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Now What? Wait until my symptoms get worse again?

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MartinKennedy Find out more about MartinKennedy
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  • Now What? Wait until my symptoms get worse again?

    A month since the emergency angioplasty and this is the week I would have had the ablation. It was canceled because my symptoms were so alleviated but I do still have fatigue, chest pain (reduced but still there) and anxiety about my heart. I really have to cut back on how much activity I have in a day. I cannot go for a long day...so am having to drop my extra work activities like volunteer work at the church, parades with my Civil War group, etc. I just cannot afford to get myself so stressed out again. But, this is very frustrating. I am dealing with a lot of frustration and sadness. I guess I thought I woud have the surgery and then have a much more normal heart, now I am in the limbo period in that I do not have symptoms sufficient to warrant the risk of the alcohol ablation.

    I am hoping to get into a cardiac rehab program but they want to see my results in a stress test and also look at my sleep apnea records.

    Through it all I remain sober and that is a major blessing, one I cannot forget. It has been over a year now since my last drink.

    Here is my beef: my regular cardiologists did NOTHING to help me with diet and weight loss, even though I kept pointing out that I was gaining weight. they ignored my symptoms and I went for almost ten years without an exercise test and almost seven with an echo. I think they could have really helped me out if they had given me some dietary guidelines. As it was I refused to be discharged afer my angio until I spoke to a dietician and the social worker who promised to help me with finding a cardiac rehab program never called back.

    I gues I am very concerned that this HCM business was not consistently addressed and that there should probably be a standard protocol of testing that takes place once a diagnosis is in place.

    I feel as though I am walking around with a terrorist bomb implanted in my chest, ready to blow at any time.

    Anyway, that is the emotional side of this.
    Alcohol ablation January, 2004. Stent placed, September, 2003. Now...at age 53...working out, building a cabin, sober and clean. A 2nd chance at life. There is hope, there is a future. Have faith.

  • #2
    Re: Now What? Wait until my symptoms get worse again?

    Martin, there are lots of people who wish that their their doctors were better about informing them on HCM. The truth is that many doctors don't know a lot about it. They understand what HCM stands for, but I have run into one that doesn't even understand the difference between HCM and dilated cardiomyopathy, even after I explained it more than once. He is, of course, not the norm, but it happens. From this point on you need to be your own advocate. Learn your rights and get all the help you can. Good luck.

    Reenie
    Reenie

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

    Comment


    • #3
      Re: Now What? Wait until my symptoms get worse again?

      Martin,

      Reenie is absolutetly right in saying; "from this point on you need to be your own advocate". A lot of doctors are not trained in "wellness" but in disease, so they can give you a diagnosis because they've become good technicians with all of their electronic gadgetry, but when it comes to assisting in developing healthy lifestyle changes, they're at a loss.

      There's lots of info out there, and people who can help with nutrition and a proper rehab program. Unfortunately, you have to go digging on your own and in many instances it's trial and error. Don't give up and keep pestering them with your questions. If you look at the staff parking lot of most hospitals, it's filled with BMW's and Mercedes Benz's, so you know they get paid good money for putting up with you.

      I switched primary care physician a couple of years ago because I was concerned with being examined by someone who was in worst shape than I was, and was all to quick to prescribe drugs for my blood pressure. I have since changed my diet and my workout routine, and have been able to control my pressure without medicine.

      Keep digging, but relax a little to. It sounds like anxiety is getting to you as well, and that needs to be attended to.

      Best of luck Martin.

      Bert

      Once again,

      Comment


      • #4
        Post angioplasty anxiety

        Yes There is anxiety but a lot of it is a reaction to being sober , recovering from abuse , coming back from the angio and living with some of the unknowns . It is all good, for the best. I know about the anxiety - I am very labile right now, highly emotional but that is going to be fine.

        My greatest anxiety is that I am experiencing angina and will need to just take my time to figure out what we are going to do.

        Marty
        Alcohol ablation January, 2004. Stent placed, September, 2003. Now...at age 53...working out, building a cabin, sober and clean. A 2nd chance at life. There is hope, there is a future. Have faith.

        Comment


        • #5
          Re: Now What? Wait until my symptoms get worse again?

          Martin,

          I pray you will be filled with peace and comfort!
          My father had his ablation almost one year ago (11-11) and while some of his symptoms were alleviated, some still remained and get worse as the days go by. He is definitly more active (he can take walks again) but he is fatigued like he was before the procedure. His local cardiologists have been playing with his meds to see if they aren't the culprit. And, his one year follow-up appointment is in a few weeks! Hopefully that will go well. Well, take care and feel well. You are in my thoughts.

          Erica

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          • #6
            Re: Now What? Wait until my symptoms get worse again?

            Marty... I see you made good use of our little friends!

