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Lisa Salberg Find out more about Lisa Salberg
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  • #16
    Thanks Linda!

    Keanu has been wearing a Medic-Alert bracelet since he was 7 months old and I have had so many classes on CPR (as well as my husband). I quit teaching and opened a business out of my home when Keanu was born to take care of him (and our other children). I haven't really left him with anybody else yet. I just can't bring myself to do that. Paranoia..... eventually I will work my way up to that. Have a great day.
    Mom of Keanu
    4 years old (will be in March)
    Dx at 2 days old with Biventricular hypertrophy
    Dx at 6 weeks with HOCM
    Dx at 5 months with V-tach
    Dx at 3 with Noonan Syndrome

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    • #17
      Lisa,

      Hey Jersey Girl! I just saw the message about going down Green Pond for some coffee...........you are on!! Whenever I pass the building with the car on the roof......i think of you!!

      By the way, family is very good. TNCJ is the best place for Jamie right now. She is healing extremely well on the inside as well as the outside! Alot of driving back and forth to Zimmerman & the plastic surgeon, but that will slow down very soon. She has had one near syncopal episode during class. This mothering/nursing from afar isn't always easy, but what is!?!? Jamie was in the company of friends at school when your nephews name was mentioned! It's only a matter of time before they run into each other.

      I highly recommend a plastic surgeon to close when implanting a pacer/icd, especially when the patient is in their teens or 20's. Body image is sooooooo important and it could make a big difference in the scar. This guy was great! I never even thought about a plastic surgeon before. Roy had 5 pacers & an icd & it was never offered to him, but Zimmerman suggested it for Jamie and I really thank him for understanding!

      take care Lisa.

      Karen

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      • #18
        My 14 year old son was diagnosed at about two months.He also had a ventral septal defect that closed by the time he was 6 months old. My husband, myself, our other son and several other family members have been checked but no one else has it. My husbands paternal grandfather died in his 50's from some type of heart problem but I don't know what. He was sick for some time before he died. That would have been about 60 years ago.

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        • #19
          Re: HCM and me ...

          Hi!

          My name is Daniela.
          When I marry my husband Ron he knew he had Hcm but never tried to find out what does it means. He told me he has a murmur and I was not worry. As he - I did the same and not made any effort to learn about the disease... (I was young and stupid )
          When I was pregnant I told my doctor about this murmur but he did not pay attention to that...
          Then for the first time I decided to learn the name of the disease and read the medical profile of my husband - there was nothing about being a genetic disease.
          Ron told me his doctor advised him to check any possible problems when I was already pregnant.
          During pregnancy I did an echo for the baby with no certain results.
          When my son was born none said anything to me about he having a murmur.
          When my son was 4 months old we visited a new doctor and found the "some-thing" that may sound like a murmur but is Severe HOCM. We were sent immediately to the Hospital to start medical treatment.
          Today my son Matan is 5 years old!!
          He is the most loving and special person !
          Two years ago we did screen all the familly a found the disease is in the family for 3 generations
          Thank for sharing your stories!
          Wishes for healh, peace and love!

          Daniela E-H, Mother to Matan-Ben (13 years old) who had his AICD implantation (29/03/04) and Myectomy (14/12/08) and Noga (4 years old) not affected
          Haifa - Israel.

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          • #20
            Re: HCM and me ...

            Thank you Daniela for sharing your story!


            Take care,

            Karen

            Comment


            • #21
              Re: HCM and me ...

              Daniela, Welcome to the message board. I am happy for you that your family is doing so well. Thank you for sharing your story, and may your family continue to learn about and deal so well with this most difficult heart condition. Best wishes, Linda

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              • #22
                Re: HCM and me ...

                Welcome to the board and thank you for sharing your story. I hope all goes well for your son and husband. If you need anything let me know, I do know several doctors in your area.

                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)

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                • #23
                  Re: HCM and me ...

                  I have lost a loved one to Hcm and have hcm myself. I have a full family history You could say. I was born with Hcm and inherited it from my dad. All my dad's brother's except one died from Hcm sudden death and his mother did also when he was 14. My aunts my dad's two sisters have it as do my two brothers. I lost my cousin She died at 40. In the heart transplant process. My father had a heart transplant in 1995 and now is doing great and rides a Harley Davidson motorcycle!! My half brother had a stroke and had his transplant afterwards. He is paralyzed on his left arm can walk but has a difficult time and walks with a brace. I am thankful for this support group and believe this Hcma group is a family within itself. Thanks for creating it Lisa.
                  Kimberly K. Plaster

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                  • #24
                    Re: HCM and me ...

