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mtlieb Find out more about mtlieb
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  • What is this please?

    Hi All,

    My feet are swollen big time... as in the kind of swollen where when I'm walking barefoot, my toes don't even touch the floor (by a lot). Earlier today I noticed them getting kind of tingly, like they were falling asleep, but didn't pay much attention. Now they just plain hurt and are very swollen, and this is something totally new to me.

    What the heck is THIS now? I quit taking the Cardizem almost two weeks ago and I'm back to just 100 mg of Atenolol. Last week during my cardio visit he told me i'm carrying a LOT of water. My face right now is as round as a friggin bowling ball, and I have all this new pain in my abdomen. Now tonight the feet thing. Is this because of my gradient increasing? The Cardizem? Is it related to the chest pain, neck pain, headaches, trouble breathing, not being able to sleep? All of the above?

    Of course this happens on a friday night so I can't see or talk to my cardio for at least two days

    Thanks in advance for any advice you might give.

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

  • #2
    Re: What is this please?

    Jim , Sorry Buddy this sounds very troubling. If he thought it was fluid why did he not start you on a diuretic? Your desciption does not produce good feelings in me. What was your weight recently before the swelling? How much do you think you are up?Swelling of the lower extremities usually indicates the added dismal picture of right sided heart failure to go along with the left sided that goes with HCM. Remember it is a backing up system as in looking at the anatomy of the circulation; failing of the pumping chambers . Your abdomem is probably uncomfortabe because the liver is engorged with the excess fluid overload. You should watch your girth measurements. Some of the excess fluid in the feet is compounded due to the valves in the vessels of your legs now not functioning efficiemtly due to the fluid overload. Jim 500cc's of fluid ;1/2 liter is = to 1 lb. For it to be showing you have far more then that! I do not mean to bash your doc but, WHAT WAS HE THINKING!!!! Jim I am going to stop scarring you now because you need to go get checked out ASAP!!! No one can predict how much abuse a tired sick heart will take we are all different. IT sounds like you may well be in acute CHF. Yes all the other things you are describing ar eas a result or contributed to by the fluid overload. GO NOW JIM ! Post when you get back I would rather have encouraged you to go on a wild goose chase then take a chance with your well being. 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


    • #3
      Re: What is this please?

      Oh one more thing don't even try to joke this away , it could be seriious!When you go to the ER and they ask you what you think is wrong tell them you think you might be in failure and need IV diuretic therapy. IF they for some goofy reason like I had happen offer to send you home with pills. Take the IV instead and get the flood gates opened a bit there. By the sounds of it you are going to need a big urinal, I know I know, a little humor to lighten the moment. This way if they start giving you say up past 60mgs of Lasix you can also say do you think I need to chase that coctail with a little potassium? Good luck> 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


      • #4
        Re: What is this please?

        This is kinda of like MONOPOLY...
        Go directly to ER...do not pass GO do not collect $200.00

        See Jim - I fit in a little joke for you

        This is sounding like you have WAY too much fluid on you. If you can not see your doc in the office head to the ER.

        Sweetheart...whats the deal with the myectomy?? It appears to be time - PLEASE TAKE CARE OF YOURSELF!

        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


        • #5
          Re: What is this please?

          Hi Jim-bo,
          Some of us here fight the good fight with water and CHF. Mt feet and ankles swell up big time, and my legs to above the knees get to feel very tight and painful – like water balloons. I also notice it in my arms and stomach. (A couple of times I’ve had to squeeze the water out of my feet to get my loosest shoes on.)

          If you’ve been reading my posts you know that I usually take 40 mg of Lasix a day, but I’ve been up to 80, 120, and 160 mg. (Funny thing, at 160 mg I seem to have almost no benefit, while 40 seems to work as well as 80mg. I guess that’s just me.) The last time I saw my cardiologist he added 5 mg of Metolazone every third day to the 40 mg of Lasix. He said Metolazone is a mild diuretic, but in conjunction with the Lasix, it has an enhanced effect. (The jury is still out on that one.) I hope by now you have heeded Pam’s advice and have gotten yourself pumped out. This is nothing to fool around with.

          Lisa – a joke? From you? Who takes these problems so seriously? Have I completely corrupted you too? - - Lisa made a funny – Lisa made a funny! - Love you anyway.
          Burt

          Comment


          • #6
            Re: What is this please?

