Well, right now I am writing this from a hospital that is over 200 miles away from home...
I was on the last 2 days of a 9 night cruise when I started hearing a strange beeping sound. It took me a day to figure out it was my ICD! I thought it was my husband's watch alarm or something. So the beeping went on for 2 days while we were in the middle of the Atlantic Ocean.
As soon as we got back to NYC, I called my cardiologist (we were a little over 300 miles from home). I was able to send my ICD read over the phone line and they determined my lead was fracturing. By then, my husband and I were on the thruway driving home. I was told to go to the Dr. office as soon as we got back into town.
But then, about 10 minutes later, the nurse called back and said when they looked more closely, the lead is completely fractured. I was at risk of either being shocked inappropriately, or of having a SCA with no protection. She said I needed to get to a hospital as soon as possible. I would need the ICD turned off, and then surgery ASAP.
We ended up getting off the next exit, which was only 2 miles away, and calling an ambulance. I was taken to a hospital 30 miles away, which happens to be in the top 10 hospitals in the country for cardiac issues.
Unfortunately, because it was a Friday afternoon, they were unable to do the surgery and it is scheduled for tomorrow (Monday). In the meantime, my ICD is turned off and I am attached to all kinds of wires so they can monitor me 24/7. I should be able to go home on Tuesday.
Other than the fact I am frustrated, I wanted to write about this because I know many people are walking around out there with this faulty lead. I should have recognized the beeps sooner (they are there to warn you!) and I never realized what an emergency it could be. I want people to pay attention and call their doctor right away if they notice the signal that there is a problem.
I also wanted to mention that I almost didn't bring my gadget for reading the ICD because I figured we would be on a ship and I wouldn't be able to use it anyway. But my husband insisted. He did the right thing. NEVER LEAVE HOME WITHOUT IT!!
The good news is that after tomorrow I will no longer have the faulty lead. But I will definitely pay closer attention to any signals I get from my ICD!
Mary
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Faulty lead
- By Mary1
- Posted July 19, 2009 at 2:48 pm · 19 replies
- In Living with an ICD
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19 replies
- Oldest first
- Newest first
- By Bogey
- Posted July 20, 2009 at 10:56 am
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Hi Mary,
Oh what fun we have with faulty leads. In 2006 after they put in my icd I went back to the Dr. and ran thier test on it and told me I have a faulty lead but it just wasn't sending a strong signal. He told me he wanted to wait a few months to see if it would get better. Well it didn't so 6 months later I went in to have it replaced. Every thing went well with the surgery and they told me I would be going home the next day. The next morning I woke up and ate breakfast and was getting things ready to go home. The tech from Medtronics comes in and runs some test on the icd. She gets a funny look on her face and says she'll be right back. She comes back in and runs more test on it then gets up and says she has to call the doctor. She comes back in with the news to tell me that the lead they put in isn't working so I'll have to back into surgery that night to replace the one they just put in. I'm glad they did the tests before I left cause I wanted to be protected from another SCA. Well I hope all goes well with your surgey today and I know the doctor will tell you not to use your left arm for 6 weeks. Bogey
- By wdiane
- Posted July 20, 2009 at 11:36 am
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Mary,
I am so sorry! I was waiting to write you until you got bac from the cruise, I was hoping that you had had a good time. I"ll be in prayer for you and look forward to "talking" when you get back.
Diane
- By jeffreylinda
- Posted July 21, 2009 at 10:38 am
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How are doing ? A bad lead is one of my biggest fears!! I hope your surgery was successful!!
linda
- By Paul_Pakusch
- Posted July 22, 2009 at 6:35 am
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This is Mary's husband, Paul. She is sleeping at the moment. I thought I'd jump in and give you all an update. Mary's surgery was late Monday afternoon. It went well, the ICD & lead tested well, and she was able to travel home yesterday (Tuesday). She has a follow-up with her own cardilogist scheduled for next week. The cruise, by the way, was great! We travelled with some other family and friends and we all had a great time!
- By maureengraz
- Posted July 22, 2009 at 8:44 am
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Glad to hear that Mary is doing well!
