Afraid of coming to Mayo, but I need a diagnosis

Many, if not all of us reading your post have had the very same terrifying reactions as you are. ((HUG)) As a cardiac nurse, you have, indeed, seen some of the worst case scenarios - and some of the better ones as well. It does take time to put things in perspective and to marshal your courage, you are probably overwhelmed beyond belief. We are all here and do let us know how you as your journey progresses. You will be in the BEST HANDS! That, in itself, I found comforting. I would bet that your family is glad you will be going to Rochester, shows you are willing to take charge and do everything possible to help yourself.

Don’t be afraid. God is getting you to a place of true healing. Mayo is the most incredible medical facility on the planet.

They will do for you what other doctors are unable to do.

If they find something, they will take care of it.

May you be blessed with the best life in the new year.

Hello @babyblues262 ,
Welcome to the warm and caring online community at Mayo Clinic Connect.
Along with Colleen, our esteemed Moderator, you have received some beautiful responses, full of wisdom and encouragement.
What you chose to do with this information is up to you...but I pray that you listen.
Take heart.
Take a deep breath.
Take a break from your fear/anxiety cycle and focus on something besides your feelings.
I hope that didn't sound mean...I just meant that sometimes we need a proverbial "bucket of cold water over our head" to get our attention to stop the thoughts that make us feel like we are spinning in circles with no control.
The truth is we can not control many things, but we can control our thoughts and reactions. One hundred percent, your thoughts are in your control.
Our thoughts are powerful, and I wonder if you have tried to turn this around and look at the positives?
You are being referred to the greatest healthcare organization in the World! Take heart! That is a blessing!
You have been given some wonderful encouragement from others who also know what it is like to have fear. Take a deep breath! Listen to their words.
If you are able to take a deep breath, and look at things with an eye not focused just on you, you may get to a place where you can find some peace. Take a break from your negative thoughts and re-focus.
Mayo Connect is an amazing place where you will find others who can share advice with you. Virtually hold your hand. Give you encouragement. Let you lean your weary head on their shoulder for awhile.
My hopes for you are that you are able to find some peace and some positive in your situation. I feel that perfect peace comes from God who freely gives to those who ask. He has brought you here for a reason, and it's up to you to search and find out why.
Has your doctor referred you to the Cardiology Department at Rochester already or is this in progress?
Do you have a beloved hobby or task you can do to get your mind off your problems for a bit? It may sound funny, but grinding coffee. Ironing. Straitening up the linen closet or sock drawer are little positive things we can do that cost nothing and give our brains a break by making us think of the task at hand. It works!

@babyblues262
I can see mentors and Director and many posters are giving you great information.

What I would like to post to you is that I lived 4 hours from Mayo for many years. I was hesistant with a diagnosis and treatment and decided to get a second opinion.

I, like you, was full on anxiety. But what I want to pass on is Mayo Clinic is a team approach to your health. You will be seeing outstanding medical professionals who will look at your physical and mental health. Try to think that that is positive in that you will be going to an outstanding facility that is going to help you.

I have been through so much it would fill pages here. But what I can say is Mayo Clinic changed my physical and mental health because was addressed by a team approach. The medical and mental health treatments that are out there today by medical facilities like Mayo Clinic are so advanced from even a couple of years ago.

Stop searching Google, it will only confuse and frighten you more. The Team at Mayo are your best avenue! They have the training, knowledge, equipment, and work as a Team to diagnose, develop a plan, and communicate it to you in a way you can understand. I had the same issue with my local doctors, and once I was in Mayo’s hands it was an amazing change! The Team at Mayo took what we had from local doctors and did additional testing all in house, some were “duplicates” but were more in depth. As we progressed from one test to another the Team atmosphere at Mayo put us at ease because each one communicated to the next, and each one made sure we knew what they were doing. You will be in the best of hands, trust this completely!
Hope this helps,

The strongest recommendation I can make is "Get off the Google Wagon" and focus your efforts on getting an appointment at Mayo, Cleveland, Northwestern or any other "center of excellence" medical facility. Put effort into gathering all your health records, test results, imaging.....anything legitimately pertinent to your condition(s) and have the assembled and transmittable to what ever facility you chose. Stop "Ruminating" about the 98% of what won't be. Preparation on your end is the key to success when you step out of the world of "local/production" medicine and step into the type of medicine practiced at Mayo. As I have said on the forum in the past "YOU are in charge of your own health".... and I repeat "Get off the Google Wagon" and focus towards gaining access to quality care. The more you "Google", the more confused and distracted you will be especially when chasing and "unknown"....

As far as gaining access to any "center of excellence" these days, your preparation and "CALM", focused and fact based persistence will be required. Like I said earlier, records, histories, insurance coverage confirmed, etc. will go a long way. More than likely, you will not "get right in" and may be subjected to delays and what many perceive as "poor response/service" from Mayo and others. That's not really the case. Mayo and other CofE facilities are swamped and understaffed....it's a fact of the times. It takes time to cultivate the level of quality Mayo and other CofEs demand..and the talent is just not out there these days....one of the reasons Mayo tries to "grows their own".

Just my humble, but harsh reality opinion.....

