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.

Is Heart Catheterization Necessary with HCM?

Collapse

About the Author

Collapse

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

  • Is Heart Catheterization Necessary with HCM?

    Howdy Folks,

    My new cardiologist has scheduled me for a catheterization next tuesday and i'm not quite sure i want to have this done. I'm hoping maybe a few of you could shed some light on this for me

    I'm a little unclear as to what information a cath will provide him about my HCM that all the other tests wouldn't already have. His nurse simply told me that he orders this for most of his patients. He still hasn't shared with me the results of my echo, stress test, or holter monitor, which i would like very much to know before we move on. He also started me on beta blockers, which i've never taken before, and to date he hasn't even asked me how i'm doing on them. I've actually only seen him once, on my initial visit. All the tests have been scheduled and performed by others, and i don't know that i particularly like his hands-off approach too much.

    If the heart catheterization is absolutely medically necessary, i will of course have it done. Otherwise, i'm going to start drawing the line here on just how much poking and prodding i'm going to allow. What i really want is for this guy to just stop, take a few minutes, review what we've done so far, and explain to me what he expects to learn from a cath. But when i asked if he could do this, i was told i could schedule an appointment in three to four weeks.

    What do ya think?

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

  • #2
    Negatory

    Dear Jim,

    There are lots and lots of catheterizations and you don't say which one he wants to do.

    I'm guessing that he wants to do an electrophysiology study (EPS). The latest feeling about EPSs is that they are not useful for HCM.

    The holter and ecg would report any arrhythmias, which you are being treated for. In some diseases, an EP can predict stuff, but with HCM it doesn't really tell you anything that would change treatment.

    The party line is that you need it to make sure you aren't at risk for sudden death ---however, the study itself has a 1-2% risk of dying on the table which is probably MORE than your risk of dying suddenly without being touched.

    And, the risk factors have been found to be more predictive of sudden death than the EPS. Those factors are septal wall over 30mm thick, ventricular tachycardia, abnormal blood pressure response on a stress test, personal history of fainting or cardiac arrest, and a family history of 2+ sudden deaths. The more factors, the higher the risk. 3+ factors will get you an ICD in most hospitals, no questions asked.

    I've had an EPS against my better judgement. I wouldn't do it again. Mary would back me up on this one, too.

    There may be some cases where an EPS is useful, but HCM research has not borne this out for HCM.

    If your doctor gets pissy about wanting you to have one, call Lisa and have her get you some references to quote or doctors to consult with your guy.

    take care,

    S

    Comment


    • #3
      Thanks Sarah,

      I'll try to find out tomorrow what type of cath he ordered for me. I was just told to show up. LOL. You spoke of ventricular tachycardia, and i have to admit i don't even know what that means. What test would show that? I think i'm going to postpone the cath until he can at least meet with me and discuss the things we've already had done.

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

      Comment


      • #4
        Jim, "because he schedules them for most of his patients" isn't really a very good reason. I suspect any 3rd party payer would object to that reason as justifiable for reimbursement. Now we know he has something in mind, or he wouldn't be doing it, but he owes you the proper explanation. Ask for it , get your questions answered. If you don't feel comfortable about it, delay till you do. Maybe he is unaware that this is the explanation being given to his patients. You may find that he is a bit distressed to learn that he has trusted someone to do a very important job and it's not being done properly. Teaching and explaining are very important. Call him back, good luck, and keep us posted. Linda

        Comment


        • #5
          vtach

          Dear Jim,

          Vtach would show up on a holter or an ECG --it is an arrhythmia where the ventricles beat too fast. Vtach, for short, usually happens in tiny bursts.

          Johns Hopkins writes: "Ventricular Tachycardia A series of rapid heartbeats that originate in the lower chamber of the heart (the ventricles) which may cause the heart to beat inefficiently."

          A doctor web site who's name I can't find (bad web design!):

          "During ventricular tachycardia pumping blood is less efficient because the rapid ventricular contractions prevent the ventricles from filling adequately with blood. As a result, less blood is pumped to the body. The reduced blood flow to the body causes weakness, dizziness, and fainting. If left untreated, ventricular tachycardia may lead to a more life-threatening condition. Note, because of the decreased diastolic time, coronary blood flow is decreased, increasing the chances of a myocardial infarction."

          More than you wanted to know. BUt yes, a conversation about what he knows so far is in order.

          keep us posted,

          S

          Comment


          • #6
            Heart Cathater

            Hi Jim.
            I had a heart catheterization done to rule out any other coronary artery disease. My cardiologist wanted to be sure that “all” I was dealing with was HCM.
            Peace,
            Leon
            God Squad co-moderator
            Nothing is as gentle as strength and nothing is as strong as gentleness

            Comment


            • #7
              Leon - You took the words from my mouth!
              Yes that is one reason - there are others, but it is not a test that is likley to shed a great deal of light on the "HCM" part of you.
              Ask what they hope to find, do differnt and what the clinical reason is for the test.
              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


              • #8
                Re: Negatory

                Originally posted by Sarah
                ---however, the study itself has a 1-2% risk of dying on the table which is probably MORE than your risk of dying suddenly without being touched.
                I think that you will find that the general statistic for Cardiac Catheterization, for both Angiography & Angioplasty, is fewer than 1 in 1,000, or less than 0.1%.

                Comment


                • #9
                  Cardiac Catheterization is done to rule out any other coronary artery disease. For HCM, the internal pressure reading may be helpful to know. As to the major risks of Angiography:

                  "Severe Bleeding or brusing in about 1 in 100 people.

