If this is your first visit, be sure to check out the FAQ in HCMA Announcements. You may have to register before you can post: click the register link above to proceed. To start viewing messages, select the forum that you want to visit from the selection below. Your Participation in this message board is strictly voluntary. Information and comments on the message board do not necessarily reflect the feelings, opinions, or positions of the Hypertrophic Cardiomyopathy Association. At no time should participants to this board substitute information within for individual medical advice. The Hypertrophic Cardiomyopathy Association shall not be liable for any information provided herein. All participants in this board should conduct themselves in a professional and respectful manner. Failure to do so will result in suspension or termination. The moderators of the message board working with the HCMA will be responsible for notifying participants if they have violated the rules of conduct for the board. Moderators or HCMA staff may edit any post to ensure it conforms with the rules of the board or may delete it. This community is welcoming to all those with HCM we ask that you remember each user comes to the board with information and a point of view that may differ from that which you hold, respect is critical, please post respectfully. Thank you

Announcement

Collapse
No announcement yet.

Help.. Pregnant wife w/ questions

Collapse

About the Author

Collapse

rocky52 Find out more about rocky52
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Help.. Pregnant wife w/ questions

    My husband has recently found out that he has HCM and I am so worried and can barely sleep. I have a 2 year boy and pregnant with my second. How do I find out if my children will be affected by this? What patients are at risk for sudden death? I can not get this out of my head. My husband seems to be the only one in his family that has this so far but his grandfather had a pacemaker and he lived to 99. No sudden deaths in the family. I need some info because i will go crazy with worry. He has an appt at the Cleveland Clinic in Ohio and we live in Florida. I don't think the Dr. is a specialist and from reading the posts I think he needs to go to a specialists. Thank you, this is very depressing!

  • #2
    Re: Help.. Pregnant wife w/ questions

    It is late but I wanted to respond with a quick note. Please do not worry so much. Give me a call in the office on Thursday and we can talk over all the risk factors, screenings and options for your kids.

    Worry about you and that new baby.

    Be well.

    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)

    Comment


    • #3
      Re: Help.. Pregnant wife w/ questions

      Thanks Lisa- After another sleepless night-this is all pretty overwhelming right now and the pregnancy hormones aren't helping. My husband is going to call you regarding specialist here in Jacksonville florida. I would love to speak to you and just get some answers, facts, etc. I didn't realize untill yesterday that HCM is genetic I'm praying my genes are stroger than my husbands. Hopefully I will talk to you soon. I'm feeling a little better today knowing there are other people out there surving and living with HCM.

      Angela

      Comment


      • #4
        Re: Help.. Pregnant wife w/ questions

        Dear Angela,

        Dr. Lever is the HCM specialist at the Cleveland Clinic. They are some of the best. The health care in Florida is not award-winning from what I can tell.

        Use the search function in this board (link is next to FAQ above) to find the sudden death risk factors list (i'm late for work, or i'd retype them here).

        The vast majority of HCMers live a full life. Take deep breaths and put one foot in front of the other and talk to Lisa, send Hubby to Cleveland, and do more research. The early days are the scariest.

        take care,

        S

        Comment


        • #5
          Re: Help.. Pregnant wife w/ questions

          Angela,

          I had open heart surgery at the Clevelnd Clinic in Ohio 7 weeks ago. I really believe it is a great hospital for people with cardiac problems.

          Always keep a Positive Mental Attitude and thing will work out for the best.

          Keep in touch and let us know how thing are going...

          Pat Ekardt
          " Real Courage Is Being Scared To Death But Saddling-Up Anyway "

          Comment


          • #6
            Re: Help.. Pregnant wife w/ questions

            Hi Angela. I know you're really worried right now. All of us have been there. I think that Dr Asher from the Cleveland Clinic in Cleveland is now at the Cleveland Clinic in Jacksonville. He is an HCM specialist. Lisa can give you more info on this.

            As far as the genetics go for HCM, there's a 50-50 chance that your husband will pass the gene, but same chance that he won't. Most with HCM live long full lives. My husband's grandmother had HCM and just died this spring at 91 years of age.

            For now love those babies and take time to learn. We're here for you to ask any questions you want. Welcome to the HCMA.

            Reenie
            Reenie

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

            Comment


            • #7
              Re: Help.. Pregnant wife w/ questions

              Hi. Just to clarify. We have a branch of Mayo Clinic in Jacksonville. There are Cleveland Clinic Centers in Naples, Fla and Weston, Fla but not in Jacksonville.

