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  • #16
    Re: Stress Test Questions

    Okay folks...

    Now i really AM beginning to get freaked out a little!

    I have calls put in to both my local cardio and my HCM specialist who is performing the stress test. Rest assured that i will not go through with it unless i am completely comfortable with it. I didn't come this far, only to be killed by a stress test

    I'm not so much worried about weaning myself off of the Atenolol... because that can be done before the test. And i'm not so much worried about how i'm going to feel without the beta-blockers... because i feel like crap right now anyway even with the Atenolol. What worries me is the impact that pushing my gradient through the roof is going to have on my heart. Even with 200+ mg of Atenolol per day, my gradient has been clocked at 144, at rest. What's it going to be without the beta-blocker, much less getting my butt up on a treadmill?

    Having an active imagination, i envision my gradient as a balloon filled with too much air, and suddenly popping. Does that happen with the heart? Or maybe the increased gradient pressure finally makes my mitral valve give out once and for all, and i get rushed into emergency surgery?

    I guess these are all questions that are best answered by my doctors, and i hope to hear from them soon, but i do appreciate and respect all of your input. You are the folks with HCM, and your opinion matters to me more than any doctor

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

    Comment


    • #17
      Re: Stress Test Questions

      Jim, one of the 1st things is while you are having such a test you are very well monitored and if I am correct a cardiologist is in the room at all times. They stop it at the 1st sign of trouble or at your say so as with increase SOB & or CP. When I had my initial dx . I was only on 150mgs. of Atenolol and resting gradient was at 140 and sometimes higher. Provoked gradient was 240 ++ . So be assured they will not allow you to pop your cork . I know this is nerve racking but you won't have to last long for them to see results. I lasted less then 7 minutes with CP at 7/10 and puffing like a locomotive. They are prepared and will give you O2 if you need it as well. I have had it both ways with and without atenolol . But only skipped it the one day. You know that with one dose missed you will feel symptoms increase because you feel sx's with 200mgs. Is he going to consider going up on the beta? I did much better for a while at the 300mgs. ;150mg bid. I felt better also . Do you have a lot of neck vein distention and feeling of congestion in your head? Well take it slow ,with everyones info you will be well prepared to ask the questions. It will be ok 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


      • #18
        Re: Stress Test Questions

        dear jim

        pam is right ---there is a nurse and usuallyy a doctor right next to you the whole time and YOU can stop at any time once the test starts.

        i was at the mayo and i lasted about 2 minutes ---i quit from the pain of having alcohol rubbed onto the patches they sanded for a good connection on my chest and the GIANT tube in my mouth (i'm a tiny person and this thing was built for guys like you, so it hurt!) looooong before i had any cardiac symptoms.

        the point of a stress test is to see how much you can do without getting out of whack --not to force you to the point of exhaustion.

        if you are ok with the no-medication thing, then you don't have anything to worry about. truly.

        s

        Comment


        • #19
          Re: Stress Test Questions

          Hi Jim,

          Way back in 1985 following my first Heart Cath my cardio gave me a stress test. There was both the doctor and his nurse in the room, but as soon as the test started the phone rang and the doctor turned his back and started talking on the phone. I was very quickly in trouble and looked at the nurse to stop the test, but she said the doctor had to do it.

          He was still on the phone when I went flying off the back of the treadmill and landed in a heap on the floor. They both could not lift me so I lay there huffing and puffing mightily. He yelled that I should have stepped on the sides of the machine – off the tread, and I was shocked that I hadn’t thought of it myself. I was also mad as h-ll, and too short of breath to make my feelings known. After about five minutes I had regained enough strength to get onto the examination table with both of them helping, and after another ten to fifteen minutes I had regained enough strength and breath to wobble out of his office – never to return.

          That was my last physical stress test. After that they were all of the chemical stress variety. My latest test was last December, and I have to say it was rather rugged. I had not reduced any of my meds, and would think long and hard, and have to hear very compelling reasons before I would complicate such a course of action.

          That was not meant to scare you so much as it was meant to make you think. We are of course different people and in all probability will have different reactions to stress – but please be sure you agree with the course of action decided on in your case.
          Burt

          Comment


          • #20
            Re: Stress Test Questions

            Jim,

            I'm pretty sure that Burton's experience is a rare exception. When I've had my stress test done, there was a nurse and doctor in the room and they we constantly watching me (and the monitoring gear). They actually told me to slow down a bit! The feedback from a stress test seems invaluable and the benefits greatly outweigh the risks.

