August 12th, 2007 by Dr. Val Jones in True Stories
5 Comments »
This week’s host of medical grand rounds invited individuals to submit blog posts that feature stories about “sudden change.” As I meditated on this theme – I realized that one of my patients played a key role in my sudden career change from academic medicine to joining a healthcare revolution.
As chief resident in PM&R, I spent a few days a month at an inner city clinic in the Bronx, helping to treat children with disabilities. The clinic was dingy, overcrowded, largely windowless, and had waiting lines out the door starting at 8am. Home health attendants generally accompanied the wheelchair-bound children to the clinic as many of them were orphans living in group home environments. The kids had conditions ranging from cerebral palsy, to spinal cord injury from gun shot wounds, to severe spina bifida. They sat together in a tangled waiting room cluttered with wheelchairs, walkers, crutches, and various prosthetics and orthotics. There were no toys or even a TV for their amusement. The air conditioning didn’t work well, and a lone clock ticked its way through the day with a bold black and white face.
The home health aides were eager to be called back to the examination rooms so that they could escape the oppressive conditions of the waiting room. I opened the door to the room and called the name of one young man (we’ll call him Sam) and an aide leapt to her feet, knocking over another patient’s ankle-foot orthosis in the process. She pushed Sam’s electric wheelchair through a series of obstacles to the exit door and back towards the examining room.
Sam was a teenager with cerebral palsy and moderate cognitive deficits. His spine was curved into an S shape from the years of being unable to control his muscles, and he displayed the usual prominent teeth with thick gums of a patient who’d been on long-term anti-seizure medications. He looked up at me with trepidation, perhaps fearing that he’d receive botox injections for his spastic leg muscles during the visit. His wheelchair was battered and worn, with old food crumbs adhering to the nooks and crannies.
“What brings Sam here today?” I asked the home health aide, knowing that Sam was non-verbal. She told me that the joystick of his electric wheelchair had been broken for 10 months (the chair only moved to the left – and would spin in circles if the joystick were engaged), and Sam was unable to get around without someone pushing him. Previous petitions for a joystick part were denied by Medicare because the wheelchair was “too new” to qualify for spare parts according to their rules. They had come back to the clinic once a month for 10 months to ask a physician to fill out more paperwork to demonstrate the medical necessity of the spare part. That paperwork had been mailed each month as per instructions (there was no electronic submission process), but there had been no response to the request. Phone calls resulted in long waits on automated loops, without the ability to speak to a real person. The missing part was valued at ~$40.
I examined Sam and found that he had a large ulcer on his sacrum. The home health aid explained that Sam had been spending most of his awake time in a loaner wheelchair without the customized cushioning that his body needs to keep the pressure off his thin skin. She said that she had tried to put the electric wheelchair cushion on the manual chair, but it kept slipping off and was unsafe. Sam’s skin had been in perfect condition until the joystick malfunction. I asked if he’d been having fevers. The aide responded that he had, but she just figured it was because of the summer heat.
Sam was transferred from the clinic to the hospital for IV antibiotics, wound debridement, and a plastic surgery flap to cover the gaping ulcer hole. His ulcer was infected and had given him blood poisoning (sepsis). While in the hospital he contracted pneumonia since he had difficulty clearing his secretions. He had to go to the ICU for a period of time due to respiratory failure. Sam’s home health aide didn’t visit him in the hospital, and since he was an orphan who was unable to speak, the hospital staff had to rely on his paper medical chart from the group home for his medical history. Unfortunately, his paper record was difficult to read (due to poor handwriting) and the hospital clerk never transferred his allergy profile into the hospital EMR. Sam was violently allergic to a certain antibiotic (which he was given for his pneumonia), and he developed Stevens-Johnson Syndrome and eventually died of a combination of anaphylaxis, sepsis, and respiratory failure.
When I heard about Sam’s tragic fate, it occurred to me that the entire system had let him down. Bureaucratic red tape had prevented him from getting his wheelchair part, poor care at his group home had resulted in a severe ulcer, unreliable transfer of information at the hospital resulted in a life-threatening allergic reaction, and a lack of continuity of care ensured his fate. Sam had no voice and no advocate. He died frightened and alone, a life valued at <$40 in a downward spiral of SNAFUs beginning with denial of a wheelchair part that would give him mobility and freedom in a world where he had little to look forward to.
