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  • Salt

    [Salt]

    Author: Bryan Lombardo (---.bos.east.verizon.net)

    Date: 08-10-02 22:04

    I read some posts where people have said that they are staying away from salts. One cardiologist told me that salts arent bad for people with HCM because it retains fluid. Is this true?

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    [Re: Salt]

    Author: susan (---.240.OVG.vol.com)

    Date: 08-10-02 22:12

    yes salt makes you retain fluid. if your going to use any salt use the no salt stuff

    to me it taste the same but then i have beed using it for over 20 years. go lightly with it. stay away from salty foods, they make you swell up like a ballon, you might also want to stay away from foods that have msg in it, that will also make you retain alot of water. good luck bryan.

    susan

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    [Re: Salt]

    Author: Bryan Lombardo (---.bos.east.verizon.net)

    Date: 08-11-02 01:04

    But why the NO salt stuff this cardiologist told me to use salt, to retain fluid.

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    [Re: Salt]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 08-11-02 07:41

    Yes guys you have hit the line and it is a thin one at that...

    Here is the deal those of us with low blood pressure or average b/p even should use normal or even more than average salt to keep the b/p up ...

    those with high b/p or those in congestive heart failure should avoid salt.

    So as with many issues we are all a bit different...

    I need alot of salt..while my dad needs to avoid it...

    just anouther day in the life of an HCM family!

    Lisa

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    [Re: Salt]

    Author: Sarah B--Board Moderator (---.client.attbi.com)

    Date: 08-11-02 12:30

    Dear Bryan

    This is, as Lisa pointed out, an area where hard and fast rules just don't work. HCM is not like congestive heart failure where the rules are the rules and everyone needs to abide by them.

    Many medications for HCM reduce your blood pressure and most HCM patients have normal blood pressure, so for those people, a low salt diet is not needed and could even lower the blood pressure more if too strict. However, if your heart is in CHF, your body is retaining fluid already and your bp is probably high already, so more salt would be very bad. Some people with HCM develop CHF, too. so then they have to go by the CHF rules.

    Sarah

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    [Re: Salt]

    Author: Linda (---.wmnsmd.adelphia.net)

    Date: 08-11-02 14:10

    My son was diagnosed with HCM at age 7 and is now 19. He has to "salt-load" on occaision to keep his blood pressure up with the medicines he needs for his heart. Most of the time, his diet is normal, salt shaker is never on the table unless we have guests. But only immediately after surgery did we ever restrict his salt. Everyone is different and needs to recognize their own needs. If there are no kidney function concerns, and you've not been told otherwise, increased fluids are important in HCM. Linda

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    [Re: Salt]

    Author: Kimberly (64.240.52.---)

    Date: 08-11-02 16:00

    I was told that HCM is congestive heart failure. Comments?

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    [Re: Salt]

    Author: Sarah B--Board Moderator (---.client.attbi.com)

    Date: 08-11-02 16:15

    Dear Kimberley,

    HCM IS NOT CHF. Never was, never will be. However, some people with HCM get CHF either b/c the HCM "burns out" or b/c they have other heart problems.

    Please read the rest of this web site for the whole story on what HCM is.

    THis is what CHF is (from medline.com):

    Heart failure, also called "congestive heart failure," is a disorder where the heart loses its ability to pump blood efficiently. The result is that the body doesn't get as much oxygen and nutrients as it needs, leading to problems like fatigue and shortness of breath. Heart failure is almost always a chronic, long-term condition that is managed with medications and lifestyle changes. (Although it can sometimes develop suddenly.) The most common causes for heart failure are hypertension and coronary artery disease.

    The term "heart failure" should not be confused with cardiac arrest, which is when the heart actually stops beating.

    Whoever told you that HCM is CHF is incorrect.