                  The radio-opaque dye can occasionally lead to allergic reactions (1 in 1,000 people) or deterioration in the function of the kidneys (especially in people with pre-existing kidney disease).

                  It is not common, but there may be infection, pain, or blockage of the blood vessel at the site of the puncture.

                  Very occassionally the catheters can damage one of the heart's blood vessels, or in about 2 in 1,000 people cause a stroke.

                  1 in 100 people suffer abnormal heartbeats during the procedure.
                  As with all X-rays, there is exposure to radiation. One coronary angiogram is equivalent to approx. 15 trans-Atlantic flights.

                  Finally, some people suffer a heart attack or die during or after the procedure, but this is rare and happens in fewer than 1 in 1,000 people."

                  Angioplasty, Stephen Fort, MD, & Victoria K. Foulger, RN, Script Medical Press Inc., Toronto, 2001, ISBN 0-9688982-0-3

                  Comment


                  • #10
                    I dont want to speak for Sarah but I think she was talking about an EPS. Which I will agree with her I would NEVER do it again. When I had my EPS I had to be externally defribed. back, and the feeling after wasnt fun

                    Comment


                    • #11
                      apples to apples

                      I was just referring to EPSs only. And yes, there are other cath procedures --but I didn't address them b/c I don't know much about them and they aren't "for" HCM, so I have no beef with them.

                      We need to compare apples to apples ----
                      An EPS is not the same as a "cardiac catheterization" --the CC is done to see if your arteries are clogged. The EPS is essentially turning the heart off and on again. They are playing with the electrical system, not just running a tube through the pipes.

                      Yes, if Jim's doctor just wants to dig around and make sure he's clean --that's cool, but odds are that Jim is scheduled for an EPS.

                      The stats I gave are from a few years ago. I don't have time right now to look up any newer ones, but I will this week. However, it is higher than a CC and it is higher than walking around.

                      I hope this clears a few things up.

                      S

                      Comment


                      • #12
                        I have to chime in here...

                        Jim-

                        First, greetings from Central Illinois.

                        Now... I had two echos, the first was the standard echo and the second was the transesophageal echo. Neither echo really showed that I had HCM so my cardiologist at the time was a bit confused, I think. My EKG was WAY abnormal, but he said that was no big deal. He told me to ignore my chest pains and that I'm fine.

                        I got pretty concerned about the dull ache and pinching sensation in my chest and kept calling their office. He ordered a chest CT scan and a cath. It should be noted that he's the area's top cath doc, so naturally this procedure was performed by my cardiologist. Anyway, immediately following the cath his reponse was that I had a "significantly hypertrophied left ventricle" - this only months after being told I had a normal trans echo. He said I didn't have HCM though. I had to actually go see a specialist to get diagnosed and get proper treatment.

                        So, I guess the moral to the story is that echos are great and considered to be the standard for identifying HCM from a "thickness" standpoint. But, for me the cath really gave my doc the information he was looking for.

                        Frankly, if you insurance is good, I'm of the mindset that you go get the cath. Even if your doc doesn't know what to do with the results, it will give more ammo to a HCM specialist and I think the more they know about you the better they'll be able to make decisions on your treatment, care and lifestyle.

                        Good luck to you!
                        Tom Mc.
                        Apical HCM

                        Comment


                        • #13
                          Sarah is absolutly right about the EPS study! I would not have another one of those done if my life depended on it. I against better judgement and the advice of Lisa went ahead and had one done. The worse experience of my life. They managed to get me into v-fib and I was shocked back. Unfortunatly, I was completly awake for the whole procedure. Now I know why they tie you down there. I guess it probably wouldn't be so bad if it helped with my diagnosis at all but they told me that what they did would have put anyone into v-fib and that the test was inconclusive. I don't ever remember in school where you do things to people that could kill a completly healthy person. I was also discharged out of the hospital one hour after my procedure which is not standard. It was late and the cath team wanted to go home. The bruising in my leg was so bad that I could not even walk. My local cardiologist thought I had a bleed and sent my for an echo of my leg. Thank God it wasn't.

                          Reminder: This normaly does not happen with most EPS studies
                          It was just botched in my case.

                          I have also had a regular coronary cath done. The reason my local cardiologist did it was to get a precise gradient and to check if I had vasoconstriction of my arteries. We found out that my arterioles were very small due to the HCM. So this cath was very important in my continuing treatment.

                          Just my two cents on this subject! Sorry for venting about the EPS study but it gets me a little mad when people try to kill me.

                          Mary S.

                          Comment


                          • #14
                            caths

                            Dear Tommy,

                            It sounds like you are referring to a regular cath and not an EPS, right? Just want to be clear.

                            Thanks!

                            S

                            Comment


                            • #15
                              Hi All,

                              I canceled the catheterization for next week. I politely but honestly told them that i just don't feel comfortable with the procedure, until the doc sits down with me and discusses all the tests i've already had... the stress test, holter monitor, echo... he hasn't discussed any of these with me or followed-up with me on my new medication. After that, if he can convince me that the cath is absolutely necessary i may go along with it. He's also got to convince me that it's safe... my much-trusted doctor in Montana has already warned me that i've had way too many chest x-rays and CT scans for my own good. And since i'm flying solo on one kidney since the cancer, any medications or procedures that could effect that in any way must be considered.

                              As always, i appreciate your input

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

                              Comment

                              Today's Birthdays

                              Collapse

                              Working...
                              X