Sam’s story was the last straw in my long list of frustrations with the healthcare system. I began looking for a way to contribute to some large scale improvements – and felt that IT and enhanced information sharing would be the foundation of any true revolution in healthcare. And so when I learned about Revolution Health’s mission and vision, I eagerly joined the team. This is a 20 year project – creating the online medical home for America, with complete and secure interoperability between hospitals, health plans, healthcare professionals, and patients. But we’re committed to it, we’re building the foundation for it now, and we know that if successful – people like Sam will have a new chance at life. I can only hope that my “sudden change” will have long lasting effects on those who desperately need a change in healthcare.This post originally appeared on Dr. Val’s blog at RevolutionHealth.com.
July 30th, 2007 by Dr. Val Jones in Opinion
1 Comment »
You may remember the horrifying story of a young French woman who passed out after taking some sedatives, and her dog tried to wake her up by gnawing on her face. She was the first recipient of a face transplant, and is on immunosuppressant therapy to this day to prevent rejection of the donor tissue. This immunosuppression puts her at greater risk for cancer and infections and raises the issue of whether the benefits (a closer approximation of a normal appearance than reconstruction of her face from her own body tissue) outweigh the risks (a shortened lifespan and potential hospitalizations for infections, eventual tissue rejection, and perhaps cancer.)
Many people suffer severe facial disfigurement from accidents and burns every year. Face transplants could give them a chance at a relatively normal appearance – but American doctors are unwilling to put them at risk for what is in essence a cosmetic procedure. However, Harvard physicians are now offering face transplants to those who are already on immunosuppressants for organ transplants they’ve previously received. As you may imagine, the number of people who qualify for face transplants is rather small – as you’d have to have had an organ transplant and then coincidentally sustained severe trauma and tissue loss to the face.
The Boston Globe ran an interesting story on a man who was severely disfigured by facial burns and could have been eligible for a face transplant in France. He chose to undergo reconstruction from his own tissues, which requires no immunosuppression. He says that he is glad that his body is healthy, that he requires no medications, and that the risks of a face transplant are not worth the benefits, though he remains severely disfigured.
I think it’s interesting that the French took a different stand on this issue – allowing people to choose to have a cosmetic procedure at the expense of general health, longevity, and risk for life-threatening illness.
I have known patients who decline limb amputations for fear of disfigurement – even though the gangrene in the limb is sure to result in sepsis and eventual death. A person’s appearance and personal identity are sometimes inextricably linked – so that some would choose death over disfigurement (even of a limb). Is this choice pathological, or is it their right to choose? Given the choice between disfigurement or death, I’d choose disfigurement. I’d also not choose a face transplant over reconstruction from my own tissues, even if the aesthetic outcome is inferior. Still, I’m hesitant to say that those who’d rather live a shorter, less healthy life with a more natural face are unilaterally making the wrong choice for them. For the time being, though, people who wish to make that choice will need to do so outside of the US.This post originally appeared on Dr. Val’s blog at RevolutionHealth.com.
July 18th, 2007 by Dr. Val Jones in News
4 Comments »
ABC news created an online photo album of the actors from the movie The Princess Bride. They display headshots of the actors from 20 years ago (when the film was created) beside a current image. It was a real eye-opener for me, seeing how these people have changed in appearance over the years – though in all fairness, ABC didn’t choose the most flattering follow up pictures. Nicer ones are displayed in the link to the movie above.
Nonetheless, this raises the issue of aging – and what each of us will look like in 20 years. I think a lot of it depends on the little choices we make each day – what we eat, if we exercise, if we’re stressed, if we have loving relationships in our lives… these little things add up and imprint themselves on our faces and bodies for all to see. What will your body say about you in 20 years? Mine’s going to have a lot of laugh lines, and probably a good deal of cellulite… ahem. But I’m going to keep aiming towards the leafy green veggies and regular exercise. If you’d like to join me, you’ll find some helpful programs right here at Revolution Health.
Bonus Link: My friend Tony Via suggested this link to fake celebrity makeovers (someone took the time to create how they might look as “normal” overweight Americans – thank you, Photoshop). Quite entertaining – and more fuel for the “eat right and exercise” plan.This post originally appeared on Dr. Val’s blog at RevolutionHealth.com.
June 14th, 2007 by Dr. Val Jones in News
No Comments »
It’s funny how cultures become obsessed with certain physical attributes. In the middle ages warts confirmed the identity of witches, a gap between the front teeth was considered pleasing, and a “heart shaped face” was the epitome of beauty. This past century we’ve vacillated between pleasantly plump to “rail thin” as a standard of loveliness… and in recent years women have become preoccupied with a new menace: cellulite.
Of course, no one had even noticed cellulite until the French coined the term 150 years ago. And unhappily that plague crossed the Atlantic in the 1960s, terrorizing pleasantly plump beauties from that day forward.
