Already a member? Sign in
What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.
Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.
How - Joining Inspire is completely free and usually takes less than a minute. Join now!
Hi Everyone,
Thanks to your input and advice, I'm convinced that going to the Cleveland Clinic is the next right thing to do. Can any of you who have been there offer any advice about going there? Any detail would be appreciated. Thanks so much. Allie
Hi Allie, sorry I can't help, living in England as I do! I'm sure you'll get lots of info from the 'local' girls. I just wanted to say how much I love to read your journals, I hope you'll save each one of them and put them together, printed on real paper. Your life is fascinating, so are your experiences, keep writing, you have a gift.
Lidia xx
I was seen at the Cleveland Clinic in 2002 and the doctor was very nice. His name was A. Michael Lincoff.
I had a very positive experience.
Call & set up your appointment (every doctor there is excellent) then immediately call the CC Guesthouse for hotel reservations. Hotels in Cleveland can be expensive & they try to keep the guesthouse affordable. If money is an issue, there is a Motel 8 right off the I-90 in Mentor about 20 minutes away (east) from the Clinic for about $50 a night.
When you go into the Clinic, don't get overwhelmed. It's huge!!! They have directions so you can find where you need to be fairly easily but it almost reminds me of an airport terminal because of all the people. You may have a bit of a wait, I don't quite remember, but I think it was organized chaos & everything went relatively smoothly.
Take advantage of any tests they suggest. The doctors are all world class there. If they suggest follow up in a different dept, do it. They sent me to a microbiologist to have tests run. Trust me on this... they are amazing!!
I'm so glad you decided to follow up there. I wish every complicated heart case you go. They literally saved my life. My cardio from there moved on to run the University of Kentucky (I think) Heart Center so I don't know the current doctors names, but he told me (not cocky, just factual) that they all were the best available & I believe them.
There is a deli in the downstairs of the Guesthouse that has the best sandwiches in the world. They have a Mickey D's (yeah, the one bad judgement call) right inside the clinic & a cafeteria as well so meals shouldn't be to hard to find.
Good Luck!!!!!!!
Amy
Dear Allie,
This "just happened" to come up as a recommendation on my Amazon.com page:
http://www.amazon.com/dp/1401906702/ref=pe_606_12210850_pe_ar_d2
May the Blessings Be!
Sherrie
Thank you Lidia, I love reading every word you post as well. I quote you often to my family, referring to you as my British heart bud. I especially loved all that sheeple talk while I was away last week. we frequently baaaa at each other around here for exactly the reasons mentioned.
Eeyore, Thanks for the thumbs up and to Amy for the advice and encouragement. that's so funny about the McDonalds! One of the largest hospitals here has one as well. How long were you there? Did you have to wait days before seeing the Microbiologist? I guess I'm reaching for that feeling of some remote bit of control over my life again. Oh well....it certainly isn't dull.
And Sherrie, thank you for the book recomendation. Meditation, visualization has been a mainstay of my life for many years. Since all this, the idea of most of that just ticked me off! I've felt, "a lot of good all that did!" Finally after a literal week at the beach, I can almost, sorta, perhaps, maybe, a tiny bit, entertain a bit of positive thinking at least. At least in those rare moments when I'm not mad as hell. Just kidding, sorta.
Love, Allie
Hi Allie!
Nice to have you back, well rested I hope? It's me who's escaping to the beach tomorrow, we're having a week in a cheap hotel on the beach a bit further up the coast in Eastbourne. Taking coals to Newcastle, as they say over here (Newcastle is a coal mining town in the north). We've had a gloriously hot weekend, so the far flung family landed, I suppose I should be flattered that the sun coming out reminds them of me, but that would be foolish, the beach beckons them, not my scintillating personality! We had a crazy fun weekend but if I said I was sad to see them go, I'd be lying!
How are you feeling? Ready for the next step?
Take it easy,
Hugs,
Lidia xx
Once you are there, they move everything along super fast. If they want a another opinion from a different dept, they make a call & send you to that dept in your pretty gown & blue socks & get you seen that day. The results may take a few day 'cuz god knows what they are looking for, but they herd you from dept to dept quickly & efficiently (speaking of sheep). It's been a few years now, but I can't imagine that's changed. They are too large to have people hanging around for days on end, especially as their patients are from all over the world. Other than my open heart surgery, I think the longest I was there was 3 days & that included tests, angios & stents. I believe they ask you not to eat the day they see you so they can run any tests they need to. I could have been unique in that because I always needed an angio when I went. Get there!!!!!! They WILL help!!!!
