Getting your first appointment

Thanks so much @bernese53 and I definitely will!

@chicagomichelle, Please accept my sincere apology for my inappropriate response. I am so sorry that I made a wrong conclusion. It sounds like you really have a sensitivity to drugs. That must be tough. I admire your attitude; it points to the positive. Please keep working on getting the nutrition that your body needs. I think it is a good thing that you will see a specialist to help you. You are moving in the right directions.
You might want to purchase a pair of ear plugs to ensure a good night sleep. Hope all goes well for you tomorrow. Maybe there will be some music in Gonda lobby to enjoy.
Rosemary

No worries @rosemarya! You didn't know. I'm actually gratefully to have lost that weight, no matter how I had to do it. I needed to as I was up to 192 pounds, which was not good for me. At the height of the huge prednisone doses, I was 235. It's been a nightmare and drugs which I was pretty much prescribed like candy, including antibiotics, biologics, norco, Valium, you name it, have put me here. Not to mention drugs for the side effects of those drugs, essentially putting me in a wheelchair. I've developed ptsd after all that I have been through as a result of my 7 year drugging and all that has happened to my body as a result.

It actually scares me that I now have no pain in my legs as it's like I'm waiting for it to go away and for something else to happen. The last time I came home from Mayo, I stepped on a stair and tore an adductor muscle in my leg and it was the worst pain in my life. I attribute it to levaquin, a drug I had been on 4 or so months prior as a result of another lung infection, due to yet another biologic. I'm trying to take this day by day and not overtax my body in hopes it will come back to me. I will be seeing pharmalogical specialists on my next visit here.

Funny what you said about the ear plugs. I recently bought headset type ones for home as I have 2 neighbors above me who sound like a herd of elephants, 24/7. It's a nightmare. I've been using hypnosis to sleep and I listened to 3 different CDs last night. The hypnotist is Anna Thompson and she is wonderful. You can get her CDs on Amazon. I've found it is the one way I can get my mind to stop. Dr Sood's book is helping me a great deal as well and I feel so lucky to actually be able to take his coarse in person.

I also feel lucky to finally be at Mayo and getting the treatment I need. When doctors would say things like "welcome to old age" at home, I would cringe. I'm 56 years old and should not be in a wheelchair with a crumbling body. My Chicago doctors never drained my knees in 7 years and instead, wanted to give me drugs and send me to shrinks when I cried from severe pain. They didn't listen. One took full advantage of me, in a very personal way, and I believe I developed something very close to Stockholm syndrome in that I continued to see him, even though his treatments were hurting me gravely. What that man did to me was a sin and it was at Mayo that for the first time, a doctor spoke the words, "I am so sorry, that should have never happened to you." I needed so badly to hear that from another medical professional. I actually see him again today and look forward to expressing my gratitude to him.

Instead of the words "there's no place like home" I've replaced them with "there's no place like Mayo" in my head these days. I'll come back as many times as necessary, even if I have to walk here. I'll find a way to make it happen as it is truly my only hope now.

I appreciate this forum as well as it helps to get it all out. I've started cognitive behavioral therapy at home too, and that is also helping me.

Thanks for listening.

@chicagomichelle, I wish for you to have a good day today.
I also want to encourage you to continue looking at some of the discussions where you have made previous posts, and to explore some new ones. You have a wonderful attitude about life and all that you have experienced healthwise. Plus, you have a very enjoyable writing style. I think that you would be able to offer a unique perspective of hope and support to others who are on comparable 'journeys'.
Hugs,
Rosemary

@rosemarya Awww, thanks for saying that Rosemary. I'm actually writing a memoir about my medical saga, starting in 2008 when I tore both rotator cuffs on a beach and was then diagnosed with RA and fibromyalgia as a result of the severe pain and inflammation in my body. I went from 0 to everything, all in a day. (I stole that line from my favorite band, the Counting Crows)

That same year, my husband was misdiagnosed with pancreatitis in July and told to go home and not eat fat. His severe pain would not go away and we kept searching for answers. A month later, we would learn he really had esophageal cancer and he passed 3 months later, on November second, the day of the dead. It was just like him to leave us on a day set aside to celebrate death. He is still with me and always will be.

