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Advice wanted for overseas patient seeing Dr Klimas

Discussion in 'ME/CFS Doctors' started by Zuriel, Jan 5, 2012.

  1. Zuriel

    Zuriel

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    I plan to embark on a 20-hour flight to see Dr Klimas. Does anyone know of any self-contained accommodation and any eateries that sell gluten free meals near her clinic?
    Besides keeping myself hydrated through electrolyte drinks, what other do's and don'ts that I should be aware of? Any advice would be appreciated. Thanks.
     
  2. Ocean

    Ocean Senior Member

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    I've never been there. But I looked up her office. It seems it's somewhat close to a Whole Foods grocery store, where you should be able to find gluten free items. It seems like the closest one is about 1 mile or so away. I don't know if that's too far for you. I'm sure others who've been to Dr. Klimas will have much more useful tips. Hope the appointment will be a good one for you.
     
  3. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I just did a 16 hour flight to see a doctor. Book a wheelchair! It makes a huge difference in energy expenditure, they board you first, some airports have special facilities for those in wheelchairs (no lines), your "driver" helps you get through security etc. And it is much faster for any connections you make as the "drivers" take you on shortcuts thru the airport.

    Also I take powdered electrolytes and my own empty, large water bottle, then fill the bottle after passing security and pour in a packet of electrolytes. I use several packets per trip. Also eye mask and ear plugs for the flight and try to find a double seat after they close the doors on the plane--so you can curl up on two seats.

    For food on the plane, I've been ordering vegan, only because it should be gluten and dairy free. Otherwise, I take my own snacks. Also get an aisle seat so you can walk a bit and protect yourself from blood clots, as most of us have hypercoagualation. I also wear compression knee socks for this reason.

    Hope you do OK. It is a huge stain, but worth it.

    Best,
    Sushi
     
  4. niall

    niall

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    I will ask some of the staff at Dr. Klimas' clinic on Friday about the information which you need. Can you elaborate on what you consider self contained? How long do you anticipate staying in Florida during this trip?
     
  5. Zuriel

    Zuriel

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    Sorry, posted a reply last night but doesn't appear here. Anyhow, many thanks to Ocean and Sushi for your helpful tips and advice on long haul flight.

    Niall- self contained means 'furnished'. I'm hoping for an accommodation that comes with a furnished kitchen, complete with appliances and utensils. Would be good to home-cook due to multiple food intolerance.

    Will be in Miami for 8 days. Is there a website for short term apartment rentals? Thanks.
     
  6. Valentijn

    Valentijn Activity Level: 3

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    In the US there are often hotel rooms that have small kitchens, usually called kitchenettes. These should have the basic appliances (microwave, small stove top, kitchen sink) and a small selection of utensils and a pot or pan or two.
     
  7. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi Zuriel,

    I don't know if you are seeing Nancy in Miami or at her new clinic at Nova in Ft. Lauderdale. However, many US hotels that are near hospitals give reduced rates for patients. A friend of mine who is being treated for cancer by the Cleveland Clinic in Ft Lauderdale (where Nova is) is staying is such a suite (2 rooms and a tiny kitchen) at the Hyatt (I think it is the Hyatt) which gives reduced rates to patients at the Cleveland Clinic.

    Nancy's clinic may have some similar arrangement--particularly if it is either at the Univ of Miami or Nova Univ. I'll paste in something below from the Cleveland Clinic website to give you an idea of how it works.. I have worked at US hospitals and it is common for nearby hotels to give discounts to patients.

    Transportation & Accommodations
    Travel arrangements, including hotel accommodations and ground transportation from the airport, can be made for patients and their families coming to Cleveland Clinic Florida for medical care.

    Our staff can also assist with reservations at area hotels, offering our international patients and their families discounted rates.


    Best,
    Sushi
     
  8. niall

    niall

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    Zuriel, Kendall suites has one and two bedroom rentals with a full kitchen. I think they start at $155 a night. They may not give a discount if you are not connected to Baptist Hospital. I Googled, Short Term Rentals Kendall Florida, and a website called, Sublet.com came up. They showed an apartment which can be rented by the day ($95) or week ($665) which might suit your needs. The nurse practitioner at Dr. Klimas' clinic also mentioned the Whole Foods store for gluten free food. It is located at 11531 S.W 88th St. (same as North Kendall Dr.) which is about a mile west of the clinic.
     
  9. Zuriel

    Zuriel

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    Thanks, Valentijn, Sushi and Niall for your constructive suggestions. My parents and I would be very lost if not for all you helpful people out here, 9000+ miles from home.