An entire industry has sprouted up to combat this dimpled foe – everything from massage to liposuction to caffeinated lotions claim that they will restore a smooth appearance to irregular thighs. Unfortunately, those promises are all empty.
Yes, that’s right – there is no research to suggest that any cellulite treatment has anything but the most modest of effects. The bottom line is that dimply skin is determined by your genes – same as your eye color – and that the majority of women have some degree of cellulite no matter how thin they are. Sure, estrogen can play a role – but basically there’s no escaping estrogen as a woman!
So if you’re one of those people who is a little more dimply than average – here’s what you can do:
1. Wear clothes that cover the dimples. Spanx and biker shorts can be worn underneath trousers and longer skirts to give a smoother appearance.
2. Adjust the lighting in your bedroom and bathroom – diffuse light doesn’t reflect shadows from skin imperfections as much. It’s amazing how lighting can emphasize (or de-emphasize) cellulite.
3. Stay fit and tone your body as much as possible. That way if the rest of your body is lean and firm, the cellulite won’t be that big a deal.
4. Recognize that you will always have cellulite. It’s not your fault, you didn’t cause it and you can’t solve it. Don’t waste your money on creams and treatments that don’t work.
5. Remember that the vast majority of guys don’t even notice cellulite (it’s virtually invisible due to their fixation on other anatomical parts).
6. Blame it on the French. If you fixate on your cellulite you are letting them win! Show those French your best laissez-faire attitude by completely ignoring this “disease” that they concocted.
I vote that we go back to the days before the invention of cellulite and live a carefree, confident existence.This post originally appeared on Dr. Val’s blog at RevolutionHealth.com.
May 4th, 2007 by Dr. Val Jones in True Stories
No Comments »
A few weeks ago I tripped and fell on the sidewalk. I went down on hands and knees and scraped my left knee pretty badly. The onlookers pretended not to notice, I suppose sparing me the embarrassment of asking if I was ok. I dusted myself off and bled down my leg en route to work.
Since then I kept the wound moist with neosporin and band aids, allowing the skin to heal with minimal scarring. But as I marveled at how painful this little patch of road burn is, I remembered a young girl I met about a decade ago who had a much more serious burn.
Inga was camping with her parents in a synthetic tent. They had spent the day fishing and canoing near a campground somewhere in Eastern Europe. They were huddled together inside the tent in the cool of the evening, speaking animatedly about the day’s events and the beauty of nature when Inga accidentally knocked over the kerosene lamp situated near the exit flap. The kerosene spilled out onto the tent and the fire ignited immediately. The tent began to melt in the fire and the zipper got stuck in the hot plastic material. The unimaginable screams of her dying parents as they burned alive, trapped in this tent, brought help just in time to save Inga’s life.
But Inga was horribly disfigured by the fire. She spent nearly a year in the hospital, receiving skin grafts and fighting off infections. She was eventually able to return to school, but was treated like an outcast. Her former friends were too horrified by her appearance to welcome her back and she spent most of her days sitting alone in the corner, covering her face with a scarf, blaming herself for the death of her own parents.
Her story reached the compassionate ears of a plastic surgeon friend of mine. He traveled to Eastern Europe to meet Inga and see if he could help her. As it turns out, she had no living relatives and was dirt poor. He could see that the medical team taking care of her had carefully covered the defects in her skin, but had not attempted to restore a normal appearance with modern plastic surgery techniques.
The surgeon knew that it would take many surgeries over many years to give her the best result possible. After some debate and soul searching, he decided to sponsor Inga to come to America where he committed to taking care of her financial needs and to giving her a new life.
I first met Inga after she had been in the states for several years. She looked like a burn victim, with tight facial skin and abnormal contours – but compared to how she appeared in the photos of when she first arrived (with no nose or cheek flesh at all) this was a huge improvement. She was meeting with the surgeon to have a seroma evacuated from under her left cheek. He had to remove the extra fluid with a large syringe.
As I watched him numb the area and sink a deep, large bore needle into this young girl’s face, I cringed internally but tried to appear unphased for her sake. She didn’t flinch, but sat staring forward bravely, her grey eyes fixed on the wall in front of her. I saw a tear well up and trickle down her disfigured cheek during the procedure and I instinctively reached for her hand. The tears continued in silence. This burn had penetrated so much deeper than the skin.
I haven’t seen Inga since, though I’ve heard that she’s doing well in school, has made some good friends, and is planning to become a nurse one day. Her decision to devote her life to caring for others is a beautiful example of “paying it forward.”This post originally appeared on Dr. Val’s blog at RevolutionHealth.com.
