November 16th, 2011 by DeborahSchwarzRPA in True Stories
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When Megan Ellerd and Steven Ferretti met seven years ago, it was “instant love,” she says. Not long after, the young couple found out that Steven had autoimmune hepatitis — but they didn’t worry too much about it, hoping that it wouldn’t affect them until much later in life. In 2008, however, the two were happily engaged when Steven’s condition suddenly took a turn for the worse. His liver was failing, and he needed a transplant.
Although Steven had severe liver disease and was experiencing painful symptoms such as ascites (fluid buildup in the abdomen), he would have had to become deathly ill in order to qualify for a donor organ from the transplant waiting list. For a couple with a wedding to plan and a bright future ahead, the prospect of Steven spending many months, if not years, in progressively worsening health was just not an option. For Megan, the choice was clear. She had known from the beginning that she would donate part of her liver to him if she could — and when testing Read more »
*This blog post was originally published at Columbia University Department of Surgery Blog*
October 22nd, 2011 by DeborahSchwarzRPA in True Stories
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On September 21, 2008, 26-year old ML started feeling short of breath. It quickly got worse; she began to feel dizzy and started sweating profusely. Her family called an ambulance and she was rushed to NewYork Presbyterian’s The Allen Hospital, where her condition worsened. Her lungs were failing. Corey Ventetuolo, MD, her first pulmonologist, knew that ML needed to be transferred to NewYork-Presbyterian/Columbia University Medical Center, but feared that she would die during the brief journey. Her family decided to take the risk.
ML did indeed flatline during the ambulance ride, but she did not die. Her survival despite severe lung failure is due Read more »
*This blog post was originally published at Columbia University Department of Surgery Blog*
September 30th, 2011 by DeborahSchwarzRPA in True Stories
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Robert Loftus
On August 5, 2011,19-year-old Robert Loftus tripped while catching the game-winning touchdown pass in a football game with friends. He broke his leg — both his tibia and fibula — and was rushed to the ER at Hudson Valley Hospital Center. On the morning of the 6th, he was visited by his orthopedist, Dr. Steven Small, and surgery to place a rod in his broken leg was scheduled for 3 pm that day. Just as the operation was beginning, however, the anesthesiologist was alarmed to find that Robert’s lungs were dangerously filling with fluid. The surgery was called off, and while still in the OR, Robert was put on a mechanical ventilator.
Robert had developed a severe case of ARDS, or acute respiratory distress syndrome; his lungs were failing. After four days on the ventilator, Robert’s breathing was not improving; on the contrary, it was rapidly getting worse. Recognizing the severity of his patient’s condition, Read more »
*This blog post was originally published at Columbia University Department of Surgery Blog*
June 4th, 2011 by DeborahSchwarzRPA in News
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New York Times article highlights transplant donor and recipients at New York-Presbyterian Hospital
UK NHS Organ Donation Checkbox
As organ transplantation has advanced and improved in recent decades, more and more patients’ lives are saved every year. But the most pressing problem in organ transplantation has yet to be solved: the shortage of donor organs available to the thousands of people waiting on lists for a new kidney, liver, lung, heart, or other organ. People who intend to donate may not indicate their wishes to family members before their death, or families are reluctant to make that decision in the midst of profound grief and loss. For others, donating an organ was just never something they knew much about or even considered.
When they do choose to donate a loved one’s organs, families usually remain anonymous, as do those whose lives they save. Perhaps that is why articles like the one in the New York Times on May 16, 2011, touch and inspire readers so deeply. This version of an increasingly common story captures the essential soul-searching, as well as the profound gratitude, hope, and solace, that marked the meeting of Mirtala Garcia and the people who received her husband’s organs. Read more »
*This blog post was originally published at Columbia University Department of Surgery Blog*
March 11th, 2011 by DavedeBronkart in Research, True Stories
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[Recently] NPR’s popular program “Talk of the Nation” covered something we discuss often: How e-patients find information and find each other online. Featured guests were Pat Furlong, mother of two boys with a rare disease who started an online community, and Susannah Fox of the Pew Internet and American Life Project, a frequent contributor here. The audio is here.
It’s a good combination: Pat speaks from the heart about her own experience and her passion for community, and Susannah, as usual, speaks as an “internet geologist” — as she once put it, “A geologist doesn’t have opinions about the rocks, she just observes and describes them.” Susannah spoke about her newly-released report “Peer-To-Peer Healthcare,” about which she recently wrote here.
Listener comments begin around 13:00. Examples:
– A woman describes how she started a Facebook group for her painful chronic condition (ankylosing spondylitis) and it’s grown into a website, HurtingButHelpful.org. (Spoonies, take note!) What drove her to create a patient community? “There’s no one else who can understand what I’m talking about.”
– The mother of a newborn with a heart defect found similar parents online. Hearing their stories — and even seeing an upsetting photo — helped her prepare for the surgery.
– On the downside, the daughter of an ovarian cancer patient said her now-cured mom keeps going online to patient communities and getting scared by what she reads. (Host Neal Conan’s observation: “There other parts of the computer that can be addictive, and I guess this one can, too.”)
It’s heartening to hear coverage of online patient communities, including the risks and challenges, in a respected outlet like NPR. (Time covered it, too, a year ago.) And there’s no equal for the reality check of Pew’s data. Some patient activists suggest (and some people fear) that the Internet “frees” patients from doctors, but Pew says that’s not what people are doing. Read more »
*This blog post was originally published at e-Patients.net*
