Share this:
devsmaj
@devsmaj

Posts: 8
Joined: Sep 23, 2018

Booked Mayo for My Son - Now Frightened

Posted by @devsmaj, Sep 23, 2018

Hello, everyone. My son has been suffering from an unknown illness for over 3 years. He is now 20. After giving our Canadian health care system 3 years to try to find out what is wrong with him, we give up.
Now that Mayo has been booked, I am finding myself afraid. I am afraid that we wil go there, spend an enormous amount of money (I am a single mom whose income taxes pay a great deal to the healthcare system in Canada already – it is not “free”), get our hopes up once again, and the doctors there will not be able to find a cause either. Mayo has always been in our minds as the “last resort”; the “end of the road” – this is it. What if they dont find what’s wrong either? My son has been let down so many times, hoping we finally found the cause of his troubles. He has expressed that he does not and will not live the rest of his life “like this” – I am so scared and am praying to God every day that the specialists there can help him. Thanks for hearing me out.

REPLY

@peabody88

@gingerw – Thank you very much; the compliment was very much appreciated. It's always nice to think that just maybe, the pain and challenges you went through can somehow help or teach others (without quite as much pain/heartache you had to go through to figure them out). And going through some recent health issues myself, that compliment and little boost of confidence and "warm fuzzies" means even more!

Jump to this post

Sending lots of "warm fuzzies" your way today, @peabody88

So…. little disappointed. We had originally booked for October 29, but now I find out that we may have to move it because Mayo doesnt have an appointment with gastro for him on that day. It is a 10+ hour drive for us to go there, so we need to have all appointments possible in the same week. This is so frustrating.
I already booked holidays from work and the hotel, my son has notified his employer (he has to take time off without pay). Ug.

@devsmaj

So…. little disappointed. We had originally booked for October 29, but now I find out that we may have to move it because Mayo doesnt have an appointment with gastro for him on that day. It is a 10+ hour drive for us to go there, so we need to have all appointments possible in the same week. This is so frustrating.
I already booked holidays from work and the hotel, my son has notified his employer (he has to take time off without pay). Ug.

Jump to this post

@devsmaj Ask them to put you on a cancellation list for the days you are there, in case opening comes up with the gastro Dr. Is there a social worker or patient advocate that can go to bat for you, explaining your circumstances?
Ginger

@gingerw

@devsmaj Ask them to put you on a cancellation list for the days you are there, in case opening comes up with the gastro Dr. Is there a social worker or patient advocate that can go to bat for you, explaining your circumstances?
Ginger

Jump to this post

Hi Ginger. The person who seems to be trying to get us in on the booked date is the “Patient Appointment Coordinator” in the International Appointment Office. I think she is trying. I am not sure how long to keep trying for before we just move it. I would prefer to leave it on October 29, but dont want to leave it too long in case we end up too far into November – I am already going to be possibly battling winter highways as it is – It snowed here today where i live. Boo Thanks for the ideas – maybe I will check with the Coordinator to see if she knows the “chances” of a cancellation and just leave it where it is.

Hello @devsmaj,

I'm so glad you've reached out to the Connect community – as parents, we do everything we can to try and keep our kids healthy, so it can be devastating to see a child fall ill and in pain, despite everything.
Since you mentioned that you reside in Canada, I was wondering if you knew about these services offered by Mayo Clinic:

– Mayo Clinic Information Service in Canada: Canadian patients are provided timely appointments with specialists who work together to provide comprehensive care that meets the exact needs of each person. https://www.mayoclinic.org/departments-centers/international/locations/canada

– Independent Referral Facilitators for international patients: Mayo Clinic works with independent referral organizations that facilitate the referral process for patients to all its campuses. These referral facilitators work with Mayo Clinic to establish a reliable process for assisting patients who wish to visit Mayo Clinic for health care services.

In Canada:
MyCare
http://www.mycare.ca
Address:
Suite 102, 1371 W. Broadway
Vancouver, British Columbia
Canada V6H 1G9
Phone number: 877-497-9495
Contact email: mayo@mycare.ca
Contact person: Alyssaa (Lisa) Delmars
https://www.mayoclinic.org/departments-centers/international/locations/independent-referral-facilitator-canada

I wish you and your son all success; please keep sharing any updates, and/or questions you might have – we're here, listening.

Hi @devsmaj, I wanted to check in and see how you are doing. Did you get your appointment sorted out?