            Hi All,

            Thanks for the responses. I have not been to the hospital yet, but will be heading up there this afternoon. I'm not moving very fast since I didn't finally fall asleep until about 7:00 am this morning and quite frankly, Im just plain exhausted.

            I paged my local cardio a little while ago and the man returned my call within minutes. He's turned out to be a great guy and I have tremendous respect for him. When I saw him last week I had only been off the cardizem for a few days, and we both felt it was wise to see if the weight came off by itself before adding any additional meds to my already screwed-up body. It's my own fault I didn't monitor myself more closely after that, and I've now put on 14 more pounds just since seeing him last week, on top of what I already had.

            He wants me to go to the ER and get some tests done which he is ordering for me even as we speak. He was pretty adamant about my NOT letting them treat me or give me meds of ANY kind until he has had a chance to review the test results. If they try to force any on me, i'm supposed to just leave. Like most of us, he does NOT trust the ER docs to have the necessary expertise with HCM, so he wants to manage my care directly. And on a saturday no less!

            I feel as though i'm in very good hands here. I'll let you know what happens.

            Thanks,

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

            Comment


            • #7
              Re: What is this please?

              Jim,
              boy....what else, huh?

              It sounds like you are in very good hands with this new cardiologist...please let us know how you make out....good luck...hang in there, buddy!
              \"It is not length of life, but depth of life.\"

              Ralph Waldo Emerson

              Comment


              • #8
                Re: What is this please?

                Let us know how you make out at the hospital.

                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


                • #9
                  Re: What is this please?

                  By Jim-iny,
                  The afternoon is past, and you either were admitted with your new cardio’s approval, or you came home exhausted and fell asleep. When you get back to the board, let us know what you’re up to, and what the tests showed.

                  14 pounds over where you were before – that’s upwards of four gallons – and you wondered why your feet were swollen? Buddy boy, if we’re going to remain friends you’re just going to have to take better care of yourself.
                  Burt

                  Comment


                  • #10
                    Re: What is this please?

                    Oops, I meant two gallons – but that’s still a load of water.
                    1 pound = about a pint / 2 pints = a quart / 4 quarts = a gallon ~ 15 to 16 pounds = 2 gallons. - It’s been a long day. I forgot to take my pills today, and almost crashed and burned. I’m better now.
                    Burt

                    Comment


                    • #11
                      Re: What is this please?

                      UPDATE:
                      I just spoke to Jim - who is in the hospital in CHF. He is doing well and his doctor is taking care of the situation. His # in the hospital room is 724-357-7352 - he wouldnt mind a call or two.

                      I must let you all know that last night Jim was at a party in the hospital!! In his own words... " I only went down the hall, had some cake and wishes her a happy birthday" At which point I said "yeh...that is a PARTY -good to know your getting rest in the HOSPITAL! "

                      Our thoughts are with Jim as he recovers from his CHF!

                      Lots of love,
                      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: What is this please?

                        thanks, Lisa...that poor guy has been through so much. I just tried calling and get a real fast beep signal??
                        \"It is not length of life, but depth of life.\"

                        Ralph Waldo Emerson

                        Comment


                        • #13
                          Re: What is this please?

                          I just called Jim...sounds like such a nice guy...he was glad that I called. He knew which "Cynthia" it was...he said he could tell by my Massachusetts accent . He sounds in pretty good spirits
                          \"It is not length of life, but depth of life.\"

                          Ralph Waldo Emerson

                          Comment


                          • #14
                            Re: What is this please?

                            Yeah,
                            I just spoke to him too, and he sounded pretty upbeat to me. He’s on bed rest now. His doc is a bit skittish about giving him a diuretic because of his gradient, so he’s still pretty loaded with water. The doc is hoping as the CHF is brought under control the water problem will go away also. Jim plans on talking with him about it again tomorrow morning.

                            I gave him Mary’s cell phone number. Hopefully they can keep each other’s spirits up.
                            Burt

                            Comment


                            • #15
                              Re: What is this please?

                              Hi All,

                              The folks here at the hospital are being very cool and letting me use one of the terminals at the nursing station to go online. Thanks so much for all the phone calls and well-wishes. It really means a lot to me. I got to speak with Mary tonight and we had a nice chat. I'm not sure how long i'll be in here yet... but i'll try to keep you all posted.

                              Thanks again,

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

                              Comment

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