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

Posted by kaytieg @kaytieg, Nov 15, 2018

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.

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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.

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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

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 . here is a website that talks about rare diseases if you care to look at it. https://rarediseases.info.nih.gov

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@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

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@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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Yes, I'd just like to add that I've never experienced such a comprehensive and high quality facility as I did at the Scottsdale/Phoenix Mayo Clinic. There is a very good documentary on the history of the Mayo Clinic that shows how they developed there unique attitude. And by the way, the are a non profit hospital.

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@lioness

@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 . here is a website that talks about rare diseases if you care to look at it. https://rarediseases.info.nih.gov

Jump to this post

I have declined in my ability to function that the thought of going to a different doctor is null. I am 62 on Medicare and have called every agency that I could resource online and phone book to find a Advocate, someone with medical knowledge that could go over all my medical records and speak with the doctors on my behalf with me present but I have found no such help. I was a RN before i went on disability and had a full pysch workup as some of my primaries thought with all my symptoms that I was a Hypochrondriac! The pysch I last saw told me " You are not a Hypochrondiac! You have serious medical issues that are not being addressed, you are not being heard! Which I already knew but was a good patient that did what my doctor wanted. I am well aware what goes on in the medical profession and like all groups there are the good and the bad.
Lastly, tell me if a patient calls her Onc/Hem on 2nd day of taking Bactrum DS with facial rash, red swollen and burning and leaves a message that day and the day after and she recieves no call back on how to care for the rash which looks similair to Stevens Johnsons syndrome rash . This is what happened to me.I stopped the antibiotic and took care of this myself at home for 30 days as I was too ill to take myself to ER. And you wonder why my hopes have faded. There is such a thing as Patient Profiling and why i would be classified as such is unknown to me as I have never abused drugs or people.

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@canderson12

I have declined in my ability to function that the thought of going to a different doctor is null. I am 62 on Medicare and have called every agency that I could resource online and phone book to find a Advocate, someone with medical knowledge that could go over all my medical records and speak with the doctors on my behalf with me present but I have found no such help. I was a RN before i went on disability and had a full pysch workup as some of my primaries thought with all my symptoms that I was a Hypochrondriac! The pysch I last saw told me " You are not a Hypochrondiac! You have serious medical issues that are not being addressed, you are not being heard! Which I already knew but was a good patient that did what my doctor wanted. I am well aware what goes on in the medical profession and like all groups there are the good and the bad.
Lastly, tell me if a patient calls her Onc/Hem on 2nd day of taking Bactrum DS with facial rash, red swollen and burning and leaves a message that day and the day after and she recieves no call back on how to care for the rash which looks similair to Stevens Johnsons syndrome rash . This is what happened to me.I stopped the antibiotic and took care of this myself at home for 30 days as I was too ill to take myself to ER. And you wonder why my hopes have faded. There is such a thing as Patient Profiling and why i would be classified as such is unknown to me as I have never abused drugs or people.

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Hello @canderson12

I am sorry to hear of your difficulties. I am glad to hear that your rash subsided when you stopped the med, however, you need to see a doctor. In the future, it would be good to make some plans for transportation to an ER or a walk-in clinic when you are experiencing problems of that type. Most communities have some type of senior assistance programs for transportation or perhaps a neighbor, friend or your place of worship. You might also call your local senior assistance agency in your community to see if there is anyone who can help advocate for you and assist you with transportation.

Please remember that is it always your right to get a second opinion.

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@canderson12

I have declined in my ability to function that the thought of going to a different doctor is null. I am 62 on Medicare and have called every agency that I could resource online and phone book to find a Advocate, someone with medical knowledge that could go over all my medical records and speak with the doctors on my behalf with me present but I have found no such help. I was a RN before i went on disability and had a full pysch workup as some of my primaries thought with all my symptoms that I was a Hypochrondriac! The pysch I last saw told me " You are not a Hypochrondiac! You have serious medical issues that are not being addressed, you are not being heard! Which I already knew but was a good patient that did what my doctor wanted. I am well aware what goes on in the medical profession and like all groups there are the good and the bad.
Lastly, tell me if a patient calls her Onc/Hem on 2nd day of taking Bactrum DS with facial rash, red swollen and burning and leaves a message that day and the day after and she recieves no call back on how to care for the rash which looks similair to Stevens Johnsons syndrome rash . This is what happened to me.I stopped the antibiotic and took care of this myself at home for 30 days as I was too ill to take myself to ER. And you wonder why my hopes have faded. There is such a thing as Patient Profiling and why i would be classified as such is unknown to me as I have never abused drugs or people.

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@canderson12 I'm glad you took matters into your on hands and cleared up your problems You know your body better then Dr. Is there an Office of Aging in your area they might be able to give you some information .

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