            You bring up some good points...and I agree 99% and you may find my responce a bit odd, but follow me.
            YES doctors should help us be well in all terms. I am not fond of doctors who hand out pills..I like those who say HMMM lets find out WHY? and then if needed hand out "pills" they do. But lets look at there side of the fence. Pressure is on them everyday to keep costs down, pay their own bills and in many cases patients do not follow instructions. So reality breaks in and short cuts are found and WALA you have a doc that hands you pills rather than LOOK further. Doctors who do look further are sometimes said to be doing un-needed testing and wasting money and this is not good...so again short cuts and WALA pills...

            Should a doctor look at the WHOLE PERSON ...HECK YES THEY SHOULD! Does our system encourage this...NO it does not.

            SO off to my next point...
            WHO should look at the WHOLE person...well WE should and we should each be provideing as much information to the doc as possible, in a time efficient matter. What do I mean. Schedual an appointment for 1 hour, bring your list of questions, problems, family history to your doctor and begin to communicate at a new level. This is not ease and may require you to bring someone with you to help explain details of what is going on in your life. If the doc is not responsive...FIND ONE WHO IS. In the USA doctors are service providers and we can seek the ones we want.

            Marty, this is not directed at you... you just made me think and you all know that is trouble . But Marty...Congrats on the 1 yr I know how much that means!

            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


            • #7
              Re: Now What? Wait until my symptoms get worse again?

              :P The point about being straight with your doctor is very important. My medical care improved substantially the day I leveled with my PCP about my sexuality (that is another whole story, needless to say I was stressed over coming out), my alcohol abuse and then my symptoms. We were able to go through the agenda and at the end of the day realized that in fact I had a significant underlying medical problem that was previously undetected. (The blockage in additioin to the HCM)

              My heart was breaking both literally and figuratively. Stress and anxiety were laying heavily on me and my fortunes changed when I got into AA, starting doing the steps, got honest with myself and my family about my 'true' self and then got down to the nitty gritty stuff of healing my body. Stress probably played a significant role in my symptoms worsening, perhaps even the HCM worsening as my heart was pumping so fast that it overworked itself. Some evidence that too much exercise can hasten the thickening.

              So, here I am...will keep all posted.

              Marty
              Alcohol ablation January, 2004. Stent placed, September, 2003. Now...at age 53...working out, building a cabin, sober and clean. A 2nd chance at life. There is hope, there is a future. Have faith.

              Comment


              • #8
                Re: Now What? Wait until my symptoms get worse again?

                Marty,
                I love your attitude... I love your honesty and I hope you feel the same about yourself!
                Big hugs!
                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: Now What? Wait until my symptoms get worse again?

                  Dear Marty,

                  I don't personally think that asking for your doctor to be introspective and to understand the patient as a human being with feelings, thoughts, attitudes, interpersonal relationships, aspirations, and expectations rather than a mere symptom carrier, is asking for a lot.

                  Obviously, being open and honest with your doctor is of extreme importance, but make sure your doctor is not afraid to act on evidence that's available today as well. He or she should have enough confidence in their knowledge, training, and instincts to avoid the cop out: "We don't know enough. All the evidence isn't in. We need more research."

                  Nevertheless Marty, take a deep breath and relax a little. Go outside, take a walk, breath the air and keep your body moving. Everything will turn out just fine. Sounds like you've already made great strides towards the road to recovery. Surgery is not always the road most traveled.

                  Hope this helps and best of luck.

                  Bert

                  Comment


                  • #10
                    Re: Now What? Wait until my symptoms get worse again?

                    """ He or she should have enough confidence in their knowledge, training, and instincts to avoid the cop out: "We don't know enough. All the evidence isn't in. We need more research.""""

                    I think that is a bit extreme... there is no cop out in admiting that there is a lack of data, lack of evidence, or stating a fact...we need more research. It is the doctors that claim to know all that are the problems... and thankfully there are very few of them.
                    Admission of a lack of knowledge is a sign of an honest doctor who admits they live in an ever changing world.

                    Lisa[/quote]
                    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


                    • #11
                      Re: Now What? Wait until my symptoms get worse again?

                      Marty, it sounds like the last year has been hard on you both mentally and physically. I'm very happy for you that you are on the road to recovery. The AA, the bypass surgery - wow, you'll be a whole new person before long! I hope and pray that you continue to heal. And know this, we're here for you to laugh with you and to listen to you vent. Whatever you need.

                      Reenie
                      Reenie

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

                      Comment


                      • #12
                        Re: Now What? Wait until my symptoms get worse again?

                        I have to agree with Lisa about the doctor who claims they know the answers. It was that kind of doctor that almost killed me. In fact she told me to go live my life however I wanted because nothing was wrong with me. She based her decision on tests and information that had little to do with hcm.The truth was revealed that I had 3 maybe even 4 of the risk factors for sudden death.

                        Just my two cents

                        mary

                        Comment

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