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  • new guy, septum alcohol ablation:

    Hi everyone, just found this site today. I am going to have a septum alcohol ablation procedure at Wake Forest Baptist Medical Center in Winston Salem, N.C. this next Wend. the 16th. I was just wandering if any of ya'll that has had this done can walk me through it in laymens terms, and tell me how you feel about it. I was diagnosed a year ago with mitral valve regurgatation. I was prescribed Altace. I continued to get worse and in Jan. of this year went back to the cardiologist, and was diagnosed with HOCM. He then sent me to the head cardiologist at Baptist hospital where he put me on Verapimil. This has not done much for me, and last week they decided that the ablation procedure is what I need. As far as I'm concerned its none too soon. As all of you that have HOCm, I'm sure I don't need to say how lousy I have been feeling. after reading some of the after-action reports on here, it makes me have hope that I will finally feel better. Any info would be appreciated, thanks, Jeff.

  • #2
    Hi and welcome. My best advice would be to send a PM to Lisa Salberg. Click here to access the page to send the PM. http://forum.4hcm.org/profile.php?mode=viewprofile&u=8 She will be glad to talk to you, but have you exhausted all medicines to relieve obstruction? How old are you? These are things that should be considered when undergoing an ablation. It's not a procedure for everyone. On the other hand, if it's the right procedure for you, I wish you the best of luck and relieved symptoms. Glad to have you here!

    Reenie
    Reenie

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

    Comment


    • #3
      Jeff,
      I second the notion that you should contact Lisa. I also feel that if you are under 50, you should re-open the decision to get an ablation.
      Personally, I feel that no one should make the Ablation/Myectomy decision until they have visited one of the 3 HCM centers (Mayo, Cleveland Clinic, New England Medical). These hospitals have a tremendous amount of experience with HCM, especially with various drug therapys. The correct drug or drug combo, can actually put off procedures for years or even forever.
      Please review these boards for more information, especially the latest newsletter,
      http://www.enewsbuilder.net/hypertro...kR9pg,b2PwdGml
      Fx

      Comment


      • #4
        Jeff, Welcome to the site. One year is pretty new and there is so much to learn. Yes, call Lisa and do all your research to learn all the options. You will want to know that you have all the info to make the best decision for you. Best wishes, please keep us posted. Linda

        Comment


        • #5
          Howdy Jeff,
          OK – let’s see if I got the facts straight. You were diagnosed a year ago with mitral valve regurgitation. You kept feeling worse – and last January you were diagnosed with HOCM. Medically you were on Altace for a year, and in January when you were diagnosed with HOCM you were put on Verapamil - which did not seem to help. Now they are rushing to give you an ablation. Is that about right? (It seems a bit precipitous to me.)

          First of all, Altace is an ACE inhibitor and is usually contra-indicated for HCM. From this I assume there was no thought of HCM prior to this January when they gave you some unknown quantity of Verapamil - which is a calcium channel blocker frequently used with HCM - but it did not seem to work. Was the dose too low, or does it not work for you, or maybe you need it in combination with a beta blocker like Atenolol, or maybe you need to switch to Atenolol. Possibly you may need some other drugs entirely to make you feel better, but right now I suspect it is way too soon to make any kind of a value judgment.

          Maybe after all the drug alternatives are tried it will work out that you may indeed need an ablation – or possibly a myectomy. Who can tell at this point?

          Jeff, you really have to talk to Lisa, but before you do there is some information you should gather for her. First of all, what tests were run that made them come up with a diagnosis of HOCM? Did they run an EKG? Did they do an Echo? If so, how frequently has the tech that ran the test dealt with HCM patients? – (a certain skill level is required with this particular condition.) If you had an echo – what were the readings? This is important info for Lisa to better understand where you are at. Also, did you have a stress test, or a stress echo, or a radiological stress test, or what all? Gather all the info you can on everything that was done, including blood tests. Start a file of your medications, tests, and diagnoses, and keep it up to date.

          Now, I in no way want to steal Lisa’s thunder or try to guess what she is going to say, but if it was up to me I would not make a move until I was given a complete work-up at one of the big three for HCM/HOCM – The Cleveland Clinic in Ohio – The Mayo Clinic in Rochester, MN – or Tuft’s NEMC up in Boston. (Not in any order or ranking.) I would also think long and hard, and make sure all the various drug therapies were not only tried but given time to see how they behaved with me, before I would opt for any physical intervention procedures. It well may come to that, but it is way too soon to know if that is the case right now.

