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  • having a procedure done

    [having a procedure done]

    Author: Heather I (65.247.157.---)

    Date: 11-08-02 00:41

    ok, hopefully I am in the right place. My name is heath and Heather I. is my sister. I guess she has been conversing with some of you about her condition. Well as some of you may know she has been hit hard lately with some heart problems. She has been hospitalized about four times now. She is now in Rochester, MN seeing specialist at the Mayo clinic. After days of deliberation the docs have decided on a pace maker that will in the future shock her out of a-fib and/or v-fib (praying that never occurs). She will go in sat. (11-9-02) to the hospital and be admitted and placed on heavy doses of arythmia drugs, then monday they will insert the pace maker and she will be in the hospital for observation until wednesday morning in which they will then fly home for good we are praying. Below is her address up there for those that know her through this forum or just respond to this if you like. Thank you. Heath

    St. Mary's Hospital

    1216 2nd St. S.W.

    Rochester, MN 55902

    (507)-255-5123 Room # ??

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

    [Re: having a procedure done]

    Author: Dolly (Andrew's mom) (---.pressenter.com)

    Date: 11-08-02 06:19

    Heath,

    Yes, this is the place Heather has been posting to. Thank you for updating us and tell Heather I am wishing the best for her that all goes well!

    Dolly

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    [Re: having a procedure done]

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

    Date: 11-08-02 09:20

    Dear Heather I,

    Please know that you are in my prayers. May the good Lord watch over you and send you comfort and strength for your upcoming procedure. Be good to yourself, get plenty of rest, and you will be on the road to recovery before you know it.

    Keeping Good Thoughts,

    Mary

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

    [Re: having a procedure done]

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

    Date: 11-08-02 10:31

    Heath, please give my love to Heather and tell her that she is in my thoughts and prayers daily. We do appreciate your updating us on her status.

    Amelia

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

    [Re: having a procedure done]

    Author: Lisa Salberg (208.47.172.---)

    Date: 11-08-02 12:59

    Heath - Please send my best wishes to Heather. I will be in the HCMA office on Saturday...if you need anything please call us.

    Best wishes,

    Lisa

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

    [Re: having a procedure done]

    Author: Linda (---.wmnsmd.adelphia.net)

    Date: 11-08-02 15:51

    Heath, I'm always so pleased when a relative or friend posts for one of our members with updates. In addition to the info, it lets us know that they have the much-needed support. Best wishes to Heather. We spent a lot of time in Rochester and the whole town seems committed to helping out. When my son wanted McDonald's French fries and was on low salt diet, I asked for fresh ones before they salted them. The person even wiped out the basket, the rack and scoop to make sure there was no salt! Imagine caring that much about strangers. Little things mean so much. Linda, Bd of Directors

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    [Re: having a procedure done]

    Author: mary sharp (---.net334.fl.sprint-hsd.net)

    Date: 11-08-02 16:14

    Tell Heather to not worry about the ICD procedure! It was a breeze I had mine done a week ago! Two days in the hospital and then I flew from Boston. Her shoulder will be pretty sore but it is worth it!

    Good luck and she will definatly need your support afterwards!

    Mary S.

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

    [Re: having a procedure done]

    Author: cynthiaaaa (---.cap.east.verizon.net)

    Date: 11-08-02 20:25

    Heath,

    Wish her well for me. And give the kids a big hug.

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

    [Re: having a procedure done]

    Author: Kay Julius (---.yhti.net)

    Date: 11-10-02 09:27

    I have been reading your messages for several weeks now and have yet to write in. After the death of my 10-year old nephew last Monday, I feel obligated to write. You all seem like such a close "family" and I needed some support. First of all, I would like to say to Heath I am 31 years old and had a defibulator put in last March. Just the thought of having it to save my life is much comfort. My sister had one put in the day before me. If my newphew would have had one it would have saved his life, but the doctors didn't forsee it. Wish your sister luck.

    My history: My mom passed away nine years ago at the age of 56. Out of seven brothers and sisters in my family three of us have been diagnosed with Hypertrophic Cardiomyopathy plus four nieces and nephews. My sister and one of her children, age 12, have it. My brother, his son Derek (10 who passed away on Monday while playing at recess), his daughter 15 all have the disease. I was diagnosed at the age of 25 and my son Brandon, age 3, was diagnosed last year.

    Since the death of my nephew, the doctors want to put defibulators in everyone who has the disease. As I mentioned earlier, my sister and I both had one put in in March of this year. My question is what are the risks of putting one in a 3-year old? Also, does it have to be replaced as he gets older? Will he out grow it? How often do young children get defibulators? I don't talk to my doctor for another week and need these answers to ease my mind. I agree that he needs one. I can't bare the thought of losing him.

