I am a long hauler I've had a pacemaker battery dependent for almost 42 years and have had 8 battery changes. I worked in a woodyard for International Paper for 32 years (now disabled for 10 years). I am a poster child for wearing a seat belt, I had a wreck when I was 21 and at 22 had damaged my SA node and it is completely gone, December of 1979 I had my first, a single chamber pacemaker put in it was set to 80 beats a minute no matter what I was doing. I have a dual chamber pacemaker since 1987. Then in September of 1989 one of the lead wires was bad and had drained 55% of the battery in 15 months so they capped off that lead wire and ran a 3rd lead wire in the subclavian vein and I threw a blood clot in that area. It is still totally occluded but the small capillaries have taken over the blood flow in that area. 2015 I was diagnosed with a large ascending aortic aneurysm but it is stable but non operable(last checked 6/8/21) . April of 2018 I had fever for 23 days straight and during that time I also had my first heart stent placement. I have been deteriorating since the fevers. I have a team of 14 Doctors at Vanderbilt and they referred me to Mayo after over 2 years of trying to figure out what is going on... September of 2019 I had a MRI of my head and chest/abdomen. Finally in April of 2021 I made it to Mayo (covid) I received a lot of information but still no answers YET. The Neurologist at Mayo recommended neuro genetic testing and a MRI. The genetic testing would hopefully point them in the direction to look for diseases that has to do with central nervous system and the MRI of the head and spine to confirm the findings or help in making a decision in diagnosing. Here is the problem, after returning home, 3weeks later. Mayo CALLED and had scheduled for me to come back in August for 2 days of MRI's because of too much radiation for one day and to see the Neurologist for the results of all test. We booked our flights room, and car rental plus time off work for my wife to return in August. Everything was set (or so I thought) It takes a while to schedule a MRI for pacemaker patients because they have to have a team with you including a cardiologist. They have had my medical file 3" thick which includes information about my pacemaker, my last interrogation, stent, and a copy of the MRI from 2019 before arriving in April 2021. June 7, 2021 i get a message on patient portal the cardiologist cancelled my appointment in August because I have a "special pacemaker". I was told to have the MRI done locally!! I was furious and posted on this Mayo Clinic Connect site and received help. Thank you Deanna... (I can no longer see my post?? It appears it has been deleted.) Well by Friday Mayo changed again and will do the MRI after i have been evaluated by the Cardiologist. I have no problem seeing the Cardiologist there (I ask to see a Cardiologist while being there in April) I totally agree but that doctor gets to decide if they proceed with the MRI. I was then told I could make the trip and still not get the MRI. I was told they would reinstate my appointment for me after seeing the Cardiologist that day. Today I was told to come in August to be evaluated by the Cardiologist and if approved they went ahead and scheduled my MRi for Sept 2.2021. What happened to reinstating my appointment after seeing the Cardiologist at the August appointment same day? Really, it has been a sacrifice for me and my family to make the first trip but I am desperate for answers not to say the toll it has on my body to make this trip but to return 2 more times because YOU cancelled the appointments and sent it in a message instead of calling and waiting to see what could be worked out!!! ( My appointment is with a different cardiologist not the one that cancelled the appointments) I will be in a wheelchair in 6 months to a year if we can't figure this out. I fall weekly because of balance issues peripheral neuropathy from feet to knees and hip, cognitive and memory problems. I pray I can get the help I need and soon~~~

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