When The Tables Turned: How My Experience as a Patient Brought Me Back to Healthcare

©www.ParadiseEvents.comFrom the time I was a young child through adulthood, an active lifestyle has always been important to me.  I love the outdoors, whether it’s hiking in a Redwood forest, joining friends for a cycling adventure, trekking through the Colorado mountains on snow shoes, exploring a river in a kayak or playing competitive sports.   The combination of fresh air, nature and exercise is my life force—the passion that helps me stay balanced and happy.  Like many people who like to keep moving, a health issue that threatens to interrupt my life and my body is not only scary, it could be life altering.

The symptoms were subtle at first, but eventually would not be ignored; abdominal bloating, increased menstrual bleeding and a feeling that my bladder was constantly full. It soon became socially uncomfortable when I needed to wear extra thick padding to play women’s league tennis matches and I was always the one stopping play to run to the ladies room in between sets.  At that point, I finally gave in and made an appointment to see my primary care physician, who ultimately sent me to a gynecologist.  After two physical exams, blood work and an MRI, the diagnosis was clear.  I had several uterine fibroids, one that was about the size of a grapefruit.  This “grapefruit” was the culprit and the cause of my discomfort.

Having worked in the medical industry, I knew that uterine fibroids are not cancerous and I was quite familiar with the various treatment options available to me, which included a minimally invasive, image-guided procedure (MIIP) called uterine fibroid embolization (UFE). Other more invasive options included varying degrees of surgery, ranging from the insertion of large scopes to cut out or burn the fibroids to a full hysterectomy to remove the fibroids and my uterus. The latter was an unappealing threat to my active lifestyle and would require a minimum of 4 weeks recovery time, including time away from work and exercise.  I knew instantly that a hysterectomy would be my last choice and was surprised when my gynecologist suggested it as the first option. I questioned her about other options, “What about UFE as a treatment option?” I asked.  “I am in my 40s and if the procedure successfully shrinks the fibroids to relieve my symptoms, by the time I enter menopause they will no longer be a risk to grow again.”   She maintained that hysterectomy was the only option that would permanently and unequivocally remove the fibroids and my symptoms. However, I was unwilling to accept the risk and recovery time associated with such a major surgery and I wanted to stay whole.  I decided to get a second opinion.

The next day, I contacted Dr. Robert Kerlan, an Interventional Radiologist at UCSF Medical Center, who agreed to review my films to see if he felt I was a candidate for UFE. In short, the answer was yes!  The procedure took about 1.5 hours.  I recall being awake for part of it, but mostly dozed off as I was given IV medication to make me comfortable.  After the procedure, Dr. Kerlan monitored me for pain and other complications so I stayed over night.  The next morning (less than 24 hours after entering the hospital), I was ready to go home with only a Band-Aid® on my groin.   The procedure was done on a Thursday.  I took Friday off and was back to work on Monday.  The following weekend, I was back in the lineup for league tennis– this time without the extra padding!

My patient experience was one of the compelling reasons that I returned to the healthcare industry and cofounded the Interventional Initiative, a non-profit organization to educate and engage the public about minimally invasive, image-guided procedures such as UFE.  Most women have little to no knowledge about MIIPs or Interventional Radiology and in my situation may have acquiesced to the gynecologist’s recommendation for hysterectomy as a first treatment option.

Treatment options are very personal decisions and each patient must chose what is best for their own body and quality of life. As both a patient and a healthcare professional, I believe that the critical component is having access to accurate, comprehensible information about all available options.

Author:  Susan Jackson, MBA, R.T.(R)(CV)
Co-Founder, the Interventional Initiative