Share Your Mayo Clinic Story: February ’09

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This post is an open forum where you can tell your Mayo Clinic story.

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4 Responses to “Share Your Mayo Clinic Story: February ’09”

  1. Linda Rockey Says:

    First, let me begin by saying that I love the publication Word for Word and am heartened to see them in patient waiting areas. I know that patients take them home and share them.

    Here is my story and comments about Mayo Clinic but it is a long one so get comfortable.

    I was diagnosed with Crohn’s disease in 1970 and after deteriorating a year later my grandmother said “Enough of this, I’m taking you to Mayo Clinic.” She booked the flight, hotel and made my appointment. I can still say today that is was the best gift I’ve ever received. That one week changed my life in so many ways.

    Over the next 30 years I flew back to Rochester on many occasions for consultations. I always felt at home when I was in Rochester even though I always traveled alone and stayed in downtown hotels. There was such a comfort in just being here which is hard to describe.

    Over the years I fought with insurance companies about wanting to return to Mayo Clinic and usually it was denied. I was in the unfortunate position of working for a large law firm who helped a local hospital in Michigan find a loophole so they could buy the insurance company. I was diagnosed with a cerebral aneurysm in 1998 about one month after my husband left me. The insurance companies are the reason for our dire situation and they control a patient’s life. I had to stay in an unhappy marriage for 20 years because I could not get medical or life insurance on my own. After the initial panic of having an aneurysm, being a single parent and only working part time, I settled down and called Mayo Clinic. They gave me an appointment so I bought my airline ticket, advised my employer (took vacation days) and was ready with my x-rays for the trip. My father had died of an aneurysm at the age of 51 so I was concerned whether I would live to see my daughter graduate from high school. As the day for my trip got closer I called the insurance company and asked if the appointment had been approved. They kept saying no. On Friday when I called they said it was not approved yet. So I did not make the trip and lost the ticket ($400) and sat and cried because I could not keep the appointment. They called me on Monday morning (my appointment was for that day) and said it was approved. I started crying and said well obviously I didn’t go because I’m at work and the appointment was for that day. I then called to reschedule the appointment with Dr. Fredric Meyer and had to wait 3 months. I don’t believe there are words to describe the anxiety I had for those 3 months. Eventually I made it to see him and to compare the difference between his demeanor and the neurosurgeon I saw in Michigan is night and day. Let’s also talk money. The neurosurgeon I saw in Michigan walked in the room, never looked me in the eye nor said my name, threw a bag of clips on the table and said we’ll use one of these. After 2 minutes he said my nurse will come in to see if you want your head shaved. The total appointment time (he never asked for the x-rays which were on my lap – I had waited 3 1/2 hours that morning for the appt. and then he charged me $250. I sat down face to face with Dr. Meyer and talked about all my options, he never took his eyes off me, touched my hand and talked honestly to me. The visit lasted almost 45 minutes and I was charged $75.00. He advised me to go home, deal with my divorce, get my daughter through graduation and return in one year to review my options. I cried tears of relief all the way to the airport. Fast forward two more years (trust me lots of stories in these 2 years but you’ll read about them in my upcoming book entitled The Persistent Patient) and I see Dr. Meyer and we determine that surgery is necessary. I returned a month later for the surgery with my daughter and friend. My daughter kept asking why I was so calm about the whole thing and I just said that I had so much faith in Dr. Meyer that I had nothing to worry about. I’ll never forget the day after surgery when he and Wanda walked into my room (I so appreciated it just being the two of them – I do not like it when the entire team walks into your hospital room because you are not comfortable asking questions or raising concerns) and I was able to hug them both and thank him for saving my life. Truly a moment which never leaves me. Dr. Meyer advised me to stay at the hotel for a while before flying home but I could not afford that so I hopped on a plane the day after release from St. Marys and flew home. The hardest part of the long recovery was not living in Rochester. I was states away and nervous that something would go wrong. And then September 11th happened and I was so confused as to why I lived and those people didn’t. As my recovery progressed (I had no disability at work, no money, had to sell clothes and jewelry just to pay my bills) I knew that I wanted to return to Rochester and work at Mayo Clinic. I had hoped there would be a way that I could be an advocate for all patients.

