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  • #31
    Re: Stress Test Questions

    Jim, You are very welcome and I am right there ,got your back so to speak. Linda gave a great explanation about the heart failure and how it reflects edema to various parts and in various degrees. I still never have a lot of fluid problems in my lower extremities but I had a lot in my head, arms and abdomen. The swollen abdomen comes from the liver becoming engorged during the back -up. The only way I found out in the 1st place about the CHF was that I would go to the ER . They would examine me sometimes do a chest x-ray and give me an inhalant treatment tell me I had pneumonia or bronchitis , give me antibiotics and send me home. I often had relapses but fortunately always gradually recovered. I would always be stuffy in the head but per my knowledge did not have a cold or symptoms . It was not until several years went by and I was finally professionally diagnosed( by a doctor instead of myself) as having HCM that I was then always asked by the ER doc ,(" Ms. Alexson, what do you believe you have?"). I would tell them I was in failure and needed to get rid of the fluid. I'd get a Lasix drip, start peeing, and then go home. It did not take long before I decided I did not need to be giving these people $50.00 everytime it happened. So I took care of it myself. When I finally saw a pulmonary specialist he said he never saw pneumonia but CHF. BC&BS put me on their roster as a CHF patient and checked in with me and educated me via the phone . They installed a hub line on my phone and I would have to check BP, P and weight daily. If I didn't they would call. I resisted initially playing with increase or decrease in Lasix on a daily basis but finally got on board and did it well keeping me out of scary places like ER's where they say, " we are a fish out of water with patients like you." It was scary learning that I had been in CHF acutely many times before it was ever acknowledged that I had a heart problem. When we look at pictures of me from just last summer it makes me cry as I cannot believe how swollen and puffy my head, face, arms and belly were. How poor my color was. It is very different now. I can really say I thought I was going to die. You know my family now tells me the same thing . For us the myectomy had to be done. So I know you will make the best decision for you but as Lisa poignantly says" I think we have a duck." We will all stand by you as you travel this rocky path. Hang in there . 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

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    • #32
      Re: Stress Test Questions

      Hi All,
      Thanks for your postings. I think it just woke me up. When I was in the hospital and supposedly had my lungs clear, I coughed hardly at all. However, a few days before my attack the cough had gotten worse and I was very SOB. Now I’m just fine, but the cough is kicking up again. (It never stopped completely since my cold in early February.)

      I now suspect my cough and CHF are closely related. I do have a problem with water retention in my legs and to a degree in my arms also – especially noticeable when I remove my stretch arm-band watch. Some days when I push in on my shin I leave a considerable depression, but it hadn’t been that bad of late. I guess I’ll have to pay closer attention in the future. I was advised to weigh myself every morning, and if I had gained a pound or more to increase my Lasix for the day. (A pint’s a pound the world around.)

      Thanks again to all of you for your postings. It is very much appreciated by me also.
      Burt

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      • #33
        Re: Stress Test Questions

        Jim, sounds like you have your hands full. You hang in there, we are all here for you. I believe you are right in attending to one issue at a time. With your stress test right around the corner hopefully you can get some answers and begin to plan a strategy to help you feel better long term, at least related to HCM. Some times you gotta do what you gotta do. Can you say quack quack? Get this under control. By the way, how is your blood pressure? Could that have anything to do with your vision problem or bulging blood vessels in your neck? Sometimes on days my BP is up I see stars and flashes for a while, even feel like I am looking in two different directions occaisionally. Do you get anything like that? Hang in there, good luck with the test. Make sure you let us know what the deal is when you get back to the board. Steve.

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        • #34
          Re: Stress Test Questions

          hi jim,

          just to let you know that i had a stress test done last summer with one of the top echo people (dr. pravin shah of hoag hospital in newport beach) who is also a hcm specialist. he also had me go off my beta blocker cold turkey 2 days before for the test--said he wanted to see how my heart responded on its own. however, keep in mind i was only on 50 mg of toprol (a dosage he said would not have any deleterious effects being stopped cold) and i am largely asymptomatic (touch wood). your case may differ given your completely different symptomology (is that a word?).

          it does strike me though that this is the kind of information that SHOULD be standard to some extent--either people who are sympomatic and have high gradients should NOT stop cold turkey (past a certain dosage threshold) and everyone should know this, or it should be clear that it is not a dangerous thing to do. perhaps a question for the docs at the next meeting in june (which again i can't make).

          as for the stress-test it was a supine bike--it may have been more exercise than i had ever done in my life! they did also spring amyl on me (not high on my favorite things to do list).

          hope all goes well--sometimes i think well-meaning people on the boards can do as much to make us nervous as to help us be calm in times of stress.

          regards,

          mongo

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          • #35
            Re: Stress Test Questions

            Jim,

            You will be in my thoughts and prayers today. I hope all goes well.