I will take your advice and check out some threads where I may be able to help. I've removed myself from most social media in the past month as I found the negatives actually affected my pain, but I am all about helping others. I just filled out a Mayo financial aid application and I had intended to offer any services I could in exchange for what they have done for me. This is a great place to start.

It's a good thing I checked my schedule this morning as my doctor had scheduled a mammogram for me today. Plus, she managed to get me a pharma consult on Friday, with plenty of time before I have to catch my plane!

As always, I remain grateful and have a great day yourself!

Hugs!

Michelle

PS I actually walked over to my checker appt this morning and when I entered Gonda, there was the live piano player you sent. Thanks for that!

For you @rosemarya ❤

My Cardiologist in Chicago felt that I needed surgery for Aotic Aneurysm as well as to replace Aotic Valve in Sep 2016. He suggested I come and visit Dr Nishimura at Mayo who, in his opinion,is one of the foremost Cardiologists in the country. He set up the appointment with Dr Nishimura who, after all the testing, set up a meeting with Dr Pochetino, Cardiovascular surgeon at Mayo. Dr Pochetino indicated that this was a high risk surgery carrying a 10% risk of failure --- much higher than the 1 to 2 % considered acceptable
He asked us to take our time deciding since there was no imminent danger. We decided a few weeks later to go ahead and scheduled the surgery on Feb 7 of this year. The details of the surgery are in a separate message I posted.
We spent 2 wks at Mayo and stayed at Marriott's Springhill Suites. This is a very comfortable place across from St Mary's hospital. We r very happy with the svc we got at Springhill Suites, and most importantly, the ampathy. Every staff member would talk to my wife,when I was in the Hospital, and inquire about me! They also have a Mayo rate and daily breakfast that is decent. Hope this helps.
Any questions about our Mayo Experience --? please post and I will answer asap.

@shakuni11, I want to add this to your reply, "In addition to the medical staff and the locals, it is the patients and their caregivers, too, that make it a positive experience."
I am happy that you have had successful surgery.
Rosemary

@chicagomichelle As I sat here reading the account of your visits to Mayo my eyes are welling up. Thank you so much for sharing your experience. I am contemplating visiting Mayo Clinic Florida. I just am not sure I can be as brave as you. You have given me much to think over. Thank you!
Jen

I recently got admitted to Mayo Clinic. A surgeon outside of Mayo had been an intern there and got me in 'fast'. You should have all of your records. They are so organized. They had my CT scan and MRI's already in their system by I saw the doctor the same day. If you have an appointment at 2:10, you will be called at 2:10, so you better get their early to check in. Also, they do take Medicare to some extent. They charge you, the patient, and extra 15% because they won't just settle for what Medicare will pay. We also have a supplemental plan. Out of Mayo, most of my doctor bills have been paid, but this is not the case at Mayo. But, with their technology and skilled doctors, I feel I am going to the best and will be taken care of effectively. They work as a team. I am loving this place. The radiation that I will be taking for 5 weeks will be $48,000. They let you know if you ask. Our part will be about $6,100. I will still have the vascular doctor, the surgeon, etc. to pay, but it is my life and I want to live.
My question to you is have you gone to a vascular surgeon? Have you had any CT scans or MRI's? These tests are what finally told me what I had wrong with me. I had a swollen leg but no other problems. i don't even take blood pressure medicine. I am an avid hiker and exercise personal 67 years old. If my leg had not swollen, I would not know anything is wrong with me. You can ask your primary doctor for these things and they will be a lot cheaper than going to Mayo. Then you can go to Mayo. The fastest way to get things done is to have your doctor get you scheduled. They can work miracles. I hope I answered your questioin and more.