Massachusetts Senator Ted Kennedy’s recently-diagnosed brain cancer has resulted in a flurry of coverage, not only of his personal situation, but of medically-related issues as well.
Among the most helpful is this article from CNN. Senator Kennedy is in a position to acquire the best medical care possible; most of the rest of us must rely on lesser resources. Reporter Elizabeth Cohen has provided a great blueprint for acquiring the best level of care possible.
Post-cancer diagnosis steps outlined in the CNN article include:
1. Get basic information about your cancer
2. Pick a doctor
3. Learn how to read your lab reports
4. Find alternative medicine for cancer
5. Find support groups
6. Find clinical trials
7. Figure out how to pay for all this
The article argues, quite wisely, I think, for following these steps in this order. It’s full of helpful links and well worth checking out.
Above all, every patient, whether a Kennedy or Jane or John Doe, must accept and remember that there is only one person capable of ensuring quality health care for him- or herself. That person is you, the patient. Illness is one of those times in life when knowledge really is power.
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In November 2005, Isabelle Dinoire, a 38-year-old woman whose face was mauled by her dog, received an historic face transplant at the Centre Hospitalier Universitaire d’Amiens in France. Two years later, her doctors have published a follow-up study of her case in the New England Journal of Medicine.
According to the NEJM article, Mlle. Dinoire “the patient is very satisfied with the results of the transplant”. She is able to eat, drink, and speak normally; it is said that, with make-up, her surgical scars are no longer evident. The results do appear to be remarkable:
The picture on the left is NOT a post-transplant image; it’s from 2001, four years before the face transplant, when Mlle. Dinoire was 34 years old. The middle picture is from November, 2006, one year post-transplant. The right picture is of Mlle. Dinoire in June, 2007, eighteen months post-transplant, showing her natural face, without make-up.
The post-surgical journey has been difficult. Mlle. Dinoire has suffered several bouts of rejection and one of kidney failure. She has battled infections; she must, of course, take immune-suppresents for the rest of her life. The return of functional abilities has exceeded expectations, though. This chart (left), from the New England Journal of Medicine, tracks the changes throughout the first six months; her abilities now far exceed those noted here.
Mlle. Dinoire’s case is controversial for many reasons. One of her doctors initially reported that she had attempted suicide; Mlle. Dinoire herself confirmed this in an interview with a London newspaper. Her injuries occurred when her dog was trying to rouse her from unconsciousness following the drug overdose. (Her donor did commit suicide, adding another layer of emotional complexity to the case.)
Mlle. Dinoire, a single mother, has a history of depression, and had been unemployed for a year prior to the incident. Criticism has been leveled at her doctors, who, some feel, may have chosen a particularly vulnerable patient for this historic operation.
Long-term, the physical problems alone may prove overwhelming. Notes The Washington Post:
Maria Siemionow, director of plastic surgery research and training at the Cleveland Clinic, which has been planning to do face transplants, expressed concern about Dinoire’s “unexpectedly aggressive immune response.” Scientists need better ways to prevent rejection of large, complex tissues such as faces, she said.
Siemionow, along with others, also expresses concern about the psychological implications; no psychological study has been published in connection with Mlle. Dinoire’s treatment.
British filmmaker Michael Hughes has made a documentary of the surgery; Mlle. Dinoire allegedly signed a deal for movie rights to her story earlier this year, netting (according to one account) over $400,000 (USD). The Hughes documentary is reviewed here (in French).
Whether Mlle. Dinoire’s pioneering venture will prove worthwhile over time remains to be seen. The potential scope of this experiment is breathtaking, yet it cannot help but recall the innocence and irony of Miranda’s words in Shakespeare’s Tempest:
O brave new world
That has such people in’t!
Related:
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Few people alive today (at least in the USA) fully understand what the phrase ‘in the trenches’ meant during World War I. This photo, from an upcoming exhibit at the National Army Museum in Chelsea, UK, illustrates the vulnerability of the soldiers who fought in that terrible war. Deep earthen walls protected bodies, but left heads and faces unprotected, resulting in deadly and disfiguring injuries.
