Sharing Mayo Clinic - March 2012 Archives

My name is Katie Little and I am 28 years old.   I have experienced many nasal problems throughout my life, including two nose fractures and, over the last 10 years, have experienced significant difficulty breathing at night.  I tried a variety of methods to alleviate my problem, such as nasal sprays, acupuncture, fans, Neti Pots, and various sleeping aids.  While some of these approaches helped on a short term basis, none provided me with long term relief.  Trying so many different approaches became time consuming, frustrating, and expensive. During the last 5 years, I have gone to three different doctors for opinions regarding my problem, with all three indicating that nothing was wrong and that I should learn to live with this difficulty.  I then became a fanatic in researching which enabled me to conclude that my problem might be a deviated septum.  I talked with my mother who recommended that I see an ENT doctor at Mayo Clinic as a last result. Within 24 hours, using Mayo’s website, I had an appointment with Dr. Grant Hamilton III, Senior Associate Consultant, Division of Facial Plastic and Reconstructive Surgery in the Otorhinolaryngology Department at Rochester.  One of the first things Dr. Hamilton did was to use a scope to examine the inside of my nose.  Dr. Hamilton immediately cited that I had a large bone growth, called a spur, inside one of my nostrils and that the bone growth was very likely the reason for my breathing difficulty and advised me that I should have surgery to remove the growth.

Previously: "Joey's Hope - Part 1 of 4", "Joey's Hope - Part 2 of 4", and "Joey's Hope - Part 3 of 4" ...Because this was an exciting brand new medication the local news station interviewed Joel several times throughout the twelve week treatment period. The video clips of the news stories, where Joel and Kimberly themselves talk about the Mayo Clinic and Yervoy, can be found at www.indianasnewscenter.com. Joel had subsequent Yervoy treatments, and the side effects were not too horrible until he became so dehydrated that he had to make a trip to the oncology office to be hooked up to an IV for fluids, every day for five days in a row. The worst side effect was diarrhea, and he did have it for approximately four months straight! After the very last treatment he got worse. Over July fourth weekend he was hospitalized and remained there for eight days. It was possible that the Yervoy could create perforations in the intestine and could ultimately become fatal. Fortunately, this did not happen with Joel’s treatment.

Previously: "Joey's Hope - Part 1 of 4" and "Joey's Hope - Part 2 of 4" ...Within the next twelve short months Joel, Kimberly, and their daughter made FIVE additional trips to the Mayo Clinic, in Rochester. Joel had a wonderful oncologist in Fort Wayne, Dr. Carr, who was willing to work with the Mayo doctors. There were times when Joel had appointments to see Dr. Carr once a week, for months at a time. Joel began taking Temodar, a chemotherapy “pill” that worked better than an IV to get into the brain and do its work. This made Joel very sick. He was to take it for one week every month. The next trip to Rochester, MN was in June of 2010. Kimberly was terrified of driving all that way again and especially the route through Chicago. The stresses of Joel’s cancer, the brain surgery and after-effects, and daily life dealing with insurance companies, disability paperwork, financial difficulties, and much more were wearing on her. Thankfully, they were part of a phenomenal church family who helped take care of many of their needs during this crisis.

Previously: "Joey's Hope - Part 1 of 4" ...Joel was gone to surgery and then to recovery on Friday from about 6:30 a.m. until 4 or 5 p.m. He was moved to the ninth floor of the Mary Brigh building in ICU. Dr. Bledsoe talked with Kimberly and advised that the surgery went well. Although he did advise that Joel experienced some seizures during the surgery. Jadyn and Kimberly were allowed to go see Joel for about an hour. It was not pleasant for anybody. He didn‘t look too great and said strange things. He had some seizures (in his hand) while they were in the room with him and Kimberly had to call the nurse. Joel remained in ICU for about 24 hours. On Saturday, Jadyn and Kimberly stayed with Joel at the hospital most of the day. Kimberly noticed almost immediately that Joel was irritable and not quite himself, which is totally understandable having had brain surgery the day before. The next day was Easter Sunday. Kimberly and Jadyn attended Hope Summit Christian Church and then went to be with Joel. They brought him an Easter basket with some silly things inside. Joel looked through it, and again Kimberly noticed how irritable Joel was. He became easily aggravated at both Jadyn and Kimberly constantly. He had always been the most easy-going person you’d ever meet, rarely raised his voice, always smiled, always kind and considerate to others, and more. That Joel was not in sight! It was almost as if his entire personality changed. It was completely distressing to his loved ones and not a great Easter for the Saunders family that year.

To be told he had melanoma cancer totally shocked Joel Saunders and his family who live in Fort Wayne, Indiana. An auto technician (window installer), Joel was always extremely healthy and rarely called in sick to work. He has been married to Kimberly for 17 years. They have one child, a daughter, Jadyn, who is now eleven years old. The three of them love the Lord with all their hearts and are members of a local church. It all began when Joel discovered a pea-sized lump on his shoulder near the base of his neck. After having the lump surgically removed in August 2009, he was diagnosed with melanoma cancer in the lymph node. Later that month Joel had a “modified radical neck dissection” where they removed about 30 more lymph nodes in his neck, jaw, and shoulder areas.

In 2007, Kimmy Lockwood decided to be screened for weight-loss surgery to address a longtime weight problem. Little did she know that decision would be lifesaving and eventually lead to a liver transplant at Mayo Clinic. Tests indicated Lockwood had low iron levels. Her local physicians found the reason — a genetic disorder called hereditary hemorrhagic telangiectasia (HHT, also known as Osler-Weber-Rendu disease or syndrome).

