- Cancer Care, Men's Health, Patient StoriesGeneral Page Tier 3BlogAs someone who spent an entire career explaining sensitive and sometimes complicated information to the American public, clear communication has always been important to Marlin Fitzwater. The 69-year-old Deale resident spent a decade as the White House press secretary under Presidents Ronald Reagan and George H.W. Bush. It is not surprising, then, that when talking about his cancer treatment, he said, “next to a smiling face, a good explanation is crucial to overcoming the fear.” Last year, Marlin learned that the cancer for which he had undergone a radical prostatectomy in 1997 had returned. He was afraid, and unsure of his options. But, he sought out the most advanced medical treatment in an environment that made him feel comfortable and eased his fears. “I have at least three hospitals that are within 35 to 40 miles of my home,” he said, adding that he had hoped to find what he was looking for at AAMC. “I wanted a hospital that was local, that was mine, that I could get to regularly, and where I knew the area and knew the people,” he said. After visiting a variety of hospitals, Marlin was pleased to learn about the DeCesaris Cancer Institute and that it could offer him a state-of-the-art, non-invasive procedure to treat his prostate cancer. “They helped me overcome my fears right off the bat,” he said, “They took time to explain things in ways I could understand.” Marlin recalls asking his doctor how the radiation treatment worked. He said his doctor took out a pen and began to draw an illustration showing him where the cancer was and how Novallis TX radiosurgery would deliver highly precise radiation treatments, targeting only the cancer cells and leaving the surrounding healthy tissue intact. “I walked away and I thought, this is really terrific, they explained to me exactly how this stuff works.” According to Marlin, how it worked was simple from a patient perspective. His daily treatments lasted a mere 15 minutes or so. There was no pain, and the open nature of the equipment alleviated his concerns about claustrophobia. He said the best part, of course, was learning that the cancer was gone. Within a few months of his treatment, Marlin was heading out for his annual winter trip to Florida and making plans for the publication of his latest book, a collection of short stories. “You are always telling yourself, this works, and I hope it works, but seeing that it works, is a great kind of relief.”
- Men's Health, Women's Health, Patient StoriesGeneral Page Tier 3BlogCathy Sanders is the kind of person who rarely goes to the doctor and never expected to have to go to the hospital. But all that changed in March when her daughter came home from school and found her barely conscious. The 51-year-old Arnold resident was in critical condition and suffering from a very rare disease in which the body’s blood vessels leak fluid, causing swelling, fluid in the lungs and extremely low, unstable blood pressure. What I have is called systemic capillary leak syndrome or SCLS. It’s very rare: I’m the 151st person in the world to get this diagnosis. I was so lucky, that not only did Dr. Patel figure out what it was, but Dr. Morganti was able to do the surgery I needed. The whole team was just excellent. After about 24 hours in the hospital I’d received 34 liters of IV fluid, which was keeping me alive, but my blood pressure wouldn’t stabilize. I was getting compartment syndrome which is when fluid builds up so severely that it cuts off circulation to the muscles. I needed surgery, which involved cutting through the skin and connective tissue to allow all those fluids out and release the pressure before there was severe tissue damage. I was in very bad shape. My heart rate was dangerously low, I had metabolic acidosis, and was going into respiratory failure. In spite of all this, Dr. Morganti and the two anesthesiologists were able to intubate me and keep me alive and do the surgery. Meanwhile, no one knew what was wrong with me. There were four different critical care doctors all consulting to figure out what was going on. Dr. Patel was actually driving home after work when it hit him. He called Dr. Kirk Druey at NIH, who is one of the few people in the world studying this disease, and he confirmed the diagnosis. It’s incredible that I was able to wake up after that surgery and be told “here’s what’s been happening to you.” Of the four stories I’ve read about SCLS cases, one woman in Louisiana had attacks for ten years and had seen 70 specialists before being diagnosed. The three others were not able to get the surgery I had, and spent months in ICU, burn units, and rehab to relearn how to walk with the permanent tissue damage. That didn’t happen to me because of the incredible staff at the hospital. I spent 15 days at AAMC, and had a few weeks of physical therapy at home. About two months after it all happened I was able to work again, and now, it’s just a matter of building up my strength. I have a small massage therapy practice, and it meant a lot to me to get back to work and see my clients again.