          There’s a lot going on here, and Lisa is extremely knowledgeable – and willing to help. You may not know her, but right now she is your best friend. Call Kelly at the office and have her set up a time when you can talk to Lisa, and please put that ablation on hold until things are more clear and you have a chance to make an intelligent decision. Hang in there my friend,
          Burt

          Comment


          • #6
            Jeff's posting reminds me of how often people are given the wrong medications for HCM. What is very important to know is that correct medical management must be given a chance to work proir to moving on to more invasive procedures. ACE and diurtics are NOT the drugs of choice in HCM and Verapimil is not a drug of choice for those with obstruction. BetaBlockers and Norpace are the drugs most useful for those with HCM and obstruction.

            I spoke to Jeff earlier. My best wishes are with him.

            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
              Jeff,

              I live almost around the corner from you, and I went over to Duke for my myectomy. Yes it's not one of the top 3, but they are specialized in HCM there and are most likely close to that top 3 list. The people here are correct that you might want to rethink this. Especially with the alcohol ablation procedure. If you want to know more about Duke and their HCM clinic shoot me a PM.


              Regards,
              Fred

              Comment


              • #8
                I'm glad you've spoken to Lisa. I hope you get some good information and are able to get the best care.

                Reenie
                Reenie

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

                Comment


                • #9
                  how i'm doing:

                  Well everyone, I had my ablation done last week on the 16th. I came home on Friday the 18th. The doc said it was the worst one he had ever seen. They give me three injections in the septum. The worst thing that happened was they had some trouble stopping my bleeding when they removed the sheath from my artery. It took 45 minutes of pressure to stop it. My thanks to a mere wisp of a nurse who actually got on top of me with her whole body weight to compress the site. I do owe her my life. I had a 3-4 day fever, but other than that I did ok. Am taking Lopressor now. 50mg twice a day. And am also on the weak side, but when I came to from the procedure, I noticed that the pressure and pain I had been having were gone, and that remains so. I walk a little everyday, and realize that this is going to take some time to get any strength up. I also realize I will never be as strong as I used to be. I've been a construction worker all my life, and never had too much trouble lifting heavy weights, but thats over with. I'm 5'10" and weigh 230. I'm going to try to lose 50 lbs. I know that will help me out. I'm on a strict diet, low fat, low sodium. I'm on what I call the cardboard diet. Everything that taste good, I can no longer eat, everything that taste like cardboard is good for me. YUCK!, I'm sure there are others of you that know what I'm talking about. Anyway, just wanted to let ya'll know that I ain't dead yet. From some of the things that I read from my original question on this post, there were some of you who thought I was going to be. Yea I know, barring any thing else this is going to eventually kill me, but you take whats dealt to you like a man. I come from a very long line of poor tough farmers, so I think that might have helped out some. But the main thing that helped me, is my faith in the Lord God Almighty. I accept His decisions, mine don't count! Ya'll take care and God bless.

                  Comment


                  • #10
                    Jeff,

                    “But the main thing that helped me, is my faith in the Lord God Almighty. I accept His decisions, mine don't count!”
                    This reminds me of a story.

                    Caleb was known as the most devout man in town. No one could remember ever hearing him curse. No one could recall ever seeing him take a drink. It was well regarded that he had never missed a Sunday service.
                    One day the town was hit by a terrible flood. As the water rose, Caleb sat on his porch with the good book. A rowboat came by and the rower told Caleb to get in. He replied “My faith is in the lord”, and sat back down in his chair.
                    But the water kept rising and Caleb had to climb up to his second story bedroom. He sat near the window and read. A motor boat came by and the driver shouted “Caleb, hop in”. He said “My faith is in the lord”, and sat back down on his bed.
                    But the water kept rising and Caleb had to climb out the window and sit on his roof. Soon, a helicopter came by and dropped down a rope ladder. Caleb shouted to the pilot “My faith is in the lord” and he sat down and continued to read from his bible.
                    And the water continued to rise.
                    Caleb was swept off his roof and soon drowned.
                    His soul rose to heaven.
                    Furious, he pushed his way past St. Peter till he stood before God Almighty.
                    He roared “Lord, there is no one I know who has loved you more then I. I have never taken your name in vain. I have pushed aside all temptations. I have prayed to you each and every day. How could you let me drown?”
                    God looked Caleb straight in the eye and said “Two boats and a helicopter weren’t good enough?”

                    “Anyway, just wanted to let ya'll know that I ain't dead yet. From some of the things that I read from my original question on this post, there were some of you who thought I was going to be.”

