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Eileen2345 Find out more about Eileen2345
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  • Pressure Gradient

    Hi everyone

    I just got back from my stress echo.

    I lasted one minute and a half, my heart rate got up to 160 bpm and the other tech said "Take her off, she is too short of breath."

    There is good and bad.... good is my EF is down to 74% (it was 84% last echo).

    Bad is that my pressure gradient is 107 resting. I know that is not good.

    Are there any ways to lower my pressure gradient?

    There was also something that bothered me..... There were 2 technicians. But when I was alone in the room with the one tech (not the one who said to take me off the treadmill, the other one) and he was hooking me up to all of the wires he seemed to be fixated on my breasts. He even made the comment "Your husband must be happy."

    I was caught off guard. I wish I has said something to him, but I did not. I was cordial during the whole stress echo experience. I even thanked him and the other tech at the end. That perve tech gave me the creeps. Geez.

    -- Edited to say: I am mad at myself for not saying something to that technician, but I guess I should concentrate on the more serious matter. And does anyone else have a high pressure gradient?

    I also have systolic anterior motion. Is that bad? The 'nice' technician said that is normal for anyone with Obstruction.

    And, the stress test they did was called a Modified Bruce. I guess it is not as strenuous than a regular stress test.

    Anyway, thanks for listening and for any info on how to lower my pressure gradient and for any replies.

    Hugs to All

    Eileen
    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.

  • #2
    REPORT THE TECH ASAP! That was completely inappropriate and he should NOT be making comments like that at anytime especially when conducting a test of such a personal nature! CALL TOMORROW!

    RE the SAM - that is part of obstruction and it means that the mitral valve is kicking back and hitting the septum - it is common in HCM.
    That gradient is too high and it is time to look at septal reduction. There are some meds that may help to reduce the gradient but they may only drop it by 25% which still leaves you with a high gradient.

    Have a nice night and please do report that perv to someone.

    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


    • #3
      I agree with Lisa. I would report that tech right away. Call up and ask to speak to his supervisor, and tell them exactly what happened. That is sexual harrassment.
      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


      • #4
        Eileen yes report the man that is no way to treat a patient he is in the wrong field of work, to tell you the truth i probably would have slapped him and said it is none of your business and insisted on someone else but i can also see being shocked at what he said, but please report him, and start thinking about the septal myectomy lady that is a very high gradient you take care

        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


        • #5
          Hi Eileen,
          Let me tell you a story that takes place back in the days when I was still working. Once my mother had retired, and I was still single and newly out of the army, we lived together for a fairly short time. Once a week my mother would have friends over to play canasta (remember that game?) She always referred to them as “the girls,” and since I went out with ‘the guys’ I never associated age with either term.

          At work one day I happened to refer to a number of women as girls, and a fairly young person took umbrage with the term. She promptly told me that she was not a girl but a woman, and had been for X number of years. Well, I was quite embarrassed by her remark, and said, “That’s more then I care to know.” Anyway, she reported me to personnel who called me in and required me to give a full written explanation of all that happened. I was given a warning and told any repetition of such an event and I would be fired on the spot. I personally felt my comment was in no way abusive to anyone – but that female’s response was abusive to me. - Yet I was the one in hot water. I was extraordinarily careful after that, but still felt that somebody would jump up, misconstrue something I said, and get me fired at any moment.

          Now, compare what I got into trouble over with what that technician said and did. Don’t forget to place the electrodes you had to be exposed and he had to be touching you. His remark was totally uncalled for, and in no way should it be tolerated by you - or the institution he works for. You were under quite enough stress already.
          Burt

          Comment


          • #6
            Hi Burt

            I'm sorry that woman was so rude to you. Her actions were completely un-called for. Talk about making something out of nothing.

            I called the office and mentioned it to that department. Maybe they will say something to him.

            To be honest, I am much more concerned about my pressure gradient. How long can someone live with a pressure gradient that is that high -- 107mm.

