR falls beneath 60. They can set the rate at whatever is best for the individual patient. I have done really well with my PM. I have an easier time breathing, more energy and a healthier lifestyle now than I did before my PM. Tate sounds like a strong little fighter and while it is painful to go through this he will be healthier after his PM.

You and Tate will be in my prayers.

Tate

by gaby - 2007-08-01 11:08:48

Like the others have said Tate has gone through alot and survived he will be fine for this too. I am 36 and have Triscupid Atresia (HRHS). I have had a pacemaker (placed in my abdomen) for nearly 4 years because of arrhythmias.

I have had several surgeries like Tate. Did he have the Fontan?? I did nearly 21 years ago.

feel free to private message me anytime.

Kathy

Tate's PM

by SMITTY - 2007-08-02 06:08:58

Hello Cheri and Tate,

The following is an edited version of an article on getting a pacemaker. It is long and possibly not all of it is applicable to Tate’s upcoming pacemaker implant. But I recall how little I knew about pacemaker surgery and pacemakers when I was getting mine seven years ago, so I’m including anything that I think may help you understand.

Having a pacemaker implanted is a fairly simple surgical procedure, but it does require a lifelong commitment. Keep in mind that pacemakers have been around for more than 30 years. With proper care, a pacemaker can help keep you feeling good for many years to come. A pacemaker is a small, lightweight, electronic device that's placed inside your body. The pacemaker keeps track of your heartbeat and, when necessary, generates electrical signals similar to the heart's natural signals. These signals keep your heart beating at the right pace.

A pacemaker helps keep your heart from beating too slowly, but it doesn't stop your heart from beating on its own. The pacemaker "listens" to your heart. When the heart's own electrical system sends a signal and the heart beats, the pacemaker waits and does nothing. When the heart's system misses a signal, the pacemaker sends an impulse to maekthe heart beat.

This where the “on demand” term comes in. The pacemaker will have a range in which it will help the heart. Mine is 60 to 100, which means that if my heart rate drops below 60 the pacemaker will come on line and try to maintain that minimum heart beat. It will remain “on line” helping as needed until my heart reaches 100 at which time it takes itself out of the picture. Since the PM is checking the heart each time to see if the heart will beat with out help, if the heart is having PVC or skip beats, the pacemaker the PM may misinterpret one of them as the heart going to beat without help and the PM will not help. This can lead to a heart rate less than the low setting on the PM, which is what is happening to me right now. Because of PVC and skip beats that my PM thinks are going to be normal heart beats, my heart rate frequently drops to the low 40s. So, the “on demand” PM is one that is along for that is along for the ride until it thinks it is needed. But, my experience has been that the heart can fake out the PM.

When you're active, your heart beats at a faster pace or rate. Electrical system problems can sometimes keep your heart's rate from speeding up when you're active. Because of this, some pacemakers are also rate-adaptive. This means they can help change the rate of your heartbeat depending upon your activity level. So when you're dancing or doing similar activity, a rate-adaptive pacemaker helps your heart beat faster. And when you sit down to rest, the pacemaker lets your heart return to a slower rate.

Inserting the pacemaker into your body is called implantation. Pacemaker implantation is not open heart surgery. Rather, it's a minor procedure that's done in an operating room or cardiac catheterization lab. You'll be given instructions on how to prepare for the procedure. Pacemakers can be inserted near the right or left shoulder. I’m going to qualify the statement “it’s a minor procedure.” Since I have no idea just where Tate’s PM will be implanted, it may not be as simple as this paragraph implies.

This paragraph applies to those of us having our PM implanted in our upper chest and may not be applicable to Tate’s implant. A local anesthetic is given by injection to numb the area where the pacemaker will be inserted. This keeps you from feeling pain during the procedure. An incision is made in your skin below your collarbone to create a small "pocket.” The lead for the pacemaker is threaded through the incision into a vein in your upper chest.

The lead is then guided into your heart's chambers using x-ray monitors. Electrical measurements are taken to determine a good position for the lead in the heart. If there is a second lead, this process is repeated.
The pacemaker generator is attached to the lead or leads. Then, the generator is placed in the pocket under your skin. The pacemaker's settings are programmed to help your heart beat at a rate that's right for you. The incision is then closed and covered with a sterile dressing.

Based on what I understand from your message this may be more applicable to Tate’s implant. Your doctor may use a method, called epicardial ("outside the heart") implantation. Epicardial implantation takes longer than endocardial implantation and requires more recovery time. An opening is made in the lower chest, and the lead is threaded up to the outside of the heart. The generator is attached to the leads and placed underneath the skin in the abdomen.

