Back From Cleveland!

[babettess]

Hi Everybody,

Well I'm back from my appt. at Cleveland Clinic. It was a long trip but hopefully will be worth it in the end. I only got to meet with the doctor and I have to go back for testing so I really don't know anything more than I did before I went.

I do have advice for anybody planning on going.......

• Take a wheelchair as chairs are not provided at most of the check in/check out desks and you will have to walk alot.
  

• Take plenty of food and drink. I had to wait for hours in the exam room as the doctor kept getting called out. I crashed before we made it to the checkout desk. Only you guys/gals will understand when I say ,"What I would have given for a place to lay down ????!!!!" I had eaten all my snacks and drank my water before I was even seen by the doctor.
  

• Call the doctors office to see if you can be scheduled for tests the same day or day after your first appointment. I had called the main cardiology number and asked them if I needed tests could they be scheduled for the day of the appt. and they told me I didn't need any tests. Well then the doctor himself asked if my tests were scheduled for the next day. I told him that I had called and what had happened and he said I should have called his number.
  

So now I have to go back on March 27 for my big day of tests. I had blood work before I left CC and will do a 24 hour urine catch here at the local hospital. On March 27 I will have another TTT, a blood volume test, a hemodynamics imaging test, a Heart Rate Variability Test, a QSART and a stress echo. I will then meet with the doctor at the end of the day. (If I survive, that is. ) Of course I will have to wait for the results of some of the tests.

I feel like the doctor knew what he was talking about and I think I will like him. I wasn't thrilled about him getting called out of the room so many times, but I know that happens. He did say CC is one of the few places that do all of the tests that I am having done. I am scared of getting the tests, but anxious to get some answers. Anybody have any advice regarding these tests???? I'm very sensitive to meds and very scared about having to have the dyes.

I will keep everybody updated. Thanks for all the support.

Babette

[Ernie]

Hi Babette,

I had the QSART a few weeks ago. You just have to lie down on the table. They put a few patches on your body as well as some chemical product to see if your perspire. There is a small burning sensation.

The blood volume test is not painful. Again you are lying on the table and they take blood samples, inject an isotrop and take some blood again.

I did not have the other tests except many TTTs.

Good luck with your testing.

[babettess]

Thanks Ernie!!

Best wishes to you! I read your post from your trip to Mayo. I don't know how you did it alone. I do hope you get great answers and some financial help. I can't believe what your tests cost. Guess I will have an idea soon! AAWWGH!

Babette

[Ernie]

Hi Babette,

It was very stressful to go to Mayo alone as I was paying everything myself and if ever I would have been sent to the ER it would have been extra useless cost. So I was extremelly cautious. When I was out of meds I asked to be escorted to the different testing sites.

I know that a TTT cost from 2,000 to 7,000$ depending on what they do during the test. I would guess that you have between 7,000 and 15,000 $ of tests scheduled. I think you can call ahead of time and asked them.

Thanks

[mjan]

Just wanted to tell you that I support you and look forward to hearing how it went.

I dont know about all those tests..but God Bless you for your courage and ENDURANCE!!!

Good luck!!

Warmly Jan

[juliegee]

Best of luck. be sure to keep us posted on how things go and what you find out.

JUlie

[Sophia3]

when I saw Dr. Grubb in 2001, he got called out of the room alot during my visit..good docs are busy. Sorry you have to make another trip for testing. drag if you live HOURS away.

After some recent post about standing and sitting TTT, i am getting more impressed with CC. Though my own doc thought I shouldve done that rather than vanderbilt (did NOT want to be gone from home, my two cats for days so would not go to Vandy either) Grubb was good doc but useless to somebody who had been sick as long as I had though he and i were on the same page with how I had fought this stuff for years. But I wanted more testing so my local doc ended up ordering more things and only one that Grubb suggested..so ya never know.

Good luck with your tests and you will be FINE..maybe sick at the end of the day but the one day of suffering will be worth it to GET ANSWERS!

