Wednesday, May 11, 2011

A Sock, A Clown’s Story and Other Tales of Health and Care

Eunita Harper Winkey shares her father's medical error story at Regina Holiday's The Walking Gallery event in June! Click on the links below:

“They never took his sock off”: a parable of patient empowerment, resourcefulness, and literacy"

http://e-patients.net/archives/2010/12/they-never-took-his-sock-off-a-parable-of-patient-empowerment-resourcefulness-and-literacy.html


http://blog.centerforinnovation.mayo.edu/2010/09/14/a-sock-a-clown%E2%80%99s-story-and-other-tales-of-health-and-care/

MEDICAL RECORD AWARENESS JOINS REGINA HOLLIDAY WALKING GALLERY !

Do you believe the information that your doctor discusses with you is true? Do you believe your medical records are accurate? Do you believe that all doctors have your best interest at heart? If you answered “yes” to any of the above questions, you need to read this story. I am a victim of medical record error and am determined to do whatever I can to bring national attention to the horrible medical practices that are going unnoticed. This is probably a mere snapshot of what is happening in medical facilities all across the nation. It is a problem within America's health care system as a whole and a problem that should concern us all.

At some point in our lives, each one of us will visit a physician and put our lives in the physician’s hands. However, the stakes are high in the medical profession because misdiagnosed illnesses or incorrect medical information could cause grave consequences. Health care professionals should be held at the highest possible standards since medical errors can seriously affect the decisions that are made regarding our health, possibly resulting in irreversible health results or even death. Errors made by health care professionals are often swept under the rug, even when serious damages are the result. As an educator, it is my responsibility to educate and be an advocate for our communities by sharing my medical record story. If I had been educated on the importance of requesting my medical records during my treatments, I would not have experienced such a tragic outcome of a total hysterectomy and suffered the emotional and physical stress I have had to endure since my hysterectomy.

This is my story.

In 1998 at the age of 39, I was beginning a new life with a second marriage. My husband and I did not have children and anxiously anticipated starting a family. However, that anticipation was shattered in the wink of an eye by a life-altering experience with an in vitro fertilization (IVF) physician and obstetrics-gynecologist (Ob/Gyn). The treating IVF physician visited me during my consultation at the Ob/Gyn’s office. I felt very special when the physician traveled to see me for an appointment, and I was also relieved by the referral to the IVF medical center. However, I later learned that it was unethical for the Ob/Gyn to refer me to his IVF physician-friend. Always be cautious when accepting a referral from another physician. Conduct your own research by using the Internet or get referrals from family members or friends.

Out of 15 doctor visits, my name was misspelled 10 times, e.g., my first and last name were completely misspelled—not just a simple typo. Treatments and other information were also incorrectly recorded in the Ob/Gyn’s notes, e.g., treatments that I requested were never noted. In addition, the hospital that performed my surgery had another person’s name listed on my record, instead of mine. My medical records also revealed that the Ob/Gyn had held a conference with me prior to my hysterectomy concerning the complications and side effects of the surgery, but that was untrue since there had been no such discussion with him or anyone else. A review of the Ob/Gyn’s records left me speechless, and it did not dawn on me until later that the IVF physician’s notes were also false.

On my husband's semen profile, the andrologist documented that his semen analysis was completed at 10:00 a.m. on May 10, 1998. However, our first appointment was not until May 11, 1998, which is the date my husband's semen sample was taken. The IVF physician tried to convince my husband to become a sperm donor due to his good semen count. However, my husband declined, and the IVF physician appeared to be a little disappointed. My husband and I are still wondering what happened to his semen sample since that information was not documented in the medical record.

In 1997 at age 38, I started trying to conceive a child by taking Clomid fertility drugs. However, in 1999, the IVF physician signed a report stating that I was 49 years old, which was 10 years older than my correct age of 39. No date of birth was listed on the report to bring attention to the error. In addition, the IVF physician stated that I had previously taken two cycles of Clomid treatments in 1987. This was a false statement since I did not begin taking Clomid treatments until 1997. My chances of becoming a mother at 39 would have obviously been greater than at age 49. Unfortunately, I did not learn of this error until 3 years later.

When the IVF physician reported that the first fertility treatment had failed, I requested a second fertility treatment but was immediately turned down due to my age, which was incorrectly recorded. The failed fertility treatment was not noted in my medical records. However, the Ob/Gyn records indicated that the IVF physician had recommended a total hysterectomy, but the recommendation was made 3 months before I began the IVF treatments.

