BRUSH STROKES: Stroke affects everyone – the survivor, their caregiver and their families. We hope you find inspiration, hope, and support in these stories written by people whose lives have been touched by stroke. These are personal accounts from people in our community describing their experiences in their own words. We encourage you to send in your stroke story in the hope that other readers will be strengthened by your words.
|Eric Swan, with daughters Emily (left) and Erica, is recovering from a brain stem stroke.|
Navigating A Broken Beth Ann Swan, PhD, CRNP, FAAN, the dean of Thomas Jefferson University’s Jefferson School of Nursing, knows firsthand the difficulties caregivers face navigating the health system to advocate for appropriate care for a stroke survivor. Mrs. Swan was recently interviewed by Karen Heller, columnist for The Philadelphia Inquirer.
Philadelphia lawyer Eric Swan was visiting Chicago in April of last year when he had a brain stem stroke, something no one plans for, and certainly not when so far away. His care proved expensive, lengthy, and complicated.
"Along the way there would be gaps in the care Eric received, gaps so large they were more like chasms," his wife, Beth Ann, writes in the distinguished policy journal Health Affairs.
"The system, it's just broken," she tells me. How was this news to Swan, with 30 years in health care, professor and now dean of the Jefferson School of Nursing? "I guess I didn't have a full appreciation of how broken the system really was."
She discovered the hard way. Eric, then 53, couldn't walk or swallow, and suffered from a host of neurological issues. Among her challenges was getting him transferred from a community hospital to an academic health center in Chicago. After 10 days of hospitalization, she had to acquire copies of his records and get him transported from Chicago to an acute rehab hospital in Philadelphia. All proved challenging, and that's with Swan's being able to phone Thomas Jefferson University's president for assistance. The couple have two daughters, one in college and the other in middle school when Eric had the stroke.
"As his wife, I wanted to cry," she writes. "Instead I put on a brave face and became his care manager." Swan supervised Eric's care from six or more primary doctors and specialists, and then supervised the home phase, the 29 pages of prescription information. Even with a doctorate in nursing and plenty of experience in health care, she found herself overwhelmed.
"The patient and his family truly have to be at the center of the care," she says. "Clearly, in our situation, that wasn't the case." As with so many patients.
The situation worsened once Eric left Jefferson's expert care, a situation common for many patients who have suffered strokes or require ongoing posthospital care. "After he was discharged, we were on our own," Swan says. She had to handle an erroneous $23,312 bill from the Chicago community hospital that resulted in a collection notice, plus all the myriad dealings with the insurance company.
So Swan knew, and yet she didn't know how bad the situation can get. "You can't prepare for this. You can't live your life preparing for it." She took notes, asking questions of every medical professional, writing everything down in a black marble copybook. She advises everyone to create a reference book.
Nineteen months later, Eric is walking and talking but easily fatigues. He requires help with balance and coordination; needs to be protective of his right eye, his left arm and left leg, where sensation is abnormal; and has trouble swallowing some foods.
Much more professional medical care and coordination are needed for patients like Eric Swan. After a patient leaves the hospital, Swan envisions "a team of registered nurses to coordinate care and manage transition. I don't know who is going to pay, but I know that it would lower the rate of rehospitalization, the rate of emergency room use," high rates hospitals work assiduously to avoid. "I would think the amount of money insurance companies pay for these events could be lowered and spent on coordinating care and managing transitions." A win for everyone.
Swan applied for a $2.3 million federal grant to create a model for transitional care, managed by a team of registered nurses. "This age group from 18 to 64 tends to fall through the cracks," she says. "My husband was a healthy, energetic, independent person and, in a split second, became chronically ill. Because of his age and health, the models in place wouldn't apply."
She'll find out about the grant early next year. Swan's a tireless advocate for reform, educating her nurses and students. She's optimistic that the Affordable Care Act's reform strategy will create better and more efficient care. "This is my passion. It's personal," she says. "Any family could potentially have a similar experience, and it needs to change."
Reprinted as a public service from www.Philly.com, Posted by Karen Heller, columnist for The Philadelphia Inquirer, Wednesday, November 14, 2012, 3:01 AM.
To read the article Beth Ann Swan wrote for the distinguished Health Policy Journal, Health Affairs, please click here.
Joshua Crompton: April 18th 2012 started like any other Wednesday, I woke up at 9ish and lounged around my apartment until I had to get ready for work at 12:30pm. I am the night assignment editor for CBS News in Philadelphia, 31 years old and relatively healthy.
31 Year Old Stroke Survivor
Going through my normal routine I set my phone up to play some music while I got ready…todays choice? Elton John’s greatest hits starting with "Levon". Just letting it play, I sing along as one of my favorites songs starts.
As "Tiny Dancer" starts, I smile and start to sing along much like the popular scene from "Almost Famous". Singing loudly and out of key, I belt out the chorus "HOLD ME CLOSER TINY DANCER", no doubt annoying my cat as the off pitch melody echoes through my tiny one bedroom apt just outside of Center City Philadelphia. Then it happened, as Elton was singing about his blue jean baby, without any warning and with the force of what I can only imagine a gunshot feels like, I collapsed. Knowing this isn’t a normal headache, I somehow was able to get to my feet and step out of the shower. Still not aware of what is happening, but knowing it isn't good, I try to take a step to get to my phone, I collapse again. The paralysis had set in on my entire right side.
