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  • Cleveland Clinic Visit

    [Cleveland Clinic Visit]

    Author: Jerry Salzman (---.indy.rr.com)

    Date: 08-08-02 21:40

    Yesterday was my appointment with Dr. Asher at the Cleveland Clinic. It turns out that my HCM is even stranger than I thought. Besides the obstruction, my mital valve leaflets are extra long helping to cause the problem. Dr. Asher is not sure that a myectomy alone will solve the problem. It may require altering the valve, or (yuck!) a valve replacement. This rules out having an ablation, so there's one decision made for me.

    Now to me it is obvious that I need to do it in Cleveland. For one thing, the local hospital does 3 myectomies a year, while the CLeveland CLinic did 77 last year. I hope the HMO agrees with me. This may be a long shot since I spoke to the local surgeon the night before I went to Cleveland and he was confident he could do the surgery, but he also told me the valve was fine.

    I hope to get the surgery done ASAP, but I may have to wait until January when I can get out of the HMO. Any advice on getting insurance approval would be appreciated. Also, anyone who has stayed in Cleveland that has lodging suggestions for my family while I am in the hospital would also be appreciated.

    Jerry

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Cleveland Clinic Visit]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 08-09-02 09:50

    Jerry,

    Disregard my question on you other posting about your treatment path as it was answered here.

    Let Cleveland work with your insurance company, they have the resources to work on these matters.

    So I stand corrected on my last post, myectomy is an option. Interestingly we have had a few others like you with a great deal of MV involvement, some simply need the MV worked on and that resolves a great deal of the problem. It is rather rare and therefore is not discussed much on the board.

    BEST OF LUCK!!!!!!!

    I am so happy the HCMA was here to help you find the path to better treatment.

    All the best!

    Lisa

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Cleveland Clinic Visit]

    Author: Sarah B--Board Moderator (---.client.attbi.com)

    Date: 08-09-02 12:36

    Dear Jerry

    Since the local guy seems to think that your mitral valve (MV) is fine, and Cleveland Clinic (CC) knows that it is NOT, then you have an excellent case for going to CC and the CC will be able to help you through the HMO labrynth (sp?) and actually, the HMO _should_ be able to help you as well, but it is often better to go through the "doctor side" since they do it all day, every day.

    good luck and stand by your guns,

    Sarah

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    [Re: Cleveland Clinic Visit-place to stay]

    Author: Dawn (---.cl.ri.cox.net)

    Date: 08-10-02 16:12

    Hi Jerry,

    I live in the area and might be able to give you some info. How long will you be staying? When? Will you have a car? How cheap/expensive?

    I think there's a hotel on the Clinic campus? Does anyone have info about that?

    Email me with some info and we'll see what we can come up with?

    Dawn

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Cleveland Clinic Visit-place to stay]

    Author: Kay Ruth (---.as0.wlby.oh.voyager.net)

    Date: 08-10-02 17:06

    Hi,I also live in the cleveland area ,the clinic always sends complete info on hotels etc.the one at the clinic is about $85 a night and up. It is right across the street.There are a few others in the area a short drive away a little more reasonablely priced,also more expensive .Good luck , Kay.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Cleveland Clinic Visit-place to stay]

    Author: Jerry Salzman (---.indy.rr.com)

    Date: 08-11-02 08:37

    Kay / Dawn,

    Thanks for the info. We passed the hotel on campus and it looked ok, however one question. Is the campus area at night a good area. Some of the area driving from downtown to the clinic didn't look the best.

    Jerry

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Cleveland Clinic Visit-place to stay]

    Author: Tim S (---.dsl.dytnoh.ameritech.net)

    Date: 08-11-02 13:59

    For our first visit, we stayed at the InterContinental Hotel. The Doorman there told us that it was "safe to walk to the streets during the day". (We did not ask him about the nights). Since we were disappointed in the cost and accommodations of the InterContinental, we opted to check out early and stay the remaining nights at a Holiday Inn in Beachwood. The hotel was about a 20 minute drive from the CC Campus and offered more choices for eating dinner.

    Lynn's septal myectomy is scheduled for Aug 29. We will be up there for the entire week prior to the surgery for tests and the week after for recovery. At this point, we plan to stay once again at the Holiday Inn until the surgery. Hopefully, our 2 1/2 yr old can join us there. Once Lynn is admitted, then I may move over to the Guest House for proximity and send our daughter home with Grand Parents.