Amy
Hope you're having as relaxing a time at the beach as I did Lidia! I'd love to move close to the ocean, but I guess I'd have the same family attraction you do! well worth it though I imagine. And Amy, I'm going. Thanks so much for the info. Another both frustration and validation form the cardiologist...was supposed to have mailed my medical records a week ago. Still need to get them from the hospitals. The time at the beach gave me some clarity, but I'll journal about that. thanks again and it's good to back with all of you! Love, Allie
I am a patient of the cleveland clinic. they are wonderful. you can call the general appointment number and they will connect you to the correct speciality department. I had to overnight them my medical records and cath and echo films and they called me within 24 hours to set up an appointment. they took all my insurance info over the phone and got everything precertified including testing before I got down there and scheduled all my doctors appointments and tests for the same day. They also sent me information on reasonable hotels in the area that had specials for patients of the cleveland clinic. I just went back there in fact yesterday for some worsening symptoms and I had terrific expereinces in my two trips there so far... the doctors and nurses take a very long time going over everything explaining everything etc etc.. on my initial visit my cardiologist spent at least an HOUR in the exam room with me and today she spent close to that as well, not rushed or anything.. and yes I saw a woman doctor who specialized in womens cardiology.
I go to the Florida campus but if you are go to the Ohio campus I got information in the mail that if you earn less the four times the poverty level.. which is like 90 grand for a family of four your treatment in Ohio, only is completely free. The CC sent that to me.
my doctor even called me today like 5 hours after I left the clinic to ask me more questions she thought of about my condition.
I am going back again next month and am very pleased to be a patient there and am confident I am getting the more progresssive state of the art treatment available.
Hi !
Did you ever get my email from my yahoo account? I frequently have problems with it but wanted to male sure you got it. I sent it about 3 weeks ago. My husband was just asking about you the other day.
Sharon
Hi Sharon, No I didn't get it, maybe you can send it again. Blessings, Allie
Hi Heartache,
Thanks so much. I just got my medical records from my cardiologist in the mail. All the lab work he told me two weeks ago was normal, was all out of whack. A very different story than he told me! I really like the idea of a female cardiologist. Who do you recommend? I looked at the list of females and there are a few to choose from (that in itself speaks volumns!) I'm about twelve hours drive from either campus so may as well go to Cleveland, though any excise to go to the beach is good for me. Seriously, it's a big trip either place and you've helped me feel more confident that they will be respectful of that fact. I can't imagine having that kind of time spent with me and a phone call after leaving! The treatment is free at CC in Ohio is incredible. Every woman here who diesn't have insurance needs to know that! All this has been so expensive even with insurance, I can't imagine having to wait to go see someone because of not having insurance, or not taking a med because of not havibng insurance.
Thanks again for sharing all that with me. Blessings, Allie
Hi, how did it go at Cleveland Clinic? Hope all went well. I have been seriously considering going and they will take me as I have insurance. I live in the SF bay area so it is quite a trip but if they are good then I will go - did you like your cardiologist? Any recommendations are so appreciated.
Best
Hi hopefully Searching,
I decided not to go, for now anyway, as I found another cardiologist and vascular surgeon who for now I like. The vascular guy is doing an arteriogram on my leg tomorrow in hopes of opening up the right femoral artery. Then the new cardio will have access and can hopefully open those remaining cardiac blockages. If this doesn't work, to Cleveland we go. It is scary to think of being that far from home (I live in GA), but this is scary stuff anyway. Have you decided yet? Allie
Hi Allie,
Best for tomorrow and your arteriogram! Great to hear you found doctors you like and trust.
I hear you on the issue of Cleveland Clinic being far away as I am in Calif.
I have not completed my work with Cleveland yet on review of my current health stuff, but if they want to take me and I can afford it I will greatly consider it. Think it depends on what happens next with them and their approach.
Good luck and blessings on tomorrow.
Karen
Thanks so much Karen. I imagine Cleveland is going to be even more in demand now that it has had its presidential visit! Take care! Love, Allie
Add to the discussion