            Comment


            • #21
              Re: Stress Test Questions

              I believe you can get comparable results from a chemical stress test under much more controlled circumstances. You are right however, my experience was the rare (I hope) exception to the rule. But then doctors are human too, and are not immune to being distracted.

              I do not say to not have the exercise stress test. I say be sure the test is in your best interests and has the possibility to produce results of value in determining what treatment plan is best in your case. Also, if you feel too stressed, you can step to the side of the tread and end it – if it becomes absolutely necessary – but then they don’t call it a stress test for nothing.
              Burt

              Comment


              • #22
                Re: Stress Test Questions

                Thanks for all the input.

                I've had a stress test before, so I'm familiar with the procedure. I know that there will be at least one doctor there at all times, in fact i believe my specialist himself will be there for much of it.

                My concern was in having to do the test unmedicated, after being off my beta blocker for two days, and possibly doing some unnecessary and permanent damage to the ol' ticker. This is the first time in over a year that anyone has even wanted me to attempt a stress test, much less without meds. When i was in Boston in fact, my stress test was canceled when they found my gradient to be so high at rest, and several doctors since then have told me they would never want to try one. I guess that more than anything has been giving me doubts about this.

                But at this point, i'm willing to do anything that may even remotely help with my treatment. In fact, i almost hope that something does happen during the test. I feel it coming down the road anyway... it might as well be in a hospital. I'm SOB with chest pain all the time now, so i'm not quite sure what 'signs' to watch out for on the treadmill that i don't already have. Just walk till i pass out?

                I'll be quitting my meds over a weekend, so getting in touch with my doctors may be difficult if i start to have problems, but the ER is less than a mile up the road. Again though, i'm not quite sure what warning signs to watch out for that would send me to the hospital. I already have all of them, and i haven't even stopped my meds yet. LOL.

                Anyway... forgive me for rambling again. It's been another night with no sleep and i'm probably not thinking too straight

                Thanks again,

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

                Comment


                • #23
                  Re: Stress Test Questions

                  I expect it’s not so much the symptoms with you as it is the degree. You sure sound like you can take care of yourself just fine. Please let us know how things go. A lot of us here are interested.
                  Burt

                  Comment


                  • #24
                    Re: Stress Test Questions

                    Sorry i didn't answer you before:

                    Originally posted by Pam Alexson
                    Is he going to consider going up on the beta? I did much better for a while at the 300mgs. ;150mg bid. I felt better also.
                    No plans to go up anymore on the Atenolol. In fact he wants to back me off of it a bit because he feels i'm overly beta-blocked and wants to add a calcium-channel blocker to the mix instead.

                    Originally posted by Pam Alexson
                    Do you have a lot of neck vein distention and feeling of congestion in your head?
                    Actually i do Pam... what does that mean?

                    Originally posted by Dorothy
                    ...hopefully you are doing it as a step-down procedure, not just stop taking them and wait the two days. Are you going to take one every-other day with Saturday being you last?
                    My doctors feel it is unnecessary to step-down just for the two days i won't be taking it. I'll take my 200mg a day until saturday morning, and then stop. I'll be able to take it again as soon as the test is over on monday, probably about 4:30 or so. Test starts at noon.

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

                    Comment


                    • #25
                      Re: Stress Test Questions

                      Hi Jim, With regards to the neck veins , I believe you commented in another post regarding pain and discomfort. These all seem to go together when there is a high gradient and simply higher pressures /obstruction Some of us feel this increase even with the obstruction removed as what appears to be associated with an increase of fluid . It waxes and wanes as the gradient does for you folks who still have the obstruction. In the case of post myectomy I believe for me it is less now as it probably is for many post surgical patients. When I am holding a little too much fluid it seems to advance up into the neck veins and head causing some increase nasal , facial congestion. For instance the weather changed again the other day went from very cold to 50's and I found my self retaining fluid and all those symptoms as well as my abdomen swelling. These things are all very uncomfortabe and signal for me I need to increase my lasix for the day and lay off the activity until I get rebalanced. As I have CHF although still very much improved problems do present when I am spent and the weight is up. I think far more of us have that particular CHF that is often found in HCMer's. The chemical changes and phenomenen occur very much for us as they do with the people with advanced heart failure but I found that I could control or manage some of my symptoms and induce a shift to the positive if I followed some basic rules. I learned a lot of this the hard way with a lot of sleepless nights and visits to the ER. I believe from all I have read and learned is that it is a very fragile balance and requires us to be vigilent about the balance so we can try to fight against the tendency for our Hcm hearts to have as Burt puts it these" HCM attacks." We can't prevent them all but some of us need to be extra vigilant. Does this make some sense? Unfortunately my friend it looks like you are now in the group of vigilantes. It is so strange in some ways and I still have trouble fathoming it ; how very fragile our hearts are and how things can change so very quickly from stable to unstable to stable again. For me it is like it must be about some fragile old lady ;not me. I also believe that because things change so quickly we tend to feel invincible at those times when things are going very well, then we push and end up back in the pot of soup. Yuh Think? Well anyway I know I rambled so sorry. 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


