If this is your first visit, be sure to check out the FAQ in HCMA Announcements. You may have to register before you can post: click the register link above to proceed. To start viewing messages, select the forum that you want to visit from the selection below. Your Participation in this message board is strictly voluntary. Information and comments on the message board do not necessarily reflect the feelings, opinions, or positions of the Hypertrophic Cardiomyopathy Association. At no time should participants to this board substitute information within for individual medical advice. The Hypertrophic Cardiomyopathy Association shall not be liable for any information provided herein. All participants in this board should conduct themselves in a professional and respectful manner. Failure to do so will result in suspension or termination. The moderators of the message board working with the HCMA will be responsible for notifying participants if they have violated the rules of conduct for the board. Moderators or HCMA staff may edit any post to ensure it conforms with the rules of the board or may delete it. This community is welcoming to all those with HCM we ask that you remember each user comes to the board with information and a point of view that may differ from that which you hold, respect is critical, please post respectfully. Thank you

Announcement

Collapse
No announcement yet.

Going to HCM Specialist

Collapse

About the Author

Collapse

annamc Find out more about annamc
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Going to HCM Specialist

    Hi everyone, I am finally going to see an HCM specialist and get my care up to date for 2003-2004. Of couse I'm nervous, but doctors always make me nervous. However, I'm sure it will go okay. I'm worried about the what if I'm obstructed. Though, I don't think I am b/c I would be having major symptoms, right?

    Oh, and did everyone know a new drug called Exanta is being studied and has been requested for FDA approval. Though, not sure when that will be. Anyway, it will be the new safer anticoagulation drug. No more warfarin or lab tests. Yeah! Also, Exanta has no drug/food interactions. Isn't that great? There is one thing though that is troubling, it may affect the liver and you must get liver tests, but not near as often as warfarin monitoring. As Exanta keeps your levels the same the whole time and works the same in everyone. To check it out, type in the name at:

    www.google.com

    My appointment is September 25th and I'm kind of excited too. I'm anxious to see what he has to say. If all goes well, I'll be able to see the specialist the rest of the time for my care.

    Anna (I'll let you know how it goes)

    P.S. I am going to check about my Inderal LA, as lately I've been noticing it may be the exact cause of my symptoms. I have stomach pains and intestinal pains nearly everyday and it cannot be my food. I've thought that I may be allergic to citric acid in my food, but that may not be the case. Did you know Inderal LA could cause paranoid thinking? Geez! Don't need that, which I might have on occasion. This was the only beta blocker in the drug book that indicated it could cause that. To be free of these problematic intestinal pains would be great.

  • #2
    Re: Going to HCM Specialist

    Dear Anna,

    Great!!! Can't wait to hear how it goes and thanks for the update on Exanta.

    I hope trying a different beta-blocker works for you, too.

    take care!

    S

    Comment


    • #3
      Re: Going to HCM Specialist

      Anna,
      I am glad to hear that you will be re-evaluaing your care! ANd thank you for the new drug update!

      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


      • #4
        Re: Going to HCM Specialist

        Hi Anna, I was on Inderal for many years and had the exact same intestinal problems as you as well as constant diareaha.
        I missed work often because of stomach cramps. My GP thought I was lactose intolarant.
        I switch to Atenolol and it all went away.
        Good luck with a new beta blocker.
        Every great thing that has ever happened since the beginning of time has started as a single thought in someones mind.
        So if you are capable of thought then you are capable of great things
        Good luck and stay well.
        Glen

        Comment


        • #5
          Re: Going to HCM Specialist



          Thanks everyone for the support! I was beginning to worry about switching beta blockers again, but the specialist will know best, so I'm going to leave it in his hands. Right now I don't have Shortness of Breath, which is very good. I remember what its like to have it. However, I've traded one for the other with this Inderal LA, now I have diarrhea like Glen mentioned. Does anyone else get shortness of breath on there beta blocker?

          Take care,

          Anna

          Comment


          • #6
            Re: Going to HCM Specialist

            It is hard to tell if being SOB is because of beta blockers or simply from your HCM.
            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


            • #7
              Re: Going to HCM Specialist

              aren't beta-blockers meant to alleviate shortness of breath?

              Comment


              • #8
                Re: Going to HCM Specialist

                Beta blockers make the heart beat more softly so that it has time to fill with blood better. They can also help regulate blood pressure and heart rate. Sometimes this does help with SOB.

                Reenie
                Reenie

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

                Comment


                • #9
                  Re: Going to HCM Specialist

                  Greetings my fellow HCMers:

                  My appointment has been rescheduled to Oct. 31st due to Hurricane Isabel. I will let you know how it goes after that date.


                  Anna

                  Comment


                  • #10
                    Re: Going to HCM Specialist

                    Good luck on your appointment and let us know how you make out!

                    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


                    • #11
                      Re: Going to HCM Specialist

                      After tomorrow, I will be heading on up to stay in a hotel and then Oct. 30th will see the specialist and stay again until Friday to leave. Yeah, the appointment was changed from the 31st. Hm, I wonder what he is going to say. I've been sick with irritable bowel and wish I could feel better prior to going to have a pleasant ride. Oh well, I'll post update Friday if I can, if not over the weekend. Hope everyone is doing okay!


                      Anna

                      Comment


                      • #12
                        Re: Going to HCM Specialist

                        Anna

                        Good Luck, with your appt, I will be seeing a Dr. on the 30th also, Be careful with your travels, let us know how everything goes
                        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

                        Comment

                        Today's Birthdays

                        Collapse

                        Working...
                        X