    I woke up one day with a “now or never” moment. I went to work that day and told them I was leaving, put my house up for sale, and told my family and friends that I was moving to Rochester. Then I started applying for jobs at Mayo. I only applied for positions in the Plummer Building because I have collected and studied Mayo history all my life and knew I wanted to work in that building. Six months later I got a call from Mayo about an interview. On the same day, I received a call from the USA Today stating that they wanted to publish my response to the DM&E story on Mayo’s behalf. I took that as a sign that those two things happened on the exact same day as a good omen.

    I got a job offer and I accepted it and had to start work in 3 weeks. I then started selling everything I owned through ebay and garage sales and basically giving it away to coworkers. I flew to Rochester for one day and signed a lease for the only apartment I had time to see which is right downtown. I knew I wanted to live as close to the Clinic as possible so even in bad weather I could walk everywhere I wanted to go. I remember the drive to Rochester (I’d always flown) all by myself with a few items in my backseat and only bringing a few household items with me. The adjustment to life in Rochester and to my current position has been very challenging but I have never regretted the move. My life has been full of challenges which always have a silver lining.

    I now have to determine if I can make a difference here for patients and visitors. I would love to take time off and finish my book (I never stop thinking about it). I don’t know what is next for me but for as long as I am at Mayo Clinic I will offer my story or ideas to anyone who wants to listen.

    My passion in life is Mayo Clinic. I have only skimmed the surface of my experiences here. Thanks so much for listening. I did give you the short version of my story.

    Linda Rockey

  2. Julie Beck Says:

    My Mayo story started at my 35th birthday physical. I went to my local physician and found that I had “lumps on my thyroid”. My family Dr knew that my deceased mother had had thryoid cancer and he immediately asked if I intended to go to Mayo’s like my mother. Knowing the excellent care she received I said yes and an appt. was set up with Dr Hossein Gharib. I went with my sister and we both were impressed to say the least. I am a medical social worker and she is an RN. At the end of my appt. with Dr Gharib he asked if I had any more questions. The biopsy showed no cancerous cells and I only had one final question. The question was, would it be of benefit to know what type of thryoid cancer my mother had. We let him know that she too had been treated at Mayo. After obtaining consent from my father to look at her records, and before we left, he had her chart sent over. Imagine my disbelief when he looked at her chart and said “I remember her”. She had a major muscular degenerative disease in addition to thyroid cancer. It was 18 years since he had seen her as she died of another type of cancer shortly after. Dr Gharib explained the genetic types of thryoid cancer, ordered additional labs and all within hours was able to say that I did not have the genetic make-up of the medullary thyroid cancer that he worried most about. With a negative biopsy I followed the recommendations to visit again in 6 months and then another year later. At the third visit Dr Gharib did a biopsy and this time found “suspicious” cells. The next day I was scheduled for surgery with no time to worry. Radioiodine ablation therapy followed several months later and now 10 years later I am cancer free. After my first visit with Dr Gharib I found several resource books on thryoid function in which he was quoted for his research. He has also served as the President of the Association of Endocrinology. What marvelous credentials. He truly listens to me when I am there. The whole experience with Dr Gharib and the Methodist Hospital has been amazing. I am grateful for Mayo!!
    Thanks.

  3. Colleen W Says:

    My 39-year-old husband has been a patient at Mayo Clinic – Jacksonville for the last six months. During that time, two preeminent surgeons, a genius oncologist, and numerous other incredible doctors have delivered him from a dire cancer diagnosis to a place of hope for remission. We are still engaged in a marathon battle against cancer, but thanks to Mayo – there is now a light at the end of the tunnel.

    Prior to our arrival at Mayo on July 23rd, 2008, our referring physician told us the tumor on my husband’s face was likely a very rare and aggressive cancer. As we sat in the waiting room at Mayo, we were a bundle of raw nerves. From the moment Dr. John Casler greeted us, I felt a heavy weight lift from my shoulders.

    Dr. Casler slowly and skillfully explained the expected road ahead, including an imminent, very serious surgery. To say he was a calming presence doesn’t do him justice. He was a ROCK. I am not exaggerating when I say that he possesses every quality you would want in a doctor/surgeon. You couldn’t hope for a better person to usher you through a crisis.