    My other son is 6. His echo has come back clear. The doctors have seen some signs that it may develop, but as of right now he does not. Should I consider having a defibulator placed in him also even though he don't have the disease yet?

    Thank you for taking the time to read my message. I think this is a great website and will let my family know to read for comfort. Thank you.

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

    [Re: having a procedure done]

    Author: Janessa (---.dialsprint.net)

    Date: 11-10-02 11:07

    Like Kay I too am 31 years of age and have had a defib/pacer combo going on 2 years. For me having that surgery took a load off mentally after having lost so many of my loved ones to sudden death.

    Kay you're breaking my heart. Today is the date that I lost my mommy 2 years ago to HCM. Two months later, lost my cousin to HCM and about 9 years prior lost my moms only other sibling, my aunt, to HCM. My youngest of two has it and she was diagnosed while I was still pregnant. I never even thought about losing my baby. I think I remain so preoccupied with the thought of my baby losing me! My eldest, age 8, remains free and clear. HCM is female dominant in my family but my cousin was a male. I remain optomistic for my son. Most of my relatives, with about 9 being lost to the disease, have been female. Playing at recess is such an innocent thing. It's different. Participating in a sport is one thing but recess is totally different. I don't have any answers to your questions. I'm sure Lisa or Sarah will. The Medtronic website, also can address your questions about the device. I was told, as I'm sure you were, depending on the type of device you have that the battery needs replacing every 10 years or so but not the actual device.... I don't know about the device in kids but I am certainly going to find out. You would probably have a difficult time having the device placed if there is no HCM.

    I don't have any real answers to the questions you've asked but I had to respond to you just to, hopefully, give you some encouragement. This disease puts a load on your mind and the minds of your loved ones. My goodness......Stay blessed

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

    [Re: having a procedure done]

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

    Date: 11-10-02 11:55

    Kay --

    There are no words that will ever take away the pain of the loss of a child. Please know that I grieve with you and your family and your nephew will be in my prayers.

    There are too many issues re defibs in kids to hit here on the message board... please call the office and we can talk about it.

    God Bless Derek

    Sincerely,

    Lisa Salberg

    President

    HCMA

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

    [Re: having a procedure done]

    Author: Heather I. (65.247.157.---)

    Date: 11-10-02 12:25

    hi kay, this is heath, Heather I. brother. I am sorry to hear about your nephew. Heather has a five year old and a two year old and I think I would lose my mind if I lost one of them. I know what it is like to have a heart condition running rampid through your family. My father's whole side has one sort of condition or another and for some reason God decided to place this burden apon my sister, but we can't argue with him. I have had some test done and have not shown any signs of having any type of condition. I haven't had any tests done in awhile since I have been pretty busy trying to get my degree but once I start work and get insurance I plan to have all the test required. It is kind of scary though because when heather went to rochester they question whether she even has this hypertropic cardiomyopathy and if she was falsly diagnosed because of the way the heart presents. Just goes to show the level of competency our docs have here in NM. I do show signs occassionally of having a condition but I am hoping it is not. When heather arrives home on wednesday I will tell her to read all of these messages and have her reply to you. She is always looking to meet new people to share information with. Take care of yourself and it was good communicating with you.

    Heath

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

    [Re: having a procedure done]

    Author: maura mendoza (---.proxy.aol.com)

    Date: 11-11-02 07:37

    Kay

    My heart goes out to you and your family. Loosing a child is ones worst nightmare. I lost my son Travis on August 22nd, another victim to un-detected HCM. He was 14, at a football practice. He too died in front of a large group of children. Amazing how the community reacts. We live in a small coastal town in Maine, the local cardiologist was interviewed for the papers, her info was misleading so as not to cause a panic in the local community. I too was mislead before comming to this message board. Since Trav's death, I have engulfed myself in learing about this disease. As many nights sleeping is interrupted, so I turn to the computer. I have had mytwo other sons checked for HCM along w/ myself, they are calling Trav's HCM a genetic mutation, as I and my sons have no signs, but the fear is still very much there. Although I find some peace in knowing there are life saving procedurs to save there lives and possibly spare me from loosing another sweet child. I cried as I read your post, the pain in loosing a child , so young so innocent doing what comes natural, playing or doing something they love. It makes no sense. Please know that you are not alone in your grief. Its not the same as your's or Derek's mom's. But know that there are many of us out here that have losses to HCM, feel free to call on others for strength and comfort. God bless and Embrace Derek, R.I.P. sweet boy...
    NOTE: This is a post from the previous forum message board.
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