- By Mary1
- Posted July 22, 2009 at 10:16 am
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Bogey,
I can't believe they didn't test the lead while you were still in surgery. They put me out completely for just a few minutes to stop my heart and then test the ICD. What a pain this all is!!
I'm glad you are ok.
Mary
- By Mary1
- Posted July 22, 2009 at 10:17 am
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Thank you, Dianne. I did have a great time on the cruise! I hadn't realized the seriousness of the alarm going off, so it didn't ruin anything for me. I was lucky nothing bad happened.
Talk to you soon!
Love, Mary
- By Mary1
- Posted July 22, 2009 at 10:18 am
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I ended up in St. Peter's in Albany. The people there were amazing! :-)
- By Mary1
- Posted July 22, 2009 at 10:20 am
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Linda,
Just make sure you pay attention to any alarms from your ICD. I can't believe it took me so long to even realize the sound was coming from me.
I am relieved to know mine is fixed now. Good luck to you!
Mary
- By Bogey
- Posted July 22, 2009 at 2:30 pm
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Hi Mary1,
Yes they did check the leads and the icd after surgery and everything was ok then but it was the next day after the surgery before they let me go home that they checked it again when they found it went bad. You talked about the alram going off in your icd, the last time I went in to have it checked about a month ago they set the alarm off in it so i could hear it and know what it is. I think all with icd's should have this done so when it does go off you know what it is. I have had mine for two and half years and never heard it till they asked if I wanted to hear it. So any of you that have not heard it, the next time your in the dotors office and getting your icd checked have them set the alarm off so you know what it sounds like. Glad your doing good Mary, Take care.
- By Mary1
- Posted July 23, 2009 at 10:24 am
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Bogey,
Maybe it was denial or something. I had heard what the alarm sounded like. But I agree everyone should have the chance to hear it in the dr.'s office.
Thanks. Have a great day!
Mary
- By Debra71508
- Posted July 24, 2009 at 6:33 am
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Mary & Paul!
YIKES! I just read your postings this morning!
Thank you both so much for updating and warning everyone. Honestly, I do not think it would have occured to me to bring the ICD reader. Paul is so much smarter than the average bear.
I can see Mary just "ignoring" the beeps. These days there is so much electronic buzz in our environments it's hard to notice. My own IPhone kept me awake (on & off) one night because I was sure it was coming from somewhere else.
More wisdom from my favorite SCA couple. I continue to be grateful to you both!
-Deb
- By kbauhs
- Posted July 26, 2009 at 1:02 pm
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Mary - When did you have your ICD implanted (i.e. how old was the faulty lead when it went bad?)? I have one of the Sprint Fidelis leads, and they've reprogrammed my ICD to alarm like yours did. I know the odds of a fracture are small, but we all live with the knowledge that - like you - we could have this happen.
Note: I really appreciate your positive attitude and upbeat approach to things. Your a good role model!
- By Mary1
- Posted July 26, 2009 at 7:56 pm
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Thank you. I think staying positive is the only way to get through life in general. :-)
I got my ICD in July 2006. My doctor had done all the things yours did. I was checked frequently and of course, the alarm.
I have given up on worrying about or counting on odds being small. We shouldn't be here according to the odds of surviving being small. The odds of my lead fracturing was small, yet it still broke.
If there is a chance of anything happening, we need to be prepared. That doesn't mean we need to panic though.
In the case of the leads, my best advice is to assume any unusual "beeping" IS coming from you. lol
And call your doctor right away.
I hope this helps, at least a little.
Take care.
Mary
- By Paul_Pakusch
- Posted July 28, 2009 at 9:57 am
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See why I'm married to Mary? She is so positive about everything! If I didn't have her, I'd probably be a total crab by this point in my life!
- By VMP
- Posted August 30, 2009 at 10:50 am
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Hi ; I have a faulty wire also. Implanted just before the recall in Oct. of '07. No problems to date. My question ; Did you ever check with the cruise line to see if they could support a dialout for the monitor?
Good luck in the future.
- By Mary1
- Posted August 30, 2009 at 12:07 pm
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Unfortunately I didn't check with the cruise line. I think I learned a lot of hard lessons through this experience!
Thanks!
:-)
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