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A family of everything...

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cheerchicken05 Find out more about cheerchicken05
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  • A family of everything...

    An innumeral amount of people are praying for my family but i think we need all we can get. Between my dad & i, we're in the doctors weekly, sometimes more than once a week.

    I, obviously, have HCM and we all know the frustrations that hcm brings along with it. I was diagnosed two months ago, and its been a LONG, frustrating, and none the less overwhelming two months.

    AS for my dad.

    YEARS ago he had Epilepsy. he hasnt had seizures in over 15 years. about 9 months ago these seizures started again. Before this, he had NEVER had more than one seizure in a year. in total he had i think eight seizures but NEVER more than one in a year. Within the past 8 months, hes had 4, meds arent helping because hes having daily partial seizures (or "auras") which arent what you would consider a seizure, but he just looks and feels very very sick and he has "head things" going on. Hes most likely having "depth probes" where they drill holes in his head and put sensor things in. this COULD lead to having brain surgery to take out the part of his brain that causes epilepsy.

    Meanwhile we're trying to determine the severity of my HCM, and trying to figgure out if i need an ICD because im in a grey area for it.

    So anywho prayers for my family are much needed and much appreciated. needless to say, Its kinda crazy over here.
    ~janelle*
    \"The heart swells at the magnificance\"

    1 timothy 4:12: Do not let others look down on you because you are young, but set an example for believers in speech, in life, in love, in faith, and in purity.

  • #2
    Re: A family of everything...

    Be assured of our prayers on behalf of your family.
    Peace,

    Leon
    God Squad co-moderator
    Nothing is as gentle as strength and nothing is as strong as gentleness

    Comment


    • #3
      Re: A family of everything...

      Janelle, You and your family will be in our prayers. I see you've posted several times today, you're carrying quite a load right now. You and your family have a lot of big decisions to face in the near future. Hang in there, keep asking questions till you all feel comfortable with the decisions you make. We're here for you. Linda

      Comment


      • #4
        Re: A family of everything...

        Dear Janelle,
        Prayer is a wonderful tool for all of us! They bring peace and balance to the times in our life when everything around seems so out of control. My prayers and the prayers from the circle of prayer partners that surround my life are now praying for you. May God's peace wash over you and bring you the balance you, your family, and the doctors need to guide you to the right medical decisions. We will be praying the same for your father and hope he and all those around him are comforted during this struggle.

        May God's healing angels be with you and yours always!
        Blessings with Love and Light,
        Sharon

        Comment


        • #5
          Re: A family of everything...

          Janelle, we're all thinking of you. I hope that all of you can get more of a sense of normalcy in your lives. I pray that they are able to help your father with his seizures. I also pray that you'll find the right path to take with your meds and your decision to get an ICD or not.

          Reenie
          Reenie

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

          Comment


          • #6
            Re: A family of everything...

            Janelle,
            I kinda know where you are coming from. I was diagnosed with HCM in early January and it came as a relief, as I was suffering from all the symptoms and until then the doctors would just look at me funny and change the subject.

            At the age of 45 my wife developed epilepsy (Partial complex temporal lobe psycho motor seizures) and it destroyed her career. She had four to six seizures a month for years, and all the drugs had no beneficial effect – and some made her crazy. A number of years ago she tried a new drug and it stopped the seizures for three months, but then they began again and increasing the dosage had no effect. A little over three years ago another new drug was released and this held her seizures to about one a month, and most of those were mild. There are some signs that this drug is now loosing at least some of its effect, but we just increased the dosage and hope this works.

            I’m in a reasonably good place with the HCM at the moment, and my wife is fairly comfortable with the epilepsy control. She still gets upset when she has a seizure, but wouldn’t we all. My diabetes is at last responding to the insulin shots, my kidneys are holding their own for now, and my arthritis is not too bad, so all’s well with the world.

            When my wife was being seen at UCLA, brain surgery was discussed, but she is not a good candidate for it now. Hope you and your dad both find some peace with your situations, and continue to live long happy lives. I used to say to my wife, “OK, your seizures consume an hour and a half to two hours a month. What are you doing with the rest of your life?” This gave her the strength to put things in perspective and move on. I hope you and your dad find the strength to move on also. My prayers are with you both.
            Burt

            Comment


            • #7
              Re: A family of everything...

              Dear Janelle,

              I'm praying!

              Rhoda

              Comment


              • #8
                Re: A family of everything...

                Janelle,

                I, too, am praying for you and your family. The stress of it all can take its toll on anyone. Peace in knowing that all comes from a higher power for peace and comfort.
                Dorothy

                Diagnosed 1996, Myectomy Aug. 2000, 3 Radio-frequency ablations for a-fibs 2003-2005.

                Comment


                • #9
                  Re: A family of everything...

                  I too am Praying. May the Lord hold you and your family in his hands. -Darren

                  Comment


                  • #10
                    Re: A family of everything...

                    Janelle,
                    I will be praying for you and your family during this period in your life.
                    Remember to take care of yourself.
                    Joyce
                    \"We are not human beings having a spiritual experience. We are spiritual beings having a human experience.\"
                    Pierre Teilhard de Chardin

                    Comment


                    • #11
                      Re: A family of everything...

                      I will keep your family in my thoughts and prayers. I can relate all too well to your dads situation. Although I may not mention it often, I too have seizures and have been on meds for over 14 years for them. Seizures (for me) are much like chest pain...no one sees it and thereby it is hard for people to understand that 'something is wrong'. I am not sure what type of seizures your dad is having (mine are sensory seizures) but I do know there are WONDERFUL things that can be done today to controll them.

                      Re you HCM - are you seeing a specialist? (forgive me if you have answered that already). We are happy to be here to help in any and every way we can!

                      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


                      • #12
                        Re: A family of everything...

                        You are right we can all use all the prayer we can get. I just found out I have HCM too. I will pray for you and your family. Just remember God can guide you through anything. I will pray for you and your family.
                        2.6 Septal Measurement
                        ICD Aug 2010 (pushed into it over 6 abnormal beats...hate it!!!)
                        "I would rather have thirty minutes of wonderful than a lifetime of nothing special"
                        ~Steel Magnolia's~

                        Comment


                        • #13
                          Re: A family of everything...

                          Hey kiddo... how is dad doing??

                          Take care!
                          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


                          • #14
                            Re: A family of everything...

                            hey, sorry i never replied...hes doing ok. the new meds seemed to help a lot but the effects are wearing off, hes getting partials daily, he had one today...but we'll see, more tests are probably to come after the summer round of vacations...
                            ~janelle*
                            \"The heart swells at the magnificance\"

                            1 timothy 4:12: Do not let others look down on you because you are young, but set an example for believers in speech, in life, in love, in faith, and in purity.

                            Comment


                            • #15
                              Re: A family of everything...

                              Please know we are thinking about you and that your HCM family is here for 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)

                              Comment

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