                    Hi Kimberly,
                    Haven’t seen you around in about a month and a half and was wondering where you had gotten off to. Hope everything is fine and you were too busy enjoying yourself to post.

                    You sure have a rough family history. I sure hope you’re taking real good care of yourself. How are you doing on the meds? If I’m not mistaken, weren’t you talking seriously about a new pump for that chasses of yours? How is that coming along?

                    Fun hearing about Big Daddy, the biker. It looks like a new ticker gave him a new lease on life. I hope he’s enjoying every minute.

                    So, let us know how you are doing at the moment, won’t you?
                    Burt

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                    • #25
                      Re: HCM and me ...

                      Thanks for the Note Burt. Well everyone I guess to tell you all the truth I am very stressed and scared. I have a lot going on currently. I got my biventricular pacer on July 16th at Brigham and women's hospital in Boston. I ended up needing the surgery twice because a lead came loose during the night. But everything went well. I have had some good improvement. I hardly ever have chest pain anymore and not so much dizziness. The only major hcm issues that I am still strongly dealing with are difficulty breathing at night when laying down and having to use lots of pillows and prop them up really high and limitness and shortness of breath even when walking short distances.
                      I went to New England Medical center in Boston on Last friday and they discussed iv drug therapy and a transplant workup for me. I talked to my doctor at brigham on the telephone today and he agrees to that too. Now I have the difficult decision of where I want to go to get these evaluations and procedures done. Both hospitals are excellent and have very intelligent wonderful doctors. I guess I feel like with everything I have a mountain on my plate that is going to topple any minute. I went out for a drive earlier and that helped me relax some but I almost cryed when I got to the end of the driveway.
                      I know I need to relax can anyone give me some advice who has dealt with this iv therapy and transplant workup. All this and I'm hopefully going to work on september 19th. God bless you all.Thankyou all.
                      Kimberly K. Plaster

                      Comment


                      • #26
                        Re: HCM and me ...

                        Kimberly, That's an awful lot to take in. Anyone would be stressed. We're all praying for you and I know you will be getting many helpful hints and messages of support from our members. We have a few others in a similar situation right now. I'm glad you've given us an update, and please continue to do so as you move forward. As for the IV and transplant, they will spoonfeed you thru the whole process. Don't be afraid to ask questions. Get all the info you can. I hope you are able to get good rest at night, the IV med should help with that breathlessness. Linda

                        Comment


                        • #27
                          Re: HCM and me ...

                          Kimberly,
                          All I can say is how sorry I am as well . You have a lot heading your way. Take it slow , ask lots of question and have someone with you to help you get all the details so you can process them later after when you have more time to deal with them. I know that there will be many overwhelming things ahead for you as you prepare for your transplant. Know that we are all here for you and don't hesitate to share and ask for support. May you as Linda states get plenty of rest. Others who have been through this will post soon.
                          Take Care. 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

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                          • #28
                            Re: HCM and me ...

                            Hi Kimberly,
                            It was good hearing from you – I only wish your situation was a lot better – but then, it will be – some day soon, I hope.

                            If you don’t mind I’d like to make a few observations. First, you’re frightened because your brain is working well. That’s a pretty tall order to deal with, but at least you can be thankful that you have two excellent hospitals, and some fantastic doctor’s to choose from. The choice between the two should be easy to make for you though. Just ask them both how many transplants they did in the previous twelve months, and how many of them were successful.

                            As far as the IV and work-up, it’s really not your problem. Just lie back, relax and let the experts do their thing. You’ll find out all about it when they are done – and as far as getting a new pump, just look at what it’s done for dear old dad. (A biker no less.)

                            There will probably be two big stress points. The first will be sitting around waiting for the new pump, and the second will be the three month testing period after the installation to make sure everything is working properly. After that - - ta-daaa - - a new life – HCM free.
                            Burt

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                            • #29
                              Re: HCM and me ...

                              Well everyone . I had the transplant workup in September and then last fridayI had my second right heart catherization This time with exercise to see if my pressures went up. I had to lift two bags of saline solution so it felt as if I was weight lifting. They concluded that My pressures really shot up as did my pulse. The doctor who assisted with the procedure is the board director of transplant decisions. He spoke to my doctor and they both agree I should go on the list. Hopefully I will find out tomorrow if I am going to be listed sometime The reason being they have the big transplant decision meeting tomorrow. They said I should get a phone call this week and then we'll go from there. I am nervous. Thank you everyone for your support. I will keep all of you posted.
                              Kimberly K. Plaster

                              Comment


                              • #30
                                Re: HCM and me ...

                                Kimberly,

                                I can only imagine how nervous you are, but remember that we will be here praying, supporting, and trying to help any way we can.

                                Rhoda

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