    Sarah

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    [Re: Salt]

    Author: Amelia Haynes (---.proxy.aol.com)

    Date: 08-11-02 17:37

    How interesting that at the very time I am searching, searching for a miracle to help me control fluid and sodium intake, I find this topic discussion. I don't have the answer and it seems that no one else does either. Even the lowest intake of sodium causes swelling for me and the cardiologist gives me more direction on how to control CHF which is always, "take more diuretic." When I increase the diuretic my skin becomes flabby and I get this strange sensation - could it be pain - in my chest. Activity then causes the same weakness and SOB that has been evident with the noticibly puffiness and weight gain of fluid accumulation. The "spare tire" around my chest and my belly size increases and and I huff and puff with even slow walking. So the cycle is began all over again. They tell me "it is a fine line" and I have found this to be, oh so true. At the early HCM meetings knowledgeable people advised that with HCM you do not take diuretics UNLESS there is a 2-3 lb weight gain and I do not question this advice; however, as you take the diuretic, fluid comes off, AND begans to accumulate all over again causing a need for the daily diuretic. I found the reference to the need for sodium to help control low blood pressure enlightening and maybe this is what is happening to me; the diuretic removes the fluid and low blood pressure occurs but there again THAT FINE LINE. I had mitral valve replacement last October and was told that I should not see a great improvement and I did for 8 months and am so disappointed that this has again become a problem.

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    [Re: Salt]

    Author: Reenie Smith (---.snbrca.adelphia.net)

    Date: 08-11-02 18:14

    Kimberly,

    I agree with Sarah that HCM and CHF are certainly not the same thing. I don't know your history, but if you have both, they are not the same condition and each has it's own method of treatment. The problem I'm coming up with is that when I initially went to make my husband's doctor appt. they wanted to know his diagnosis. When I said HCM, they automatically wanted me to see the CHF doctor. When I explained that they weren't the same thing, they said, "but you said 'cardiomyopathy' and that's who sees cardiomyopathy patients." I fought with them until they realized that, in fact, he did need to see a different doctor. Sometimes they don't get it that there is more than one type of cardiomyopathy!! It was very frustrating, to say the least. But now we're seeing someone besides the CHF doctor. Pray we eventually get to the right guy. Good luck.

    Reenie

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    [Re: Salt]

    Author: Amelia Haynes (---.proxy.aol.com)

    Date: 08-11-02 18:15

    Last sentence of my posting should have been "I should NOW see a great improvement.........My editing was not so good!

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    [Re: Salt]

    Author: susan (---.175-79.vldsgacbds.dial.optilinkcomm.net)

    Date: 08-11-02 20:23

    ok, here is a question, i have really low blood pressure, i use the no salt and i still swell up. if i use regular salt it makes me feel horrible. i don't have CHF. i do have ademia? spelling could be wrong that why the question mark. my doctors went so far as to stop my monthly cycle because i retain so much water. so i guess this is just one of those things that proves we are all different. man what an ornery desease. the more i learn the more confused i get. this is depressing. ok i am snapping out of it now . everyone have a great day.

    susan

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    [Re: Salt]

    Author: Sarah B--Board Moderator (---.client.attbi.com)

    Date: 08-11-02 21:08

    Dear Susan

    If you mean "edema" --edema is the medical term for swelling, which you clearly have, but it is not its own disease, it is just a symptom of something else. There is anemia, which is low red blood cell count, but I don't think that is what you are talking about.

    Have you had any metabolic tests run to see if it is something else causing the water retention?

    S

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    [Re: Salt]

    Author: Mary (---.wi.rr.com)

    Date: 08-12-02 10:49

    well, the whole salt question...my cardio says use as much salt as I want due to low blood pressure. At the same time I have a lot of edema in my feet, legs and abdomen. Taking a diuretic makes me extremely dizzy, so I only use it when the swelling is too outrageously bad--like I can't get my feet into my shoes. I have also been told that I'm in heart failure, but that heart failure in HCM patients is totally different from CHF. My cardio explained that in CHF the heart is weak, soft and flabby, but that in HCM the heart is stiffened--more rigid. Does this sound familiar to anyone else?

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    [Re: Salt]

    Author: Bryan Lombardo (---.bos.east.verizon.net)

    Date: 08-12-02 13:25

    This is one weird disease. I has also read that hydrating yourself is good, but over hyedrating is NOT good, it could cause sudden heart failure. So basiclly this disease seems like it is a double edged sword. The more you learn the more confusing it gets

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    [Re: Salt]

    Author: Sarah B--Board Moderator (---.client.attbi.com)

    Date: 08-12-02 13:53

    Dear Mary

    Yes, the problem with HCM is that the heart walls get so thick that the contractions are too hard and too small to be effective. However, "end stage" HCM means that the walls have gotten thin all over and this is when you get CHF --as I understand it.

