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What would you do? Re: ICD?

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  • What would you do? Re: ICD?

    [What would you do? Re: ICD?]

    Author: Craig (---.dsl.sfldmi.ameritech.net)

    Date: 06-24-02 09:36

    Hello friends,

    After a long conversation with Lisa last week, I have decided to get an ICD. My case is unique among HCM patients, with a considerable "gray area". I have a 3.0cm septal thickness, but am virtually asymptomatic. Dr. Maron would likely tell me to get an ICD ASAP. Dr. Lever from Cleveland, so far, has said let's wait and see if we find more high-risk factors. To err on the side of caution, I have reluctantly decided to get the ICD.

    Now for the twist: My wife is pregnant with our first baby and due in seven weeks. She has been on bedrest for 3 months, and needs a lot of my assistance with lifting, cooking, cleaning, etc. So, what do you recommend: should I schedule the ICD ASAP, likely sometime before the pregnancy. Or, should I wait for a few months afterwards when things have "settled down some"?

    Lisa seemed to suggest seriously considering doing it ASAP, so I can recover before the baby is born -- hopefully.

    What do you all who have ICDs think? For what its worth, I am 31 years old, in pretty good shape, and have never had major surgery.

    Needing advice,

    Craig

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

    [Re: What would you do? Re: ICD?]

    Author: Lisa Salberg (208.47.172.---)

    Date: 06-24-02 10:19

    Hi Craig,

    Let me explain my rational a little and see what the rest of you think. If your going to get the ICD, and for those reading...Craig is in some gray area here.... yet he has made the choice and I support him in his choice.... I suggest sooner than later in your case for several reasons:

    1. You are going to be very busy and tired when the baby comes, this gives you a chance to rest a bit and heal prior to the baby (by the way is it a boy or a girl...or are you waiting to find out???)

    2. The piece of mind of having the ICD may relieve some of the stress on you and your wife, therefore helping your entire family.

    3.Because you do have a risk factor and what happens IF the ICD is not there when you need it?

    I look forward to hearing other view points, as it may help others make similar choices in the future.

    All the best!

    Lisa Salberg

    HCMA

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

    [Re: What would you do? Re: ICD?]

    Author: Patricia wonderly (---.56.235.201.Dial1.Buffalo1.Level3.net)

    Date: 06-24-02 10:40

    Craig:

    If I were you, I would go for the ICD asap. I am a 39 year old female..and mother of 3. In order to best serve you wife and yourself. I would get the surgery now. The recovery time is short, mostly soreness. But, you do not have the added complication of caring for an infant, tired wife andyourself.

    take care,

    Tricia

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

    [Re: What would you do? Re: ICD?]

    Author: Jerry Salzman (---.treas.gov)

    Date: 06-24-02 10:50

    Craig,

    If you have decided, go ahead. It took me a couple of weeks to get use to mine. There was also adjustments which had to be made in the way the pacermaker worked (may not be a problem for you). After the first couple of weeks I forgot I had it.

    Jerry

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

    [Re: What would you do? Re: ICD?]

    Author: Board Moderator--Sarah Beckley (---.dsl.mindspring.com)

    Date: 06-24-02 11:19

    Dear Craig,

    Well, I don't have kids, but I do have nephews and nieces and I don't think there is ever any time that things "settle down" after the baby comes for about 18 years!!!

    I think that you need to find a relative or a day nurse to come in and take care of your wife for the time after the surgery that you will need to be resting. it is my understanding that you are not to be too energetic for a short time afterwards, but you are certainly going to have to do _more_ lifting once the baby arrives than before.

    (my 2 cents: And having an ICD is a wise choice, especially now that you are living for three.)

    good luck and congratulations on the baby and keep us posted.

    Sarah

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

    [Re: What would you do? Re: ICD?]

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

    Date: 06-24-02 13:17

    Craig - I think your getting the input your looking for...what is your wife thinking about all of this???

    Lisa

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

    [Re: What would you do? Re: ICD?]

    Author: Patricia Grall (---.dw.net)

    Date: 06-24-02 16:02

    I agree. Get the ICD now. I was able to cook a full meal the next day after getting mine. Teh area will be sore but bearable. Things I could not do per my Doctor:

    Take a shower for number of days. Just sponge baths.