[Sunfish]

babette et al -

for a completely unrelated tangent, have i ever told you how much i love your name babette? not sure whether it's your actual name or just for the computer, but it's a name i've loved since first hearing it in french class some years ago. at one point i had wanted it to be my "french name" (when we had different names to use in class) & was bummed when someone else chose it first. i did like nathalie too (and still do to this day), but babette had been my first choice! how's that for something unrelated to the matter at hand?? ah well. but moving on.....

glad to hear that you made it to & fro your appointment okay, and glad that you have a good initial feeling about the doctor. i've been a patient of a variety of doctors at the clinic myself including the director of the autonomic lab dr. shields. if you don't mind i'm sure we would love to know who you saw? (you're obviously not under any obligation to share & it is entirely understood if you'd rather not, as i can certainly understand that not sharing can allow freer reign re: sharing experiences good & bad. some people incorrectly think that doctor names aren't allowed to be posted at all on the forum though which is not the case either. so share if you'd like, don't if you'd rather not, &/or feel free to PM me privately)

i am sorry to hear, however, that things weren't a bit smoother when it comes to logistics, scheduling tests, long waits, etc. can't say that any of it surprises me, nor is any of it the worst of what happens in the medical world, but that still doesn't make it any less of an inconvenience for YOU! after the fact i feel a bit bad for not encouraging/ suggesting different pre-appointment planning for you as well, but i suppose hindsight is 20/20, and in all honesty i'll admit that certain pre-appointment "protocol" so-to-speak is so automatic for me at this point that it doesn't cross my mind to pass on the info to others. so while the omission was in no way intentional i am still sorry for not having been able to help out more in advance! realizing that you may have no idea what i'm referring to, it's mostly the issue of who you had called & spoken to prior to your appointment in regard to questions you had about potential tests & the like. as you've now learned - and thoughtfully shared for others to store in their "how to survive as a patient" file - it's always best (though not always easiest!) to take any & all questions to the closest/ most direct possible source, i.e. the specific doctor's office/ secretary/ assistant rather than a departmental office or an appointment office. unfortunately this closest/ most direct number - and thus the best number - is not always (and perhaps even rarely) the number that is front & center in or on information that is sent your way or otherwise offered in the midst of phone calls and/ or other confirmation/ reminder notices you receive but instead often takes a bit of digging on your part to track down. this isn't always the case but it is certainly not unusual to hit some walls while trying to get to who you really want (& need!) to talk with; this extra effort is usually recouped in full though by better communication with the doctor/ office at hand in the long run and, as such, is almost always well worth it. obviously it's an imperfect system (surprise, surprise) when you as the new patient have to be the one who figures out the exact person/ place you need to call for tests to be scheduled in the best way, and realistically speaking even if you HAD called the doctor's office there's no guarantee that all of the right tests would have been scheduled more conveniently (aka as part of the same trip).

regarding your extra wait time that is certainly a frustration that many, if not most of us, can relate to & have experienced a few if not many times ourselves. you seem to have a pretty good attitude about it and you're right in realizing that it does happen & is unavoidable at times. i know for me the way a doctor & his/ her office handles it can make a huge difference in how i feel about it on the receiving end. i can also understand the difficultly though, regardless of how much you understand a situation, of a longer wait making it tougher on you & your body physically; it's something that i've certainly had to deal with on more than one occasion, as i'm sure many others have as well to varying degrees. that said, i will offer a bit of unsolicited advice for the future (for you &/or anyone else who might be reading ). most exam rooms have exam tables, in which case there is NO reason not to simply lay down if & when you feel the need to do so when waiting...whether for five seconds or five hours. based on what you wrote it sounds like you didn't have that option, and the fact that you may have continuously been thinking that it would have been "just a few more minutes" may have made it a bit more confusing than if you had known from the start how long you'd end up in limbo, but if/ when you're ever in the position of waiting for an appointment and needing to lay down there is NO reason not to tell the front desk, nurse, anyone you can find exactly that, i.e. "i NEED to lay down." if you simply ask &/or present it as a convenience, i.e. "do you have a place where i can lay down", "if you have a place where i can lay down that would be great", etc. it doesn't come across as nearly as important as if you present is as a necessity, i.e. "i NEED to lay down." that said, there still won't always be a place offered. and/or perhaps it's the sort of thing where you would like it but don't feel that you do need it quite enough to warrant asking/ demanding. bottom line being that - if you really need to do so bad enough & make that need known without success, you wouldn't be the first one to then lay down on the floor of the waiting room, office, you name it. it may look funny but i guarantee it causes a heck of a lot less stir than actually passing out. and oddly enough you might be surprised at how many people don't even seem to notice or care! best case scenario it can sometimes get you access to a better place to lay down b/c when people see you're willing to lay on the floor they realize that you really need to do so & aren't just in the mood for an afternoon nap.