Having gone to several doctors elsewhere without receiving answers, this previously athletic student, Nick, and his mom, Becky, arrived to Mayo Clinic. They were exhausted. ...

During the summer of 2011, my husband, David, underwent a series of tests which revealed extremely high levels of a certain protein in his blood.  As a result, we were referred to the Hematology Department at Mayo Clinic, Rochester, MN, for further evaluation and diagnosis.  We were seen in September, 2011, and a bone marrow biopsy was performed to rule out multiple myeloma.  Abdominal fat tissue was also biopsied to rule out a rare, potentially fatal, plasma cell dyscrasia called amyloidosis.  Unfortunately, the Congo red stain analysis confirmed the presence of the abnormal amyloid protein.  We were blindsided and stunned by the diagnosis. We resolved to go about the business of fighting the disease, bolstered by the knowledge that we were at arguably the very best center of excellence for amyloidosis treatment. Our physician, Dr. Morie Gertz, recommended an autologous stem cell transplant.  After a few weeks at home planning our “deployment” and obtaining insurance approval for transplant, we returned to Mayo Clinic to begin treatment.  Following growth factor injections which mobilized David's stem cells, we spent time in the Apheresis Unit collecting cells for the transplant.  He then underwent two days of high dose chemotherapy, before his stem cells were reinfused on transplant day.  Thereafter, Station 94 of the Eisenberg Building at Rochester Methodist Hospital became a regular part of our daily lives. We made the daily trek from our nearby apartment to Station 94 for exams and blood draws.  We were fortunate that David was able to complete his transplant entirely on an outpatient basis.  His healthcare providers did an excellent job of monitoring David’s progress and helping him manage his nausea and other side effects.  Our job was to ensure that he remained properly hydrated and nourished, and to remain compliant with transplant dietary and environmental guidelines.  We joked about it seeming like a long series of “Groundhog Days”, but in retrospect we are thankful that our primary challenges were tedium and monotony, rather than any serious crises.  We were released to return home on Day 18 following transplant.  We spent just over one month at Mayo Clinic, which was less than our anticipated stay of 6 to 8 weeks. I arrived home with the photos I had taken to document David's treatment, but had no plans for compiling them into a video at that time.  The song lyrics, however, had presented themselves to me in vague conceptual form shortly after diagnosis when I was still learning to correctly spell and pronounce amyloidosis.  A lifelong love of musical parody, coupled with my memories of a recent live performance of "My Hero" by the Foo Fighters, proved to be the perfect storm.  The lyrics continued to swim around in my head during our time at Mayo Clinic, occasionally surfacing to refresh and edit themselves.  "My Stem Cells" ultimately became part thank you note and part love letter to everyone in Tulsa and at Mayo Clinic who took care of David during diagnosis and treatment, and who is still involved in his ongoing care. http://www.youtube.com/watch?v=41bx0ZHejps&feature=youtu.be

Anistasia Smith and her mother, Bridgette Grunewald, give a big thumbs-up to Brian Carlsen, M.D., and the team at Mayo Clinic who cared for the then 4-year-old in February 2011. Anistasia’s left thumb had been severed in a recliner chair. “Anistasia was asleep, cuddling on her grandma’s chest. When the recliner was brought to an upright position, her thumb was caught in the chair’s mechanism and cut off,” says Grunewald. “My mother put pressure on Anistasia’s hand to control the bleeding and called 911.” First responders retrieved the thumb and used a bag of frozen vegetables from the family’s freezer to keep it cold and increase the likelihood of the tissue surviving.

By Susan Pepperdine "My doctor came in, and in his best Marcus Welby voice told me I was going to die,” Marlys Fox vividly remembers. She was just 32 years old, so “I wasn’t going to take that sitting down. When I immediately announced, ‘I’m going to Mayo Clinic,’ he told me that they would just get my hopes up, and it wouldn’t make any difference. He gave me six months to live." The year was 1967, and Marlys was living and working in Des Moines. She’d made the appointment with her obstetrician/gynecologist after experiencing bleeding. The tests he ran showed choriocarcinoma, a rare, fast-growing cancer of a developing placenta. She hadn’t even known for sure if she was pregnant. “I knew Mayo’s reputation, so I just got in my car and drove the three-and-a-half hours to Rochester,” she said. “I walked into the reception area, and told them I didn’t have an appointment but needed to see a doctor immediately. Then I just stood there and cried. After that, it was only a short time before I saw a lot of people.

Rosalee Johns says she has her life back thanks to a freezing therapy called cryoablation that restored her heartbeat to normal. In 2008, Johns, then age 67, was diagnosed with atrial fibrillation, a condition in which the atria — the upper chambers of the heart — receive irregular electrical impulses that cause erratic heartbeats. Johns’ heart beat rapidly. She was light-headed and short of breath. The episodes occurred every three or four weeks, lasting 12 to 15 hours. Despite treatment with medication, the episodes increased to almost daily.

My story begins in 1998. At the age of 32 I was diagnosed with bilateral hip dysplasia. Because I was a breech baby at birth the doctors at home had told me that this was probably the reason why I was having problems. I was having the most pain in my left hip. I first went to see Dr Ray Emerson at the Mason City Clinic in Mason City, Iowa. He took a hip xray and diagnosed me from that. I am an RN and was working at the hospital so being on my feet all day was somewhat of a task at times. He suggested to me that a cortisone shot may help alleviate some of the pain along with an anti-inflammatory. So I took him up on his advice and took the cortisone shot. After about a week the shot wore off and it was back to the pain again. The pain was not yet unbearable at this point and nothing that the anti-inflammatory medication couldn't control. I continued to work as an RN and was on my feet many hours a day.