New Zealand surgeon Harold Gillies, sent to France in 1915, radically changed the previous approach to these injuries, which had involved little more than stitching up the wounds. While treating his patients, Gillies developed techniques which ushered in the modern era of plastic surgery: drawing flaps of healthy skin into tubes to grow more skin for grafting; using bone and cartilage to provide structure under the skin; instituting grafting procedures that involved stages rather than one massive graft.
“We remember the dead, but we don’t remember the wounded, the people who had to go on living,” exhibition co-curator Samantha Doty says.
The NAM exhibit features previously unseen images of these literally faceless men, and documents Gillies’ work. For these soldiers, appearance was far more than a matter of self-regard, or of vanity. The crudity of previous methods of treating these injuries not only resulted in death, but created such severe disfigurements in survivors that the ‘cure’ actually caused disabilities. Gillies’ field work, though not always as successful as shown in these pictures of William Spreckley, changed the way these injuries were treated forever.
Faces of Battle opens on November 10; the BBC online has a series of images from the exhibit.
Via: medGadget
Related: The Tin Noses Shop
]]>Keep old Medical Appointment Record sheets in Section 2, and keep past Current Medications records in Section 3 for future reference. They’ll come in handy, and it’ll be much easier for you to find the information in your binder than to get your doctor to find it in the office file.
Useful tip: Never again answer when a medical assistant asks you what medications you currently take. Instead, make a copy of Current Medications every time you go to the doctor, and simply hand over the updated copy to be kept in your permanent file. Your doctor will be thrilled, once he or she gets over the shock, and you’ll be happy because your doctor will never again wonder what the assistant’s scribble really meant. Win-win for everybody! (Yes, I learned this the hard way.)
I typed up a personal Medical History for each of us, and keep a copy in Section 5. It gets updated it with each event. For everyone, this should include an inoculation history, especially tetanus shot dates.
Useful tip: Give a copy of this page to every new doctor you see. Nothing’s more helpful that a clear, concise medical history. Ever watch ‘House’? If Hugh Laurie’s patients only had your notebook, half the time there’d be no show because that elusive bit of missing medical history would be right before the infamous misanthrope’s eyes!
Each of us also has a Family Health History — this isn’t your history, it’s the history of your siblings, parents, grandparents — as much as you know. This goes in Section 6.
Useful tip: Make sure every new doctor has a copy of this, as well. It’s a lot easier to read a printed, chronologically organized history than it is to try to interpret the scribbles in the too-small boxes on the form the office gave you to fill out. “Easier to read” can also be translated as “information more accurately interpreted”.
X-rays are increasingly being copied to CD in our neck of the woods, which makes storing them in a binder really simple — you can even buy pages meant specifically for CDs. I keep these in Section 8.
Useful tip: Get a copy of every x-ray taken. If you request it at the moment of the test, you may be able to leave with it, instead of having to follow up later. I learned to do this after a famous university medical center destroyed my neurological x-rays after only seven years. What were they thinking? Seven years in neurology can be nothing in the case of slowly-changing pathology!
We keep oversized x-rays in a large artist’s portfolio — a stiff plastic-like envelope with a handle. It’s too big to fit in a file drawer (some of our x-rays are old and huge), so it’s kept in the back of a closet where it’s easy to get to as needed.
I always make sure I have a business card from every doctor we see, as well as for any hospital department or individual we might have any reason to contact again (radiology, medical records, etc., and yes, the business office, if you’re talking to them). They’re kept in Section One. Being able to get directly to a specific person or department saves time and frustration; having the right FAX number on hand is really useful when doctors are a part of your life. Seeing the number on a card avoids mis-hearing it over the phone when you’re about to FAX something. Keeping the cards means you have contact information for doctors you’ve seen in the past, but may see no longer — quite useful when it matters.
Useful tip: Insist on having copies of blood and other tests and keep them in Section Eight. Your doctor, or a specialist, may want to order ‘official’ copies, but you’ll at least have the information with you when it’s being discussed — a huge advantage for you. Pull out only the relevant test results from this section as needed for a specific appointment so that you have the right ones handy on that particular day.