Struggling to slide around my small bathroom and get to my phone, I am able to reach my left hand up to grab the phone. "Tiny Dancer" is still playing as I struggle to focus on my pass code. I couldn’t understand why it wasn't working, but I knew I needed to get Paramedics on the phone. Using the phones emergency call feature, I get 911 on the phone and just keep repeating my address. The call is dropped. Using all of the focus I have left, I call 911 back and explain to the operator "I think I am having a stroke, and I need help". “Ok sir, you’re doing great. We are on the way" I think is what the operator told me. Then the call is lost again.
In this moment, I am very aware that this may be my last moments on earth. Elton John is still singing, but has moved on to "Rocket Man". And then it hit me – I’m soaking wet, completely naked, and listening to Elton John. This is going to be one hell of a story for the Paramedics. I have since called this scenario the “Perfect Storm of Awkward”.
Not knowing how much time has passed, but knowing Elton is still singing, the paramedics arrive and make their way into my small second floor apartment and manage to get me to the emergency room. This is the last thing I remember of the month of April 2012.
It was explained to me that I had an AVM burst on the left side of my brain causing an active bleed, sending massive amounts of blood into my brain. I couldn't understand why this happened to me as I am young and try to stay in shape. I was told I was born with this AVM (Arterio-Venous Malformation). Having never had headaches, or any other symptoms, it took everyone by surprise.
I started the rehab process two and a half weeks after the stroke, after an angiogram, and a round of paste shot into the affected area of my brain. As rehab started, I still had very little movement in my right side, but I did my therapy every day, in my room on my own, hoping that one day it will all come back. I don't know when or how it happened, but the next thing I knew May was ending and my arm was working! I can write, feed myself and even shave (VERY SLOWLY).
During inpatient rehab, I am working harder than I ever have before. I am scheduled to do an "outing" with my recreational therapist and physical therapist, to get me used to doing everyday things in "the real world". That day’s activity was scheduling a cab pickup and telling the driver how to get where I am going. I decide I wanted to go to the Philadelphia Museum of Art.
As we get to the museum, I am standing at the bottom of the massive stairs made forever famous by Sylvester Stallone in the movie Rocky. I look at my physical therapist and make a decision. I’m going to climb these stairs today. With a cane in one hand, and my physical therapist on my arm, I start the trek up the most famous steps in Philadelphia. As tourists run past me humming the theme song from the movie, I push forward one step at a time. Tired and wanting to quit, I channel the spirit of the fictional boxer, Rocky Balboa from South Philly, and keep slowly climbing the stairs. Before I knew it, I was at the top. My physical therapist and I stand in the spot where Rocky Balboa stood.
As I look down on the City of Brotherly Love, the reality of the situation hits me like a ton of bricks. Two months ago, I was paralyzed and hours away from dying. I just walked up the Art Museum steps! However a bigger problem has arrived...How the hell am I going to get down? Looking at my therapist, we made the long slow walk down the stairs. I went back to the Rehab Center feeling like Rocky at the end of Part 2 when he defeats Apollo Creed to become the champion.
I have since been released from in patient rehab. I still do the art museum steps at least once a week and it is getting easier and faster! My arm is almost back to 100% and I am working hard to get my foot back. It is a process, but I am taking it one day at a time.
Thank You for Saving My Mothers LifeI’m Amy from Hockessin, DE. My sister, Faith and I receive the best possible Mother’s Day gift this year – our mother is alive today because of the expertise and dedication of Jefferson’s stroke team, but I am especially grateful for Toby Mazer. I was with my mother in Florida where she was spending the winter but experiencing a series of TIAs (Transient Ishemic Attacks). I called my sister in Delaware and she told me about a TV commercial she saw for Jefferson’s Stroke Center. When I called, I expected to get a recorded message and to wait a long time for a response.
Instead, Toby answered, called me back within 15 minutes and listened to my panicked cry for help. She immediately told me to get my mother up to Jefferson ASAP – and she gave me advice on how to do that, what to tell her doctors at the hospital in Florida, etc. Toby was committed to helping me, she even gave me her cell and home phone numbers and said to call her any time over the weekend if I needed her as we drove my mom from Florida to Philly. Monday night, I called Toby, who guided us through the Emergency Department procedure.
She then set up a consult with Dr. Rodney Bell who read all my mom’s tests, told us options and called the whole medical team together. It turned out that my mother’s middle cerebral artery was blocked, and Dr. Robert Rosenwasser had to perform an EC-IC bypass to prevent her from having a major stroke. They told us that my mom is a walking miracle. With the blockage that she had, most people would have already had a major stroke. I know that without Toby and the TV commercial, my mother would not be here today.
If it weren’t for Toby Mazer’s dedication and belief in Jefferson’s magnificent work, my sister and I would never have brought her to Jefferson to have the bypass to prevent her from having a stroke. Toby is truly a gem for Jefferson!!
Strides for Strokes 5KToday was also pretty cool because my brother and I did a 5K race. The race is the Delaware Valley Stroke Council's "Strides for Stroke". A little over a year ago, my Dad had a stroke.
What can I say besides it sucked and it is really hard on my family. He was in the hospital for a long time, but he is recovering now.
Strokes are a really big health issue. Sometimes it doesn't matter how young or fit or healthy a person is, they still happen. Well, to support stroke awareness and research, my brother and I ran the 5K. He, my mom, AJ, and myself did it last year as well.
I am really out of shape (too much flickr, not enough exercise!) but I did okay. I got a bronze metal for finishing third in the 30 to 39 age group. I think I was around 10th all together, but not sure yet. Time = 19 min 07 sec. My brother did really well too. He shaved 5 seconds off his best time.