              Comment


              • #8
                Re: Help.. Pregnant wife w/ questions

                Angela,
                I also got ot the cleveland clinic for my care and I have had my daughter there too. The cleveland clinic is a awesome hospital as well as Dr. Lever and I won't go to any other hospitals for most of all the important testing and treatment that involves hospital stays and I keep a good doctor close to home to manage me here. There is a 50/50 chance that hcm can be passed on to your children. I wouldn't let the stress tear you apart like this being pregant and I would call Lisa, she's amazing and can help you and your husband get through this much easer and finding the best hcm specailist. Good luck and feel free to e-mail me if you like.
                Jen

                Comment


                • #9
                  Re: Help.. Pregnant wife w/ questions

                  Angela,

                  I am felixdacat's wife. He has HCM and a few months ago had a myectomy. he seems to be the first in his family to have this from what
                  we can tell. (similar situation)
                  We have 2 children who are 3 1/2 and 5 1/2. I know there is a chance
                  this can be passed to them. I also know that it may not present itself
                  until they are older. Right now we just have to watch them. Felix really
                  wants to try to get some genetic testing done to see if they can find
                  the mutant gene and see if our children have it. for now we just have
                  to keep in mind that one day we may have to tell them that they cannot
                  do competitive sports. they might even need surgery. not something
                  as a parent I look forward to, but I keep my fingers crossed that
                  it will not work out that way.

                  My brother is a type I diabetic. He did not have symptoms of it until
                  he was 18. So that is another disease that our kids may have. More
                  to worry about.

                  I also worry about all the other things that parents worry about. the freak accident at the playground, playing with the chainsaw when they are older,
                  and all the other things that can happen. If not HCM , there are other
                  things that can happen to our children. I know so many parents who
                  have an autistic child, or other disabilities or problems. I have one
                  friend who has 2 kids that have extreme excema.

                  There is a factor with HCM that can cause death, but from all that
                  I know, if the right care is given we have ICD's and other devices to
                  help prevent that. Also making sure they dont overdo it. YES I would
                  like to know right now if either of my kids have this, this way I can
                  plan accordingly. that is the worse part. I hope with the research they
                  are doing that genetic testing will be commonplace soon.

                  I remember my hormones going wild when pregnant. they told me
                  that I had autoimmune issues when I was 14 weeks pregnant with
                  my first and told me I was at a greater risk for 2nd trimester miscarriages
                  among other things. I saw specialists. had ultrasounds all the time.
                  I was convinced something really really bad was going to happen. I totally freaked out. I spent lots of time on the web. Freaked myself out more.I was also worried with my 2nd one as well. I was suppose to have issues
                  with miscarriages all the time. none of that happened luckily.

                  enjoy your children. this is something that you need to face, but its
                  manageable. There are some parents on this board whose children
                  have had myectomies at young ages. make sure to educate your
                  pediatrician.

                  hope this helped in anyway, as I also a wife of an HCM'er. I came to
                  this board for support a lot when felix had his surgery. By finding this board your husband can now find some great care. We live in atlanta
                  and actually went to Boston.

                  If you want to PM me, please do so.


                  sandy

                  Comment


                  • #10
                    Re: Help.. Pregnant wife w/ questions

                    Those who are newly diagnosed often get hit with OVERLOAD! To much information can be very hard to take - so PLEASE take your time. Your husband has lived a long time with HCM, the ONLY difference is now you happen to know about that has been there a long time.

                    I look forward to speaking to you soon.

                    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)

                    Comment


                    • #11
                      Re: Help.. Pregnant wife w/ questions

                      More clarification: Dr. Lever is at the Cleveland Clinic in Weston, Florida (which is about 1/2 hour north of Miami).

                      Comment


                      • #12
                        Re: Help.. Pregnant wife w/ questions

                        Thank you all for your posts. I do feel somewhat better but still very emotional. I plan on calling Lisa the first chance I get. To top it off I have been working with my manager the last couple of days.
                        Hopefully I will get some sleep tonight and tomorrow will be a brighter day.

                        Thanks again!
                        Angela

                        Comment


                        • #13
                          Re: Help.. Pregnant wife w/ questions

                          Hi Angela,
                          One month from today I will turn 72 years of age. I served in the Army – been to Korea, and lived a full life. One of the risk factors for instant death is having blood relatives who have suffered instant death before turning – I think it was about 50. It sounds like your husband and relatives are not in that category. Chances are excellent that you will all live full lives – about as normal as everybody else.

                          There are things to do, like periodically getting checked with an echocardiogram – ECHO. If they suffer some symptoms, there are drugs to control it. If drugs don’t work there are other procedures – and who knows what advances will happen tomorrow.

                          I have HCM which interferes with my quality of life to some extent. I have coronary artery disease which interferes to a much greater degree; I have diabetes which interferes even more, and I have familial hyperlipidemia (another genetic disorder) which interferes the most. In fact the last time I saw my cardio he said most people with it die in their fifties. HCM is just one other condition to live with – generally no big deal.

                          Go have your baby and live a long, wonderful life with all the members of your family.
                          Burt

                          Comment


                          • #14
                            Re: Help.. Pregnant wife w/ questions

                            I saw Lever at Cleveland in Cleveland ---does he visit Florida often?

                            Last I heard, the Mayo branch in Florida didn't have an HCM specialists but that may have changed.

                            S

                            Comment

                            Today's Birthdays

                            Collapse

                            Working...
                            X