    - Tim

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    [Re: Cleveland Clinic Visit-place to stay]

    Author: Dawn (---.cl.ri.cox.net)

    Date: 08-11-02 18:47

    Hi,

    I'd have to agree with the doorman, it's ok to walk around during the day. The surrounding area is a little rough. Good idea to stay some where that you have more choices about eating and such.

    I checked the clinic web site, they have info about their hotel. There's also a link to a site about Cleve and hotels in the area. All of the places listed are less than 40 min to the clinic. Beachwood is east and I'm a west-sider. Cleve is a very east vs west with downtown as middle. So I would, of course, recommend the west/southwest sites. If Kay Ruth is from the east-sider we may see a good debate!

    Tim---my mom's myectomy is Aug 22nd, we should be leaving when you're coming in! Best of luck to you and your wife.

    Dawn

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Cleveland Clinic Visit-place to stay]

    Author: Jerry Salzman (---.indy.rr.com)

    Date: 08-11-02 19:39

    Wow guys, thanks for the advice. It sounds like August is myectomy month. By the way, who is going the surgeries. Dr. Asher mentioned either Dr. Lytle or Dr. Smeirda to me. I haven't heard which yet, of course then there's the fighting insurance thing.

    I have 2 boys 5 and 7 9/10th (his birthday is 8/25). We are still deciding whether to take them or keep them home.

    Jerry

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Cleveland Clinic Visit-place to stay]

    Author: susan (---.175-79.vldsgacbds.dial.optilinkcomm.net)

    Date: 08-11-02 20:41

    hey jerry, you might want to leave your kids at home, your wife is going to want to be with you in the hospital and you will probably want her there. btw when you call for hotel reseverations ask them if the have a medical discount. i know when i stayed in charleston i stayed at the days inn. there rate is 89 dollars a nite and i got it for 59 dollars a nite. just an idea. best of luck with your surgery. we will be praying for you.

    susan

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Cleveland Clinic Visit-place to stay]

    Author: Dawn (---.cl.ri.cox.net)

    Date: 08-12-02 08:15

    Hi Jerry,

    Dr. Smedira is doing my mom's surg and she also see's Dr. Asher. (very nice doc) Have not met Dr Smedira--yet!

    I agree with susan--don't bring the kids. Maybe if you have another visit that is not a long surgical. Cleve has lots of fun things, Science Center, a great zoo and the Metro parks are very relaxing (amazing there's that much 'green' around the city. There's also the lake, and Cedar Point (can you ride roller coasters if you have hcm?) I could go on, but I won't---Can you tell I'm born/raised in cleve and love my city?

    Didn't know there was such a thing, 'medical discount' I think that's great that they offer it. My thought was if you have a friend or family that work for a major hotel--employee discount?

    Are you going to try to fight the current isur comp or wait until you change in Jan? I don't know anything about that stuff, just curious if you'll be here in summer or winter?

    Dawn

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Cleveland Clinic Visit-place to stay]

    Author: Tim S (---.lexis-nexis.com)

    Date: 08-12-02 08:50

    Dr. Smedira is busy this month as he is doing Lynn's surgery under the care of Dr. Lever.

    It looks as if the Holiday Inn downtown (http://www.sixcontinentshotels.com/h...anchisee=CLELS) offers the best rate overall at $65 / night when you mention the Clinic. Their price is better than the guesthouse which starts at $89 / night. The down side is that $12/night parking fee downtown vs. free parking at the guest house.

    - Tim

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Cleveland Clinic Visit-place to stay]

    Author: Dawn (---.cl.ri.cox.net)

    Date: 08-12-02 09:50

    Tim,

    I'm guessing that you'll have a car since you're worried about parking? Why not get out of downtown and not have to pay for parking? Or do you want to be SUPER close to the clinic? I wonder if a differt Holiday Inn would offer the clinic disount? It never hurts to ask. I know there are a couple H. Inns on the west side off of the major highways into downtown. You'd be in a suburb area and out of the urban downtown.

    Dawn

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    [Re: Cleveland Clinic Visit-place to stay]

    Author: Tim S (---.lexis-nexis.com)

    Date: 08-12-02 10:05

    Yeah, we will be driving up from the Dayton, OH area. My parents will be coming up too so they can assist in entertaining our 2 1/2 year old during the out-patient testing week and will take her home when Lynn gets admitted to the clinic for the surgery/recovery week.

