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Cleveland Clinic Mar 2 - ???

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carolinaviking Diagnosed with HOCM in 2001 Asymptomatic until 2012 - BP started dropping during exercise onset - nearly fainting Nov 2014 - Initial onset of a-fib w/RVR and it is now a regular companion Amiodarone 200 mg twice/day Metoprolol 50 mg twice/day Xarelto 20 mg Find out more about carolinaviking
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  • Cleveland Clinic Mar 2 - ???

    I hope this isn't premature. I have an appointment with Dr. Desai for March 2 through whenever. I'm guessing 2 or 3 days? My insurance hasn't agreed to cover things yet, but I should hear back this week about that. Yeah, I am really nervous about them being jerks. I've had 3 hospitalizations, and an ER visit since the weekend before Thanksgiving, so I'm hopeful that the Insurance company will see the long term benefit of going to a Center of Excellence for a second opinion.

    I need an electrical ablation. So now the question is whether I have a myectomy in my semi-near future or not. If I do then the concomitant MAZE procedure would be the ablation of choice. If the answer is no then a catheterization ablation with my local EP is the second best option.

    Meanwhile, I'm on Amiodarone 200mg twice a day, and Metoprolol 50mb twice a day to try to keep afib away. Sotalol was a complete and total failure for me.

    I've gone into afib twice since the hospital visit that resulted in starting amio. So it may not be working either, but it's too soon to tell, or so I'm told(Can take up to a month to get up to the right level?)

    Anyway, I hope the word from Dr. Desai is that I'm not bad enough off to need a myectomy for the foreseeable future. I watched my mom go through open heart surgery at Mayo and I imagine it's better now, but back in the mid 70's it was pretty horrible.
    Diagnosed with HOCM (Now HCM w/ obstruction) in 2001
    Asymptomatic until 2012 - BP started dropping during exercise onset - nearly fainting
    Nov 2014 - Initial onset of a-fib w/RVR and it is now a regular companion
    Amiodarone 200 mg twice/day
    Metoprolol ER 50 mg twice/day
    Xarelto 20 mg

  • #2
    Re: Cleveland Clinic Mar 2 - ???

    Hoping the Insurance Gods deem you to go to Cleveland and you get some solid answers.
    Marc
    Diagnosed @ 48
    Saw Dr. Michael Debakey @ age 5 - "He's fine, just a little noisy"
    Father to 3 boys 22, 25, 29 (all currently clear - pending genetics)
    AICD - Valentines Day '08, Spark Plug replaced 11/14
    After much research, I had a Myectomy @ Mayo for my 50th Birthday '08
    Quietly going insane . . .

    Comment


    • #3
      Re: Cleveland Clinic Mar 2 - ???

      Hi Dave,
      It's not easy to say what an insurance company will do . . .

      Myectomy isn't something anyone sane would do for fun, but I expect that it's a LOT better than when your mom had one. I had one 8 years ago, and would do it again if I needed to. Most people are out of the hospital in a week or less (for a few people, it's 4 days, but that's not something to expect). There's still a lot of recovering to do (people are usually home for 6 weeks or so; sometimes more and sometimes less). In my case, after 4 weeks I started to feel pretty well. So, of course you should hope you don't need a myectomy, but if you do, surgical technique, pain management, and rehab have all improved greatly since the 70s.

      Gordon
      Myectomy on Feb. 5, 2007.

      Comment


      • #4
        Re: Cleveland Clinic Mar 2 - ???

        Dave - I also want to stress that Insurance companies can be a pain and if they decline, keep going back. The squeaky wheel gets the grease.
        My old HMO declined my AICD over a dozen times. My Primary (actually a cardiologist) wrote them a note, thanking them for providing so much proof (13 of THEIR OWN doctors stating I needed one) to my family should an event happen. I was approved and operated on within 2 days.
        Marc
        Diagnosed @ 48
        Saw Dr. Michael Debakey @ age 5 - "He's fine, just a little noisy"
        Father to 3 boys 22, 25, 29 (all currently clear - pending genetics)
        AICD - Valentines Day '08, Spark Plug replaced 11/14
        After much research, I had a Myectomy @ Mayo for my 50th Birthday '08
        Quietly going insane . . .

