One of my most treasured ladies has reminded me that we are so much more powerful when we are together than when we are alone. What my beautiful Bernadette just experienced is important to share, because although we may experience other elements in our own stories, having the resources of our village is key to overcoming many challenges.
Bernadette had been rushed to the Emergency Room of her medical center that, until then, had been a safe haven for her for many years. Unfortunately, there was much going on in neighboring hospitals which meant that her hospital was receiving emergencies from all over. That translated to less attention for her needs. She was experiencing a small bowel blockage, which for any who have experienced one, is not a “small” issue. The small intestine is the squiggly bowel that is one of the keys to our survival. It processes the nutrients from our food and prepares the waste for the colon. It is many feet long, requiring motility to perform its function, and if it perforates, it can cause sepsis. A small bowel blockage can be deadly! And they are incredibly painful, unrelentingly so, and are typically accompanied by virulently painful waves of nausea/vomiting, back pain, and distention. Frequently, hospital attention is required, as it was in Bernadette’s case.
Caught in the crossfire of this extremely busy ER, Bernadette was rushed out of the hospital as soon as the blockage was resolved, with no guidance for her return home. Additionally, because Bernadette has MS and was unable to take any meds orally while npo (nothing passes orally) her body was experiencing so many other painful and uncontrollable responses. Again, no validation of the impact that crisis had on her, or direction to get back to her homeostasis. This just made me cringe!
So, we had to do together what neither of us could do alone. Bernadette and I had to develop a plan of action. I am sure that you are now wondering why it was incumbent upon us to do this, rather than the medical personnel, because she and I are wondering the same thing. Where was the strategist to let her know when she should return to her normal diet (or what she should eat until then) or how should she take her medication to make her more comfortable? Why weren’t her team of doctors contacted before her discharge so they could have their office provide a follow-up phone call? And basic to all of this, why wasn’t Bernadette or her wonderfully devoted husband, Ray, told how serious a small bowel blockage can be, and what to do if it occurred again? They were entitled to that information at the very least! The United Ostomy Associations of America has fought hard for the Patient Bill of Rights. Bernadette did not have her rights respected or even reviewed; it appears she was ushered out of the Emergency Room into her hospital room and then out the door without even speaking with an Ostomy Nurse or her own physicians.
By the time I was involved, my antennae were up and picking up as much information as possible. Bernadette and I set a plan of action, including getting food and nutrition into her painfully thin body; making sure she was able to return to her meds since she was no longer npo; and key, I believe, bringing what happened to her team of physicians. This was not rocket science…it should have been orchestrated by the hospital before she left.
My apologies for my ranting and raving, but Bernadette deserves better, we all do! What hope is there for all of us if a beautiful young woman with MS, who lives in a power chair, has two ostomies and has a small bowel obstruction isn’t treated with care, kindness and respect?
Thank God and you, Ellyn. Poor Bernadette was not given the attentive medical care that her conditions warranted. Health advocates like you have to wirk overtime to fill in the gaps of bad medicine. I still keep Bernadette in my prayers.
I am so sorry to hear that Bernadette had such a terrible experience ?. Thank god you were there to help her. You are a special angel.
How awful ! Unfortunately, hospitals these days and most medical facilities
are not providing care and certainly not communicating with patients and their families. Places are understaffed and patients are victims of incompetence. How wonderful Bernadette had you to help. We must be there for each other now more than ever.
It seems to me that hospitals are more into getting people in and out than giving them the care they need. We have to be proactive and insist on better care. She could have died. I’m so sorry your friend experienced that, but it seems to be a common issue more and more these days.
I am so sorry to hear how Bernadette was treated. Terrible ?. She is so lucky to have you to help her through this. You are a special woman ?
A frightening story! Bernadette is fortunate to have recovered, and she (along with others) is especially fortunate to have you as a patient advocate.