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Cleveland Clinic (Ohio) For Testing on 9/30

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I am Darlene I had symptoms for at least 5 years that I now know were from HCM. My PCP didn't know why I was having symptoms. I changed doctors in 2014 for a "new perspective." After some misdiagnoses (high blood pressure, bronchitis, asthma) the new doctor sent me for an echo when she detected a heart murmur after several appointments with her. An echocardiogram in July 2014 showed I had HCM with obstruction. The cardiologist that my PCP referred me to wasn't experienced with HCM. After much frustration, I found a cardiologist with experience with HCM and am so glad I found him. I also see Dr. Thamilarasan at Cleveland Clinic. My obstruction is unusual in that it's my papillary muscle that's enlarged and causing the obstruction (which makes me cough A LOT!). My septum is only slightly enlarged. It was also discovered during the cardiac cath that I have a rare type of anomalous coronary artery. I always knew I was special on the inside. . . but not in this way. LOL!!!! Find out more about I am Darlene
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  • Cleveland Clinic (Ohio) For Testing on 9/30

    My appointment for testing at Cleveland Clinic in Ohio is finally almost here - Sept. 30. We are leaving tomorrow and spending the night in a hotel so that we can be there bright and early for testing.

    After months of feeling horrible, for some reason yesterday and today the symptoms aren't anywhere near as bad. I feel like I have a sinus infection though. (Pressure in my head, sinuses and ear canals.)

    If I still feel this "good" for testing, I hope they can still see that I usually feel "bad." Will my tests show that I'm not as bad compared to if they did the tests when I'm feeling a lot of the symptoms often? I don't know. I've been keeping a log of how I feel most days and will share that with the doctor.

    My locally-done echo said I had SAM. I can feel a back-up in my heart right before I cough and gasp for breath. But if I'm not feeling that now, or having those symptoms during the tests, I wonder if they'll still be able to see it happening. I think they should. It's not like it fixed itself on it's own.

    I'll report back sometime on Wednesday.
    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

  • #2
    Re: Cleveland Clinic (Ohio) For Testing on 9/30

    I know exactly how you are feeling Darlene....So afraid they won't see what needs to be seen. However, one thing about an HCM COE is they know how fickle HCM symptoms can be. If they are not sure they are seeing on a test what matches the symptoms you describe, they may use certain medications to challenge your heart ..... Or I've heard of them repeating a test at the end of the day when you report feeling 10 times worse than you did in the morning.
    Bring up these exact concerns to the cardiologist in the beginning, hopefully his explanations will ease your concerns.
    Best of Luck!
    After years of symptoms:
    Officially Diagnosed HOCM 2006
    Myectomy 3/11/13 at non-COE
    Extended Myectomy 7/23/14
    At Mayo with Dr. Joseph Dearani

    Comment


    • #3
      Re: Cleveland Clinic (Ohio) For Testing on 9/30

      Yeah when I went for my pre-op echo at Cleveland and I asked about my gradient, it was lower than I expected and the technician caught the look of disappointment on my face. Then he spun the computer monitor around for me to see and started pointing out the other defects he found. He said something like "don't worry, when Dr Lever sees this he's going to know that you have the real McCoy". The tech spent so much time with me that I was 1/2 hour late for me next appointment , but they flipped time slots around and fit me in with no worries. You will be well cared for Darlene, and they know what to look for.
      Last edited by angusjcampbell; 09-29-2014, 07:05 AM.
      Angus Campbell
      Golden Isles Region, Southeast Georgia, USA

      Dx'd HOCM at St Luke's Roosevelt, New York City, 2005
      Myectomy Jan 9th 2014 at Cleveland Clinic
      Drs Lever and Smedira

      Comment


      • #4
        Re: Cleveland Clinic (Ohio) For Testing on 9/30

        Thank you so much, Jill and Angus! I was envisioning me going there, the tests not looking as bad as I felt all this time, being sent home to be miserable some more. You are right. They do know HCM and all that goes with it so they'll understand. I'm glad I'm feeling better though. It's such a relief to walk from room to room without being SOB for a change.

        Thank you for your kind words and insight.

        We leave home in half and hour. Looking forward to having answers.
        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


        • #5
          Re: Cleveland Clinic (Ohio) For Testing on 9/30

          Thinking about you guys. Hope all went well and you have some answers.
          Angus Campbell
          Golden Isles Region, Southeast Georgia, USA

          Dx'd HOCM at St Luke's Roosevelt, New York City, 2005
          Myectomy Jan 9th 2014 at Cleveland Clinic
          Drs Lever and Smedira

          Comment


          • #6
            Re: Cleveland Clinic (Ohio) For Testing on 9/30

            Thanks, Angus. And thanks, Jill, for the private message.