                    Jeff, I believe you totally misinterpreted our advice to you. First of all, each and every one of us has HCM. We have all walked in your shoes. We care about each person who finds us, even when they don’t understand what we have to offer.
                    You made a rash decision. It was made with faith in God, and faith in your doctor, but it was rash.
                    HCM is a heart condition but it is not Heart Disease. For 99% of us, there is no hurry to make treatment decisions. There are many medication options, but they need to run their course before you go on to the next treatment. Your post indicates that you did not give them enough time.
                    With only your doctor’s word, you went with an inferior procedure. Who says so? Every single EXPERT in HCM throughout the world. However, just because its not the best treatment, does not mean we thought you were going to die. The procedure still has a very high degree of success. Just not as much as the surgical option.
                    Here are two last pieces of advice. One, should the results of your ablation not be satisfactory, there is an HCM specialist in Raleigh-Durham. Contact the office for their name.
                    Two, be especially careful and aware of any problems with how you are feeling between 1-2 years after your Ablation. There is evidence that most post-Ablation issues occur in this time frame.
                    Our best to you and yours.
                    Fx

                    Comment


                    • #11
                      Felix,
                      I’m kind of surprised by your attitude with this. We gave him our honest opinions and hopefully he also spoke to Lisa about it – then he made his decision. It was his to make.

                      I also believe you mis-spoke when you said; ‘Who says so? Every single EXPERT in HCM throughout the world.’ I think you will find not only do many experts advocate ablations (sometimes to our concern) but there are times and conditions which make it the proper procedure for that person at that time.

                      I have not seen his medical records – and neither have you. I do not honestly know if he made the right or wrong decision – and I am not equipped to give a ‘blind’ judgment that would be worth the paper it was written on.

                      Jeff Hooker is still a valued member of this band of friends, and personally I have every intention to stand by and help and/or advise in any way I can, but I will not stand by and guess if his decision was the right or wrong one. I do not know his medical circumstances and am not equipped to make any kind of value judgment of his decision. (Correct me if I am wrong, but didn’t you have a heck of a time with the recovery from your myectomy?)

                      I hope your posting was an aberration of the moment and not a reflection of a “Do what I say or you are wrong” attitude. In any case it is for us to now support him in his recovery from the procedure. Let’s hope we can all do this in a friendly manner.
                      Burt

                      Comment


                      • #12
                        Jeff, I'm glad to hear that you came through all right and are feeling better. I hope and pray that you continue to strengthen a little every day and that you find yourself feeling better too.

                        I don't remember, but do you have children? Have they been screened for HCM?

                        Reenie
                        Reenie

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

                        Comment


                        • #13
                          Thanks to all of you who have given me your opinions. I am not upset at any of you who might disagree with what I've said. And yes I have talked with Lisa about my case. Like I told her, I'm a simple man. She told me that I might want to consider going somewhere else to get treatment, but I can't do that. Not enough funds for that kind of thing. But I would not do it even if I had the money. Like I said I trust in God more than any other power, for He is the only power there is. I figured if God wanted me to live, then he would guide the doctors hands that worked on me. All of us have one thing in common no matter our station in life, and that is we are all going to die. When God decides that my time is over, then I accept that. I watched my father waste away with cancer, a terrible experience for all of our family, but I don't question Gods wisdom in that, there is a reason for everything that happens to us, and everything is in His hands, our life, and our death. He spared me for a reason, that I will understand one day. Everyone is differant. The main thing in life is to make sure you are ready for your death, only then can you enjoy life without fear. God bless you all.

                          Comment


                          • #14
                            Hi Jeff,

                            I'm glad you are doing better. And I hope you continue to improve.

                            Please keep us updated on how you are doing.

                            I have alot of faith in God also. I keep asking, if I should have a myectomy, please open the doors. I am waiting, we'll see.

                            My thoughts and prayers are with you dear.

                            All the best,
                            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


                            • #15
                              Jeff,

                              Thanks for letting us know how you are doing! I'm sorry things didn't work out exactly as you had planned, but then again nothing in life ever does, does it? After my cath at the Cleveland Clinic i had to have a nurse lay into my groin so hard to stop the bleeding i felt like we should have had a priest there to read us our nuptials! LoL.

                              You made a decision that you felt was best for you at the time, and that's all any of us can do. I'm so glad to hear that you are feeling better after your ablation! It's hard to describe what it's like to finally be without that obstruction, isn't it? There are many folks here on the board who have had success with the procedure and have experienced great relief from their symptoms. We are all behind you in your recovery and hope that you'll continue to post and let us know how you are doing.

                              As an archaeologist, my work was quite physically demanding as well. Archaeology was my entire life, and i intended to continue it until the day i died. I know how you feel about having to give up some things that you have always been able to do. I come from a strong German/Irish farm family with strong hearts and an incredible work ethic to boot. But nonetheless i've started into a new life now which is actually turning out to be quite a kick in the pants. Just remember that an HCM heart is extra-strong, not extra-weak.

                              You've adopted a great philosophy already... just roll with the punches and make the best of it that you can. You have a great attitude going for you, so you're one step ahead of the game.

                              You take care, and please continue to let us know how you are doing!

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

                              Comment

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