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Dating and ICD's

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Lisa Salberg Find out more about Lisa Salberg
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  • Dating and ICD's

    Hi everyone,
    Today I recieved this Email:

    "I am looking for information about ways to diminish the appearance of the defibrilator once installed in one's body like it is the case for me.
    Although this is of much less importance than the medical aspect of
    cardiomyopathy, it still has an effect on one's relation with others.
    People do not get into a relationship, sexually or emotionnaly as easily whenthey explaining things can help others to understand and I agree but I don't want to educate the whole world, so I beleive if the appearance would be less evident, the problem other people have would also diminish in importance.

    Please let me know if you have any information, anything that could give me some information as what the possibilities are."


    While the appearance of the device may be minimized by topical treatments for the scar - they device itself will be felt under the skin - thus leading to having to deal with the issue at some point during the relationship.

    I think this is a very important and interesting question. I have calls in to the major device companies to help with some of there data - however I thought real life examples may be of assistance to many.

    Can you let us know how you have delt with this issue. I can not offer much help as I was married at the time of my device implants and I often joke with my husband that he cant return the merchandise - it is far different in the dating world.

    You input will help many.

    Thank you,
    Lisa
    Knowledge is power ... Stay informed!
    YOU can make a difference - all you have to do is try!

    Dx age 12 current age 46 and counting!
    lost: 5 family members to HCM (SCD, Stroke, CHF)
    Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
    Therapy - ICD (implanted 97, 01, 04 and 11, medication
    Currently not obstructed
    Complications - unnecessary pacemaker and stroke (unrelated to each other)

  • #2
    Re: Dating and ICD's

    We were already married when my husband got his ICD too. This is a good topic. I hope that there are some who can share their experiences.

    Reenie
    Reenie

    ****************
    Husband has HCM.
    3 kids - ages 23, 21, & 19. All presently clear of HCM.

    Comment


    • #3
      Re: Dating and ICD's

      I kind of understand, I haven't run into that issue in dating but during the summer months in the pool around strangers or people that haven't seen the scar. I don't make an issue of it, if they want to know I will tell them. But some people might not even notice. As far as dating at some point it will have to come up and some explaining will have to be done, but if you don't make an issue of it and can be comfortable with it then it won't be a big deal.
      Good Luck.....Gary V

      Comment


      • #4
        Re: Dating and ICD's

        Boy I wish that that scar was the only . Now a myectomy scar now that's something to explain, how about a C-section for an 11lb baby delivery and then a broken left arm that resulted in a a surgical reconstruction and a bone graft used from my left hip to rebuild it . And lets not forget the scar from cancer of the face. Add all those scars up I guess it would be a problem to explain if I were to seriously date.

        I think personally if one has to worry about all that and someone viewing them harshly because of it then the date might not be the right one. Sorry I know these things are a big deal when the world is the way it is and we have to think of how everyone else might view us , but if you are not worth getting to know first and then someone bails on you after they hear your story then it should not be so hard to kick that someone to the curb real fast.

        I do however understand where you are coming from . Life can sometimes be full of a lot of disappointment in the dating arena. I wish you a lot of joy and to find that someone special who sees you for you and rejoices that you have a devise that could save your life so that you would be in this world for them to date irregardless of the scar.

        Happy hunting . Pam
        Dx @ 47 with HOCM & HF:11/00
        Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
        Lead failure,replaced 12/06.
        SF lead recall:07,extracted leads and new device 2012
        [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
        Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
        Genetic mutation 4/09, mother(d), brother, son, gene+
        Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

        Comment


        • #5
          Re: Dating and ICD's

          wow you mean people actually have a social life. I don't even know what that is . Between work, school and this wonderful condition I don't have the energy to go out and date. As far as the ICD goes I don't think it will be a problem for me. The docs in boston did such a fantastic job that you can't even see it. Only on palpatation can you know its there and we are going to be a lot further along than the first date before he is palpating my defib

          Mary S.