    Dr. Casler enlisted the help of the talented Dr. Galen Perdikis and together, they got the ball rolling fast. Even though neither doctor was scheduled to be in the OR that Friday, both changed their schedules and worked into the night, performing a life saving eight-hour surgery on my husband’s face and neck.

    In spite of working against an extremely aggressive tumor that had wrapped around my husband’s trachea and another tumor that had begun to take over his lip, Dr. Casler got all the cancer in both the thyroid and face without snipping his vocal chords – no small feat. Dr. Perdikis reconstructed his face, putting the pieces back together in a way that’s nothing short of a miracle in my book.

    After surgery, Dr. Casler came out to tell me the surgery details and he confirmed what I already suspected – that the cancer had spread within my husband’s body — and somehow he shared this news in a way that didn’t leave me totally defeated. What a testament to his incredible communication skills.

    Amy Simmens – Dr. Perdikis’ PA student who’d been in the OR — followed soon after. She came simply to check on my emotional wellbeing, knowing the information I’d just received. Her kindness and compassion to come check on me after so many grueling hours in the OR touched my heart deeply.

    It took several weeks for path results to come back from Rochester. They had their best pathologists working to identify this unusual cancer, but the process takes time. As we navigated through this scary and stressful waiting period, Dr. Casler was a constant source of wisdom, comfort and guidance. Sandy and Patti, Dr. Casler’s medical secretaries, never failed to get Dr. Casler’s ear when we had concerns and they communicated on our behalf in a timely, compassionate and caring way. Donna Smith, Dr. Casler’s PA, was also kind in offering reassurance. I don’t know how Dr. Casler, Donna, Sandy, and Patti were able to make me feel my husband was their only patient while taking care of a busy department at Mayo, but somehow, they pulled it off.

    When we finally got path results back, Dr. Casler connected us with Dr. William Maples, the oncologist who would treat the few places where the cancer had spread within my husband’s soft tissues. Again it was evident that we were in such capable hands. Dr. Maples is so incredibly knowledgeable, I don’t spend one precious moment doing Internet research. So great is my trust that I feel no need to look for answers elsewhere.

    Over the last several months, time and time again I’ve seen how Dr. Maples stays several steps ahead of us. Every topic I bring to the table, he’s already considered. While he’s executing plan A, he’s got plans B and C waiting in the wings. As a planner, I really appreciate this quality.

    Beyond his vast knowledge and attention to detail, Dr. Maples radiates warmth and genuine concern. Somehow, in some incredible and uncanny way, he knows just how to phrase things so as not to steal hope. And as anyone who’s faced cancer knows – hope is so precious when you’re battling this disease.

    Cecelia Watson – ARNP, and nurse Robin Peck, follow perfect suit. They are both so kind and compassionate — and they’re smart as whips, too!

    When my husband began chemo in August, we had no idea how things would progress. If we didn’t find an effective treatment, it was possible the cancer could take his life within a matter of months. Worse yet, because this cancer has a number of atypical features, there is no set course of treatment for his disease. Fortunately, Dr. Maples found just the right chemo cocktail to combat this rare cancer and my husband has had a phenomenal response to treatment. He’s now undergoing radiation under the watchful eye of Dr. Steven Buskirk – another amazing and confidence-inspiring doctor. We now have a 70% chance of getting the cancer into remission. Much better numbers than we began with!

    Of course our story is still unfolding and we have many more chapters to write at Mayo Clinic. We face many unknowns and the list of concerns is sometimes quite long. At least there’s one thing I don’t have to worry about and that’s quality of care. That’s a pretty big concern that’s off the list.

    I wish I had the name of every person to whom I owe thanks, but here’s a start: Dr. Casler, Dr. Perdikis, Dr. TerKonda, Dr. Maples, Dr. Ames, Dr. O’Connor, Dr. Palmer, Dr. Satyanarayana, Cecelia Watson, Robin Peck, Rick, Christie, Amy Simmens, Sandy and Patti, Donna Smith – there are so many others. God bless each one of you – you deserve more praise than I’ll ever be able to express.

    • Julie Beck Says:

      Colleen, isn’t it a great place. In such a huge system to feel so cared for is more than you can purchase with money. They get customer service there no other business/hospital.

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