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October 19, 2004 I will be getting a new ICD - the old one has run low on battery.
The fun of living with technology!
take care!
Lisa
Knowledge is power ... Stay informed!
YOU can make a difference - all you have to do is try!
Dx age 12 current age 46 and counting!
lost: 5 family members to HCM (SCD, Stroke, CHF)
Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
Therapy - ICD (implanted 97, 01, 04 and 11, medication
Currently not obstructed
Complications - unnecessary pacemaker and stroke (unrelated to each other)
What kind are they giving you this time around, my son just recieved a ST. Judes and it zapped him Friday night...i'm sure it had nothing to do with the unit
I haven't been able to get ahold of him since but i'm sure he is ok ....bad news travels fast
Shirley
Diagnosed 2003
Myectomy 2-23-2004
Husband: Ken
Son: John diagnosed 2004
Daughter: Janet (free of HCM)
Hey Lisa,
I heard they now have a model that does not need a battery. It’s a wind up model – and it chimes every hour on the hour.
Seriously though, how long do you expect to be out of the office? Do you have any idea? You know we all feel like lost little lambs when you’re not there. Maybe they could install a zipper so that they could change units during an office visit. In the future. Doesn’t that sound like a good idea?
Burt
My EP works with a cardiac surgeon to do ICD's. Today I met with the surgeon. It was the best appointment I have had with a "non HCM specialist" in years! This man attended our meeting in NJ last June - at which time he thought - I guess I should really take a moment to look at my own family history. It was alway known that his wifes family had a lot of early sudden deaths and that HCM was likely the cause...but he really got the message at our meeting. Last week a family member was implanted with an ICD!
Other family members have been screened and are in the midst of the process. One family member has a history of "asthma"... I was THRILLED when he said to me "I remembered what you said about all the cases of HCM that are missed be becaused it was thought to be asthma" I have to tell you that made my day! Not that his family member may have HCM, not that he may have asthma - but that the thought was connected - "Asthma" may be HCM.
It was a good day -
Take care - and thank you for all your kind words - Oh I will be sticking with Medtronic - it has done me well so far.
Lisa
Knowledge is power ... Stay informed!
YOU can make a difference - all you have to do is try!
Dx age 12 current age 46 and counting!
lost: 5 family members to HCM (SCD, Stroke, CHF)
Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
Therapy - ICD (implanted 97, 01, 04 and 11, medication
Currently not obstructed
Complications - unnecessary pacemaker and stroke (unrelated to each other)
I hope all goes well with your new device. I had mine tested today and all went well except still in A-Fib...Dr. was hoping I would be cardioverted.
In fact the nurse almost didn't let me leave because of the A-fib. I guess when I see the dr. friday, he will tell me to go to NEMC I am sure. It has already been suggested like I said before. Now he is scratching his head.
My best wishes for you!
Hope soon you will feel like a new battery!!
Wishes for healh, peace and love!
Daniela E-H, Mother to Matan-Ben (13 years old) who had his AICD implantation (29/03/04) and Myectomy (14/12/08) and Noga (4 years old) not affected
Haifa - Israel.
Mom of Keanu
4 years old (will be in March)
Dx at 2 days old with Biventricular hypertrophy
Dx at 6 weeks with HOCM
Dx at 5 months with V-tach
Dx at 3 with Noonan Syndrome
I haven't stopped in here in a while, so I am late with responses!
Good luck with your replacement Lisa! Andrew is due any time to have his replaced also. His is so low now they want it checked once a month, so at his last appointment they set us up with a Medtronic CareLink Monitor! With this his ICD can be checked from anywhere through a the phone line! I hook him up to it, (and the other end to a phone jack) and it interrogates the ICD exactly as it would at the clinic, then sends the info to a computer in the clinic.
Pretty cool!
Again, good luck!
Dolly~
mom to Andrew(HCM) 21 years old
Diagnosed \'95 age 5
Myectomy \'96 age 6
ICD implant \'99 age 9
First ICD shock (X2) \'04
ICD replacement surgery \'05 age 15
*And aunt to 7 year old Kenny who had HCM and suffered sudden death in gym class. (2/20/87 - 4/6/94)
I am always thinking about you!!!
And andrew!!
Is it his picture attached? He looks so big!!
This phone tech. sounds a great option!
I will wait for good news after the replacement!
Best wishes!!!
Wishes for healh, peace and love!
Daniela E-H, Mother to Matan-Ben (13 years old) who had his AICD implantation (29/03/04) and Myectomy (14/12/08) and Noga (4 years old) not affected
Haifa - Israel.
Lisa, Thinking about you, lots of prayers coming your way for an uneventful replacement of ICD tomorrow and a speedy, uncomplicated recovery! Let's have you in tip-top shape for the next big excursion! Lots of hugs for you and Becca - oh, and tell Adam not to clap too many times, maybe the next battery will last longer. Lots of love, Linda
Ok Linda brought it up so I will tell you all about my loving, caring and smartas$ of a husband...
In 1992 I received my first device - a pacemaker - As you can imagine Adam and I were a little worried about the entire thing. However we have had a way of dealing with stress..LAUGHTER... so if you all recall the early 1990's and the "clapper" commercials... Well picture this - I come out of the OR and I see Adam at which point he claps twice, looks at the doctor and said "I dont think it is working she is still awake!"
At that point I laughed..it hurt - I hit him and that started my life with an implantable device!
So that was my 1st device.... in 12 hours I will hit #4 I have to say honestly I really see this as no big deal... I just hate the IV thing.
Thanks for all your good wishes - I hope to be home and online by 6pm.
Talk to you all soon...all charged up
Lisa
Knowledge is power ... Stay informed!
YOU can make a difference - all you have to do is try!
Dx age 12 current age 46 and counting!
lost: 5 family members to HCM (SCD, Stroke, CHF)
Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
Therapy - ICD (implanted 97, 01, 04 and 11, medication
Currently not obstructed
Complications - unnecessary pacemaker and stroke (unrelated to each other)
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