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mtlieb Find out more about mtlieb
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  • Sarah
    replied
    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

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  • Lisa Salberg
    replied
    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

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  • mtlieb
    replied
    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

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  • SheliRenee
    replied
    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

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  • Lisa Salberg
    replied
    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

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  • Linda
    replied
    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

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  • Sarah
    replied
    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

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  • annamc
    replied
    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!

    Leave a comment:


  • Toogoofy317
    replied
    Anna,

    Even if you don't have much information Lisa is still an awesome person to talk to. When I first touched base with her I had no family history per say. She helped me to ask the questions I needed to ask. It is also good to let all of your family know you have this so they can get tested! Once, you start talking to them stories typically start. I thought I was the only one with it but one of my family members I barely know said that one of my cousins died at 29 of a heart attack. So yes talking to someone and getting the information you need is crucial.

    Your medical records are yours. No medical facility can keep you from viewing your medical records. It is in the patient's rights. Anytime I have a hospital admit or something that is relative to my heart I ask for a copy. I have quite a few doctors and faxes sometimes doesn't get to them. So it is a good idea to have a hard copy on hand.

    As far as seeing a specialist is concerned this is one part where I would be running and not walking to see. I live in Florida and ended up having to fly to Boston for treatment. I did not have the money to go but I begged and borrowed from my friends. I even ended staying with a friends parents when I was up there because I was so hard up on cash. If you don't have insurance most offices are pretty good with creating a payment plan. Some hospitals even offer charity help to those in need. I qualified at my local hosptal for the help and it has taken a lot of stress off of me.

    I hope this helps and don't give in to medicore care. You have to be an informed patient

    Mary S.

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  • annamc
    replied
    Everyone seems to be wanting me to call Lisa. Granted I am sure she's helped many and that is applauded. It's just that I don't have any answers I can give Lisa. It's not that I'm stupid, its just that I've never done any research and I am unable to pinpoint any family members that died of HCM. I'm not down on research, I think its great for someone to look into what is best for them! SARAH - I really wasn't trying to be morbid. Glad to know something can preved SD!

    Does everyone have their own medical folder? I was told that I should keep a medical folder of my own? I thought that doctors records were their records and I couldn't touch them. Is this true? If I had that information - LISA we could talk, but unfortunately I do not. So, I'm not trying to ignore you, I'm just without information.

    Oh and about an HCM specialist, if there is not one in my area, I will not be able to go to one. I am not able to do a stress test due to the risk factors involved.

    One more thing, Ischemic Cardiomyopathy (wasn't that just another term for HCM?)

    Leave a comment:


  • Lisa Salberg
    replied
    Please re-read Lindas post, she is talking about OTHER rythms that can not be shocked..unlike "V-Fib" which can be shocked.
    Lisa

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  • SheliRenee
    replied
    Okay - Cool - but if I read correctly (and it's a bit late when you only get five hours of sleep a night), Linda said that shocking the heart won't help V fib and you said it would.... Did I get it wrong?

    Leave a comment:


  • Sarah
    replied
    from americanheart.org...

    Ventricular Fibrillation

    What is ventricular fibrillation?

    The heart beats when electrical signals move through it. Ventricular fibrillation (ven-TRIK'u-ler fib"rih-LA'shun) ("V fib") is a condition in which the heart's electrical activity becomes disordered. When this happens, the heart's lower (pumping) chambers contract in a rapid, unsynchronized way. (The ventricles "flutter" rather than beat.) The heart pumps little or no blood.

    AHA Scientific Position

    Ventricular fibrillation is very serious. Collapse and sudden cardiac death will follow in minutes unless medical help is provided immediately. If treated in time, V fib and ventricular tachycardia (ven-TRIK'u-ler tak"eh-KAR'de-ah) (extremely rapid heartbeat) can be converted into normal rhythm. This requires shocking the heart with a device called a defibrillator (de-FIB'rih-la-tor).

    Today one effective way to correct life-threatening rhythms is by using an electronic device called an implantable cardioverter-defibrillator. This device shocks the heart to normalize the heartbeat if the heart's own electrical signals become disordered.

    Leave a comment:


  • SheliRenee
    replied
    Originally posted by Linda
    If the offending rhythm is not a rhythm that can be shocked back to normal, such as ventricular fibrillation, a shock cannot restore a normal rhythm.

    Linda -

    What is ventricular fibrillation? I tried looking it up, however, everything kept coming back "not found."

    Thanks,

    SheliRenee

    Leave a comment:


  • mtlieb
    replied
    Everyone has been very helpful. Thanks much!

    Linda, i will check out the site shortly, and thanks for the link and informative post! Since my dad's cause of death was listed as ischemic cardiomyopathy, that means that he had a thickening of the heart muscle that prevented it from supplying oxygen to the body, right? Kinda sounds like HCM to me. Also, isn't ischemia something that is often tested in persons with HCM?

    I don't know where the coronary artery disease comes from. To my knowledge he didn't have anything like that and his death came very unexpectedly. Perhaps with nothing else to pin it on they just listed the 'works' on his death certificate.

    Sarah, good information, and i was wondering... my dad was adopted, so basically the HCM history stops there for me. If he did in fact suffer a sudden death, i think my doctors would likely treat it as if there were more than just him, since we just don't know. There's no written record of my dad's biological parents. From what i understand it was quite the scandal for it's day so everything was kept very hush hush

    However i do remember hearing that my grandmother once met the girl who gave birth to my dad, and described her as a very frail and sickly girl who died quite young. It wouldn't take much of a leap to imagine that she might have had HCM as well, but of course that is purely speculation. I'm just having fun with the research now

    Thanks everyone

    Jim

    Leave a comment:

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