        Comment


        • #5
          Re: Cleveland Clinic Mar 2 - ???

          I'm hopeful that the insurance company will be agreeable. I've spent 11 days in the hospital since the weekend before last Thanksgiving, and one additional 14 hour period in the ER.

          Hopefully, they'll see the benefit of doing what it takes to figure out what is going on. Or maybe they want to keep piling up hospital stays?
          Diagnosed with HOCM (Now HCM w/ obstruction) in 2001
          Asymptomatic until 2012 - BP started dropping during exercise onset - nearly fainting
          Nov 2014 - Initial onset of a-fib w/RVR and it is now a regular companion
          Amiodarone 200 mg twice/day
          Metoprolol ER 50 mg twice/day
          Xarelto 20 mg

          Comment


          • #6
            Re: Cleveland Clinic Mar 2 - ???

            Carol, I hope you don't have problems with your insurance company and you get on the track to feeling better soon. Pretty scary to be in the ER and hospital so many times in such a short period.

            I, too, will be at Cleveland Clinic soon: March 3 & 4 for additional testing and meeting the surgeon, and March 5 for myectomy and possible mitral valve placement (but am hoping that's not needed). If you're going to be there then, we could meet up in the halls. Me, I'm looking forward to feeling better and the surgery is the way for me to do it. I've had enough of not being able to do anything. I just took my dogs outside and stood on the porch while they did their business. I had to call the one dog a few times before he came back inside and that was enough to exhaust me. I'm so tired of coughing all the freaking time (7 months) so that my throat feels scarred. Tired of being fatigued all of the time. So, I'm ready for surgery and moving on to feeling better.
            At least 5 years of symptoms.
            07/24/14: Age 45, diagnosed with HCM w/ obstruction.
            09/30/14: Tested at Cleveland Clinic (Ohio).
            January 2015: Approved for surgery.
            03/05/15: Pending myectomy & possible mitral valve replacement at Cleveland Clinic

            Comment


            • #7
              Re: Cleveland Clinic Mar 2 - ???

              Dave, like others have said, open heart is no fun, however after our experience with my husband's Myectomy at CC it wasn't near as traumatizing as I worried it would be. And this was even with a few complications. Was worth every penny. Hubby is doing great, still gets tired if he over does it, but not anywhere near what he used to be.
              I was the squeaky wheel when it came to insurance. I even got the codes to double check their coverage. And so far so good! Most of our bills are near paid after 8 months of HCM. Keep notes, and calling until you get the answers you need.
              Good luck!
              Megan, wife to Husband, Justin with HOCM
              Husband diagnosed at 37 when taken to ER due to CHF on vacation in San Diego at Pomerado Hospital, March 2014
              Seeing Dr. Salcedo in UC Med Hospital Denver upon diagnosis
              AICD/Pacemaker July 2014 @ UC Med Hospital, Denver with Dr. Nguyen
              Myectomy at Cleveland Clinic October 2014 with Dr. Smedira
              Parents to 3 boys, 11, 8, and 6 all currently clear from recent echos

              Comment


              • #8
                Re: Cleveland Clinic Mar 2 - ???

                LOL! I just realized that I called you "Carol," Dave. Sorry about that. I just looked at your screen name and went with the name that popped out and didn't read the rest of it. Sorry. LOL!
                Last edited by I am Darlene; 02-01-2015, 10:27 PM.
                At least 5 years of symptoms.
                07/24/14: Age 45, diagnosed with HCM w/ obstruction.
                09/30/14: Tested at Cleveland Clinic (Ohio).
                January 2015: Approved for surgery.
                03/05/15: Pending myectomy & possible mitral valve replacement at Cleveland Clinic

                Comment


                • #9
                  Re: Cleveland Clinic Mar 2 - ???