    Sushi- I'll be seeing Dr Klimas at The Chronic Fatigue Center at N Kendall Dr in Miami. The clinic emailed me a list of hotels/suites within 4 miles of the clinic. None of them has a furnished kitchen and their rates are pretty steep. However, the apartment mentioned by Niall on sublet.com is exactly what we are after; fully furnished, ideal location and rates are reasonable. Clicked on Contact Owner & was told to sign up at a cost of $29.95 before I could do so. Shall discuss with my parents tomorrow morning. Will certainly be getting stuffs from Whole Foods store. Thanks, Niall.

    Also, can any of you tell me if I have to bring a letter from my GP for the prescription drugs that I'll be carrying? Are food products allowed through US customs?
     
  10. Valentijn

    Valentijn Activity Level: 3

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    You should never have to pay just for the privilege of contacting the owner to rent a place. Maybe if it's for a background check, etc, but that would be explicitly stated. That listing is probably a scam, but there may be other legitimate rentals at the same site. http://miami.craigslist.org/sub/ or http://miami.craigslist.org/vac/ is another place that might have a useful listing.
     
  11. niall

    niall

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    Zuriel, I'm sure that I am not alone in saying that I am amazed at the effort you and your family are making to see Dr. Klimas and we want the outcome to be as optimal as possible. In addition to yourself, how many family members will be traveling to Florida and in what month do you expect to be staying here.
     
  12. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi Zuriel,

    I agree you shouldn't have to pay a fee, keep looking! Another possibility: I don't know if this clinic has any affiliation with the University of Miami Hospital, but it wouldn't hurt to try this. Contact their International Center at the hospital and they may be able to help you or direct you to someone who can. I don't know if Nancy still "officially" is on the staff at this hospital but she may be:

    INTERNATIONAL CENTER

    The International Patient Service Center caters to all international patients who are
    self-pay or have special needs. The Center arranges and coordinates an array of
    services from medical appointments to transportation to hotel reservations.

    The Centers staff act as liaisons, offering specialized attention to all patients and family members while in the hospital.

    The Center offers on-call service, physician referrals, programs such as second
    opinions, and executive physicals, global self-pay packages, pharmacy services,
    and can also assist with embassy documentation, clerical assistance, and Internet
    access. For more information, please call 305-689-4500.

    I don't see an email address at their website but there must be one somewhere. Also, while many hotels don't have a separate kitchen area, the majority of the better ones will have a microwave and small fridge.

    Yes, if you are questioned and your bags inspected, you will need a letter from your doctor about the drugs you are carrying. In the US, every bottle of meds has your name, the doctor's name, the pharmacy's name and number, the dosage, and the number of refills allowed. Since you probably don't have this on your drug packages, you would need a letter detailing all that.

    Also, as far as bringing food into the States, customs goes absolutely "ape" over fresh fruit and vegetables, and probably meat that isn't in a manufacturer sealed package. Generally you are OK with manufacturer sealed packages but you might want to read on the government website to see if there is any restriction as to the type of packaged food. They also have a "thing" about wooden objects and having been on a farm. They will give you a form to fill out on the plane (there are samples on the web), but basically say no to everything--you haven't been near a farm, you aren't carrying wooden objects, you don't have fresh fruit or veg. etc.

    Whole Foods has lots of precooked foods and salads too, which can minimize cooking. I get an organic roasted chicken from them each week and make the most of it! They also have several areas of the store that are gluten free.

    At least with US citizens entering the States, I've always been able to just walk thru the green lane and have never been stopped. If you want to take the trouble, you can buy TSA locks for your bags. This allows security to open your bags without breaking the lock and they also "turn red" if they have been opened so you know they have been searched. I think they also put a paper in to say that your bag has been inspected.

    Hope this helps. Maybe some more Miami residents will see this and know of just the right place to stay.

    Best wishes,
    Sushi
     
  13. Zuriel

    Zuriel

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    Thank you all.

    Valentijn- Have come across vrbo.com ( Vacation Rentals by Owners), which is more user friendly than Craigs List. Unfortunately, VRBO has only one big condo available in Kendall for $139- $149 a night during low season, $159-$169 during high season. Is Jan/Feb considered low or high season? Don't require such luxury unless absolutely desperate.

    Sushi- Awaiting return call from the U of Miami Hospital International Center. Thanks for info on Customs' regulations which are similar to where I come from. Helpful to know Whole Foods has precooked gluten free foods. I hope they are also free from diary, eggs, yeast & soy, stuffs I have intolerance to.