    Lisa knows this better than I do. I think I'm explaining it mostly right.

    Bryan: 8 glasses of water a day is fine. What most people don't realize is that most glasses are 12-16 oz and that 8 oz is equal to 1 cup or 1 small milk carton or 1 carton of yogurt (in size) so if you have 4 typically sized glasses a day, you are in the zone.

    S

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    [Re: Salt]

    Author: susan (---.179-106.vldsgacbds.dial.optilinkcomm.net)

    Date: 08-12-02 20:33

    hey sarah.

    no i haven't had any testing but you can be sure i will very soon. thanks alot, and its edema, i knew i spelled that word wrong. you know i was diagnosed almost 20 years ago, and do alot of research, but i think god for this site every day because i am learning more new stuff, it is confusing and is depressing. but i can get over it when i learn of things that will help me.

    thank you

    susan

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    [Re: Salt]

    Author: Sarah B--Board Moderator (---.client.attbi.com)

    Date: 08-13-02 00:40

    S

    You are very welcome. I know how you feel.

    S

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Salt]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 08-14-02 10:20

    WOW...

    That a wonderful conversation here!

    OK here are a few of my thought...some personal some strictly HCM...

    ! Ameilia..I MISS YOU! How have you been, so many people have been asking about you! I send LOT OF LOVE your way and a BIG hug!!! Have you talked to Dr. Lever about how you are feeling...if not get on the phone!

    Bryan - Thanks for the great question! I have never heard of someone drinking too much water. The only thing here is if you are retaining fluid you will want to make sure you are passing the fluid. (you should pee as much as you drink) ((thats a techincal term of course ha ha))

    Sarah - Nice job on the info here.

    Mary - You should talk to your doctor. It sounds like you are directly on the "LINE" and you must be very careful. One item that was not mentioned was potassium levels - use of diretics can lower potassium and this can be very dangerous. Watch your fluid levels and make sure you talk to your doctor about this. You may also want to take a potassium supliment (or ask your doc for one).

    And a general note:

    HCM IS NOT CHF! yet those with HCM can develop CHF and not only in end stage those with plain old HCM can have this happen too.

    great questions here!!! nice job!

    Lisa

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Salt]

    Author: Amelia Haynes (---.proxy.aol.com)

    Date: 08-14-02 12:03

    As always, I say "Thank You, Lisa." I have placed a call to Dr. Lever and have given all the info to Karen. He called Monday night but I was away from the telephone for a short time; not expecting him to call at 7:00 PM. He has rounds this week so it may be hard for him to respond immediately. Also, I had a personal email from Linda Price with some very good info and advice about cardiac rehab. Also, I just read her article in the Winter-Spring "Heart Link." I am dropping the program and will set up my own with things that do not include an Arm Crank.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Salt]

    Author: Matt (---.disney.com)

    Date: 08-14-02 16:08

    Just want to give a warning regarding what happened to me recently... I am one of the lucky ones in end-stage HCM. Because of this I am also in chronic CHF. So I am constantly taking diuretics to control my edema as best possible. Because of this I was also taking potassium suppliments.

    Last month my potassium level went too high (toxic) which contributed to my heart stopping! Fortunately I was at work and my co-workers called 911 and administered CPR. So if you're taking supplements, I would recommend getting your level checked every month or so.

    P.S. Lisa, Take care of yourself. I hope you're feeling better soon.

    Matt

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    [Re: Salt]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 08-14-02 17:24

    Hi Matt,

    Thanks for the nice note and THANK you for the posting on too much potassium!

    This disease is so strange, my sister went into cardiac arrest and they claim part was due to her low potassium...

    I wish we had an easier condition here!

    Lisa

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Salt]

    Author: Sarah B--Board Moderator (---.client.attbi.com)

    Date: 08-15-02 13:32

    When I had my TIA (transitory ischmic attack) I was in the hospital for a week and they kept dumping potassium into me, then stopping it and then starting it again. I was on an IV the whole time, so I think they were just overcorrecting, under correcting and overcorrecting again and i think I'm lucky to still be alive (and yes, it was after this stay that I got my butt to the Mayo Clinic and am ok now).

    Now I try to drink electrolyte water (no sugar --Glaceau Smart water) once a week or more (it is pricey for the unemployed like me).

    S
    NOTE: This is a post from the previous forum message board.

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