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My mother has HOCM

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  • #31
    Re: My mother has HOCM

    Burt,

    Apologize for the late reply, I am sure you understand how hectic it is for me these days.

    Of course I don't mind all the nice wishes and prayers my mother have been getting, after all we all pray to the same God.

    Thanks to all of you for your support.
    --
    Mohamed

    Originally posted by Burton Borrok
    Mohamed.
    I hope you don’t mind that a Jew has been wishing your mother peace and a full recovery – and peace and happiness to you and your whole family.

    When all is said and done, we are still half brothers, and who can you turn to for help if not a relative? It sounds like your mother is receiving excellent medical care now. I just wish they had been there for her when this whole problem started.

    Before you return to the States from Egypt, I hope you have cause for great celebration.
    Burt

    Comment


    • #32
      Re: My mother has HOCM

      Hi all,

      I would like to thank you all for all the nice wishes and support. My mother is slowly recovering from CHF and should be out of the hospital soon.

      Her cardiologist declined to perform the ablation as he does not have the necessary experience. I am writing today to see if anyone can help figure out the way to invite a cardiologist from Cleveland or Royal Brompton to go to Cairo for a few days to perform the ablation.

      I would really appreciate any help in this regard,

      Thanks again for all the wishes, I am now back in Atlanta and waiting for any advice.

      --
      Mohamed

      Comment


      • #33
        Re: My mother has HOCM

        Mohamed,
        I am sorry your mom could not have the procedure at this time. I think Lisa will have some suggestions for you. I am sorry i do not have any answers for you regarding cardiologists traveling to Cairo to perform ablations. I can not imagine that today with all the legal and professional licensure regulatios that this is an easy accomplishment. Your mom will she be able when stronger to come to the states?
        We will see what Lisa has to offer.
        I am glad you can keep us informed . We will try to help all we can.
        Best Wishes.
        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


        • #34
          Re: My mother has HOCM

          Mohamed,

          You and your mother will be in my families prayers. Keep us posted!

          -Darren

          Comment


          • #35
            Re: My mother has HOCM

            Hi,

            Last week we switched to another cardiologist in Egypt, another top name.

            This one is completely against the ablation procedure! I am waiting to see what course of treatment he will offer to her (medications or surgery?)

            I am currently emailing Dr. Carlo Di Mario (or Brompton Hospital, London UK) to try to get a second opinion. All communications are really done through his assistant and I am hoping that he will help us decide on the correct course of treatment.

            As far as travelling to US, I don't think that will be possible due to the very long flight. We are considering London as another alternative.
            --
            Mohamed

            Comment


            • #36
              Re: My mother has HOCM

              I'm glad that you are condidering the UK. They have some excellent doctors there too. Is your mom feeling a lot better now? I'll still pray that you find the right doctors who will do the right procedure to help her.

              Reenie
              Reenie

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

              Comment


              • #37
                Re: My mother has HOCM

                Mohamed, I hope your mother soon gets the care she needs. She is in my prayers, Linda

                Comment


                • #38
                  Re: My mother has HOCM

                  Mohamed,
                  I’d like to make a quick observation if I may, in the event your mom travels to London to see Dr. Carlo Di Mario. Your mother may be quite conversant with English, but some of the technical terms and their meanings might be hard to grasp at the first meeting. Also, I’m sure this whole situation has got to be upsetting for her, which only adds to any communication difficulties.

                  To ease the whole situation, I would like to suggest your mom take a tape recorder with her to the doctor’s appointment, and record the entire session. That way she can listen to it again when there is less pressure, so she can really understand what the doctor said. This will also give her the opportunity to look up any terms that are strange to her, so she can fully understand what was said in the entire meeting.

                  With the tape recorder I would suggest she also bring a list of all the questions she has, so she won’t miss asking the doctor anything she wants answers to.

                  I hope all the effort and concern with this situation turns out to pay great dividends, and your mom can enjoy many more years of health and happiness. I don’t think anyone has said anything before, but you are obviously a very good son, and your mom has got to be extremely proud of you.
                  Burt

                  Comment


                  • #39
                    Re: My mother has HOCM

                    Mohamed ,
                    My thoughts and positive thoughts are with you. I hope soon your mother will have all the answers and proper care to make her have restoration to a quality life.
                    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


                    • #40
                      Re: My mother has HOCM

                      Thank you all for the good wishes.

                      Burt, I like the tape recorder idea I will pass that along to the family over in Egypt.

                      Today my mother's blood pressure dropped, the doctors were quick to diagnose and react. Their decision was to start her on IV solutions to increase water volume - again - in her body. They are afraid that draining too much fluids with the diuretics will cause blood pressure to drop again.