    Lift more than 10 pounds for two weeks with you left arm( if ICD is placed on left side)

    More your arm above your shoulder hieght for the first two weeks.

    No golf for 6 weeks or any other activity that could possibily pull the leads out.

    No heavy exercising or activity with that left arm.

    My doctor gave me Darvocet N for pain. I do not have a high pain tolerance. But I found I was able to use just 2 ES Tylenol 3 times a day for the first two weeks and that controlled the pain just fine as is went away. I did not need the Darvocet N. ( remember never to take amore than 4000 mg of Tylenol in a 24 hour period. this is true for everyone. Your liver can only clear that much each day. That would be 8- 500 mg tablets or no more than 12 - 325 mg tablets. the same goes for Ibuprofen and other OTC pain medication.)

    This might be the time to get some pay back and ask for help from friends and family for your family during this time. Good luck.

    Patricia Grall

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

    [Re: What would you do? Re: ICD?]

    Author: Lisa Salberg (208.47.172.---)

    Date: 06-25-02 10:43

    Just a bit of clearification -

    As many of you know one risk factor for sudden death has been the amount of hypertrophy - 3.0 or greater has been detirmined to be an risk factor on its own. While I know I said that Craig was in a gray area with his choice to have an ICD being that his only risk factor was a septal measurement of 3.0, this sounds to not follow the data. However I ask you to understand that not all information is shared on the message board and that in this case... there are areas that do appear gray. While I can not go into all the details I ask you understand sometimes there is more then what apprears here.

    Craig and his wife have met with top doctors and are making choices that are correct for them.

    I think you have all been helpful sharing your suggestions with Craig and I am sure he appreciates all the support you have shown him.

    Best wishes,

    Lisa

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

    [Re: What would you do? Re: ICD?]

    Author: Craig (---.dsl.sfldmi.ameritech.net)

    Date: 06-25-02 12:33

    Yes, all of you have been very supportive and helpful. Lisa is correct, there are other issues that have not been shared on the message board that make my case more gray than others.

    Just to let you all know, I have gone ahead with the decision to get the ICD. And I am attempting to get an appt. in the next few weeks.

    More on the details later.

    Thanks again for the support.

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

    [Re: What would you do? Re: ICD?]

    Author: Board Moderator--Sarah Beckley (---.dsl.mindspring.com)

    Date: 06-25-02 16:39

    Craig

    You are very welcome and good luck

    Sarah

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

    [Re: What would you do? Re: ICD?]

    Author: Lisa Salberg (208.47.172.---)

    Date: 06-25-02 17:14

    Craig,

    best wishes on your up coming procedure, I am sure you know you have a ton of support here in cyber space! We will all be with you in thought during your procedure. Keep us up on your progress.

    HEY what about the baby you never told us if it a boy or girl?

    All the Best!

    Lisa

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

    [Re: What would you do? Re: ICD?]

    Author: Board Moderator--Sarah Beckley (---.dsl.mindspring.com)

    Date: 06-25-02 20:30

    And what you are going to name the baby --either way ----(Lisa?) wink, wink

    S

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

    [Re: What would you do? Re: ICD?]

    Author: john jordan (---.public.svc.webtv.net)

    Date: 06-26-02 15:49

    hi craig, i hope all goes well getting ur ICD taken care of. im scheduled to get myectomy in cleveland on july 16th. this stuff is overwhelming but have found all the messages a help to me. many blessings on u, ur wife, and ur baby preparing to be born. take care, john

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

    [Re: What would you do? Re: ICD?]

    Author: Sue (---.howard01.md.comcast.net)

    Date: 07-15-02 18:35

    Craig--I am three days post ICD procedure and feel sore and look purple in the chest, but am able to do things around the house. Could yesterday too, but I preferred to nap. Tomorrow is the big day for a shower; I hope to report for work for a few hours. This isn't something to be done lightly, but it isn't major surgery by any means. Hope your procedure goes well. Then you'll be in great shape to be a father. Best wishes.
    NOTE: This is a post from the previous forum message board.
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