one other thing to mention re: waiting is that you can often ask for an idea of how long it might be so that, if the wait is going to be particularly long you can at least go elsewhere for better food/ drink/ rest/ etc. many times if desks aren't willing/ able to tell you a specific/ defined "how long" they will tell you that you have enough time for a defined task/ excursion, i.e. they'll tell you have plenty of time to go get a drink, or go to the bathroom, or go for a short walk/ ride, or get lunch, etc. obviously this doesn't always work, and it sounds like your situation today was one of those times wherein no one expected the long wait as it kept getting longer & longer & longer little bits at a time.

but now re: the issue of the size of the clinic & the need for a lot of walking.....

as a frequent flier at cleveland clinic for years i do want to chime in with a correction re: any need to bring your own wheelchair. babatte i am certainly sorry if you had a conflicting experience &/or were somehow otherwise misinformed by someone who didn't have correct information, but while the clinic can certainly be overwhelmingly large - with appointments & testing in various locations requiring a good amount of back & forth - they make a point to have ample wheelchairs available for anyone who wants or needs them - patients, visitors, family/ friends, etc - as well as, if wanted &/or needed during, volunteers &/or transporters that will push you anywhere in or around the entire complex (though that's not mandatory; you're welcome to use the chair on your own as well).

during normal "office hours" all of the main entrances have numerous volunteers ready to assist anyone willing to accept the assistance. while, at a place of its size, there is simply no way that they can have empty/ unused wheelchairs & volunteers ready & waiting at each & every possible place they might be needed, there are few places that are far from some type of information &/or appointment/ check-in desk wherein any staff of volunteer is readily able to call for a chair; in most cases someone brings it within 5-10 minutes.

there are various additional transportation "helps" too that can be helpful depending on where you're coming from/ going to (shuttles, motorized carts, etc.) such that - as long as one isn't held up by not wanting assistance (something that i know can be an issue for some...i had a roommate once whose husband "couldn't" visit b/c his cardiac health limited how far he could walk & he refused to be pushed in a wheelchair , my own father would be much better off at times with wheelchair assistance when my inpatient room is particularly far away but wouldn't hear of it, etc) - the size of the clinic & the need to get from one place to another (and perhaps back again!) is something that may take some extra time and planning but should NOT be prohibitive nor should it worry anyone who doesn't already have &/or need their own wheelchair. similar to an airport (&/or anywhere else with a lot of extra walking), it IS a place - depending on where one's appointments &/or testing are located - that might require some people who are usually able to manage without a wheelchair to utilize the extra help.

re: what's available after hours, while the volunteers/ chairs/ help might be a bit less "front & center" so to speak it is still there for anyone who asks. it might take a bit longer for a chair to arrive, etc, but even if a long wait or late appointment leaves someone there "stuck" after hours there is help available to get anyone to where they need to go.

