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  • What to expect at Cleveland Clinic?

    [What to expect at Cleveland Clinic?]

    Author: Karla (---.proxy.aol.com)

    Date: 10-01-02 07:40

    Hi, All,

    Well, I am happy to report that hubby has FINALLY made a decision to go to Cleveland Clinic to see a specialist. We are in the process of finalizing plans. I'm a little dissappointed that I will not be able to go with him, due to finances -one plane ticket is cheaper than two. That will be tough on me, as I am always by his side ....but, the important thing is that he IS going!

    When I called to inquire about the appointment, they told me it would take a minimum of 2 hours. I know many of you have gone there and would appreciate it if you could tell me what he should expect.

    Also, did you take the actual 'tapes' of previous tests done, or just the reports?

    Is it more helpful to send them ahead?

    Thanks in advance for sharing!

    Karla

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

    [Re: What to expect at Cleveland Clinic?]

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

    Date: 10-01-02 09:47

    Hi Karla!

    I am so happy to hear that your husband is going to see a specialist! And of course, I'm partial to Cleveland Clinic because I see Dr. Lever and just had my myectomy done there Everyone is so impressive there, as soon as we arrived for my first visit I felt nothing but complete confidence and a huge sense of relief that *finally* I was someplace that understand my disease.

    Each of my experiences with CCF has went something like this:I receive an 'itinerary' of my days appointments with times and locations in the mail well in advance of the appointment along with a reminder phone call a few days prior. CCF is a very busy facility BUT it is extremely efficient; like a well-oiled machine. However, to be impartial I will tell you that I usually take the times on the schedule as a general 'idea' of when they will occur; especially when meeting with the doctor. The times are usually off (although testing runs pretty true to the listed time) as the doctors are making rounds and will not typically 'rush' through appts. which is good when it comes to yours. I suggest taking a book, something to drink/eat with him unless his testing prohibits otherwise. The cafeteria, which is really quite decent, is nearby but not if you're waiting for your name to be called. Unless he really doesn't have but a couple of items on his schedule, I would plan on it being an 'all day' event at the Clinic.

    As for reports and tapes being taken or sent in advance - I had as much sent prior as I could and took the rest (including a TEE video) the day of the appt. Dr. Lever's office additionally called my local doc's office and had some things sent to him in advance as well. I had sent, or took with me, everything I could get a hold of so I did have videos taken. Part of the reason Dr. Lever was late getting into my appt was that he was reviewing all of the documents and watching videos before walking in to see me. It made a big difference in our consultation. What answers he didn't have from them he made sure was captured in my testing that day.

    OK, I've rattled on long enough, my apologies, I hope this information is helpful. If you would like to discuss anything further, please feel free to email me!

    All the best,

    Lynn Stewart

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

    [Re: What to expect at Cleveland Clinic?]

    Author: Karla (---.proxy.aol.com)

    Date: 10-02-02 07:08

    Dear Lynn,

    Thanks for your input and info! Spoke with the Clinic yesteday, and I'm already impressed at their effeciency. Hubby's appointment is November 13th - the earliest he could get in. The gal I spoke with told me to expect a full day for hubby - they have scheduled stress test, 2 echo's (one being 3D that Dr. Lever likes to do) and most likely a 48-hr. holter. She had spoken with Dr. Lever and called me back to tell me that he would like the tape of the echo done here when hubby was diagnosed back in May.

    I already feel somewhat of a sense of relief knowing that he is finally going to be in very capable hands and all of our unanswered questions will be addressed.

    Hubby's symptoms seem to be worsening as of late, so I don't think that it's any too soon that he is going. I'm hoping and praying that something can be done for him to get him feeling better!

    Thanks again!

    Karla

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

    [Re: What to expect at Cleveland Clinic?]

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

    Date: 10-02-02 10:11

    Dear Karla,

    I'm happy to hear that you've spoken directly with what may well have been Lever's office, they are wonderful! A full day sounds right, it's very tiring but worth it because then Dr. Lever has nearly all the info that he needs (except the Holter results) to make reccomendations that day if he sees your husband at the end (which he made sure to do with me). The folks running all of the testing are fabulous and make it go as quickly as possible.

