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mtlieb Find out more about mtlieb
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  • #16
    Only thing I know is that my grandfather had a massive heart attack, but he is still ALIVE, thank goodness! My uncle has heart failure, poor fellow, and I can tell by him weezing. I don't know if this has any indications for me, but I think heart problems run on my father's side of the family. Not to say my mothers side is without, but there is little to go on. I know of diabetes running on my mothers side. Anyway - I just scratch my head and off I go to research and research.

    After all this is my life and my health and if I can get what is rightfully mine then I am going to. I don't give up easily, so no one knows what there dealing with. I go searching and if I get a no, I usually find a yes somewhere out there. May be it sounds like I am spoiled or want things my way. Not really, I just want what I know I can get!

    Sorry Jim, I know this was meant for your family research posts. I will stop posting here after this post. I hope you find what you are looking for!

    Comment


    • #17
      toe stepping

      Dear Anna,

      No need to apologize for sharing your story on "Jim's" thread ---that IS what we are here for. And Jim wouldn't have shared if he didn't want to hear other people's history, too. Right, Jim?

      I'm the moderator, not the posting police!

      S

      Comment


      • #18
        SheliRenee, Sorry if my posting confused you. Ventricular fibrillation(VF) is a very disorganized electrial activity in the heart that is not able to pump out blood to the rest of the body. Normally, the muscle cells should all contract together to squeeze the blood out of the heart, but with each cell contracting on it's own time frame, the heart sort of quivers. A shock will temporarily stun this quiver and let the normal heart beat take over to start pumping in an organized fashion again. With very fast rhythms such Ventricular Tacycardia(VT) or different tachycardias originating in the upper chambers of the heart, a shock using a lower energy level may be used to knock out the very fast focus and allow the normal one to take over again. I mentioned that the defibrillator could only help those bad rhythms that will respond to it's capabilities. This is to remind everyone that sometimes, more than a defibrillator is needed to bring them thru an emergency. The defibrillator is the best backup to have, but always call for immediate help if someone collapses or if their defibrillator fires and they are not immediately "OK". They may very well need medications, IV fluids to bring up the blood pressure, or it could be a rhythm that a defibrillator can not shock back to normal. So, let's work on getting everyone trained in CPR also. LInda

        Comment


        • #19
          Anna -
          I hope the board has provided you with information and somethings to think about. I can not tell you if you are near or far from a specialist because I do not know where you live, this was one reason I suggested we speak to help find this out. Your medical records are your own and you should have a copy of your records in case it is needed.
          It sound like your fathers side of the family may have HCM, have your parents been screened? Do you have sibilings and have they been screened?

          I hope you find your answers whatever they may be and I wish you much happiness and good health in the future should we not hear back from you.

          Just a little side note...which is not meant for Anna alone... My 7 year old daughter often says "I cant"... when she attempts something and fails... This word is BANNED in my home... If she tries and fails then that is a good thing...she may say " I do not know how" " I can not do it right" or "I need to learn"..but CANT is not a word we live with...
          Why do I bring this up...with HCM we CAN do a great deal more then we can not and attitude is half the battle


          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


          • #20
            Lisa -

            I truly believe in the no "I can't" rule. It applies to so much more in our lives that it actually needs to be one of the many "rules" that we should all live by. When I was teaching I made a huge sign and it hung in my classroom that looked a lot like the no smoking sign (red circle with the red line through it, crossing the cigarrette) except that it had "I CAN'T" in the middle instead of a cigarrette. Trying to teach my 6 and 4-year-old daughters this was not been easy at the beginning, but now they at least try when they want or need to do something. It's definitely worth working at no matter the situation. Thanks for sharing that concept.

            SheliRenee
            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

            Comment


            • #21
              Anna,

              Don't be silly, you are welcome to post in my thread! My original question has pretty much been answered anyway, and if anyone wants to jump back into it, they will. Besides, somebody's gotta stop me from talking my fool head off from time to time. Not that it's worked

              However, as long as i'm here, i should say that it really is in your best interest to keep a folder with copies of all your test results, etc. This has proven invaluable for me, especially since i travel so much for work. Anytime i see a new doctor, i've already got everything with me that he might want to see. I started doing this a couple years ago when i got kidney cancer. Every six months now i go for cancer screening tests, and if i'm in a strange town, any doctor can look at my health history on the spot and order the tests for me.

              I also make sure to get copies of all notes the doctor made during our visit together. They will give them to you, just ask. I've found so much valuable information in these notes that the doctor had either forgotten to discuss with me, or assumed i already knew. It's also kind of fun to read the doctor's personal comments. One of my doctor's had written 'the patient had many more questions than i was prepared to answer and i spent more time with him than i had alloted'. LOL.

              I've even gone as far as to maintain a health 'diary' on my laptop. Anytime i see a doctor, start a new medication, have my dosage adjusted, or have a test done, i jot down a note or two about the visit in my diary. Sometimes i just note if i was feeling particularly bad on a certain day, or if the new medication seems to be working well.

              It might seem like overkill, but i don't have a spouse, or children, or significant other to rely on helping me through all this. I have only myself to depend on and i need to keep things straight in my head

              Take care of yourself,

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

              Comment


              • #22
                Jim.. you made me laugh ... You do ask more questions then the average bear... but I think your point is very good...someone needs to track the information and if you are on your own I do not think it is overkill..I think it is rather smart...just do not drive yourself nuts doing it.