          Comment


          • #6
            Re: Dating and ICD's

            Mary , What a laugh you gave me ! Thanks
            Dx @ 47 with HOCM & HF:11/00
            Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
            Lead failure,replaced 12/06.
            SF lead recall:07,extracted leads and new device 2012
            [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
            Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
            Genetic mutation 4/09, mother(d), brother, son, gene+
            Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

            Comment


            • #7
              Re: Dating and ICD's

              Hi All,

              This is a very pertinent topic and one that i have thought about often, but have not yet had to deal with. I'm very glad that it has been brought up because it worries me also. I do not have an ICD but i do have a rather large and unsightly 8-inch scar from the myectomy, and another of equal size just below it from cancer surgery. In any event, like many of you i'm basically wearing a big banner across my chest that says 'heart surgery' on it and will have some explaining to do when the time comes.

              There are so many elements to this, both physical and psychological, it's a tough one to deal with. We can all talk about love and inner-beauty till we're blue in the face, but let's face it... physical attraction is a big part of the dating scene and this was as true 50 years ago as it is today. We're not talking about twenty years, or even twenty days into a relationship... we're talking about the sales pitch here, and a big ugly scar on your chest isn't really a turn-on is it?

              Men who have had heart problems, regardless of age, are often viewed i think as being less than virile... and on the other side of the equation, a female partner with a known heart problem might be viewed as being fragile or breakable. Regardless of which partner has HCM, nobody really wants to get to the undressing part and hear 'Hey baby, i have this heart thing going on so we're going to have to take it easy, okay?'

              Younger HCM'ers have it much worse i think, since you're expected to be in top physical form. We all want partners who are going to be able to keep up their side of the sexual relationship with the same vigor and intensity we do. Everbody wants to rattle the walls and have some fun now and again, but nobody wants to be afraid their partner is going to drop dead while doin it. Especially today, with all the health concerns associated with sex, we tend to go over our potential partners with a microscope before closing the deal.

              On the practical side, i imagine when the moment arrives, i'll probably just try to keep my shirt on for as long as i can... at least until i've gotten my 'point across' and the surgery becomes less of an issue.

              I'll be very interested in hearing what other single folks have to say about this, as it is a very real and valid issue we are dealing with here.

              Jim
              "Some days you're the dog... some days you're the hydrant."

              Comment


              • #8
                Re: Dating and ICD's

                I don't have any visible scars except a small one from an electrode (yeah, sensitive skin!), however, I am in atrial fibrillation and there are a lot of things I just can't do. I also wear a Medic Alert bracelet that gets questions.

                I think the bonus to having an ICD or a chronic condition is that it is a nice way to automatically weed out the jerks. You wouldn't want to be intimate long term with anyone who can't tolerate the ICD. (And if it is just a roll in the hay, then they probably aren't going to care either!)

                It is my understanding that once the ICD is in place, you can't do anything about how far it sticks out unless you have it re-positioned.

                If you are getting a lot of comments/questions, I would recommend having a jokey response to stupid questions ready and real answers prepared for honest inquiries.

                Examples:
                "It's my cigarettes--I can't be without them!"

                "It's the computer that reboots my heart after a hard day's night."

                "It's my portable iron lung."

                But, bottom line, if YOU are ok with how you look and feel, then you won't be worried about what anyone else thinks.

                Take care,

                Sarah

                Comment


                • #9
                  Re: Dating and ICD's

                  Since my husband and I are still dating after 32.5 years, and just having an implant six weeks ago, let me tell you his reaction...... very shocked when he looked at it.

                  I have an attitude problem though Love me for who I am not what I look like .

                  Actually though it was the brusing that shocked him. My scar looks great. Since I had three c-sections, and two carpal tunnel release, this scar is already fading. Not even seven weeks yet.

                  The unit barely protrudes from under the skin, unless of course you are thin. I fortunately am not......

                  If you are seriously involved in a relationship the unit that is there to save your life is the least of your problems. Being in love and staying in love is a bigger problem I think.........

                  I believe attitude supersedes here.

                  Comment


                  • #10
                    Re: Dating and ICD's

                    Yeah, i hear what you're all saying...

                    But we're not talking about being in love or staying in love... we're talking about getting in love. When it comes to dating... not many guys (or women for that matter) are looking at your inner-beauty and saying 'Wow, would you look at that inner-beauty? That's really hot! She got a nice little inner-beauty on her.' It's all physical attraction up front... that's how we were designed. This issue is a real one for us single folks, and i'm anxious to hear how other single folks deal with it.

                    Sarah... i do like your idea of just having fun with it. Maybe by shrugging it off as not a big deal, it won't be? I'll have to try some of those lines out! Don't worry, i won't hold you responsible if i fall flat on my face... i do a good enough job of that on my own.