                  Yep, I was confused. I didn't make the connection between "Carol" and "carolinaviking". If my insurance company complies it would be nice to meet up in March. I'm not totally sure how long my testing is supposed to last, but it sounded like there were several different tests to run, and I don't see how they'll get it done in one day.

                  Take care, and I hope everything goes well for you!
                  Diagnosed with HOCM (Now HCM w/ obstruction) in 2001
                  Asymptomatic until 2012 - BP started dropping during exercise onset - nearly fainting
                  Nov 2014 - Initial onset of a-fib w/RVR and it is now a regular companion
                  Amiodarone 200 mg twice/day
                  Metoprolol ER 50 mg twice/day
                  Xarelto 20 mg

                  Comment


                  • #10
                    Re: Cleveland Clinic Mar 2 - ???

                    So Cleveland is ON!!!! The insurance company is being VERY good to me.

                    I'll be there for the 2nd and the 3rd. All the testing on the 2nd starting at 6:45 a.m.

                    Hopefully there will be some answers.

                    I tentatively have a cath ablation scheduled for April 13th, assuming that the news from Cleveland is that I don't need the myectomy.
                    Diagnosed with HOCM (Now HCM w/ obstruction) in 2001
                    Asymptomatic until 2012 - BP started dropping during exercise onset - nearly fainting
                    Nov 2014 - Initial onset of a-fib w/RVR and it is now a regular companion
                    Amiodarone 200 mg twice/day
                    Metoprolol ER 50 mg twice/day
                    Xarelto 20 mg

                    Comment


                    • #11
                      Re: Cleveland Clinic Mar 2 - ???

                      I'm glad things are moving forward for you, Dave. I'll be in the halls on March 3. I only have a few tests this time starting at 1:10 p.m. I'm 5'-4'1/2", chunky/overweight, with dark blonde/light brown hair that I just got cut really short and I'll be wearing a tie dyed sweatshirt since I wear tie dye every day. If you see me, please, introduce yourself.

                      I went to CC in September for initial testing. They have things really well laid out with very good signage to get you from station to station. If you use the valet parking and go in the main doors there, turn to the left and go down a little way to the registration section. (It's near a large column with lots of signage on it.) They'll gather your information, register you as being there then point you in the right direction for your first test station. Basically the hallways have tons of chairs and are the waiting areas. There are designated sections for each test. Most of the testing is on the first floor with a few things on other floors depending on what you are scheduled for. There are elevators so don't worry about having to take the stairs. When you check in at each station to wait for your test, they give you one of those beeper things like restaurants give you. Then you sit and wait until they "beep" you. Then they have you go through the doors in that section to the actual testing area. It's all very well run and easy to follow.

                      When I was there in September, we stayed the night before in a hotel because I also had to be there bright and early like you. We were warned the night before (by family that lives in the area) that even though our selected hotel was only about 8 or 9 miles (I forget exactly now) away, to allow 40 - 45 minutes to drive there. Even with that we were late. We didn't count on the rain, it being so dark that early or having trouble reading road signs. So, we ended up getting there late and a little stressed out. I apologized at every station and everyone was wonderful and understanding. Literally everyone we met there was great. You'll do great!
                      At least 5 years of symptoms.
                      07/24/14: Age 45, diagnosed with HCM w/ obstruction.
                      09/30/14: Tested at Cleveland Clinic (Ohio).
                      January 2015: Approved for surgery.
                      03/05/15: Pending myectomy & possible mitral valve replacement at Cleveland Clinic

                      Comment


                      • #12
                        Re: Cleveland Clinic Mar 2 - ???

                        I don't know what's going to happen on the 3rd for sure. All my tests are on the 2nd, but the results probably won't be available until the 3rd, and apparently there can be more tests based on the results of the first day?

                        There should at least be a final consult for me on the 3rd but that isn't scheduled yet.

                        I'm 5' 6" brownish/grayish hair and overweight too. I'll try to put a picture up on the site soon.