last but not least, while parking at the clinic can - depending on which building & lot one is dealing with - be quite the project in & of itself (aka it's not always particularly close), most if not all of the buildings with patient appointments have valet parking that - at least for anyone with a disability parking placard (temporary or permanent, from any state) - is rarely more expensive (and quite often less so) than parking on your own (i've done the math...essentially it works out that once you hit 2.5 hrs in the cheapest available lot you'll be paying just as much or more than the cost of valet if you have the placard; other lots hit that same price in even less time) so considering most clinic visits last at least a few hours, valet parking is generally the way to go. of course if i ran the world i would forbid charging for parking at any sort of hospital or medical facility at all, but that's here nor there. reality being what it is (which is that, as a hospital/ facility smack dab in the middle of a city, parking is far from free), for anyone that has enough issue with walking distances to have a disability placard valet parking is readily available for & usually won't cost you any more (and sometimes less) than parking in the lot. (for what it's worth - since i'm already rambling on with far more info than anyone asked for or cares about - i'll mention that one possible exception for my "valet is easier" advertisement may be - depending on the weather, one's personal preference, etc - the Crile building, aka "A building"; for those with a disability placard there are outside/ surface lots JUST outside the entrance that cost the exact same flat fee as the valet parking available on the other side of the same building. as such, while the lot isn't necessarily cheaper or easier than valet at the Crile/ A building, unless the weather is particularly bad this is the one case where valet doesn't provide all that much of an advantage either, which is all to say that in that particular locale it's largely a toss-up. personally i prefer just using the lot as it leaves the option of leaving, getting &/or putting things in &/or out of the car if needed, a convenience that wouldn't really exist with other lots anyway since they'd be so far away and, as such, isn't lost to valet assistance but which, with the crile/A lot so close, is potential reason enough for me to go with the lot. but anyhoo....

while no place is perfect & while - even at the best place &/or with the best intentions - people & needs can, will & DO slip through the cracks, as someone who has been a patient &/or a visitor at more hospitals & medical centers than can be good for anyone's health, as someone who is now actively managed by a care team at cleveland clinic i have been very impressed (as has my family) by the efforts of many of the employees & volunteers we have encountered to help patients/ families/ visitors manage the large campus that is the clinic. my mom - who, by her own admission, often looks (and quite often is) lost - reports that she rarely makes it through a hallway or corridor without at least employee or volunteer asking her if she needs help, people have gone above & beyond to help my mom (& thus me) juggle various combinations of me, bags/ medical equipment, & the car in the midst of scenarios ranging from brime time discharges to late night emergency admissions, and - perhaps my favorite - after my first appointment one of my now doctors (a senior attending who, after retiring from surgery, is now the director of the TPN Management Team) actually personally escorted my mom & me the entirety of the walk from one building to another to "point us in the right direction" and, as he was doing so, offered to help push my chair &/or carry bags (i was getting admitted). yes, the way things "should" be everywhere & always, but - as most if not all of us know - rarely the way they are.

well then, how's that for an extensive digression?! i certainly hasn't intended to get on a soapbox about the clinic but realize quite readily that i did just that. oops . for what it's worth - lest anyone think i have some sort of proverbial wool over my eyes & think that things are perfect at the clinic (or anywhere else for that matter) - i could EASILY write just as much and (loads) more on not-so-great experiences (aka bad, negative, nasty, horrible, disgusting, horrific - you name it!) from a wide assortment of medical facilities/ hospitals nationwide including some from the clinic; so no, i am not oblivious to the less-than-ideal reality that is life as a patient....perhaps it is in fact the number of negative experiences i have had (& heard about) that compelled me to ramble on so about a bit of the positive effort i have seen at one locale.

regardless, what i HAD meant to do was to simply share &/or clarify correct information re: the clinic's wheelchair/ transportation/ size situation, something that is relevant and which - in the midst of the rest of my ramblings - hopefully didn't get lost . and certainly if anyone every has any specific questions re: logistics of a clinic visit (what's where re: wheelchairs, parking, entrances, buildings, etc.) i'm more than happy to help in any way that i can.

stepping - or rolling - off my soapbox (at least for a spell...)

melissa

p.s. do you have any specific questions about the tests you'll be having? it sounds like you've already had a tilt table? in my experience nothing else you're having done should be any rougher than that, and most of the tests should be much easier. do make sure you understand in advance any meds you need to stop & for how long; it always pains me to hear of people who have gone through tests that are only minimally useful b/c they were for some reason on meds that they shouldn't have been on for the tests (or not quite as bad but still rotten, people who show up for testing & can't have it done b/c of similar issue with meds) SO...biggest advice from me is to make sure the rules re: stopping meds are 150% clear to all involved!! if you have other specific questions about certain tests don't hesitate to ask.

[babettess]

Hi Sophia,

Did I listen to you on "radio blog spot" or something like that??