            I didn't have to do all of the tests (skipped the genetic testing/consult and the cardiac MRI) so we got to come home earlier than expected.

            I met with Dr. Thamilarasan and his "fellow" Dr. Grodin (I think I spelled that correctly). For the past several days (since Saturday, during the testing and even today except for the expected exhaustion), my symptoms are much better than they had been for the past several months. They DID understand when I told them that. What a relief to have doctors believe you when you tell them something! I also felt like both of them looked at me with confidence and hope that they could help me. They were both awesome! No condescending attitudes. So fakeness. They were knowledgeable doctors ready and willing and able to help!

            Anyway, what they discovered is that my septum isn't overly thick. Local echo said 15.3 mm. He was going from memory (didn't show me the actual test results) and said when I asked that it's 13-something mm. My problem is that my papillary muscle is enlarged and it's causing the problem with my mitral valve and obstruction. He did NOT say that it needed to be reattached elsewhere like I've read for others. At the time I was too exhausted to ask him if that was part of the problem but he did NOT mention that as a possibility.

            He said that he's seen HCM patients with enlarged papillary muscles before but it's not very common.

            He said that the papillary muscle is hard to see and reach during surgery. He said it's difficult to know what to expect until they get in and actually look at it. He said a few stitches here and there might work or it might not. If it doesn't work, then I'd need my mitral valve replaced. He said organic valves (from pigs/cows) would not be good because they tend to be bigger/thicker and wear out in ~10 years. (I wouldn't accept an animal valve anyway.) So, if a valve replacement is needed, it would be a mechanical valve and I'd be on blood thinner for the rest of my life.

            He said he'd like to first try to improve my symptoms without surgery to make sure they are doing everything possible to avoid surgery if possible. I'll send back the Holter monitor tomorrow afternoon. Once he gets the results, he'll call me to review. He will work with me over the phone to, first, increase my Atenolol. If that doesn't help, he'll add or switch to (I forget which) me to Norpace (with several days in hospital as is normal when starting that medication). If that doesn't work, then it's surgery. If after trying to repair the papillary muscle and valve proves not to work when they test it, then they'll go ahead and replace the valve during the same surgery. In this case I'll be on blood thinners the rest of my life.

            I told him that I don't want to see my local cardiologist again and am looking for a different one. He said that he would work with me and my primary care doctor. She (my PCP) could help me with some of the local testing/checks and he'll handle the rest. I'll message her to make sure she's OK with that at this stage but that works for me.

            I didn't see any of the test results but asked for a few numbers. They (Dr. Thamilarasan and Dr. Grodin) were going from memory and said my resting LVOT gradient was between 14 and 29. (That's MUCH better than the 118 mmHg at rest that it was when my symptoms were worse.) They said it went up to 114 when stressed during the echo where I breathed the funky stuff that I can't remember the name of. So, I'm guessing that's why I don't feel as bad as I did but still don't feel well.

            I would highly recommend Cleveland Clinic (Ohio) and Dr. Thamilarasan to anyone looking for a COE! It was a good experience from beginning to end of my testing.
            Last edited by I am Darlene; 10-01-2014, 09:14 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


            • #7
              Re: Cleveland Clinic (Ohio) For Testing on 9/30

              I have good days and bad days and it seems that every time I go for tests at my local cardiologist I am having a good day. So I have the same concerns you stated. I am so glad you posted this because I go in next week (Oct 8) for testing at Cleveland Clinic. After reading your post I feel confident they will see something and its not all in my head. You know when there is something wrong, and some of these doctors act like you are making this up or that you make too much of it. My symptoms have increased significantly over the last year. I keep trying to tell my cardiologist (Not COE) and he tells me I need to exercise... I wish I could! Sometimes I cannot walk out to my mail box without my being so air hungry that it feels like my lungs are going to implode and my heart beats so hard. You can feel it pound just by touching my chest. Anyway, I appreciate you explaining what happened with you. I will be there next week and hopefully get some answers.

              Comment


              • #8
                Re: Cleveland Clinic (Ohio) For Testing on 9/30

                Glad I could help. . . just as many others here have helped me. I was a bit concerned about getting from testing station to testing station but they have it all laid out really well (mostly on the first floor) and easy to follow signage to the different stations. Everyone there was wonderful and helpful. Even my husband commented on how great everyone was. And, YES!!!, the doctors WILL believe you. That was a worry of mine and it wasn't worth worrying about. They KNOW HCM and are there to help. And it was great to finally get things explained to me!

                Will you be seeing Dr. Thamilarasan or Dr. Lever? I was hoping for Dr. Lever because I've heard so many great things about him here but would have had to wait 2 more months to see him. So, I agreed to see Dr. Thamilarasan and am glad I did. He's great and so is Dr. Grodin. You will be in good hands there. If you have any questions about CCF or what to expect, feel free to start a thread and list your questions. Enough of us have been there that we can probably answer all of your questions.