            Abby

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            • #36
              Re: Stress Test Questions

              Abby,

              Thank you! I appreciated reading your note very much

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

              Comment


              • #37
                Re: Stress Test Questions

                What an odd and unusual day... but it ended well i guess,

                Got to the hospital for my stress test okay. I didn't really get hit hard with the withdrawal symptoms from the atenolol until this morning, but i was in pretty sad shape when it happened. I almost passed out twice before the test even started. Got two hours into the process, had all the initial tests, they wired me up, got the IV going, injected the thallium, took the first set of scans, etc.... and when it came time for the actual treadmill part, the head of the stress lab wouldn't allow it. Stress test canceled.

                He said there was no way in **** he was going to put an HCM patient up on a treadmill unmedicated. I asked him to at least wait for my specialist to arrive and talk to him, but he said it wouldn't make any difference. I was pretty preturbed at this point. Two days without beta blocker, no food since last night, no water since early this morning, a day off school to drive to Pittsburgh, two hours of poking, injecting and wiring me up with electrodes... and then they discharged me

                So i'm on my way out of the hospital fuming, when i run into my specialist, who is also fuming. He makes a few calls and tells me to get back down to the stress lab, get rewired, have another IV put in, and the test will proceed as planned. Only thing is, i had just taken my atenolol when i was discharged, so it then became this wierd race to try and get me up on the treadmill before it kicked in. It was hilarious. We didn't make it though. The atenolol kicked in after about twenty minutes, and it was a whole hour before they had me prepped again and ready to go. So i ended up doing the test on the atenolol anyway, which kinda irks me because i went two days without it for nothing.

                My blood pressure dropped during the test, but he didn't think it was much to worry about. I started out at 140/90 and it dropped to 105/70 at the point i got faint and stopped the test. He said it really didn't drop enough to be a risk factor, especially since i'm over 40. The rest of the results i'll get tomorrow, but i wanted to check in with you and let ya know that the darn thing got done!

                Thanks everyone,

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

                Comment


                • #38
                  Re: Stress Test Questions

                  Wow, Jim,

                  That's is terrible! I am glad you are still alive to tell us about it! However, maybe it shows the degree to which no one knows what to do for us or with us.

                  Please rest today (well, tomorrow there) and let your body catch up!
                  Rhoda

                  Comment


                  • #39
                    Re: Stress Test Questions

                    man! you'd think the two docs would talk before you went in! it really boggles my mind the degree of disconnect there is in the medical profession.

                    Comment


                    • #40
                      Re: Stress Test Questions

                      Thanks all,

                      It's fine really. I didn't mean to make it sound like a huge traumatic drama or anything... i just thought you'd enjoy reading about it, since we have all had so many of these same experiences. It's more funny now than anything. Just another very odd day in the life of your very odd friend, Jim. LOL.

                      Rhoda, i plan on doing just that! Thanks for the note. And yes Mongo, one would think that the two docs would have talked beforehand. But what irked me most, was that all this guy had to do was wait for my specialist to arrive before they unwired me and sent me on my way. It would have saved a lot of time and irritation (and put food in my belly faster)

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

                      Comment


                      • #41
                        Re: Stress Test Questions

                        Jim

                        I have news for you my primary doctor didn't know i was having surgery until he recieved the refferral for the insurance company, so i called my cardio doc and said it was very important he keep my PCP doctor informed about me in case of an emergency, he would be the one called first, you had a typical HCM day huh, it's all a mystery isn't it

                        Shirley
                        Diagnosed 2003
                        Myectomy 2-23-2004
                        Husband: Ken
                        Son: John diagnosed 2004
                        Daughter: Janet (free of HCM)

                        Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

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                        • #42
                          Re: Stress Test Questions

                          Straaaaange things are happening – but isn’t it great you lived to tell the tale? Next I expect your doctor will want to do it again – unmediated – and the hospital will have another fit. Some days are just like that.

                          I picture a man lying under a tree with a bird on a branch over him. The caption reads, “Go ahead – everybody else does.” Thank G-d you have a sense of humor.
                          Burt

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                          • #43
                            Re: Stress Test Questions

                            Hi Jim, Glad that day is over for you. Somehow I suspect that given your gradient and all your symptoms, that the results will impart mostly the same outcome medicated or not . When you are up there in those ranges of obstruction I from my experience believe that that good ole beta blocker is just keeping your heart relaxed just enough to keep you on your feet and able to function minimally. My thoughts purely from already having taken that trip to "Disney World " myself, ( pun intended). Rest well Jim . 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


                            • #44
                              Re: Stress Test Questions

                              Jim,
                              I think it is time we had a chat - I am not sure what your phone # is now - I think the one I have goes back a few moves.
                              Give me a call please.

                              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


                              • #45
                                Re: Stress Test Questions

                                Jim, glad you made it through the stress test all right. I don't know the stats, but I would think that your blood pressure dropping is NOT a good thing, regardless of your age. Take care of yourself.

                                Reenie
                                Reenie

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

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