My Mayo Clinic Experience and Tips I Learned Along the Way: Part 1
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- เผยแพร่เมื่อ 24 ก.ค. 2024
- In this video, I take you through my Mayo Clinic experience and tips and tricks that I learned from going. I was diagnosed with hyperadrenergic POTS and some additional joint issues when I was there, and will be going back at a later point to go through additional testing with medical genomics and cardiology. Stay tuned for that part 2, and I hope you enjoy!
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Hello everyone, I'm Kiera! I'm a law student that loves beauty, style, and most things nerdy but I also struggle with chronic illness and invisible disabilities. I have had a presence on IG for a few years, but have decided to branch out and start making videos. Through life's many battles, I have learned the power of faith and perseverance. Join me as I navigate this beautiful world one step, or wheel;), at a time! - ภาพยนตร์และแอนิเมชัน
Thanks for taking time to share this with your viewers. These are all great tips and the process can be very over whelming if you don't know what to expect. I am not sure where you live, but if you are anywhere near the Southern Minnnesota, Wisconsin, Iowa area, the Mayo Clinic Health System is available locally in those regions and connects with Mayo Clinic resources directly. We also have campuses in Arizona and Florida as well.
I hope all is going well for you and you are staying healthy. If we can ever be of any assistance, please reach out to us at www.mayoclinichealthsystem.org or www.mayoclinic.org
It took me 6 months to get an appt at mayo in Jacksonville, Florida. Terrible on boarding dissmisive process. There's such a long wait yet last appts are at 3 or 4pm?! In corporate America you are lucky if you leave the office before 8pm. Hire more doctors or take more patients later throughout the day if you are so backed up. Mayo clinic needs to step it up for their communities instead of turning everyone away for months on end and telling Dr's to not refer to mayo.
I never ever comment on youtube because of anxiety. But this video inspired me to collect all my 2000 plus medical records before going to mayo. It's given me a project I can control while I'm waiting to schedule and a good plan to advocate. Thank you.
Thank you so much for sharing! You have a new subscriber. ☺️ I’m finding the whole process of going to Mayo quite daunting. I’m glad you helped break it down for me.
Thank you for sharing your experiences. The tips are fantastic!
Thank you for this info. Wishing you the best of health. My daughter also has POTS.
i’m going soon and this is helping me a lot 💌
Thanks for sharing. Good information.
Can you please do a video on your expectations Vs reality regarding mayo clinic
Hi! Yes, I would be happy to - I also have had some more visits within the Mayo system so that can provide more context as well.
Very helpful
Great tips 💜
Thank you girl!!
Are there any hotels you'd recommend? The campus is so big I don't know which hotels I should be looking at reserving. Thanks!.
I go today. I have NF type 1, and being scared is an understatement
Thank you so much for sharing this. I just got referred to Mayo and one of my biggest concerns is that I struggle to make it to local appointments 1.5 hrs away. That's the only time I leave the house now, just when I have an appt, because of severe pain and other debilitating symptoms, (including being legally blind from one of the conditions). So, I don't know how I'm going to get there (10.5 hr drive, too risky for me to fly), much less go through several days of tests and appointments. I don't imagine I'm the only one to ever be referred in this condition, so I'm hoping they try to somehow make you comfortable enough to tolerate your visit. Any advice on this issue?
I wish you all the best and greatly appreciate you making this video!! 🌸
Thank you, I am so glad it helped! They definitely help you when you get there - they're really great with providing mobility aids, people to help you get around, etc. I would highly recommend staying at the Mariott hotel attached to the clinic building. There is a beautiful subterranean walking area to get from the hotel to the clinic that is highly accessible and very safe.
@@thewillowrunlife8339 thank you for replying and the advice! I was denied an appt because "their demand exceeds their capacity", but my doctors are trying again. I don't know that I even care about going right now, because we finally know what's wrong me. If we were still trying to figure it out, like the past 11 years, I'd be 100% on board, but now I'm not sure it would be worth the effort.
I'll keep your tips in mind if they ever get me approved. Best wishes!!
i just got my week booked for february and i’m a bit nervous !
Hi can you tell me , what is your chronic illness ? I’m thinking about visiting Mayo Clinic in Arizona. I have silent acid reflux. Any information will help. Thank you::
I live in Las Vegas and was misdiagnosed for 2 years in local hospitals and a rehab center. When they finally diagnosed correctly, I had all hospital and all doctors records faxed to the Mayo. They correctly diagnosed me in One Day. The place is incredible, have your questions - however be very open minded. They are non-profit so they have zero motive to run you in circles. Eventually I received a Double transplant and a carotid artery surgery. If you do not understand something or you are questioning anything always speak up. Their staffing ratio is so much better in every area. Good luck - do not procrastinate - your health is important.
How did you get appointment? I've been trying since December and they keep telling me in every department that they have no appointments available. I'm so frustrated!
I'm getting referred there right now. It seems like it'll be a long, somewhat painful process, but they said after the paperwork and interview are complete, they will schedule an appointment anywhere from 2- 12 weeks depending on urgency of condition, availability, pre-approval, etc. If you don't already have a doctor's referral, I would highly recommend talking with your doctor and getting one, and then they'll call and get it set up for you. If you do have a doctor involved, tell the doctor/his staff that you're having trouble getting an appointmentt and ask if they'd fax an urgent referral.
I second everything that Rls0523 mentioned and went through a similar process. Initially, I was denied in the main system and then went through the neurological department independently and got in, I think I also provided additional information from my doctor.
Yeah, I got an email saying their demand exceeds their capacity, so I won't be going right now either. 😡 What a waste of time, money, and energy I don't have. I'm giving up...Maybe that'll make it a bit easier for you to get in 😆. Good luck!!
Your doctor needs to call them. It took multiple doctor phone calls and five months from my daughter to finally get scheduled.
@@thewillowrunlife8339 I may end up going that route as well, now that I've had a brain hemorrhage and while in ICU had 7 blown IVs. One of my doctors suspected I have Vascular EDS. I was pretty certain I had hypermobile, but not sure about vascular, so I figured if anything maybe I'm a combo type. I'm still waiting to see a neurologist in my State after the hemorrhage. (90+ days to see any of them, but the hospital discharges with 30 days of meds and says its imperative you see a neurologist within 30 days. You can't tell me the doctors don't know that's not possible. Just another medical run around, meanwhile you run out of meds they say your life depends on and that you can't stop cold turkey. 🤷🏻♀️)
If the neurologist they set me up with here doesn't know anything about EDS, I might try Mayo again. Although, I don't think there's much they could do?
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Thank you for reading !