                By the way, I'm a country girl, not a city girl. Being in cities stress me out so I didn't want to sleep there. Instead of staying in Cleveland, we stayed at a the Clarion hotel in Beachwood which is about 9 miles or so east of CCF. The hotel was fine (smaller room that I expected, though), hot breakfast buffet was great, but it took 40-45, minutes to drive just those ~9 miles to CCF. The darkness in the early morning, rain and poor road signage didn't help but after we checked in to the hotel, family in the area told us to allow 40-45 minutes to drive in because of rush hour traffic at that time. We ended up missing a few turns so we got to CCF late. I apologized at every station about being late but they were all great and put me at ease with their, "Oh, don't worry about it. You're here now." and similar comments.

                I'm sure that you'll get the help that you need there whether you are having a "good" day or a "bad" day during testing. Let us know how it goes!
                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 (Ohio) For Testing on 9/30

                  If you plan to say in any hotels, be sure to ask for the Cleveland Clinic rate. Even the Clarion in Beachwood gave me a CCF discount. The single king bed room normally would have been $119/night. With the discount, it was $89 and no fee for parking.
                  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


                  • #10
                    Re: Cleveland Clinic (Ohio) For Testing on 9/30

                    I'm glad you have some answers, and a treatment plan!

                    Gordon
                    Myectomy on Feb. 5, 2007.

                    Comment


                    • #11
                      Re: Cleveland Clinic (Ohio) For Testing on 9/30

                      Darlene,
                      Glad to hear that you found some confidence with your care in J-building and have a plan going forward. Do keep us posted!

                      Kathy, the hotels recommended by CCF in their appointment package were all out at the airport and not that cheap. We found a Marriot property 1.3 miles from CCF just off Euclid Ave. We used Marriot points for most of our stay but the remaining room nights were reasonable at the CCF rate. Free shuttle to CCF or any local shopping or restaurants was a great plus, too, eliminating the need for car rental. The property was just renovated in spring 2013 and was clean, comfy and modern with good business amenities if needed. They were sooooo nice and knew how to care for CCF patients and families, both pre- and post-op. Most guests were either patients or health care professionals in town for training or some other medical seminars. It felt like a comfy extension of the hospital.
                      Angus Campbell
                      Golden Isles Region, Southeast Georgia, USA

                      Dx'd HOCM at St Luke's Roosevelt, New York City, 2005
                      Myectomy Jan 9th 2014 at Cleveland Clinic
                      Drs Lever and Smedira

                      Comment


                      • #12
                        Re: Cleveland Clinic (Ohio) For Testing on 9/30

                        Darlene
                        I will be driving up the morning of the appointments. I live about two hours away so I will just get up with my son when he gets up at 4:00 AM. I don't mind the drive. If I have to stay overnight that night then I will probably look for something close. I will be seeing Dr. Lever. I called in August, so yes it takes about two months to get in to see him. I am looking forward to the trip next week. I want answers and help. I am tired of not being able to do anything or enjoy life.

                        Comment


                        • #13
                          Re: Cleveland Clinic (Ohio) For Testing on 9/30

                          Angus
                          Thanks for the tips. I hope that I can return home after the appointments, but if not then I will check out the Marriot. I may do so also if I am too exhausted to drive. My Sister in Law lives in the area too. I could crash on her sofa, but I know they don't have an extra bed so not sure that would be too comfortable. I am glad that I do not live too far away and have to deal with flights in and out.

                          Comment


                          • #14
                            Re: Cleveland Clinic (Ohio) For Testing on 9/30

                            Angus, thanks for the info about the Marriott. If I have to go back, we'll stay there. I've read mixed reviews (some very bad reviews) about the hotels on campus that CCF recommends so I don't want to stay there. I never imagined it would take so long to drive ~ 9 miles. Driving the 45 minutes through traffic when it was still dark out and hard to see signs was stressful for my husband who was driving. Him being stressed, stressed me. (Funny, he kept calling our hotel "The Marriott" even though it wasn't. There was one near our hotel.)

                            Kathy, we got to leave early (around 2 p.m.) because of some of the test being cancelled but I was still exhausted. I made myself stay awake (but rested my eyes) for the first 1 or 1-1/2 hours home but ended up sleeping the rest of the way home (~4 hour drive total). I slept in really late the next morning and just sat around all day, tired. So, be prepared for the possibility of staying, like you said. I personally didn't find the tests stressful since I was looking forward to finally getting answers. They have things arranged well so there isn't too much walking from here to there. But just being awake and alert that long is hard for me right now.

                            Do let us know how it goes for you. You'll be in good hands 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

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