Hi my son is 27 years old and has been mayo clinic patient for 24 years. He has rare genetic disorde diagnosed at mayo clinic. Nobody else could diagnose him. S I have been through so many mayo clinic departments. What you get is the best doctors in multiple specialties that talk to each other. So I think its good to come down and go through the consultations and testing. Sometimes the answers take awhile to emerge. But they don't give up even after you have gone home. When you are a patient at mayo clinic you are automatically involved in research too because all the doctors are involved in research. They might talk about your case at a seminar to ask for help. If you don't get the answer the first time then plan on making a follow-up appointment. There's often follow-ups at regular intervals. I follow-up in endocrinology, ophthalmology, and sleep medicine. My son has follow up in ophthalmology, cardiology, and medical genetics. I do think they try to relieve symptoms and stabilize patient suffering. Then they try to heal. If they can't heal then they treat the symptoms to increase quality of life. You can certainly expect that they follow the gold standard in whatever treatment they provide. I also recommend some of the longer stay hotels that have a weekly rate. Most small hotels share a shuttle service to Mayo and St. Marys. Get a room with a kitchen and cook your meals. This will cut down your costs. I often stay overnight when I have follow up and I always get moderate priced rooms.

I completely agree. My 24 year old has CG, we spent 12 days in MN, and I cannot say more about the high quality treatment, thoroughness, and deep care each dr gave us. I think we saw someone in every department but worth what was to be a 5 day stay to a 12 day.

iWhat are his symptoms? Hospitals in Boston are suppose to be good if you can stand Boston people.

@devsmaj l know it's hard when you can't get the answers you want and you keep pursuing but the Mayo Clinic was the best place l have been too. And l have been fighting with medical conditions for awhile. Matter affect l just came back it will be a week tomorrow. I saw the gasternologist and he was the one that told me about what was going on while my doctors was misdiagnosing me. Matter of fact all the diagnoses the mayo clinic ruled out in my home state they are all of a sudden coming back. And they can keep all my diagnoses straight. I go to the doctors office or maybe went to the hospital the doctor discharges me and it says one thing and then they put something different to my insurance. I will question the doctors and they can't answer. This has even been done at the hospital my daughter works at. So l think you really will like the Mayo Clinic. The doctors are concerned about the patient and the make sure you understand. The doctors l went to never rushed me out. I pray you get the help and answers for your son and especially feel peace.

@devsmaj

Thank you, Colleen. My son has been scheduled to “Internal Medicine” but no further info from there. From what I understand, he will be assessed by a physician there, then tests and other doctors are scheduled based on that assessment. I have to put $7000 USD down before we even arrive (almost $10K CAD). The tests and procedures my son has had here in Canada are all gastroenterology-related: 3 gastroscopies/endoscopes, barium swallow, ultrasound, 24 hr ph study, impedance test, gallbladder and liver study (HIDA scan), manometry test, MRI of pancreas and midsection, 12 biopsies of stomach, polypectomy (stomach), H Pylori test, test for celiac, numerous blood tests, we have tried low fodmap diet, gluten free diet, … i may be forgetting some. All basically gastro. I am beginning to think this is not gastro-related as i dont think there are any more tests that could be done. He is nauseated 24-7 (no nausea medications work), he does have a very weak esophageal sphincter but no acid reflux symptoms, is very slender and lost an additional 30 lbs since this started, has low stress tolerance (and once had very high tolerance – he was a competitive athlete), trouble sleeping, back pain, muscle cramping (not severe)…. Nausea is the #1 concern. Thanks everyone for listening. Im just scared that Mayo Clinic – the best medical care in the world – wont be able to help him either. Yes – I am trying to think positive but am so scared. They HAVE to find out what this is. They just HAVE to.

Jump to this post

I would be nervous if I I had to come up with 7000.00. Have you heard of medium accurate ligament disease support group (MALS) on Facebook? Many of us with this rare condition have found ourselves in the same situation. I personally would cut the chase and get a local gastric doctor for a referral to a vascular specialist and have an angiogram done. If I would of known about MALS years ago it would of saved me a lot of money and peace. An angiogram is the only way to diagnose this. I am not a doctor but I would highly suggest check out this group and weigh all options before forking over all that money. Good luck with whatever you do. I hope you get some definate results so you can go on from there.

Please login or register to post a reply.