Hi Babyblues 262,
RUN DON'T WALK TO MAYO. The care at our local hospitals in Michigan has gotten so bad that they don't listen to one thing said about issues I face. They want to do it their way to use me as a human guinea pig and do not care in the process if I live or die.
I got on the computer and searched for heart surgeons at Mayo, and specifically looked for any with expertise for doing multiple open heart procedures (as this would be my third), and one that worked with seniors. I found the doctor I wanted and called to see if there would be any problem getting into him and told them my artificial aortic valve was failing and I cannot do the valves that go up through the groin because I would have to be on blood thinners for the rest of my life and I can't take them. They shut down my entire digestive system. I was called two days later with an appointment for 3 weeks later with Dr. Juan Crestanello. There has never been a kinder, more caring, skillful and thorough doctor that I have ever known. That man deserves more then triple A's or 5 stars. I never expect to meet another like him in my lifetime.
Why I say run don't walk -- I went there alone at 69 years of age, but never once did I feel alone. I was scheduled for testing over a 4-6 day period and if I was having a bad day with walking or trying to get from one side of that hospital to another, all I had to do was ask for a wheelchair and there was someone there shortly thereafter who also provided plesant chatter as we breezed acrossed that place. When they were done with testing they knew everything about me and if I had a hangnail they would know, they are that thorough. They tested me for allergies to antibiotics, something no one esle ever did. They just let me suffer the hives and Urticaria that had me burning from the tips of the toes to my hair follicles. Mayo knew exactly what antibiotics could be used, because my system had to be flooded with them for three days to make certain that there was no systemic infection to get to my heart during or after the surgery.
I have been in two hospitals locally and at Cleveland Clinic and I can tell you for a fact, I have NEVER been treated more like a human being that mattered, then I was a Mayo. I was checked on all the time. This was in 2018, and while our healthcare, locally, continues to fall to the bottom of the peg, my greatest wish would be for Mayo to bring a facility to Southwest Michigan, as I would be one of the first patients to walk through the door for my follow-up care. HERE, it took me two years to get a doctor to put in a pacemaker when my heart rate fell to 38-42 for a resting heart rate.
I would have been at Mayo in a minute, but it was during covid, and this is Michigan!!! There was no one at Mayo that I can say a bad word about. As we age our electrolytes are sometimes hard to keep balanced and I asked one of the nurses if there was Gatorade I could get anywhere in the hospital. She called the kitchen but it wasn't offered. She went down with her own money on her lunch break and bought a 6-pack of Gatorade and brought it back to me.
Never have I ever seen such thoughtful or caring doctors or staff anywhere I have been, and my PA sent me everywhere trying to get that Pacemaker. That would have been taken care of instantly at Mayo, in fact in follow-up questionnaires I'm sent every couple of years from Mayo, one of the questions asked, was if I had to get a pacemaker. I now send them annual echocardiograms to keep then apprised of how I am doing. When they stop they will know I was called to go home and there will be no more follow ups.
Don't be afraid to ask questions and don't be afraid to speak up if you don't understand or you want further information. They will provide it in a heartbeat. When making reservations for a hotel call the front desk at Mayo and ask them for a referral to ones there that provide transportation. The bus at my hotel was waiting at that door at 5-6 a.m. every morning and did it's trek dropping patients off wherever they needed to be dropped off and you call when you are ready for pick up and they come to bring you back to the hotel. They left, I believe, every hour, so everyone knew to be there that had to be somewhere for appointments. My hotel (Soldier's Field, I believe) had a breakfast nook and a restaurant. After covid who knows what businesses survived. They also pick you up at the airport and if you have a day off from testing you can take that bus to the Mall of America, which they also have two set times for picking you back up to take you back to the hotel.
They knew I was there alone. They let me know when others called the desk to inquire how I was, so I could call them. What I love about Mayo is they are open to alternative therapies, and they are open to listening to you, and they will answer every question you have so go armed with all that you need to know.

I get your fear because I've been there myself but in hindsight I know it wasn't rational. The doctor thought I had prostate cancer and wanted me to get a biopsy. The appointment was two months out. During that time, I was so anxious I threw up and also threw my heart out of rhythm a couple of times and needed emergency medicine. My mind went to the worst possible place because I didn't know what was going on.

The longer you stay in that limbo, the more anxious you're going to become. I ultimately found out that I did have prostate cancer and, while it was certainly shocking and there were some very rough patches during treatment, my anxiety level was actually lower than it was when I didn't know anything.

As long as you are in limbo in terms of what's wrong your mind is going to keep going to the worst possible scenario. Whatever it turns out to be, there are people (doctors, nurses, support groups, message boards like this one, therapists, etc.) who can help you, if it even turns out to be anything at all.

@shiver DITTO

“ I have NEVER been treated more like a human being that mattered, then I was a Mayo.”

@shiver Fantastic post Sharon! I happen to agree! My introduction to Mayo was for spine surgery and I was impressed with the quality of the care, expertise, and compassion I received. I was turned down by 5 surgeons locally who didn't understand what was going on, but the surgeon at Mayo did and I am forever grateful.
https://newsnetwork.mayoclinic.org/discussion/using-the-art-of-medicine-to-overcome-fear-of-surgery/