I had an absolutely horrible doctor's appointment today.

It was all going well, I told him no more hiccups since the lead revision 6 weeks ago, that I was line dancing 4 times a week and felt better. Then he had the girl do an EKG, he seemed puzzled, so he asked if I had had an interrogation since the operation. Which I had, my daughter had been with me. Anyway, they didn't have the records in the file yet so he said he wanted another interrogation. I went in to the ICD room and sat down, she put the magnet on to hook me up and did the usual things that make you nauseous and dizzy. She kept asking me, how have you been feeling? Any shortness of breath? I told her occasionally, and occasional heart thumps, but still I felt much better than before.

She took the strip and said she had to ask the doctor a question. She came back and said she had to test a couple more things. Well, next thing you know she pressed some buttons I had some kind of seizure, right there in the chair, flopping like a fish! It was so weird, like dreaming that I was having an epileptic fit and couldn't stop my body. She was saying, Are you okay? Are you all right?

When it stopped, I was still shaking for about fifteen minutes. It must have looked like that scene in the Green Mile when they electrocude the guy (:
Anyway she ran out for the doc and he came back, and they sent me for a chest x-ray across the hospital and then I had to come back with the films.

He then came in and told me that that third lead is completely in the wrong part of the heart. When she stimulated that wire, it stimulated a part of the heart which it wasn't even supposed to be in, which caused the reaction. Turns out I am not getting ANY benefit from the third wire -- my thinking I was so much better might have been just the relief of not having the hiccups any more. And I do know when I go dancing, I kind of have to force myself to start but once I get going I'm okay. Anyway, he said that he doesn't want to try to fix the lead a third time, it looks like the anatomy of my heart is just messed up and it won't hold a lead.

Now I have to decide in a couple weeks if I want to have the operation from the outside of the heart, where they slice from the outside and go between the ribs and put the wires on the outside of the heart. It's major surgery and it also is not as effective. But right now that lead is not doing ANYTHING.

He also said that the things I get at night where I stop breathing, wake up in a panic, is worsening PND (paroxymal nocturnal dyspnea), from the heart failure. He increased one pill, but that part just comes with the territory. It's so scary, your body goes into a panic thinking you are dying. To me it's the worst part.

I don't know what to do about the operation. I cried all the way home, it's so damn discouraging. I'm doing everything right, eating right, exercising, etc.

Okay, pity party is over.

PS -- it's snowing (:

Love you all.





Nothing has changed, but everything's changed.

Elizabeth,

Sending you a million (((hugs))). I am so sorry to hear about your doctor's appointment and how awful it went. I can totally understand why you would be discouraged. I wish I had some good medical advice for you, but know that you are in my prayers and I'm thinking of you. I know we all will be.



Kristin

Elizabeth:

I am so so sorry for all that is happening to you. I think you should get other opinions and then decide on the surgery. It is so hard to have these problems.


Debi

I am so sorry also about your problems. Seems like there are many who just can't take that 3rd lead and keep it where it belongs. I know you will get some support from others who have had the 3rd lead problems. I have had open heart surgery and although I don't want it again it did save my life.

Like others I am praying for a good solution with as little cutting as possible. and lots of

Elizabeth,
I'm sorry you had such bad time at the doctor's office. It has to be frustrating when you're doing everything you can, feeling better and then have a visit like that. You are in my thoughts and prayers,

Best Wishes, Bruce

Oh Elizabeth; I am so sorry for your bad experience and news today.

I too am praying for a good solution for you.

I'm so sorry for everything you have to go through. Please take care Keep us up to date and know that you are in all of our prayers.

OMG.....Elizabeth that is insane. I too am having problems with my third lead. I have the same hiccuping that you have and I decided I didn't want to have it fixed. Now I know that if i decide to do it, will definitely ask for an x-ray and interrogation to make sure it is in the right place. Scary, scary stuff.

