[feeling a little scared]

Author: Mary Sharp (---.proxy.aol.com)

Date: 08-31-02 11:48

Guess I'm just having one of those down days! I am feeling a bit scared. I have an EP study on the 9th. I'm not really sure of what to make on anything that anyone is saying. It's not the actuall study I am worried about. I'm just worried that if I have to have an ICD how much is this operation going to affect my ability to drive and how soon can I go back to school.My life is very active and I really can't miss school or work for that matter.I am single and have no family in which to take care of me. There are times that I feel really alone in this. But I'm very thankful I have you guys here!

Wanted to ask my doc these questions but she went on vacation and had the secretary leave the message on my answering machine that this is what I needed. Dr. Sears my cardiac psychologist has been a blessing through this. What it seems like that he is "the bedside manner of my dr" they order something and he explains it. But he didn't even know about me getting the procedure done until I told him. He wasn't very happy being left out of the loop. Which is the norm for these guys.

Oh well enough of my feeling sorry for myself have to go put on my pixie dust face and pretend all is well with the world.

Mary S.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

[Re: feeling a little scared]

Author: Sarah B--Board Moderator (---.client.attbi.com)

Date: 08-31-02 12:04

Dear Mary,

When you posted about EPs and ICDs, I thought that you meant that your EP was being done when they placed the ICD.

If you are scheduled to have an EP just for the sake of seeing if you need an ICD, that is a horse of a different color. All the stuff we've said here about EPs is true. To tell if you need an ICD, you need to be looking at your risk factors:septal wall of 3cm or more, history of fainting, heart attack, ventricular tachycardia and an incorrect blood pressure response to exercise and a family history of sudden death. Do you have any of those risk factors?

Are you seeing an HCM specialist? Did your doctor tell you that there is a tiny, tiny chance of not making it through an EP? That an EP doesn't predict sudden death risk as they used to think it did? Is there another medical reason for your EP?

I don't want to scare you, but I really get mad about doctors who don't explain stuff to their patients.

hang in there and think about getting a second opinion on what an EP is going to do for you.

S

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

[Re: feeling a little scared]

Author: Amy Nierman (---.tnt4.seymour.in.da.uu.net)

Date: 08-31-02 12:08

Mary,

Sometimes just telling others how I feel, makes me feel a whole lot better. I guess it's just that fact that everything that's been ratteling around in my brain is out in the open and can quit bouncing around. I understand the "what ifs". I'm a person who likes to think about the what ifs and already have a plan of action in mind. It seems to not be so overwhelming if the what ifs really occur.

When my sister and I were little, my dad use to say "If a bullfrog had wings, he wouldn't bump his tail on the ground." That was his way to tell us know to worry about the what ifs. Sometimes it would make me mad because I felt he wasn't listening and other times I would laugh and fell a little better. So maybe you can find a little humor in his what ifs theory. Bullfrog, wings, tails - that would be kinda cute!

Amy

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

[Re: feeling a little scared]

Author: Lisa Salberg (---.dyn.optonline.net)

Date: 08-31-02 13:30

Mary -

I am wondering what it is they are intending to find with the EP test. EP testing in HCM has shown to be in effective. Many with neg. EP tests have gone on to have serious arrthymias and those with postitve EP tests have never had another event???

What are they going to do with the results of the testing?

Sorry to confuse the matter further but I can not see what it is you will gain at this point from the testing.

You know where to find me

Lisa

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

[Re: feeling a little scared]

Author: Lisa Salberg (---.dyn.optonline.net)

Date: 08-31-02 13:30

Mary -

I am wondering what it is they are intending to find with the EP test. EP testing in HCM has shown to be in effective. Many with neg. EP tests have gone on to have serious arrthymias and those with postitve EP tests have never had another event???

What are they going to do with the results of the testing?

Sorry to confuse the matter further but I can not see what it is you will gain at this point from the testing.

You know where to find me

Lisa

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

[Re: feeling a little scared]

Author: Matt (---.disney.com)

Date: 08-31-02 20:31

Mary,

From what you told me, I'd say you are most likely a candidate for an ICD. I would hope you get that instead of the EP study. Please call Lisa to discuss your risk factors.