    I participated in the 3D echo as well during my last trip up to Cleveland. They are working on using that technology to help them diagnose and research HCM. It's really very interesting! They ran the test pre-myectomy for me and then post-myectomy while still in the hospital. To the patient it just seems like a normal echo being done, it might take just a little longer but that's all.

    I know Nov 13th seems forever away but hopefully as your husband begins making travel plans, etc. the days will pass quickly. I hate to hear that his symptoms are increasing right now and will be thinking good thoughts for good health! Myself I noticed that before I headed to Cleveland (both for my evaluation with Lever and my myectomy) that my symptoms increased and worsened. I think mine was due in part to stress as well as being able to finally stop ignoring them long enough to say, "ok, may be I really do feel rotten enough that I need to get some expert help". He's headed into excellent hands at Cleveland and with Dr. Lever. Just remind him to something with him that day to occupy his time while he waits between appointments!

    All the best,

    Lynn

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

    [Re: What to expect at Cleveland Clinic?]

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

    Date: 10-03-02 06:49

    Lynn -- you make a good point and one I see often. We spend much of our lives "acting" like everything is fine -- so we often do not allow ourself to feel "sick". When the choice is finally made to get to a specialist we become a little more honest with ourselves and acknowledge the symptoms that we had long shcrugged off.

    I have seen this hundereds of times. I do not think we do it knowingly... I think it is deeper than that, but I know it happens.

    Well off to packing for me I have a full day that will end in MN for the big meeting!!

    lots planned, lots to do, many to see and so much to learn!!!!!!!!!!!!!!

    Lisa

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

    [Re: What to expect at Cleveland Clinic?]

    Author: Karla (---.proxy.aol.com)

    Date: 10-04-02 07:49

    Dear Lynn,

    Yes, when spoke with the gal at CC, she mentioned the 3-D echo being done for hubby...she said that Dr. Lever has a certain 'agenda' for his HCM patients. Again, it was so comforting to know that he will finally be in CAPABLE hands.

    Lisa, Lynn...I think you two bring up a good point....I think that hubby finally quit swimming in the "river of de-nial" and finally admitted to himself that he felt rotten enough to seek some expert help! It's interesting that since we made the appointment for CC that he confessed to me how he truly is feeling. It made me want to hit the panic button - I wanted to take him to the doctor or ER, ASAP! But, he reasurred me that his pain/symptoms are nothing 'new'- he lives with it everyday - and he'd let me know if there were any changes that needed immediate medical attention.

    I'm just so relieved that he is going to go. I'm hopeful that something more can be done for him and he can get some 'quality of life' back.

    Karla

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

    [Re: What to expect at Cleveland Clinic?]

    Author: Sarah B--Board Moderator (---.n-usslc12.stsn.com)

    Date: 10-04-02 08:29

    Dear Karla,

    Your husband's emotional road is very common and many people are finally comfortable to feel what they are feeling once they are getting to a specialist.

    keep us posted

    Sarah

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

    [Re: What to expect at Cleveland Clinic?]

    Author: Howard Mirchin (---.proxy.aol.com)

    Date: 10-08-02 13:03

    Dear Karla:

    I was recently at the Cleveland Clinic for a consultation with Dr. Lever in the middle of September. Dr. Lever's thoroughness and thoughtfulness was incredible. Prior to Dr. Lever's vacation in August he called me on my cell phone at 9:00pm at night in his office to set-up a visit to see me after he reviewed by stress echo-films. What doctor calls a prospective patient at 9:00 pm at night. Prior to the scheduling I received a detailed schedule of my appointments including chest X-ray, EKG, Echo & Metabolic Stree-Echo along with 2 consultation with Dr. Lever over the course of 2 days. I am currently scheduled for a myectomy and the maze procedure in November and have already received a detailed schedule of pre-op tests along with a consultation with Dr. Lever and Dr. Smedira. Hope everything goes well.

    Howie
    NOTE: This is a post from the previous forum message board.

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