Putting a record book together requires a little effort at first, but you’ll probably be amazed at the difference it makes at every appointment, and pleased at how easy it makes tracking your health. Of course, these are just guidelines — over time, you’ll adapt your own notebook(s) as you want and need to. Once it’s put together, each update takes only a few minutes — well worth it compared to the frustration of not having the information handy the next time you need it.
Useful tip: Have kids? Keeping a medical notebook from birth can streamline baby care, makes filling out school records a snap, and is an invaluable gift to send off with your young adult when he or she leaves home — as well as modeling medical empowerment for your adult ‘child’.
When it comes to medicine, ‘empowerment’ is the watchword — no one who is responsible for your medical care (or for medical care for someone you love) will ever care as much about it as you do. And no one will ever pay as much attention to your medical care, and needs, as you can and must. A well-maintained medical notebook is your first and most important weapon in the fight to maintain as high a standard of health as possible. Knowledge is power!
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]]>Before each appointment, I fill out a form I made on my computer and printed up in advance. It’s my Medical Appointment Record form, which goes in Section 2. I’ve typed in cues on the page (date, doctor’s name, current symptoms, any questions or concerns). Before we go, I fill in the blanks. This ensures that we have a clear idea of what we want to know and that we’re organized and able to use the appointment time effectively.
In Section 3 I keep printed lists of current medications, with the patient’s name, the title (Current Medications) and the date in bold letters. Each medication is listed, followed by the date it was first prescribed, the strength, the dose frequency, and the diagnosis or the purpose of the medication.
I type any known medical allergies in bold, capital letters in bright red across the top of the Current Medications page. ‘Obvious’ is good where there’s potential danger.
I print two copies of the Current Medications page before each appointment — one for the notebook, which stays in Section 3, and one for the doctor’s office, which gets put into Section 2, right after the Medical Appointment Record form. Vitamins and any dietary supplements also go on this page, along with any consistently used OTC (over-the-counter) products like antacids, arthritis rubs, etc.
If we’re seeing a new doctor, a copy of the personal Medical History and one of the Family Health History also go into Section 2, so it’s easy to turn over the copies at the appointment.
Before each appointment, I put copies of any test results that are relevant to that day’s appointment into Section 4. Any test results that haven’t been discussed yet, or about which there are questions, get moved from either Section 4 (Current Test Results) or Section 8 (Other Info) into the clear pocket in the front of the binder so they can be referred to easily when talking with medical personnel.
Once we’re at the office, and as soon as we get in to the examining room, I write down the name of the nurse or assistant and his or her title on the Medical Appointment Record sheet, and make clear notes as advice is dispensed. I also record weight, blood pressure, and pulse on this page, as each is taken.
After each appointment, I review any new information, update any new medication information and make any new additions to the personal medical history so that the record book is ready to go next time it’s needed.
Making a Medical Record Book, Part 1 — Putting It Together
]]>An inexpensive three-ring binder from an office supply store made it much easier to keep information flowing and doctor visits productive. After I made Dad’s, I went home and made one for each member of my family.
You’ll adapt my suggestions to fit your own circumstances, but here’s what’s in each of the notebooks we use, in order as I put them in the binder, starting at the front:
- a transparent plastic sleeve for any documents that need to be discussed at the current appointment
- a plastic zipper pouch with a clear front for a pen or two, prescriptions or anything too small to keep or carry safely elsewhere in the binder
- a set of clear plastic dividers to mark off the sections described below (clear so you can see what’s behind them; plastic for durability)
- Section 1 — directions, referral information, with and a page with clear pockets for business cards (make sure you have your doctors’ business cards here)
- Section 2 — appointment records
- Section 3 — current medications
- Section 4 — current test results
- Section 5 — medical history
- Section 6 — family health history
- Section 7 — releases, authorizations (clerical stuff; copies of current medical releases, etc.)
- Section 8 — prescription instructions/other info (prescription data, additional referral information, or general instructions like dietary guidelines, lifestyle recommendations, etc., and a final clear pocket with a flap to seal it, with any historical test or x-ray information relevant to current problems)
With this notebook in hand, you can accomplish more than you’d imagine. If you’ve forgotten where the office is, you have the address and directions with you. If you’re tied up in traffic, you’ve got your doctor’s card with you, and can call ahead.
