- 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.”
- Men's Health, Wellness, Patient StoriesGeneral Page Tier 3BlogTwins Andrew and Anthony Henderson grew up on a farm in Upper Marlboro where being active and fit was just a part of daily life. But over time, age, busy lives, and injuries slowed them down. That’s when the weight gain began to creep up on them. They both struggled to keep the weight down, but nothing worked, and it eventually took a toll on their health. Last year, at 47 years old, Andrew decided it was time for a major change. He signed up for a free weight loss seminar at AAMC to learn about his options. Together with Dr. Alex Gandsas who leads AAMC’s Weight Loss and Metabolic Surgery Program, Andrew determined that gastric sleeve surgery was right for him. Inspired by his brother’s success, Anthony has joined the weight loss program and is preparing for gastric surgery. “Since he had the surgery I was amazed, how he’s doing so good,” Anthony says, gesturing toward his brother. “I got jealous. Now, I want what he got.” Andrew laughs. “It’s true. When I walk in the door my family says ‘where’s the rest of you?” Before attending the weight loss seminar, Andrew weighed 407 pounds. He suffered from sleep apnea, diabetes, high cholesterol and gout. “It seemed like every time I went to the doctor, I was not responding to the medication and they gave me something else. I was on 13 medications total.” All that changed after his surgery. Within four months, Andrew had lost 73 pounds. The sleep apnea was gone, and he needed only two medications instead of 13. Anthony is looking forward to similar changes after his surgery. At 396 pounds, he suffers from high blood pressure and sleep apnea, and he’s taking five medications a day. Even so, the thought of surgery intimidated him and he considered not going through with it. That’s when Andrew encouraged him to go to the weight loss seminar. It gave him the information and resolve he needed. “This is a life changer,” Anthony said to his brother, “I’m glad you told me, go to that seminar. It eased me from being scared.” “The seminars are so important,” Andrew says, admitting to his own fears about surgery. “I was scared, I won’t lie. But I said, it doesn’t cost me anything to go to the seminar, so I went. It was very valuable, because things you don’t know about your own body you can learn there. You have three types of surgery that you could qualify for. You have the sleeve, then you have the lap band, and then you have the gastric bypass. He goes through each one and explains to you the purpose of it, the outcomes of it and who can qualify for it.” “You need the mindset to make the change and you need the support,” Andrew says. “And the program is lifechanging. I’m 73 pounds lighter and I got something to look forward to.” “We want to retire,” says Anthony. “We’ve got things we want to do.
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