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  • I wish I'd asked!

    [I wish I'd asked!]

    Author: Dawn (---.cl.ri.cox.net)

    Date: 08-21-02 09:14

    Hi,

    In a few hours we'll be meeting with Dr Smedira for my mom's myectomy that's scheduled for tomorrow.

    I have my list of questions but......For those of you who had myectomies, what questions do you wish you'd ask before your surgery?

    I know it's a short time frame to get replies, I guess I'm just starting to really get nervous. I've been reading here for a while and reading med books, I'm as informed as I could hope to be. I just want every thing to go as well as possible.

    Jerry and Lynn/Tim, I'm a little frazed at the moment and can't remember when you'll be on campus? I'll be looking for the T shirt's! Tomorrow (22nd) will be mom's surgery. My Dad smokes---look outside for the short (5'5") guy with his head shaved and a mustash and me, 30 something with longish brown hair and glasses.

    Thank you,

    Dawn

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

    [Re: I wish I'd asked!]

    Author: Tim S (---.lexis-nexis.com)

    Date: 08-21-02 10:20

    This is amazing! Lynn and I may have the chance to meet THREE other people with HCM in Cleveland next week!

    Dawn -- Looks like you might still be there when we arrive Sunday. We were already planning on trying to hook up with Jerry on Sunday night ... maybe we should have a group meeting!

    Jerry is up there right now for a Heart Cath. He will be going home over the weekend but returning on Sunday for his pre-op on Monday and surgery on Tuesday.

    Lynn and I will be arriving on Sunday for her Heart Cath on Tuesday and surgery on Thursday.

    We also found out that Elizabeth (From KY) will be up there on the following Tuesday (Sept 4) for a followup visit with Dr. Lever and she might try to check in on Lynn in recovery as well!

    What an amazing support group this is!!!

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

    [Re: I wish I'd asked!]

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

    Date: 08-21-02 10:24

    Dawn -

    Step one ...Relax.

    Step two... you are in a good center with a great deal of experience with HCM, they will help you through the process. Make sure you pack things that will make her stay comfortable.

    Step three...be there to support mom and understand the first few days are going to be difficult as there will not be much you can do ... but hold her hand and be supportive!

    Hey Elizabeth and Judy... chime in here please!

    Best wishes,

    Lisa

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

    [Re: I wish I'd asked!]

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

    Date: 08-21-02 10:26

    Yeh Tim I planned this whole thing... Been working on this for months

    Ha ha ... BUT...Really what are the chance you would all be there at the same time! This is really great, I am so glad you will each be there for each other!!!!

    Lisa

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

    [Re: I wish I'd asked!]

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

    Date: 08-21-02 12:32

    Dear Dawn

    Good luck, hang in there and ask them for their material on myectomy --I'm sure they have a brochure or booklet that answers the most common questions. And if they don't, suggest it to them!

    THe most important question is to ask what things to look for while mom is in recovery that would indicate that she needs to see a doctor right away ---what are the warning signs that she may not be recovering correctly? Hopefully this is information you will not use, but it is still better to be safe than sorry.

    I'm so glad you all are getting together. How cool.

    take care and good luck to everyone

    Sarah

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

    [Re: I wish I'd asked!]

    Author: Ada (---.random.habitat.org)

    Date: 08-21-02 12:54

    Dawn:

    When I had my myectomy (at Mayo), the staff at the hospital was very good at giving me information, so I can't think of anything I wish I had asked. I can tell you what I'm glad I knew:

    --What to expect when I woke up in ICU (there are a few tubes, they can tell you what they are for).

    --How long it takes for the sternum to heal and what restrictions I would have while this happened.

    --Other than allowing the sternum to heal, what other issues could there be with recovery? (For example, I had really bad back pain that gradually went away after about three weeks.)

    --How long I would be in ICU, how long I would be in a regular room.

    --How long until I would be able to walk on my own? (I was interested in this because I hate folley catheters and wanted to know when I would be able to use the restroom

    --The amount of care I would need when I returned home (wasn't as much as I thought--I flew home and was home alone within two weeks of the surgery)

    Also, make sure you let them know if your mom has any trouble with anesthesia. Prior to my myectomy, I would always get really sick after having anesthesia. I don't know what they did differently at Mayo, but it worked. I felt fine.

    And I agree with Lisa about that comfortable clothes thing. I had some trouble pulling thing over my head and buttoning pants the first week or so.

    That's about all I can think of right now. Hope this helps!

    Best wishes,

    Ada

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

    [Re: I wish I'd asked!]

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

    Date: 08-21-02 12:57

    Ah, the clothes!!! Short sleeve, button up or zip up tops and elastic waist pants are the ONLY way to go for being in the hospital and the recovery period. Visit Target or Wal-Mart for cheapies to get mom through if she doesn't have any already.

    good luck

    S

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

    [Re: I wish I'd asked!]

    Author: Kay Ruth (---.as0.wlby.oh.voyager.net)

    Date: 08-21-02 20:34

    Hi Dawn , While your Mom is in surgery you will be in P20 waiting room. They have a class right there to tell you what to expect after surgery. Bear in mind they give you the worst case scenario, I was scared half to death to see Jim after the surgery and it wasn't nearly as bad as I thought it was going to be. There is also a family support group every day in the founders room in the A building .They should give you info on all that . I think it's in your white folder which you may not have yet but will get before surgery .Good luck to all of you .Kay

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

    [Re: I wish I'd asked!]

    Author: Amelia Haynes (---.proxy.aol.com)

    Date: 08-22-02 09:13

    Don't forget that also in that white book are instructions for setting up a web site for your Mom with all her friends email addresses. They can then receive daily postings on her progress as well as RESPOND with well wishes. There is no charge for this.

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

    [Re: I wish I'd asked!---THANK YOU]

    Author: dawn (---.proxy.aol.com)

    Date: 08-23-02 09:47

    Hi All,

    As you can see by the date, mom's had her surgery. All is great! Medically she's fine but still has some anxiety issues that she's being medicated for.

    I got her web page set up and our out of town (and country) friends/family are so very happy. I love the internet!

    Just a quick note to let you all know we're doing fine--the thoughts and prayers must be helping.

    Yes, I'll be looking for Tim and Jerry. Elizabeth is a new name to me---but look forward to meeting her too.

    Got to go---back to the clinic.

    Dawn

    ps, books of parking tickets, another great idea, thanks again for all the good ideas and hints.

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

    [Re: I wish I'd asked!---THANK YOU]

    Author: Jerry Salzman (---.indy.rr.com)

    Date: 08-24-02 12:27

    Dawn,

    I hope you get this. I knew your mom had surgery Thursday, and I was at the Cardiac ICU area wondering if you were there. We went to check up on the internet connection (machine was locked up). My wife will be check in at the Guesthouse SALZMAN either Susan or Gerald. She will be by herself, so she would love company.

    Jerry
    NOTE: This is a post from the previous forum message board.
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