When filling out medical history forms, you no longer have to ‘get back to’ the office with dates and specifics. You’ll no longer have unasked questions when you’re pushed out the door after your allotted few minutes with the doctor.
Take it to the emergency room and you’ll have all the medical history you need at your fingertips — no matter how panicky things get.
You’ll have notes, instead of a faulty memory, to refer to once you’re home. You, and your doctor, will always be working from more, and more accurate, information.
And boy, will you have less stress! Make a Medical Record Book, Part 2 and Part 3 will detail the contents of the notebook and how I use it.
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This post is about excrement. Yes, I’m afraid you read that right. Those readers who are surfing while dining, who are suddenly feeling faint of heart, or who are simply disinterested are hereby excused, and invited to scroll down to less scatological posts. The rest of us will explore the uses of the Bristol Stool Form Scale.
Think about it for a moment. Your darling child is suffering from a digestive irregularity, or perhaps you are. You know what was most recently eaten, you can take a temperature, you know exactly how often there has been an episode of said irregularity. And then the doctor asks the question no one is ever really prepared to answer. “Can you describe the stool, please?”
Well, no, of course you can’t. Where to begin? What comparisons does one draw? The mind boggles.
Fortunately, the British National Health Service has come to your rescue with this handy chart. With seven “types” to choose from, the Bristol Stool Form Scale ensures that you need never be speechless again. Or, if you prefer, you can be speechless — simply print off the chart, carry it to your doctor as needed, and point. No description required.
Strictly optional in the USA; sometimes mandatory in the UK. If you’re in the USA, print a copy for your doctor to keep. It’s sure to be appreciated.
Via Dr. Crippen’s NHS Blog Doctor
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I’m old enough to remember the good old days when doctors knew everything, and were mightily insulted if anyone suggested otherwise. I’m smart enough now to recognize that medicine has changed plenty since then, and that it’s patients who had better know as much as possible about their own medical needs. No way a modern doctor will, or can, bring the same focus to your situation that you can and must.
Along these lines, MSNBC has a recent article about a study published last fall in the professional journal Fertility and Sterility which found that fertility doctors often use expensive and invasive methods to collect sperm from men with spinal cord injuries instead of offering assisted non-surgical methods. The Fertility and Sterility authors, however, estimate that non-surgical collection methods could be effective for a whopping 95% of men seeking fertility assistance.
According to MSNBC, Nancy Brackett, one of the study authors
. . . wants doctors to try simple solutions before assuming they must use surgical means to retrieve sperm from the testes of injured men. In Brackett’s survey, some doctors said they lacked training or equipment, or were unfamiliar with the methods.
Yes, indeed; just what the Fertility and Sterility abstract says: “lack of familiarity, training, or equipment”. You can almost see how the first two could lead to the third.
The MSNBC article emphasizes the importance of men with SCI and their partners understanding that conceiving children may be possible for them:
Rehabilitation Institute [of Chicago] nurse practitioner Diane Rowles, who teaches a class called Sexuality and Fertility to patients, said sex is “a very private topic, a very personal topic.” But if medical staff members don’t educate spine injury patients about sex and fertility, they may assume the worst: that they’re not able to have a sex life or father children.
Don’t be counting on your docs, guys. Read up and take ‘em on. You’ve got nothing to lose and maybe a rugrat or two to gain.
Stethoscope image from flikr.
Related:
Thinking of caring for a baby while using a wheelchair? Consider this.
]]>I called the supplier. I asked for the salesman, who had begged me (after a previous nasty problem) to always contact him before anyone else at the company. I was told to leave a message.
So I described the problem — a Medicare claim submitted incorrectly — and the woman on the other end of the line said only “Where are you calling from?”
I said (thinking geography) “Does it matter?”
She said “A facility, or are you just a private patient?”
Yes, I was sarcastic. Yes, I let her have it with both barrels (though only for two sentences).
No, she did not apologize. Yes, her tone of voice indicated that I was an oversensitive idiot, who had ruined her day.
And all she did was tell the truth. I am JUST a private patient. Way, way, way down the food chain.
I don’t even want to think where my dad is.
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