Please if you feel like talking, PM me and I will be happy to give you my phone number. I know how sometimes just talking to someone who is of like minds, helps tremendously. Hope to hear from you soon.

Elizabeth,
I am so sorry, I just cried a few tears and so I shed a couple extra for u so now u can save yours
Praying for u!!!
Anita

Okay.....I know this is my second post, but i just noticed that everyone who posted a note to you, Elizabeth, also sent

We are all pulling for you and care so deeply about what happens to everyone here, as we are all 'family'! Hope you have a good nite rest.

Elizabeth ,



Best wishes Marie x

Thanks, everyone, it's funny but all those hugs DO make it feel better. You are a great group and I appreciate every last one of you.

Lucy, maybe you are making the right decision, if the hiccups aren't too disturbing and constant. Mine were really disrupting my life and couldn't be ignored so I thought I'd take the chance.

My daughter Missy said she's convinced that I had a shock, she read on line how people can flip around like a seizure after one. I think I did black out for a while, then it was like watching myself and feeling myself jerk around but not really being there. Could very well have been shocked in the time I was out since it only lasts a couple seconds. After that, I was totally wiped out in the afternoon and had a bad headache all day. Better now, though.

Actually, the lead was in the right place when I went two weeks after surgery to have the interrogation. That's when the guy said he had it full blast and the battery might wear out sooner, but I was getting the benefit then, he said. So it had to have completely moved in the last four weeks. The doctor said some people's anatomies are just such that they can't hold that lead. Actually I remember him telling me before any operations that like 1 percent of people have that problem.

Either way I wasn't getting hiccups because the thing was nowhere near that nerve. I guess I was feeling so much better from lack of hiccups that I mistook it for being a big improvement, and it's been so long since I felt good that the difference seemed more to me than it was. I did notice Monday that I got tired at line dance and I cut it short, but didn't think much of it.

Anyway Missy is on the case, kind of mad and is calling the office today to find out what exactly happened to me yesterday. Also, I am concerned that in the excitement the girl may have turned off the other two leads, so I want to make sure at least the other two leads are funtioning.

I'm thinking I might tell them I want to give it six months to think about it. I want to do so much this summer, go down and see my grandson in the summer, and hopefully a few days in the Adirondacks in the fall, too. Plus I can pay attention to how I feel and decide if that's really what I want to do.

Also, if I did decide to have the operation, at least I have already paid my high deductible for this year. Geeze, it's expensive, the bills just keep pouring in from the hospital and anesthesiologists, etc. from the lead revision.

Anyway, again, thank you all for the hugs and good wishes and prayers (:

Hi Elizabeth. I'm so happy for you that your daughter Missy is helping you through this. Good for her for calling to find out the details of what happened yesterday!!

I only had one lead. My lead dislodged 4 months after implant. After my lead replacement I was told I would need an additional lead attached to the outside of my heart, due to my high defibrillation threshold (that way the shock could be delivered from the inside and outside of my heart). I know yours is a totally different situation, but I feel that I can understand some of what your going through.

You've been through so much. Have you thought about getting a second opinion, even to help you decide on what to do next? I wish you all the best Elizabeth. Take care and stay strong!!

Close your eyes, put your head on my shoulder, and feel the loving hug I send to you. Repeat as needed.

Having had those "hic-ups" as well, I understand why you wanted them gone. Even DH couldn't stand them waking him up at night. Mine, however, was more easily 'cured' with a few adjustments. This is one tough part of life none of us ever expects.

I join your other friends here in wishing you all the best, whatever and whenever you make your decision.

Love, Smart Red

Hello Elizabeth, sorry to hear about your situation. Here is a hug from me I had that type of surgery. In 2008, on December 3rd I had a ICD and 2 leads implanted. My EP tried twice to insert the third lead but it kept coming loose. She recommended a highly qualified surgeon to do the surgery on the 5th and I was released from the hospital on the 10th. If you want any further information, please feel free to contact me.