    Niall- The appointments are for 30 Jan and 3 Feb. My parents are coming along to help me out as most days I have zero for energy levels and cognition- due to brain 'firing', some call it over stimulation or brain bombardment. I know the journey may break me so I'm taking a huge risk.
     
  14. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Usually, Jan-Feb would be low season but you never know in South Florida when a lot of people are trying to escape the snow.

    I bet you will do fine with your parents help on the long journey. You know you will have jet lag and major fatigue but I usually recover from these marathon trips in a couple of weeks--but of course it is individual. You could ask Nancy for a saline IV to help you recover. She sometimes gives them.

    Whole Foods seems to have choices that are free of everything you want to be free of--and still taste good. I asked my friend who is staying at a discounted suite in Ft. Lauderdale while her husband has cancer treatment, to ask her hotel if they know of anything similar where you will be.

    Can you take drugs to zonk yourself on the plane? That helps me. Or ask the flight attendant for a seat with more room to stretch out. On my recent trip across the Atlantic the airline upgraded my seat cause I was in a wheelchair. Be sure to stay hydrated.

    We will all be anxiously awaiting your reports.

    Best wishes,
    Sushi
     
  15. Zuriel

    Zuriel

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    Thanks, Sushi for all the informative tips which I wrote in my notebook. Been very unwell from those last minute searches. My parents said they will now take over while I go for a much needed rest.

    Pray and hope that this difficult trip will not be in vain, even though I know there is no guarantee and no magic bullet.

    Hope to keep you all posted when I get back. Thanks, folks.
     
  16. Ocean

    Ocean Senior Member

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  17. Ocean

    Ocean Senior Member

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    Zuriel, also, since you asked for advice, here's what I would suggest. You may already plan to do all this but I will share just in case. You said the trip is a big risk and I hope you can minimize your risk as much you as you can and hopefully return home without a bad crash. Sit down and lay down whenever you can. When returning from appointments lay down with eyes closed immediately even if you feel okay. Lay down in the back of cars or cabs on your way to and from appointments. Do nothing but the absolute most necessary things. Let your parents get you food and all that. I agree with the suggestions for a wheelchair. Try to sleep or recline with your eyes closed on the plane. Stay hydrated.

    Sushi, it's interesting to me how different all our PEMs are. I have had months long crashes from very minimal activity (like just driving a little in town for a coule days in a row). There is no way I'd recover from a crash from a plane trip in a few weeks. Actually there is no way I could handle a plane trip at all. It's so weird how similar so many of us are and yet so individual too, but I guess many illnesses are the same way. Sometimes I feel shocked and bad about how bad and long my crashes are when I hear what other people's bodies are able to handle. I get so caught up in my own limitations that I don't realize sometimes that not all other bodies are the same. I practice pacing religiously because of how bad and long my crashes are compared to the small amount of activity that triggers them. Okay, sorry for the off topic tangent.

    Zuriel, I don't know your level of functioning or what your pattern is with crashes, so I don't know how useful my advice is. But I hope you will get a lot out of this visit and just remember to rest, rest, rest, preferably laying down as much as you can. Even when you feel rested, rest some more just to be safe. Also if you stay in a hotel you could let them know you're ill when booking and ask them to try to give you a quieter room away from the elevator and things like that.

    Another option is to consider forgetting about the kitchenette, and just stay at a hotel with a minifridge (most have these) and get prepared foods at Whole Foods. They should have everything you need and then you may be able to find a cheaper hotel option if you don't need the kitchen.

    Best wishes on the journey.
     
  18. niall

    niall

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    Zuriel, As I live in the Ft. Lauderdale area, I have not been too successful thus far in trying to help you with your problem of accommodation near Dr. Klimas' clinic. January and February is the height of the tourist season in Florida so finding discount rental rates will be difficult. A lady I know who works in real estate suggested two websites: Hotels.com and Expedia.com. I may be able to give you more information by Friday.
     
  19. Zuriel

    Zuriel

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    Hi, I am Zuriel's mom and carer. He's having a major crash and has asked me to thank all you wonderful people who contributed
    helpful ideas and suggestions towards our upcoming trip to Miami. Unfortunately, we'll have to postpone the appointment as I just found out that his passport expired in November last year. He will not get his new passport on time to make the flight. Anyhow, this will give me more time to look up on suitable accommodations both in LA and Miami. Just added a night's stopover in LA just so he could have some rest. Your tips and suggestions do come in very useful in the planning. Thank you all once again. Cheers!
     
  20. niall

    niall

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    Zuriel, We share in your disappointment with the problem of your passport. It will get sorted out and you will get here one way or the other. You are most fortunate to have such support from your family. Please check your private messages if you have not already done so.
     

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