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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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  • Jordan Z.
    replied
    Re: Cleveland Clinic Mar 2 - ???

    Best to the entire bunch of you.....see ya on the other side of all of this.

    Leave a comment:


  • I am Darlene
    replied
    Re: Cleveland Clinic Mar 2 - ???

    Glad you both made it there safely. I hope the weather is OK. It's snowing here in central PA. We will get to our hotel tomorrow night but not go to J building until Tuesday.

    There will be another HCMA member there, too, but he doesn't post much on the forums. I've been talking with him through private messages. If I recall correctly (my memory is fuzzy) he's going there today to get checked in. He's having surgery the same day I am. We could have a little "Big Hearts" party!!!! We'll have to get a picture of all of us to share.

    I'm looking forward to meeting you, not a specialsnowflake & carolinaviking!

    Leave a comment:


  • notaspecialsnowflake
    replied
    Re: Cleveland Clinic Mar 2 - ???

    Yep, tomorrow begins the poking and prodding for Carolina Viking. I just wait around with the huge binder of paperwork and imagibg, and crochet stuff. I have the easy part.

    Leave a comment:


  • angusjcampbell
    replied
    Re: Cleveland Clinic Mar 2 - ???

    What a group. Sounds like riot in Cell Block #5! Good luck to all y'all and watch out for that Polar Vortex nonsense.

    Leave a comment:


  • JillC
    replied
    Re: Cleveland Clinic Mar 2 - ???

    Best of luck to all of you headed to or already in Cleveland this coming week..... Darlene, Dave, Snowflake....

    Leave a comment:


  • notaspecialsnowflake
    replied
    Re: Cleveland Clinic Mar 2 - ???

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

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  • I am Darlene
    replied
    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?

    Leave a comment:


  • I am Darlene
    replied
    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.

    Leave a comment:


  • carolinaviking
    replied
    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!

    Leave a comment:


  • I am Darlene
    replied
    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!

    Leave a comment:


  • carolinaviking
    replied
    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.

    Leave a comment:


  • carolinaviking
    replied
    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!

    Leave a comment:


  • I am Darlene
    replied
    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.

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  • Colorado213
    replied
    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!

    Leave a comment:


  • I am Darlene
    replied
    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.

    Leave a comment:

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