                        We're planning on driving up on Saturday in case the weather is bad. Cleveland in March? My idea of wonderful?

                        Thanks for the warning about the traffic. We've thought about staying across the street even though it's more to save on the stress of driving in from further out. Haven't figured that part out yet.

                        Thanks for the encouragement and "maybe" I'll see you there. Good luck with your surgery!
                        Diagnosed with HOCM (Now HCM w/ obstruction) in 2001
                        Asymptomatic until 2012 - BP started dropping during exercise onset - nearly fainting
                        Nov 2014 - Initial onset of a-fib w/RVR and it is now a regular companion
                        Amiodarone 200 mg twice/day
                        Metoprolol ER 50 mg twice/day
                        Xarelto 20 mg

                        Comment


                        • #13
                          Re: Cleveland Clinic Mar 2 - ???

                          At my testing in September, I had a few tests then met with Dr. Thamilarasan to go over what they found so far. (He gets the results immediately.) He said that I could skip the test that was scheduled next but he wanted me to take another test then come back and see him again when I was done. So that's what I did. After that, I went to get the 48-hour holter monitor put on and was done for the day and went home. So I did all of my testing and meeting the HCM specialist (twice) on the same day. It probably doesn't always work out that way but they are really good at getting the results quickly and getting the information to the correct specialist while the patient is still there, especially if the patient had to travel from out of town to get there. When it was time to take the monitor off at home, I took it off myself and mailed it back in the pre-paid envelope that they provided.

                          When we go in March, we're going to suck it up and pay the higher fee and stay at the hotel that's connected to J-building. It's $205 per night with the Cleveland Clinic discount but at least I won't have to worry about my husband walking the streets after dark as I've read here that some areas are not good to walk at night. I know he can stay in the private room with me but I want him to get a break from the hospital and have a comfortable bed so I told him I'd prefer he stayed in a hotel and not in the private room with me. Hopefully the closeness of the hotel and having the mental and physical break from the hospital will make things easier and less stressful for him. And we won't have to fuss with the traffic. (We're country folk and not use to cities or the traffic.)

                          We're both worried about the weather that we'll get here at home in central PA while we are gone. We've been getting a lot of snow this year. We live on a 1/4 mile unpaved, uphill, poorly maintained private road and our driveway is another 1/4 mile, uphill and shaded because of going through our woods. Without my husband here to maintain our driveway, I don't know how our dog/house sitter will get in and out. And I'm still trying to hire a dog/house sitter. It's stressing me out more than the surgery. LOL!

                          Anyway, you'll do fine, meet some great people, and get some answers so that you can move on to a treatment/solution. That alone is worth all of the hassles of getting there.
                          At least 5 years of symptoms.
                          07/24/14: Age 45, diagnosed with HCM w/ obstruction.
                          09/30/14: Tested at Cleveland Clinic (Ohio).
                          January 2015: Approved for surgery.
                          03/05/15: Pending myectomy & possible mitral valve replacement at Cleveland Clinic

                          Comment


                          • #14
                            Re: Cleveland Clinic Mar 2 - ???

                            Dave, did you get the rest of your schedule? I signed up for mychart and have been getting messages about my schedule, mostly confirming what was already mailed to me and adding something that wasn't on the schedule previously. Anyway, I was wondering if you'll be seeing the specialist on March 2 or March 3. We decided to drive there March 2 (probably get there in the evening). My tests and meetings are on March 3 from 12:45 - 5 p.m. Will you be there then?
                            At least 5 years of symptoms.
                            07/24/14: Age 45, diagnosed with HCM w/ obstruction.
                            09/30/14: Tested at Cleveland Clinic (Ohio).
                            January 2015: Approved for surgery.
                            03/05/15: Pending myectomy & possible mitral valve replacement at Cleveland Clinic

                            Comment


                            • #15
                              Re: Cleveland Clinic Mar 2 - ???

                              Yes, he will. I oughta know. We arrived in Cleveland earlier today to beat the weather.

                              Comment

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