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What meds are you on post myectomy?

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  • What meds are you on post myectomy?

    I am just wondering what meds everyone is taking post myectomy. I (along with my doctors, of course) am trying to experiment to find what will work the best for me, and I am hitting a few bumps in the road, so I am wondering what works best for everyone else.

    I am particularly having trouble with chest pain especially since discontinuing Norpace after the myectomy. An increase in beta blockers seems to have improved the chest pain, but is also causing more SOB and less exercise tolerance which I don't like. Norpace has so many side effects that we would like to find an alternative. I may switch to another BB or add a CCB next. Knowing what works for others is helpful.

    Thanks.
    Daughter of Father with HCM
    Diagnosed with HCM 1999.
    Full term pregnancy - Son born 11/01
    ICD implanted 2/03; generator replaced 2/2005 and 2/2012
    Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.

  • #2
    Re: What meds are you on post myectomy?

    Cynaburst,
    I PMed you about what we have tried for me....
    I hope your bumps have not been as bad as mine have been...
    Nikki
    ------
    "I will live each day with the love and help of my family and friends."

    Diagnosed w/ HOCM Feb. '05, ICD April '05, Myectomy Dec. 13th, 2005 at NEMC
    Wire fractured, ICD and wire replced on 10/17/2008.
    Adopted in 1979, no medical history passed on other than born with a murmur and leaky valve.
    Married 9 years to the greatest husband that a woman could want.
    Mother to a wonderful 9 year old boy. So far he is negative for signs of HCM.

    Comment


    • #3
      Re: What meds are you on post myectomy?

      I've been on Toprol XL from 25mg all the way up to 100mg, and currently I'm holding steady at 50mg. My symptoms aren't consistant (periodic SOB, chest pain, PAC/PVCs, almost always at night) and don't seem to be impacted either way with the dosage. I think we're going to try and wean me off of Toprol altogether (again) and see where that goes.

      Sorry to hear you're experiencing "bumps" too - hope you find something that minimizes them for you.

      Jeff
      husband, father of 3, dx in 10/05 at the age of 36, Mayo myectomy club member as of 2/24/06

      Comment


      • #4
        Re: What meds are you on post myectomy?

        James has been on Lopressor since surgery. He has had to up his dose several times and now is taking 100 mg in morning and 100 mg in evening. He has said several times the last year it gets to where he starts feeling bad before it's time for a dose so that is why it has been upped several times. Now he feels pretty good most of the time. We are currently in Orlando and have been to all the amusement parks and he has gotten pretty tired later in the evening. We have only spent about 5 hours in the parks and we also got passes to go in express lines and exits and have not had to wait in lines. I had kind of thought that after the surgery we would not have any issues but that was silly thinking on my part. He still does have the disease. Anyway, I hope things get better for you! Janet
        My son James, Age 18, diagnosed in January, 05. AICD - 4/5/05 at Tufts NEMC. Myectomy -1/25/06 at NEMC. Currently having heart failure issues. James' father and uncle both have HCM and AICDs. James dad, Carlton, had Myectomy at Cleveland on 4/10/06. James Medtronic recalled lead fractured 5/26/11. Had Biventricular Cardiac Resynchronization AICD put in on 6/3/11 Emory Midtown.

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        • #5
          Re: What meds are you on post myectomy?

          The only heart medication that I am on post myectomy is Coreg 25mg twice a day, and the Coumadin because of the replaced Mitral Valve. This has worked pretty good. I do get spikes of High blood pressure for no apparent reason. My cardiologist is working on that issue.

          Good luck....I hope you fine the right combo for you....Bob
          Diagnosed with HOCM January 2006
          Married to the most beautiful woman and supporter in the world Deb,
          Myectomy and Mitral Valve replacement Nov 22, 2006 @Yale New Haven Hospital

          Comment


          • #6
            Re: What meds are you on post myectomy?

            I had my myectomy this past October. I started off taking only 25mg of toprol xl. I am now up to 200mg daily. It has made a big difference for me.
            Good luck...Barb
            Diagnosed Aug 2006 Myectomy 10/25/06 ICD 07/18/08

            Comment


            • #7
              Re: What meds are you on post myectomy?

              Originally posted by Cynaburst View Post
              An increase in beta blockers seems to have improved the chest pain, but is also causing more SOB and less exercise tolerance which I don't like.
              Cynthia this is truly scary!

              I was just getting ready to post a message in Ask the HCMA regarding alternatives to Atenolol when I saw your post. I kid you not.

              Atenolol has worked well for me these past four years now, but post-myectomy it just isn't cutting it any more. My primary complaints about the drug are SOB and decreased exercise tolerance as well. I didn't even realize how much it was effecting me until recently my specialist asked me to go off the Atenolol entirely for two days prior to a stress test. My heart went a little nuts for those few days and it was kinda scary to be honest, but boy did my energy level and exercise tolerance increase.

              I have another appointment with him on March 6th, and one of our main goals is to discuss alternatives to Atenolol that will help alleviate my HCM symptoms but not have such an impact on my ability to live my life.

              I will be watching your thread with great interest.

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

              Comment


              • #8
                Re: What meds are you on post myectomy?

                Hello

                Well, I have this off and on love afair with chocolate. It seems like I can be active as any other 44 year old or I can be a couch potato. I had my couch potato days for a few months and my b/p ended up getting a "little" high. I am taking 25mg of atacand. I will start biking and exercising again here soon and my b/p will drop. My cardiologist seems to think that atacand is a good thing for HCM. I have not checked this out yet.