As a result of the 10-year error in my age and other false statements noted in my medical records, I was given a total hysterectomy (removal of my uterus, cervix, both ovaries, and fallopian tubes) that left me scarred for life. I immediately became very depressed and was prescribed Paxil for my depression. Following the surgery, my body was immediately thrown into full-blown menopause without any prior discussion regarding these devastating side effects. For the first 2 years, I only slept about 2 hours each night due to the severe hot flashes and night sweats that kept me awake. For the past 6 years, some areas of my body are numb and there is no feeling, even when I pinch myself. In addition, the nerves in my body are damaged due to the absence of my female organs and, at times, my life seems very foggy. Some of the other side effects experienced by myself and other women who have had this surgery are loss of sexual desire and arousal sensation, joint and muscle pain, painful intercourse, displacement of bladder (which may cause incontinence or other bladder problems), bowel problems, nerve damage, high blood pressure, varied body odor, loss of short-term memory, personality changes, and irritability. Hysterectomy side effects are life long, and no treatment or drugs can replace ovarian or uterine hormones. My life and marriage have been under great stress since my hysterectomy.

According to the Centers for Disease Control and Prevention (CDC], “Hysterectomy is the second most common surgical procedure among women of reproductive age and will affect more than a quarter of all U.S. women by the time they reach the age of 60.” The CDC also reported that approximately 600,000 women undergo a hysterectomy in the United States each year at an estimated annual cost of over $5 billion. Fifty-five percent of the hysterectomies performed are on women between the ages of 35 and 49. Women between the ages of 40 and 45 are at the highest risk of undergoing hysterectomy, while women ages 15 to 24 have the lowest risk. The American College of Obstetrics and Gynecology is currently entrenched in a controversy stemming from the recent rise in the number of women under age 35 who are undergoing hysterectomies. Many of these women are reporting a variety of problems including early menopause, decreased sexual function, and other medical and psychological problems.

There are other alternatives to hysterectomy, depending on the nature of the problem and the age of the patient. Even though many physicians elect surgery, this should only be used a last resort. The three most common conditions associated with hysterectomy are fibroid tumors, endometriosis, and uterine prolapse. Cervical displasia and menstrual disturbances are the most common reasons for hysterectomy in women under age 30. Women ages 30 to 34 most often undergo hysterectomy due to endometriosis, while the most common reason for hysterectomy among women ages 35 to 54 is fibroid tumors. In women ages 55 and older, uterine prolapse and cancer are the most common reasons for hysterectomy. If a woman suffers from fibroids or myomas, the physician should consider the size of the lesion and determine whether or not it is causing problems for the patient. Many times, doctors opt to “watch” the fibroid for changes and evaluate the patient annually instead of performing surgery. If the fibroid is one of the 5% that cause intrauterine bleeding and severe menstrual pain, there are also ways to treat it aggressively without resorting to hysterectomy. These include D&C or endometrial oblation, where the lining of the uterus is literally scraped, or uterine artery embolization, where the blood flow into the fibroid is severed in order to stop its growth. Another option to consider in the case of fibroids is the use of the drug Luperon, which stunts the growth of the lesion. Fibroids are highly sensitive to estrogen and progesterone, and they are literally “fed” by these hormones. During the onset of menopause, however, the hormone levels drop sharply and, in most cases, the fibroids will stop growing.

Following a review of my medical records by a hysterectomy expert, it was determined that I did not have a severe case of endometriosis or large fibroids as was documented in my medical records, thus, my hysterectomy surgery was totally unnecessary. Although the cost of the IVF treatment was $16,000 for one 6-week cycle, my medical insurance provided me with a 6-month referral, which would have covered two more cycle treatments. However, due to the serious medical record errors, the IVF physician refused to give me the opportunity to try and procreate.

I filed a complaint with the Medical Board and received the following statement: “After carefully evaluating all available information, we concluded there was no violation of the Medical Practice insurance that would lead to a restriction of the physician’s license to practice medicine.” As an advocate of medical record awareness, I must stress the importance of being proactive in procuring copies of your medical records just as you request your credit records. Request copies of your medical records from all health care providers every 6 months or annually because you have a legal right to all of your medical information. Once you receive your medical records, be sure to examine them for accuracy and question any medical inaccuracy.