                      • #26
                        Re: Stress Test Questions

                        Pam,

                        Thank you very much for the excellent information. It's so nice to have a buddy or two travelling the same path. In a perfect world none of us would be on this road, but if we gotta travel it, at least it helps to know you're all right there with me

                        I have yet to actually be diagnosed with CHF. I've had congestion in my lungs, and god knows i have many many symptoms of CHF, but without the characteristic swelling in my ankles, nobody has been willing to come right out and say i'm in CHF. I've done a bit of research about this (Lisa, you know that's what i do best), and from what i have gleaned, especially in left-sided heart failure, the swelling is not always present. Is this true? My face right now looks like the Sta-Puft marshmallow man, and i'm beginning to wonder about this. Can i be in CHF and/or retaining water without it necessarily showing up in my ankles?

                        Thanks,

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

                        Comment


                        • #27
                          Re: Stress Test Questions

                          Jim...
                          Re the CHF - I am not sure, talk to your doctor.

                          RE - what next...follow me here - if it quacks like a duck, and walks like a duck and if it swims like a duck.... ITS A DUCK...

                          Translated in to HCMees...if the symptoms are bad, if you are obstructed, if the meds do not work to help your symptoms...its SEPTAL REDUCTION TIME...

                          Jim...looks like we have a DUCK

                          Big hug!
                          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


                          • #28
                            Re: Stress Test Questions

                            Jim, The left side of the heart receives blood freshly oxygenated from the lungs, and the first place the fluid backup will be with left-sided failure is back into the lungs. This causes the typical cough, breathlessness, etc. The right side receives blood from the rest of the body and sends it to the lungs to be oxygenated, so you will notice the backup with more ankle swelling, etc with right-sided failure. It's rarely so clear-cut and not unusual for both right and left sides to have some degree of involvement with some symptoms of both. As for the facial swelling, you could very easily have more congestion in the upper body vessels, have your doc explain what he thinks it is. Are the sinus probs all gone? Hope this helps, Linda

                            Comment


                            • #29
                              Re: Stress Test Questions

                              Linda,

                              I really wish the sinus problems were all gone, but unfortunately some things were screwed up during the surgery and i may or may not now have some permanent scarring as a result. There's also the vision problems, and a likelihood of MS with my family history. If i didn't know better, i'd think i've finally suffered that nervous breakdown i was always worried about. LOL. What does a nervous breakdown feel like anyway?

                              For right now, i've put everything else on hold and i am just concentrating on the heart problems. I find that i can only deal with one problem at a time. If i have MS, it's going to have to get in line behind the HCM. I never thought i'd say it, but i actually miss the days (three years ago) when the only thing i had to worry about was kidney cancer. Life's a real kick in the pants, aint it? Who'd have ever thought that kidney cancer was going to be the least of my worries?

                              Do you ever feel like running out into the street and screaming your bloody head off? It's such a cliche i know, and i've heard it a thousand times before, but i actually feel like i could go out into the street and scream like a madman at the top of my friggin lungs

                              Thanks for all the info,

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

                              Comment


                              • #30
                                Re: Stress Test Questions

                                Jim

                                If i were you i would talk real serious about the myectomy, my obstruction was only 1.9 but i had other issues that made it a decission for surgery, and the meds were not working like they were 6 months before and i was maxed out and the regurgitation was moderate to severe and a year ago it was mild, so if i were you i would talk to the doc after that stress test, i mean i feel better and i'm not healed yet, at least i'm not wanting to sleep all the time even though i'm still having a fluid issue. Jim GOOD LUCK on your stress test


                                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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