After your pacemaker is implanted, you'll probably stay in the hospital for a day or two to be sure that there are no problems. When you go home, you may be given instruction on how to take care of the incision site as it heals. Your doctor may also schedule some follow-up visits.

During your stay in the hospital, your heart's signals are monitored to be sure the pacemaker is working correctly. A nurse may take your pulse and blood pressure regularly and check your incision for bleeding or swelling. To give the lead or leads a chance to secure themselves inside the vein and your heart, don't lift your arm above your shoulder on the side where the pacemaker was implanted. It's normal to have some pain and stiffness in the area around the incision for a week or so. Pain medication can help make you more comfortable.

A few days after you leave the hospital, you can go back to most of your daily activities. But take it easy for a few weeks to keep from pulling the leads out of place. Be careful not to hit or rub insertion site. Also avoid activities like running or contact sports. Every day, take your temperature and check your incision for signs of infection. In a week or two, you may visit the doctor to have your sutures or staples removed, if necessary, and to check how your incision is healing.
Your incision should heal completely within about a month after the procedure. Continue to avoid letting anything hit or rub your pacemaker. Don't fiddle or play with the pacemaker under your skin. You may feel numbness or fullness in the area around the pacemaker for a few months after the implantation procedure - this is normal.

To be sure your pacemaker is working correctly; you'll visit your doctor or pacemaker clinic several times a year. During these visits, the pacemaker's battery level and functions are checked and the pacemaker's settings can be adjusted. Your pacemaker can also be checked from your home. Pacemaker batteries and leads occasionally need to be replaced - your doctor will tell you when this is necessary.

Pacemaker batteries last about 5 to 10 years before they need to be replaced. Because the battery is sealed inside the generator, replacing a battery requires replacing the entire generator. This procedure is usually simpler and shorter than the initial implantation. To replace the generator, the pacemaker pocket is opened, the old generator is detached from the leads, the new generator is attached to the leads, and the pocket is closed. Occasionally, the leads wear out and need to be replaced. Replacing the leads require a procedure similar to your original implantation.

It isn't difficult to live with a pacemaker. You can usually do almost everything you did before you got your pacemaker, and since you will probably feel better, you may do even more! One of the things you might do is exercise, which is a great way to improve your health. Also, see your doctor regularly to help ensure that you remain healthy and feeling good.

When you first get your pacemaker, you'll be given an ID card to carry. This ID card contains important information about your pacemaker. Show it to any doctor, dentist, or other medical professional you visit. Also, because pacemaker tend to set off security devices like those found in airports and libraries, you may need to show your card to security personnel.
Modern pacemakers are well protected from outside signals, so there are very few things that can interfere with your pacemaker. Appliances which should be safe for Tate to be around include:

Microwave ovens and other appliances in good repair
Computers
Hair Dryers
Power Tools
TV's and Radios
Stereos
Electric Blankets and Heating Pads
Vacuum Cleaners

If you have any questions or concerns, please call your doctor. It's very important for you to keep your appointments with your doctor or pacemaker clinic. Follow your doctor's recommendations about caring for your pacemaker, taking medications or doing other things to care for your heart.

Tell Tate that after he gets his pacemaker he can tell his friends that he is just like the Energizer Bunny, battery powered.

I wish him the very best,

Smitty

Hello

by randrews - 2007-08-02 10:08:35

I just want to add to what the others have said about praying for you and that my heart goes out to you. It's hard to know why things happen the way they do. I'm glad you are trusting God. Please use this site to let us know how you are doing as well as Tate. It's an awesome place for knowledge as well as encouragement and friendship.
Take care friend and God bless you and your family,
Rusty

Cheri, How did it go?

by clichtenberg - 2007-09-30 02:09:35

I don't come here too often and I just read that your ds was getting a pacemaker in August.

My son got his pacemaker in November when he was 10 weeks old. His rythm hadn't come back after his ohs to repair his vsd,pda,pfo, and anomolus origin of the right pa. I guess this happens sometimes when they patch up vsd's. He is doing ok now. He was also diagnosed with Digeorge syndrom and he has dialated cardiomyopathy. He is 1 years old.

As for the pacemaker, in the big scheme of things, it isn't a big deal. Ya know? For us, if this was the only thing that we were dealing with, it would be a big deal! But, unfortunantly it isn't.

Please reach out to me, if you would like to talk further.

Thanks,

Cindy

hi

by aa11177 - 2008-10-18 10:10:25

god bluss yoy tate

You know you're wired when...

You fondly named your implanted buddy.

Member Quotes

Hang in there; it does get better every day!