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kaytieg
@kaytieg

Posts: 5
Joined: Oct 17, 2018

Chronically Ill: Travelling by myself to Mayo Clinic FL first time

Posted by @kaytieg, Thu, Nov 15 4:08pm

Do anyone have any pointers on traveling while being sick. I’m very nervous about traveling myself. Normally someone would be with me but do to it being close to the Holidays nobody is financially able to go with me. Any suggestions will greatly be appreciated.

REPLY

Hi @kaytieg and welcome to Connect! It must be nerve-wracking facing traveling by yourself while sick.

While we wait for others to respond with tips and suggestions, you said you are traveling to Mayo Clinic. What condition will you be receiving a consultation or treatment for?

@ethanmcconkey

Hi @kaytieg and welcome to Connect! It must be nerve-wracking facing traveling by yourself while sick.

While we wait for others to respond with tips and suggestions, you said you are traveling to Mayo Clinic. What condition will you be receiving a consultation or treatment for?

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Cyclic Neutropenia

Hello @kaytieg, I would like to add my welcome to Connect along with @ethanmcconkey. Which Mayo Clinic Campus are you going to for your appointment? Rochester Mayo Clinic has Concierge Services that may be able to offer some suggestions or help with your travel arrangements:
https://www.mayoclinic.org/patient-visitor-guide/minnesota/becoming-a-patient/concierge-travel-services

If you don't mind sharing, what makes you the most nervous about traveling alone to Mayo Clinic?

John

Hello @kaytieg

If you are traveling by air, I would suggest that you contact the airlines. They can often offer assistance to passengers in getting through airports and making connections, etc. When you board the plane you might also consider a mask that will help protect you from the recycled air that is part of the airline experience.

I am so glad that you are being seen at a Mayo Clinic. They are an exceptional facility with experience in rare disorders.

When will you be leaving for Mayo?

@johnbishop

Hello @kaytieg, I would like to add my welcome to Connect along with @ethanmcconkey. Which Mayo Clinic Campus are you going to for your appointment? Rochester Mayo Clinic has Concierge Services that may be able to offer some suggestions or help with your travel arrangements:
https://www.mayoclinic.org/patient-visitor-guide/minnesota/becoming-a-patient/concierge-travel-services

If you don't mind sharing, what makes you the most nervous about traveling alone to Mayo Clinic?

John

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I'm going to the Florida, I really don't think it's one thing in particular. Thanks for the advice.

@hopeful33250

Hello @kaytieg

If you are traveling by air, I would suggest that you contact the airlines. They can often offer assistance to passengers in getting through airports and making connections, etc. When you board the plane you might also consider a mask that will help protect you from the recycled air that is part of the airline experience.

I am so glad that you are being seen at a Mayo Clinic. They are an exceptional facility with experience in rare disorders.

When will you be leaving for Mayo?

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I will be leaving in December, thanks again for advice

Hi @kaytieg,

I’d sincerely encourage you to check out discussions in the Visiting Mayo Clinic group on Connect:
https://connect.mayoclinic.org/group/traveling-to-mayo-clinic/tab/discussions/

Here are a few that might interest you:
– Making decisions about air travel when traveling for medical help? https://connect.mayoclinic.org/discussion/how-do-you-make-decisions-about-air-travel-when-traveling-for-medical/
– Tips for first dr visit and tests/appt schedules https://connect.mayoclinic.org/discussion/tips-for-first-dr-visit-and-testsappt-schedules/
– First visit to Mayo: Traveling alone https://connect.mayoclinic.org/discussion/first-visit/

@kaytieg, I agree with @kanaazpereira's recommendation to review the discussions in the Visiting Mayo Clinic group. In fact, I added this discussion to that group as well. I also modified the title slightly to bring in members who are patients at the Florida campus, like @debbraw @travelgirl @v1crew and @windwalker. I know they will have great tips to add about what to think about when travelling alone for getting around, going to appointments and more.

Thanks this has really helped out a bunch.

@kaytieg welcome to connect. Mayo Clinic is Jacksonville is where I go. Many of the hotels in area offer you a free shuttle to and from the hospital. Super Shuttle can transfer you from the airport to one of the local hotels. I would arrange all this in advance that way you are not stressing to get to appointments. You will be surprised how smooth appointments run at the Jacksonville location.. I will be there for 5 days after Thanksgiving. Anything you want me to check out for you? Let me know?

Wish you the Best..
Jackie

Hi @kaytieg – Welcome to Connect & welcome (in advance) to Florida. Where are you traveling from? I kind of have a hunch that our mild weather will be a welcome change and start your trip off right! I agree with the advice @travelgirl Jackie gave you as to contacting the airlines and making all of your arrangements in advance. Last year I had surgery at Mayo and I stayed at the Hampton Inn the night before – they give a discount for Mayo patients and also have a shuttle. I think the Marriott does too – as well as the Inn at Mayo Clinic (which is right there on campus). Any of those would make it easy to navigate back and forth to Mayo. While you are there, be sure to take some time to look at the artwork on the campus. There are beautiful outdoor sculptures and water features as well as peaceful, calming artwork inside the facility. It always makes me feel better just to be surrounded by that kind of beauty. Besides that, the doctors, nurses, and support staff at Mayo are just top-notch – kind, caring and happy to help. I hope your trip is a pleasant, healing journey. Please keep us posted. And if you hit any snags, shout out here on Connect. As you can see, you really are NOT alone. There are a lot of us here who are listening out for you and will be happy to help any way we can.

