Problem with settings.

Hello,
I'm writing about my daughter who was born with congenital heart problems. Her second pm was implanted in 2005 and is a St. Jude's 5366. I am wondering if anyone has heard of problems with this pacemaker after 2005. My daughter started having extreme shortness of breath nine months ago. The doctors determined that her aortic valve needed replaced for the second time and they also replaced her mitral valve, as this was her fifth open heart surgery. All went well, but the shortness of breath never stopped. They finally discovered during a pulmonary stress test her heart rate would not go above 80. A test of her pm showed the pm was not allowing her heart rate to exceed 80. The doctor readjusted her pacemaker, she was so much better for two weeks and then, boom, return of the shortness of breath. That lasted five days and she began to feel better again. Last week she had a cardiac-stress to determine why the shortness of breath returned after the pacemaker was adjusted. Now, they are saying when her heart rate got up to 129, the pm was set to think that was too high and it dropped her down to 80 during the test. Today the doctor readjusted the pacemaker again. He said there is a setting that caused a wiki-something, sorry for not remembering, and it was set to drop her heart rate to 80. This makes no sense to me. During the two weeks she was feeling good, after the first pm adjustment, she walked three miles to my house, she went hiking up a mountain side and no wiki-something!! Also, if the pacemaker was set at 80 before the surgery, which the read out says it was, why didn't she have problems with it for the first five years? Has anyone else out there had problems with their pm settings or heard of faulty pacemakers causing this problem. Sorry for the novella, but it's a long, complicated story!! For nine months they have been trying to figure this out! I appreciate any help you can give me. We are so frustrated. Btw, all of her pulmonary and cardiac tests show no problems at all. Everything points to the pacemaker. Thanks again!

2 Comments

Wenchebach

by Taisha - 2010-11-22 02:11:49

I think thats what you mean wenchebach rhyme means the heart will miss a beat every so many beats. The pacemaker will do this if it is set not to let your heart go above an upper limit. They set these upper limits too low in lots of active people so when you go above it the pacemaker drops your heart down by missing beats I call it the high jump. it feels horrible and scary. I have a St Judes pacemaker cant remember the no but I havent read about any recalls or warnings about any of the recent models. Heres a few suggestions though it sounds like your daughter needs a test with activity. There is a 10 min activity test with the St Judes that they finally did after I had read about it on the St Judes website and through they were supposed to turn the upper limit up to 150 they had not turned up the upper tracking limit. This was pointed out to the clinic people by the St Judes rep.So thats my second suggestion get the rep involved you can ring them directly. Is the rate response on? Unfortunately many of the people who should know about these machines dont plus what feels the right setting for one person isnt right for another so you have to be persistent in getting them to fix things. This site is a great education. Also when they do change settings it can take a while to feel better. best wishes

Thank you

by BDK - 2010-11-23 10:11:01

Thank you Taisha for taking the time to respond. You are right, her pm was set at 150 and when it got to almost 130 it kicked her down to 80. They have now set the pm to 170. They discovered the problem when she was having an exercise test on the treadmill. I just don't understand why it kicked her down to 80 at that point. She had been exercising and doing other things that should have had her heart rate above 130 before the test and it didn't kick down to 80 then. I'm wondering why the pm seems to be kicking her down to 80 at random times. This was the second resetting of the PM. The first reset was because they discovered the pm was set at 80. How did it get set to 80 after having it for five years? It doesn't seem like she could have functioned well for five years if the pm had been set at 80 to begin with. Thank you for your good wishes. I'm sure they will get it figured out, it's just been a long frustrating nine months. All the best to you!

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