This is how much my ICD implant slowed me down... On a Friday I had the ICD implant at 3pm. I went home Saturday afternoon. I felt like I could go back to work on Monday but because my kids were here (they live in Arizona most of the year), I "milked" it for a week. They lelt on Thursday, I started driving again on Friday and went back to work on Monday.

I think the law in Florida is you can't drive for 6 months! Like you, I am single taking care of myself so that's out of the question. Anyway, everyone is different and will have different recovery times, reactions, etc. but my experience was "no big deal". I'd rather go through that than have another bad episode.

Also, if you need a ride to/from the hospital, school, work... let me know.

Hang in there and good luck with what you decide. and call Lisa.

Matt

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

[Re: feeling a little scared]

Author: Reenie Smith (---.snbrca.adelphia.net)

Date: 08-31-02 23:52

Mary,

I know nothing at all about EP studies, but wanted to share with you my husband's experience with getting the ICD. His recuperation time may be different than some, or even most, but here's his story: He went into the hospital and the surgery was scheduled for 9 am. They had him out of the OR by 10:30, 11:00. Something like that. After staying in a recovery room for a while he ate lunch. A couple of hours later they came in, checked him out thoroughly, told us how to take care of the wound, and released him late that afternoon. Since we were in a hotel, we went out to eat buffalo wings for supper, then went back to our room. He was told not to lift his arm above his head for 2 weeks, but besides not lifting anything heavy for a while, he had an easy time of it. Maybe he's not the same as others, I don't know. But I thought I would tell you so you wouldn't be frightened by that part of it. Please take care of yourself. Let us know how you do.

Reenie

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

[Re: feeling a little scared]

Author: Mary Sharp (---.proxy.aol.com)

Date: 09-02-02 13:59

Sorry I have not returned anyone's messages. I guess with the stress of school starting, work, and arguing with my Drs. I just couldn't handle it I got really bad chest pains at work and my Boss ended up driving me to the hospital where I have spent the last two days. I'm feeling ok today but am still tired. My local cardiologist and his superior both said an ICD would be a good idea. I think the referral for Boston might be pushed a little faster now. Because they are feeling uncomfortable with my high enzyme levels.I guess we'll see! Thanks for your support!

Mary

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

[Re: feeling a little scared]

Author: Sarah B--Board Moderator (---.client.attbi.com)

Date: 09-02-02 14:10

Dear Mary,

I'm so sorry you have been in the hosptial, but I'm glad you are out.

I hope you can do whatever you need to do to get to Dr. MM ASAP!!!

Keep us posted,

Sarah

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

[Re: feeling a little scared]

Author: Mary Sharp (---.proxy.aol.com)

Date: 09-02-02 14:39

Lisa,

I am glad we had that conversation on Friday. I am still really not sure what I am going to do about the 9th. After I had got to work I didn't last very long guess I didn't have enough pixie dust in me but I spent my Labor Day weekend in the hospital oh how fun. Just for the record though IVs STINK if someone approches me with a needle this week I think I might take them out.

Anyway did you get that letter out to Dr. S.. I did not receive the copy that you said you would send and was wondering if it was just my server not working right. After this weekend my local cardiologist and his superior are really thinking that I need an ICD they said that I should still get the EP study done. They also said that I need to get to Dr Maron. So maybe that means they will get that referal going a bit faster! If you need to I will be home all night so just do the home number. I am wondering if I need to call Dr. S. and leave a message that I was in the hospital this week? Getting more confused by the day.

Mary Sharp

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

[Re: feeling a little scared]

Author: Lisa Salberg (---.dyn.optonline.net)

Date: 09-02-02 16:23

Mary -

I sent the letter to Dr S. today and CC'ed you on it. I got caught up with a few other items over the weekend.

Get some rest and we will talk soon.

Lisa

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

[Re: feeling a little scared]

Author: Mary Sharp (---.proxy.aol.com)

Date: 09-02-02 17:23

Lisa,

Thanks so very much for that letter! You hit the nail right on the head! I feel everything you said was very appropriate for the situation. With that in mind I'll make my decision from what he says. I don't know what I would do without you guys!

Thanks a million!

Mary S.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

[Re: feeling a little scared]

Author: Lisa Salberg (---.dyn.optonline.net)

Date: 09-02-02 18:34

Mary -

I am glad I could help. Let me know how it works out.

Tell Mickey I said hello!

Lisa