                      I am not I mentioned this before, but she is seeing a new cardiologist now. He started her on Cordaron (in addition to Inderal). We will have to wait and see if medications will prove successful with her.

                      --
                      Mohamed

                      Comment


                      • #41
                        Re: My mother has HOCM

                        I just checked Medline for information on Cordaron. What I read makes me really worried. I would appreciate if someone can answer these questions.

                        Cordaron (and norpace before that) are anti-arrhythmic agents. Is this considered a treatment for HOCM? It sounds that it is more of a preventative medication to prevent developing arrhythmia, am I correct?

                        On this site:
                        http://www.nlm.nih.gov/medlineplus/d...di/202029.html
                        it says that Cordaron is "highly toxic." My mother is currently taking medications to help her liver functions and to control its enzymes. I am very worried that Cordaron will have a negative impact on her liver.

                        The last episode of blood pressure drop she was, among many other things, on norpace. That drop led her into shock. Critical Care doctors started her on norpace again after she was stable then decided to stop when they observed another pressure drop. Could norpace be the cause for the pressure drop? I say this because after starting Cordaron her pressure dropped to 80/50.

                        The bottom line here is that I am absolutely worried that Cordoran might affect her liver, and could also be the cause behind blood pressure drop. I would be very thankful if anyone can explain to me 1) why is she taking this medicine, 2) is it absolutely necessary, and 3) is there a replacement that doesn't have as much side effects.

                        Thanks,
                        Mohamed

                        Comment


                        • #42
                          Re: My mother has HOCM

                          These are questions that you should be asking her doctors. Without knowing about what is going on with your mother, noone here can judge.

                          Cordarone is a highly toxic and highly effective anti-arrythmic. It is generally the drug of last resort because of its side effects. It is used to treat ventricular and atrial arrythmias (although the use for a-fib is off label in the U.S.) Norpace is another anti-arrythmic. Apparently the doctors didn't think that it was stopping whatever arrythmias your mom was having. Norpace is also used to reduce gradients in HCM. As far as I know, cordarone (amiodarone) isn't used to treat other HCM symptoms.

                          Amiodarone can cause liver problems, so her doctors should consider this.
                          Daughter of Father with HCM
                          Diagnosed with HCM 1999.
                          Full term pregnancy - Son born 11/01
                          ICD implanted 2/03; generator replaced 2/2005 and 2/2012
                          Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.

                          Comment


                          • #43
                            Re: My mother has HOCM

                            Mansour,

                            Yes amiodorone is highly toxic albeit a highly effective anti-arrythmic medication. It helped me get out of A-fib on one occasion and maintained me out of it after one subsequent cardioversion for the same. I was told it is very toxic and that I had to be off of it and tapered down before three months. Now some here will report that they are on it in a lowered dose and those risks are considered when determining efficacy of this drug.

                            I will tell you I was very sick while taking it . The nausea that I experienced was directly related to it and that ended soon after it was terminated. I felt very very sick and it was hard to function as a result . It made me very light headed as well and my BP ran very low. I felt cold all the time and I had a hard time keeping my fluid from building up. I took it for three months following my myectomy. I got a moderate infection in my IV site from it and and when they switched sites I got one there too. The areas became inflamed and drained purelent . It took about a month with warm soaks and topical treatment for those to heal. I have had difficult times with "chonic breathing" problems since that time. I had a moderate sized pleural effusion drained 7 weeks post surgery so you would also have to factor that in the lung condition. I will be having pulmonary function tests tomorrow and this will give us a comparrison to see if I am worse since all these things.

                            I can only tell you I tried to be positive but this med kept me down as I saw it and it was a great day when I was allowed to stop it.

                            It takes ~ 3 months for all the amiodorone to wash out of the tissue so effects although they decrease can linger depending on the individual.

                            As we are all different the toxicity effect can vary.
                            Please speak to your mom's doctor candidly and bring all your concerns to him as well as questions regarding alternatives and expected outcomes. Personally I think the drug does it's job and did for me , I just hated it.

                            I hope you do get some answers and your mom feels better soon.
                            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


                            • #44
                              Re: My mother has HOCM

                              On a quick look ---I would suggest you speak to the doctors about an implantable defibrillator - the meds may be needed - even if the side effects are not so wonderful. The ICD will protect her from sudden death better then the medications can - this has been proven time and time again.

                              best wishes,
                              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


                              • #45
                                Re: My mother has HOCM

                                Just got off the phone with Cairo. Mother is in critical care again due to a drop in blood pressure. Her BP now is back to 80/50.

                                Any body knows if amiodorone can be the cause for this BP drop?
                                --
                                Mohamed

                                Comment

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