                And on a general note to all:

                Also back to the question issue, for those who need to ask more questions then the doctor may have set time for you may want to discuss this at the appointment...such as "I really have more questions and I think it will take about XX more minutes, do you have time now or can we set up a follow up?"
                We should remember that they are busy (just as we are) and have you ever sat in the waiting room for hours waiting for a doc..and gotten upset for the long wait...(I know I have)..Allow the doc to set up a follow up appointment to answer all of your questions if there is not ample time in the visit. With some HCM specialist...they may be able to handle your questions via email or phone should you get home and have more questions. Just a thought...

                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


                • #23
                  my version

                  I have a two page medical summary that is short history of the major health events I've had and the list of my current medications, my allergies, my meds I can't tolerate and my family synopsis (their diagnosis and stats --alive or dead). I update this as needed and bring it along with copies of my echos and a few choice ECGs to any appts with new doctors (I skip the echos and ECGs as appropriate to the doctor --my ear doctor doesn't need to see them!!)

                  If I have a lot of questions that are not critical or inherent to a particular visit, I'll write the doctor a letter with all the questions and let them get back to me when they can. Nowadays, I'll write the letter and fax it or e-mail it.

                  If you live alone and don't have a medic alert, you should post your meds and doses on the fridge in case you become incapcitated and EMTs or someone needs to know.

                  S

                  Comment


                  • #24
                    To everybody who posted today, thank you for all the valuable information you all shared.

                    As a person with many chronic illnesses I have found it absolutely to be invaluable to have copies of my files (ok, so they're encyclopedia size, I do summarize which was mentioned)for all the reasons discussed.

                    If I had done this with just my asthma, allergies and heart murmur (which wasn't just a murmur)I would have found lab notes that told me that I tested positive for Hep C. My PCP found the notes a yr later when we were looking back for something else.

                    I do indeed whenever possible make my Dr's appt. and let them know if I'm coming in for more than one thing so they can schedule in the time. I also have written down the questions I might have and try to type them out and give them a copy. (My appts. are usually for more than one thing)My current PCP (Primary Care Physician) is awesome and she appreciates these notes and takes her copy and if she has to get back to me on something she tells me "if I haven't gotten back to you by such and such a time, you call me".

                    Faxes and emails are wonderful too. My current cardiologist loves my orignization too and my being interested in research and welcomes most anything I find on the internet that he doesn't already know. Well that's my two cents! Thanks again.

                    Diana

                    Comment


                    • #25
                      Family Research

                      Hi All,

                      Just to wrap up the family research portion of this thread...

                      My specialist has reviewed my father's death certificate, and he does NOT believe that my father suffered a sudden death episode due to HCM, in fact he does NOT think that my dad had HCM at all. I was surprised to hear this and of course it raises the question 'how in the heck did i get this thing if nobody else in my family has it?'. Apparently i am one of those people who spontaneously mutated (ya just gotta love the sound of that).

                      It's good news for my siblings as well. Since i did not inherit the HCM, they are at a lower risk of having it. Once again, i am the black sheep of the family. LOL. There's not a single occurence of cancer anywhere in the family tree, and i got it, nor is there any HCM and i got that as well. I'm beginning to think i was switched at birth, or perhaps i should see how the old milkman is faring health-wise

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

                      Comment


                      • #26
                        Good morning Jim -

                        Just consider yourself very special. My son was born with HCM and developed an arrhythmia at five months. As far as we can find so far, he is the only one who has this also. I guess he's my little spontaneous mutation. Enjoy your day.

                        SheliRenee
                        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

                        Comment


                        • #27
                          Guys, I do think that some people are spontaneous mutaters. You have to remember, though, that rarely a person can carry the gene and not express it. So even though they don't show on echo as having HCM, they can carry the mutated gene that causes it. Does that make everything clear as mud?

                          Reenie
                          Reenie

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

                          Comment


                          • #28
                            Here is a point of view...Every living being on this planet is a spontaneous mutatant... Each human has between 6-50 mutations (nobody is perfect )
                            When it comes to HCM we can clearly track the mutation and the progress of the mutation through the generations.
                            To those of you who appear to be spontaneous mutation in terms of HCM...it is very possible that you were not the 1st with the mutation but the 1st to express it.
                            Off to the meeting!

                            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


                            • #29
                              Re: Family Research

                              Reviving an old thread with new info...

                              Finally got some medical records from the hospital where dad passed away. They are cryptic and few and this apparently is all they will ever be able to get me, but there is an echo report, hand-written quite badly (even for a doctor) along with some notes from his doctors and i picked out some phrases here and there that caught my eye...

                              probable hypertrophy of the left ventricle
                              left ventricle markedly dilated
                              ventricular tachycardia
                              probable arrythmia that caused arrest
                              right heart unremarkable

                              Now there was a whole lot of stuff going on with dad when he died, not the least of which was pneumonia and coronary artery disease, but it sure sounds to me like he had a case of undiagnosed HCM and maybe i'm not a spontaneous mutation after all.

                              Any thoughts?

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

                              Comment


                              • #30
                                Re: Family Research

                                Jim, sounds that way to me too. We recently found the "genetic link" to my husband's HCM too. It's his grandma, who by the way is now 90 years old. But the doctors still haven't told her that she has HCM. I'm trying to let the rest of the family know about it, but it's hard. My mother in law says she told the family, but knowing her she said something like, "Roger has a heart condition, and we think he got it from Grandma. They say it runs in the family." That's probably all she said to anybody. I'm working now on trying to do a family newsletter or some other form of communication that I can send on. Oh, and mother in law supposedly didn't show the disease about 10 years ago, so she would be one of those rarity cases where you can carry the gene and not express it. Wow, it's all so overwhelming.....

                                Reenie
                                Reenie

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

                                Comment

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