                Scott
                Every day is a present I was diagnosed when I was 38, I have asthma which made me assume it was ashtma, getting old, and being about 30 lbs over what I should be. I have days when I would rather not know. Myectomy club 3Jan06 CCF, my life is so much better!!!!

                Comment


                • #9
                  Re: What meds are you on post myectomy?

                  Cynthia,

                  As you know my Myectomy was 3 years and 4 months ago. I was only on Atenolol 75mgs daily post-op for a short time along with lasix. Gradually over the first year post op I was increased on Atenolol to now 100mgs, 2 times per day. ( I was on 300-400mgs a day pre-op). After about a year of this, it was necessary to add in Diltiazem, gradually increasing it from 180 mgs a day to now , 3 times that a day. The lasix was decreased to , as needed in fall of 2005 and now is added back regularly since fall of 2006. I had very poor effect and bad side effects to CCB's prior to myectomy but none after surgery.

                  I know these doses are whopping and sound unbelievable but , they have been necessary to help decrease or at least try to terminate the chest pain. It never seems to work as well as I wish or for long enough. Presently there is an increase and intensity to the chest pain, so we need another plan. I have just been hoping it would magically go away.

                  I am sorry you are having chest pain , and wish for relief for you with a good effective plan of attack.

                  Hope this info helps .
                  AND Jim, tirrrrred? I'm right there with you on that one ! Those are the effects I wissssssshhhh were not part of the mix.

                  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


                  • #10
                    Re: What meds are you on post myectomy?

                    I take 240mg extended release Verapamil everyday.

                    I have no side effects (except for a little constipation -- [blushing] -- which I take a couple of Senokot for and it's not a problem).


                    Verapamil works fine for me.

                    I don't tolerate Toprol very well.




                    Eve
                    49 yrs. old
                    Diagnosed at 31.
                    Cardiac Arrest 2003, RF Ablation in AZ, no positive result -
                    First ICD 2003 - In 2006 lead went bad, abandoned lead, threaded new one & new generator
                    Myectomy 5-5-05 at The Cleveland Clinic - Dr. Lever & Dr. Smedira -heart surgeon.
                    Currently have Grade 2 Diastolic Dysfunction with pulmonary hypertension & pulmonary edema.
                    My brother passed away suddenly at 34 yrs old from HCM.
                    2 teenage children, ages 17 and 15.

                    Comment


                    • #11
                      Re: What meds are you on post myectomy?

                      As you can see on another post that my kids are like 9 and 10 years post myectomy. They both take propranolol ER daily. Krista (15) takes 120 mg and Tyler (12) takes 80 mg. They have been on this med since their myectomies.
                      Michelle - mom to Krista and Tyler both HCM
                      Krista surgeries: 3/97 myectomy, 2/99 mitral valve replacement
                      Tyler surgery: 1/98 myectomy

                      Comment


                      • #12
                        Re: What meds are you on post myectomy?

                        Jim/all,

                        When you guys speak of "decreased excercise tolerance", what exactly does that mean? Lack of energy to excercise? Adverse effects during/after excercise? Something else?

                        Jeff
                        husband, father of 3, dx in 10/05 at the age of 36, Mayo myectomy club member as of 2/24/06

                        Comment


                        • #13
                          Re: What meds are you on post myectomy?

                          2 things for me. Feeling more lethargic and tired with less total energy, and less able to bound around, and also its as if my heart cannot keep up with my body, and I start huffing and puffing. For example, yesterday, I was going for a walk around the neighborhood. I live on a mild hill, which is long. Since the surgery, I have been able to walk fast up the hill, but yesterday, when I tried to do this, I got out of breath faster than I used to and had to slow down to catch my breath. This is worse than I was on 25 mg. less of BB.
                          Daughter of Father with HCM
                          Diagnosed with HCM 1999.
                          Full term pregnancy - Son born 11/01
                          ICD implanted 2/03; generator replaced 2/2005 and 2/2012
                          Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.

                          Comment


                          • #14
                            Re: What meds are you on post myectomy?

                            Ditto to what Cynthia said.

                            Specifically, whenever I attempt rigorous exercise I get short of breath, lightheaded, my blood pressure drops, and I exhaust quickly. In my case we've found that a big part of this is that the Atenolol is keeping my heartrate too low. In fact the highest I've ever seen it go is 97 bpm running full-bore on a treadmill, which is nowhere near high enough to keep up with the increased oxygen demand. A few weeks ago my doc ran a stress test after I was off the Atenolol for two days and the results were very encouraging. My heartrate and blood pressure both rose normally, I didn't tire as quickly, and I felt like I was actually 'working out' for a change and burning some calories. Now we're looking for an alternative med that will provide the same protective benefits but not put such a limit on my activity level.

                            Jim
                            Last edited by mtlieb; 02-22-2007, 01:31 PM.
                            "Some days you're the dog... some days you're the hydrant."

                            Comment


                            • #15
                              Re: What meds are you on post myectomy?

                              Thanks Cynthia and Jim for the clarification - thats definitely different from what I'm experiencing. I generally do well during excercise, but I get more intense symptoms at night after I try to excercise with more intensity.

                              Jeff
                              husband, father of 3, dx in 10/05 at the age of 36, Mayo myectomy club member as of 2/24/06

                              Comment

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