    When deciding where to stay, these were the things I was considering (listed in preference order):

    * Price (under $100 / night)

    * Proximity to restaurants and shopping

    * Swimming pool and other activities for Kayla (and her grandma)

    * Free Parking

    * Brand Name

    * Proximity to clinic

    * High Speed Internet (so I can access corporate system)

    We only have looked at a few chains but have not found anything better than Beechwood right now. However, not being familiar with the area, we welcome input on other locations and options.

    Thanks, Tim

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Cleveland Clinic Visit-place to stay]

    Author: Amelia Haynes (---.proxy.aol.com)

    Date: 08-12-02 12:32

    Jerry, I had mitral valve replacement at the Cleveland Clinic in October of 2001. The surgery was done by Dr. Smidera and according to our research he is the best. Dr. Lever made the arrangements for me. They had thought that a myectomy might also be necessary but once the surgery was begun, only a valve replacement was found to be needed.

    We and other members of my family stayed at the Intercontinental Hotel. They give a discount to CCF patients and the service there was great. A Limo was furnished so that we did not have to use bus transportation.

    Any assistence I can give, I will happy to give.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Cleveland Clinic Visit-place to stay]

    Author: Amelia Haynes (---.proxy.aol.com)

    Date: 08-12-02 12:43

    If any of you are interested check out the Patient Web Site available for CCF patients. You will find this mentioned in the Patient Info material given to you on your pre opt meetings. Every day we were able to post my progress and read good wishes posted by out friends. Day by day I looked forward to new messages and once I was able to walk to the waiting room I responded myself. Even after we were home and in a local hospital, a son took care of updates for me AND he lives in Europe.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Cleveland Clinic Visit-place to stay]

    Author: Jerry Salzman (---.treas.gov)

    Date: 08-13-02 15:14

    Tim / Dawn,

    Of of curiousity, how long did it take for the surgery to get scheduled. I just got a call from Dr. Smedira's office saying they wanted to schedule me for August 27th. They didn't know my insurance issue, so it all dpends on that, but I never expected such a quick date.

    Jerry

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Cleveland Clinic Visit-place to stay]

    Author: Lynn S. (---.dsl.dytnoh.ameritech.net)

    Date: 08-13-02 15:58

    Hi Jerry,

    As for scheduling the surgery it went like this for me: I talked with Dr. Smedira's office last Tuesday, August 6th and they scheduled me for the myectomy August 29th so about 3 weeks total. If you are able to have your surgery as planned (I know you have the whole insurance issue) then we will be there also starting on the 26th for meeting with doctors, pre-op testing and a heart cath.

    Lynn

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Cleveland Clinic Visit-place to stay]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 08-14-02 14:47

    This is a wonderfully informative string here!

    Amelia mentioned something very intesting, the web page offered to update friends and family on the progress of the patient. It was a wonderful idea and COMPLETELY PRIVATE. If memory serves me correctly you only allow those you want to view the page access and you are able to send and recieve messages.

    I found it wonderful when Amelia was in the hospital as I could keep up with her progress yet did not need to bother the family..who was busy caring for her. It allowed those who care about her to make sure things were well and let us all rest comfortable knowing she was fine.

    Just for the record..I am going to start the Amelia fan club....She is a really sweet lady not to mention her adorable husband Garland!

    To all of you in the Myectomy of the month club remember this tool at Cleveland and ask them how to use it...or you can simply post here on the board.

    My thoughts and prayers are with you ALL...your in great hands!

    Lisa

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Cleveland Clinic Visit-place to stay]

    Author: Kay Ruth (---.as0.wlby.oh.voyager.net)

    Date: 08-14-02 20:32

    Tim & Jerry, Beechwood sounds best to me ,15 mins from the clinic , good restuarants Pools etc.Parking at the clinic is $8.00all day,or a book of 5 for $30 or 10 for $40 . The hotel and guest house at the clinic offer safe transport to and from their hotels to the hospital after dark or early in the am. before surgery, we had to be there at 5am . If you stay off campus you have to drive there yourself,then pay for parking at the clinic.You don't have to pay to park at the Beechwood hotels. DR Smedira is THE best I think he does most of the myectomies Dr .Lytle is also very highly regarded ,either way you are in good hands. We are still back andforth to the clinic every couple of weeks as Jim is in constant A Fib since his surgery in May,Dr Lever wants to try another cardioversion,[ Shock treatment] in three weeks .I hope I answered some of your questions . To answer Dawn ,I am an east sider for the last 5 yrs but a west sider from Fairview Pk for 35 Yrs. and I miss it.. Kay
    NOTE: This is a post from the previous forum message board.
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