            I am applying for disability now and they said it will take months for them to review my case. I need to try to get on Medicare soon so that I can maybe get to Cleveland and have a myectomy done.

            Thank you Burt, and to everyone who responded and to those who read this, thank you for your suppport.

            Hugs,
            Eileen
            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


            • #7
              Eileen,

              My pressure gradient was close to 200 mmHg prior to my myectomy. Please call Lisa when you get a chance and discuss your treatment options. Are you currently taking your meds? I recall a previous post from you regarding your reluctance to take the meds your doctors have prescribed. Please elaborate on this if you can. We can help you much better if we have all the facts.

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

              Comment


              • #8
                Eileen, I also wonder, with the "new" evidence that you are truly sick and not making this up, has your husband's attitude changed any? I worry about you.

                Reenie
                Reenie

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

                Comment


                • #9
                  Hi Jim and everyone too!

                  Jim, no I am not on any medication at this time. I did try Verapamil for about 3 or 4 weeks or so and I could not take the (another too much information) side effect, constipation. I need to use the hopper. I can not bear down because of my obstruction or else I really could pass out.

                  And when I took the Verapamil, I felt more short of breath while doing activities, probably because of my obstruction.

                  I can not take beta blockers because I have had asthma in the past. (And I still do during the spring pollen and if I am around cats.)

                  But I have other health issues too, 9 years ago, I had thyroid cancer and had my thyroid and the tumor surgically removed and I received radiation. That did not help my heart. I take a thyroid replacement hormone.

                  I have no parathyroid function because of the thyroid cancer, therefore, I have low blood calcium and I take 2,000 mg of cal a day.

                  I was anemic for years before my hysterectomy, I had to receive blood transfusions twice because I hemorrhaged so bad.

                  I had a radio frequency ablation done and they cauterized certain arteries of my heart.

                  So even though I am 41, I have had some issues to deal with, plus I have given birth to 2 children.

                  Sorry for giving everyone my life story. But, maybe that is why things are going the way they are for me healthwise.

                  The hardest part is my children, I have a 9 year old daughter and a 6 year old son. And they, along with my husband are very frightened by my health condition. I ride my scooter everywhere. I am so tired.

                  Thanks for listening (actually reading my novel).

                  I hope that maybe I can get on Medicare within the year, but maybe not, I'll have to see.

                  Thank you again everyone for everything, I hold everyone here in very high regard.

                  Hugs,
                  Eileen
                  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


                  • #10
                    Eileen,

                    As someone who has experienced a few disabling maladies of my own at a young age (cancer and HCM are just two of them), let me assure you that i completely understand where you are coming from. It's hard enough being 41 and sick, let alone trying to get through it with little or no insurance. To address the myectomy and insurance issue, i'll send you a pm or email tomorrow with some information regarding my own situation and some links to a few resources that may be of help to you specifically. I just have to find where i put all that stuff, so give me some time to collect it.

                    I think Mary and I should get together and write a book entitled HCM On A Budget. It gets tricky at times, but you can get proper treatment even with limited resources. Hopefully we can all help you through the red tape and get you that myectomy you need.

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

                    Comment


                    • #11
                      Eileen, I pray that you are able to get the medical help you need and soon. Please keep us posted.

                      Reenie
                      Reenie

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

                      Comment


                      • #12
                        Jim sounds like a great idea! I think I get by on even less money than you did last year. I haven't heard from ya in a while. Call me!

                        And with all the problems I've got I will assure you you can find a combination of meds no matter what is wrong with you.

                        Mary S.

                        Comment


                        • #13
                          Hey Mary! I just sat with 2 women from the Orlando area who were RN's and in 10 minutes they claimed to have learned more about HCM then in 10 years!! Maybe one of them will remember what I said should you ever run into them

                          Eileen - You will have a much better fight for DI when you have optimized all treatment options. Have you contacted Cleveland yet? They are very workable with insurance and payment issues.

                          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


                          • #14
                            Hey I'm trying down here. One nurse, one intern, one willing doc at a time!

                            Mary S.

                            Comment

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