I wonder how many times it takes a patient with a Chronic illness to get a accurate diagnosis? Medical schools need to screen applicants and train medical students to do better by their patients by listening patient's complaints and using their professional knowledge to form a plan of care : Mottled skin, a objective sign of disease and localized or systemic will determine what labs and diagnostic tools to use.
I have come away discouraged with the medical field and think genetic testing should be implemented sooner. I was satisfied with Mayo's Pharmogentics and the doctor that explained the Oneome test results which I did find out I have : Factor V Quebec and thru Ancestry.com I was 3% Eastern European Descent Ashkenazi Jew! and probably Quebec "Founders Effects" Rare disease list of Maladies, which I still suffer with untreated with Systemic Livedo Racemosa ( new Dx.) and Scarred Cornea both eyes to Stroma level and Fatty Liver which no doctor will treat any of these issues. I will add a 2013 hard Clavicle lump peach pit size on L. superior located clavicle distal third irregular of cortex that was Xrayed and correlation recommended ? But as usual no one ever followed up?
I am still ill with new symptoms popping up like the blurred vision which was scarred corneas and know I will never be diagnosed until my death. If I had it all over to do again I would of went to Rare Disease Program. Good luck to any new comers to Mayo. Mayo patients can help with emotional support but i would think Mayo would offer RN's or SW for medical advocacy for the chronic ill patient to work on coming to diagnosis and quality of life for the patient.

Liked by ceclark41

@canderson12

I wonder how many times it takes a patient with a Chronic illness to get a accurate diagnosis? Medical schools need to screen applicants and train medical students to do better by their patients by listening patient's complaints and using their professional knowledge to form a plan of care : Mottled skin, a objective sign of disease and localized or systemic will determine what labs and diagnostic tools to use.
I have come away discouraged with the medical field and think genetic testing should be implemented sooner. I was satisfied with Mayo's Pharmogentics and the doctor that explained the Oneome test results which I did find out I have : Factor V Quebec and thru Ancestry.com I was 3% Eastern European Descent Ashkenazi Jew! and probably Quebec "Founders Effects" Rare disease list of Maladies, which I still suffer with untreated with Systemic Livedo Racemosa ( new Dx.) and Scarred Cornea both eyes to Stroma level and Fatty Liver which no doctor will treat any of these issues. I will add a 2013 hard Clavicle lump peach pit size on L. superior located clavicle distal third irregular of cortex that was Xrayed and correlation recommended ? But as usual no one ever followed up?
I am still ill with new symptoms popping up like the blurred vision which was scarred corneas and know I will never be diagnosed until my death. If I had it all over to do again I would of went to Rare Disease Program. Good luck to any new comers to Mayo. Mayo patients can help with emotional support but i would think Mayo would offer RN's or SW for medical advocacy for the chronic ill patient to work on coming to diagnosis and quality of life for the patient.

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@canderson12 First of all thank you for your venting on rare diseases It is so frustrating to be going to Dr.s and not getting a diagnosis or treatment. In medical school all Dr.s are not taught prevention just treatment. We have to be our own advocate for our health and don't take no for answer . I am a retired nurse who is disalusioned with the Dr,s I also have studied holistic herbs ,homeopathic medicine for along time . I have a website that talks about rare diseases if you care to look at it. https://rare diseases.info. nih.gov

@canderson12

I wonder how many times it takes a patient with a Chronic illness to get a accurate diagnosis? Medical schools need to screen applicants and train medical students to do better by their patients by listening patient's complaints and using their professional knowledge to form a plan of care : Mottled skin, a objective sign of disease and localized or systemic will determine what labs and diagnostic tools to use.
I have come away discouraged with the medical field and think genetic testing should be implemented sooner. I was satisfied with Mayo's Pharmogentics and the doctor that explained the Oneome test results which I did find out I have : Factor V Quebec and thru Ancestry.com I was 3% Eastern European Descent Ashkenazi Jew! and probably Quebec "Founders Effects" Rare disease list of Maladies, which I still suffer with untreated with Systemic Livedo Racemosa ( new Dx.) and Scarred Cornea both eyes to Stroma level and Fatty Liver which no doctor will treat any of these issues. I will add a 2013 hard Clavicle lump peach pit size on L. superior located clavicle distal third irregular of cortex that was Xrayed and correlation recommended ? But as usual no one ever followed up?
I am still ill with new symptoms popping up like the blurred vision which was scarred corneas and know I will never be diagnosed until my death. If I had it all over to do again I would of went to Rare Disease Program. Good luck to any new comers to Mayo. Mayo patients can help with emotional support but i would think Mayo would offer RN's or SW for medical advocacy for the chronic ill patient to work on coming to diagnosis and quality of life for the patient.

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Coordinated care in 2018 is more difficult; there seems to be less healthcare professional collegiality. Privacy regulations and legal action seem to limit our connections! I'm glad for these discussion groups! This week I'm trying to coordinate my primary care physician access with my two emergency department trips to the local hospital. Their patient portals won't talk to each other. I will make phone calls to each systems patient care coordinators. If necessary, I will order electronic copies of my two ED visits, print out copies for my primary physician and request that she look at the radiology reports very closely! Vigilant patient attention seems to increase my knowledge of my self and grow a huge paper pile! I do have at least one Rare Condition of which an ED physician advised me to seek more cardiology care. The Rare Disease with NIH.gov

@john @debbra thank you both for your support

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