                    Jim
                    "Some days you're the dog... some days you're the hydrant."

                    Comment


                    • #11
                      Re: Dating and ICD's

                      I can see we are all havin some fun with this one . No , now to be serious I agree with Sarah and Virginia. Life is hard for us HCM'ers alone and to add the added problem of being accepted physically well that is a tough lot . I agree attitude and self confidence goes a long way. If you're out there then you got to be willing to take some knocks here and there and your ego has got to be strong enough to deal with some rejection or frankly I think you might not be able to survive it emotionally. I think that is why some of us sit on the side lines and watch. I am glad that I had many opportunities in my life and many offers. I took one of those offers and had the gift of a marriage that worked for awhile and I have 3 wonderfull kids (prizes to take away with me). Now I am not braggin but looking back I had a lot to offer just not the right sales pitch to the right person and in retrospect my attitude is better and mature now just I have all these physical problems. I quess in life we can't always expect to have it altogether in one neat package when we want it . Life is tough and sometimes you just got to make lemonade. I personally think that I can be fullfilled in at least having had what some never get and my heart trully goes out to them. This is because I believe if someone really wants a great relationship and the love of their life then by gosh they should at least have a whack at it.

                      I have a longtime friend who dates men from the internet but they are guys who want large women and she is very very large. I think what she does is kind of loose but she is an adult and I respect her choices to seek out love . Well I always think these guys LOVE FAT WOMEN wow they must be something as people. When she gets past all the crumbs and finds the true ones it is other things not physical that stand in the way of long term commitment . She gets right back out there each time . She says you have to develope a tough outer shell and keep that inner beauty flowing. Remember the movie "Shallow Hal?" Big message for every generation. Too bad it is just a movie. Maybe we need to go back to my grandmothers day where everything was done in the dark . She said even at 95 said she never saw my grandfather naked and he never saw her. They were married for 57 years before he died.

                      Sorry Jim I really do not have any answers and certainly not for guys or gals who can't get past ones outer shell. I think it is true what you are saying as it was for me for so many years as well but I think we can all agree that sometimes at first meeting someone does not look too appealing but after talking for awhile and spending some time don't they seem to look better? I know I have talked to others and they agree. It is strange how that inner thing takes over a bit after awhile .

                      Well I have rambled enough , holy ... look at the time!!
                      Later . Pam
                      Dx @ 47 with HOCM & HF:11/00
                      Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
                      Lead failure,replaced 12/06.
                      SF lead recall:07,extracted leads and new device 2012
                      [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
                      Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
                      Genetic mutation 4/09, mother(d), brother, son, gene+
                      Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

                      Comment


                      • #12
                        Re: Dating and ICD's

                        Hey, Virginia,

                        Did you marry a NJ guy? I did! We've also been married and dating for 32+ years, having gotten married on Watergate day. We still celebrate every 17th of every month with at least a special wish and a kiss and snuggle. Let's see, that's (32 x 12) + 2 wedding anniversaries (well maybe they're lunaversaries actually ). Pretty good, huh! Those NJ guys are real keepers! My sister married one and is still married after 34 years. My daugher married one and is in her fourth year. None of us lived in or met in NJ, but we figure there must be some special connection. For those old enough to remember, we figure that the secret is revealed in the movie Sleeper in which Woody Allen, after waking up 200 years in the future, is told that there is a rumor that some Italians still do it the old way.

                        For all of you out there who are dating and hoping for marriage, let me remind you of one thing: If it were true that people only married for looks, then there would be a lot more beautiful people than there are and people in general would be getting more and more beautiful. So, where did all of us ugly ones come from????

                        Just a thought to consider.
                        Rhoda

                        Comment


                        • #13
                          Re: Dating and ICD's

                          No being from The Bronx, I met and married a guy from Brooklyn. It was love at first sight. (I needed glasses )

                          We met on Feb. 17, 1972 and have been together since. We have been through it all.

                          I kid everyone not on this subject. Attitude is everything. Why sweat the little stuff like an implant.

                          Love or falling in love is about your mind, heart and soul. Looks are not everything. Unconditional love, is sticking by your partners side, no matter how high the mountain is that you have to climb together. As long as it is, hand in hand.

                          Hopefully before you jump into bed with anyone, they know enough about you, including the implant.

