do i really need it????

OK..im 21 i have genetic long qt"s type 1 and recently went to my doctor cause of some pain i was having thinking my icd was just pacing extra hard,and my nurse told me the icd is just sitting there....sitting there? i mean im not anxious for a shock or anything but she then explained to me that i will not receive pacing until my heart rate goes up to 100 and that i will not get socked until it goes up to 200 and the usual they say and as it monitors goes only up to 80-90 when im walking although i do take things slowly cause i occasionally feel faint...so was it really necessary to get this? call me naive but its very uncomfortable to have,but i really don't know what to do can i actually have it taken out?,but then im worried i might need it cause of my heart beats

3 Comments

Long QT

by Katielou - 2009-01-21 01:01:57

Hi Cristalh,

I too have Long Qt although the type is unknown!

Your question re having the ICD removed concerns me and my advice would be to leave it where it is. When my heart beat goes crazy it reaches over 400bpm in a split second. I don't have any warning and cardiac arrest occurs. My ICD detects this and within about 10 secs it fires and brings me out of the arrest. This has now saved my life on several ocassions and I am so grateful that I have this lump of metal. I don't know whether you go into VF but if you do you will know that it is an extremely dangerous rhythm and this is where the ICD will save your life.

Please think long and hard before you make a decision to have it removed. Have you had it implanted recently perhaps and maybe not got used to it? Please, please take care and don't do anything without knowing all the consequences.

Best wishes,
Lesley

report

by Tracey_E - 2009-01-21 06:01:19

When you have it checked again, ask for a copy of the report.

The defib part always just sits there, that's its job. It won't do anything unless your hr gets too high and needs to be slowed down.

The pm part (all icd's are also a pacemaker) also monitors all the time. It makes sure your hr never gets too low and doesn't skip beats. Your min rate is probably well under 100, more like 50 or 60. If you miss beats or get too low, it steps in and generates a beat. It may be that your rate is fairly normal under 100 so the pm only works when it gets over 100. The report can tell you exactly what percentage of the time you are pacing.

I'm not sure what long qt's is, is that a hesitation between atrial and ventricular beats?

Have you had a stress test to see what happens when you exercise and get your hr up, why it makes you faint?

thinking twice

by cristalh - 2009-01-22 11:01:39

thank you guys,changed my actual perspective of view the situation

You know you're wired when...

You have a dymo-powered bike.

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I am just thankful that I am alive and that even though I have this pacemaker it is not the end of the world.