- Community, News & Press Releases, Patient & Family Advisors, Patient StoriesGeneral Page Tier 3BlogAs one of the founding members of the Patient and Family Advisory Council, Karen Goldman has spent the past four and a half years helping to keep the patient perspective front and center at AAMC. For the past two years, she’s been co-chair of the council, and is passing the baton to allow new leadership. While she will remain on the council, she’s taken this opportunity to reflect on why she became involved and what the experience has meant to her. The main reason I became involved with AAMC is because they saved my husband’s life in 2004. I live one mile from the hospital so it’s been the hospital of choice by geography, but then my husband had a massive coronary and ended up in the ER. In addition to the medical treatment which was lifesaving, the staff just never gave up. He coded twice— so this was a dramatic situation— and the impact of that, for me, was just profound. I was the director of patient relations at another hospital system so I understood the significance of that kind of dedication. I saw how well the interventional cardiologist Dr. Mejia and other medical staff at cared for him. That whole experience made it very real and I saw that they were really there for us when we needed them. AAMC became not only hospital of choice by geography, but it is our hospital of choice because of their excellence. And that’s when I decided to get involved. I just wanted to help the hospital in my community be even better and I felt that I had skills to help them do that. With experience as a family member and as a hospital social worker, I was one of initial founders of the council. Then, just last year, I had a heart attack and I now have the experience of a patient as well. All of this really drove home the meaning of patient-family centered care. On the advisory council we emphasize the term “patient-family centered care” and ensure education for the whole staff to make sure it’s hard-wired throughout the hospital. Whether a staff member is working in the cafeteria, whether they’re helping to achieve a sterile environment by cleaning rooms, whether it’s surgeons, or bedside staff, everyone is involved in helping patients to feel welcomed and to make sure patients are honored and their feelings are heard. Being a part of the patient family advisory council has been a very powerful thing for me—being able to give back in ways that impact patients and family members and help take the hospital to such a high level of care. I like to say I have seen the hospital go from great to even greater.
- Cancer Care, Community, Women's Health, Patient StoriesGeneral Page Tier 3BlogIn 2011, Sandra Gunn donated a week’s stay at her vacation house to a breast cancer patient and her family. It was a way to honor her friend Leslie Twohig, who had passed away from breast cancer earlier that year. The family was so grateful, that Sandra did it again 2012. But it wasn’t until last year, when she was diagnosed with stage one breast cancer and undergoing treatment at AAMC that she understood she had begun something truly special. “I was in workshops with women who had stage 4 cancer, some who had double mastectomies, some who had no hope,” she says. “I became so touched by their stories and their strength and determination, and I realized what I was doing with Leslie’s Week was serious.” Recognizing a need that wasn’t being filled, Sandra founded Leslie’s Week as a nonprofit organization to provide a vacation in the Great Smoky Mountains in Tennessee to mothers with incurable breast cancer and their families. The time in the mountains allows families to get away from some of the stress, celebrate life together, build memories and find hope for the future. Everything is provided for them including groceries, tickets to nearby attractions and a community of neighbors ready to help out, if needed. “There are all kinds of nonprofits for fighting cancer, finding cures, and grants for research, et cetera,” she says. “But there are very few organizations offering support for women who are stage 4 who need it now, and for their children who need the support now.” To extend the reach of Leslie’s Week, she is working to establish an educational endowment for the children of women who’ve stayed there. “Whether trade school or university or whatever, we want these children to have an education. And we want their mothers to know as they are going through this illness that her children will be looked after and educated. We want her to have hope and to have her children’s future like a song in her heart. That’s what we’re about.”
- Cancer Care, Men's Health, Women's Health, Wellness, Patient StoriesGeneral Page Tier 3BlogAndy Baum had tried everything from the nicotine patch to hypnosis, but after 50 years of smoking two packs of cigarettes a day, he hadn’t managed to kick the habit. “Nothing worked,” said the 62-year-old Edgewater resident. “But I knew I had to stop before it was too late.” Because of his smoking history, Andy’s primary care physician, Eric Marcalus, MD, recommended him for AAMC’s lung screening program for patients who have a high risk of developing lung cancer. The CT scan Andy received is two-and-a-half times more effective at detecting early stage lung cancer than traditional X-rays. “I felt lucky that the screening was clear, and I thought if I don’t quit smoking now, I’m just killing myself,” Andy said. Andy contacted smoking cessation nurse Joanne Ebner, RN, but just one day before their scheduled meeting, Andy ended up in the emergency room unable to breathe and subsequently had a four-day hospital stay. Both Joanne and Dr. Marcalus paid him a visit in the hospital, but the experience had convinced Andy he could quit on his own. It was the first time the retired New Jersey police officer had been on the receiving end of emergency care. “This really scared me and I thought I was cured.” Within a month, he was smoking again, and he enrolled in Joanne’s smoking cessation program. “It was unbelievable what I learned,” Andy said. “It turned me right around. I learned how cigarettes control your life, and how the receptors in your brain make you want more.” In addition to hard facts, the program provided practical tips and tools to deal with cravings. “I had never heard about all the triggers that make you want to smoke,” Andy said. Andy quit on February 14, 2012, and since then he feels great. “I used to get bronchitis two or three times a year, but I haven’t had it once this year. I have more energy, and food tastes great now.” Even his friends tell him he looks healthier and has more color in his face. Andy has returned to the smoking cessation classes to encourage others to take control of their lives. “You’ve got to do it,” he says. “Life’s too short to be killing yourself with cigarettes.”
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