                          As far as those bouncy nights in bed, your partner will be glad that implant is there, if you explain the implant properly. It will be less of a reason to worry about a great roll in the hay. Your heart will beat on.

                          I thought I was going to be so obsessed with this thing. Amazingly I am not. I show it to everyone. My dr. and I were sure I would be having panic attacks and all. Not a one.

                          So I agree it will get rid of those looking for just a roll in the hay which you don't need in your life. It will keep around those that are looking for the long haul.

                          I might not be young, but I am young enough to remember. I dealt with a weight problem all my life. (thyroid issues) I always said it took a man to handle all of me.

                          By the grace of God we have small scars showing our implants vs. years ago and having large ones down the middle of our chest for an implant. Just think of those that had it done then. The scars they are dealing with.

                          Again don't sweat the small stuff and get an attitude.

                          Comment


                          • #14
                            Re: Dating and ICD's

                            Well

                            I have a story about my self and my daughter, long before i knew of this disease and i had just had my first baby some of us ladies are not quite as lucky as some and and get stretch marks in places we didn't know existed well i'm one of those women, i was 18 when i had my first baby and my husband was in boot camp he came home after and i didn't want to get undressed in front of him and i started crying i even turned out the lights but he turned them back on and he seen my stomach and said shirley I Love You even more, you just had our baby it just shows you had a baby


                            Then one of those babies grew up and and had 2 kids and then was told she had to have a major surgery at the age of 25 and she was cut from sternum to pubic bone, try to hide that scar and they removed her intire large intestines now she has to go to the bathroom 8 to 10 times a day and she will never go less then 5 times a day, and then she got well but this only took place 2 years ago and she also had to have her gallbladder removed a month after surgery so my daughters belly looks like a road map and she is single, i was worried about her dating after the surgery and finding that mister right she could spend the rest of her life with and then an old boyfriend came into the picture and he came to see her on night and things got intimate and he saw her stomach and he said Janet i don't care about that that isn't what makes you, and that really showed me he really cared for my daughter, i mean he is a good looking guy and he could have anyone he wanted but he chose my daughter, these are just my experiences

                            Shirley
                            Diagnosed 2003
                            Myectomy 2-23-2004
                            Husband: Ken
                            Son: John diagnosed 2004
                            Daughter: Janet (free of HCM)

                            Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

                            Comment


                            • #15
                              Re: Dating and ICD's

                              Shirley what a great story and a source of inspiration to those who are worried about a small implant scar or any scar. Thank you for sharing with us.

                              I was remembering a story last night about a friend when I was in college. She had a date with this real nice and good looking guy and of course that was always her 1st criteria ; they had to be real good looking or she would not date them. Well as she told it they went out , had dinner and then went to a beach and sat in the lot talking . She began to here this gaseous noise with great frequency so much so that she could not overlook it so she asked this guy " Are you f--ting?" He looked at her painfully and said " No , but since I had cancer of the colon I have had to wear a colostomy bag and it will be this way for awhile until they are able to reverse it. " She became ill and he had to take her home. I have always remembered this story and how it must have made this young man feel at the time. He died later that year.

                              I drifted away from this friend and at age 33 there she was in line in front of me at a childs amusement park. I had only recently had my 11lb son and as the birth took a lot out of me and as well my girls were ages 5&6, well the looks I had had were now faded. I accidntally hit the back of her leg with the stroller and she glared at me and made a rude comment. It was then that I knew who she was. She never did recognize me . So seeing her with her family a few minutes later , I went up to her and said ," Do you know who I am?" She replied, " Yeah you were behind me in line and you ran your stroller into me. " I should have walked away but I revealed my identity and she gasped in great surprise making me feel even worse . I felt better when I noticed that she had married her old boyfriend who was plain ,ordinary and still very obnoxious. My husband on the other hand was very handsome and those looks just came with the package.

                              After that incident I worked hard at learning to accept changes and tragedies as they come and avoiding people who portray superficiality.

                              Just a story I remember. Pam
                              Dx @ 47 with HOCM & HF:11/00
                              Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
                              Lead failure,replaced 12/06.
                              SF lead recall:07,extracted leads and new device 2012
                              [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
                              Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
                              Genetic mutation 4/09, mother(d), brother, son, gene+
                              Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

                              Comment

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