Three years ago today, at 5:37pm, my heart was shattered into a million pieces when I lost my hero…my Auntie Sandy. My Auntie Sandy died from complications from Scleroderma…after doctors refused to listen to her pleas for help…and failed to act once they finally listened. Many of you have remarked on how strongly I advocate for my voice to be heard by my medical team. Some of you have emailed me and asked me where I learned to advocate for myself as a patient. Others have e-mailed and asked the reason why I advocate so hard. I have never responded to these questions, because frankly it is still too painful. But, to help others I will. My “reason”, or my reason “why” is actually a person, Auntie Sandy.
Sandy is the reason I will never let a doctor ignore my pain, symptoms, questions, or concerns. Three years ago my Auntie Sandy was admitted into the hospital after months of refusing to eat. She had lost considerable weight and struggled to breathe. My entire life Auntie Sandy was very ill with MS, diabetes, heart disease, and Scleroderma…but this time was different. After a thorough check up, to my surprise, the doctors determined that she was well enough to be transported to a rehabilitation facility, and simply needed to lose weight to improve her breathing. According to the doctors, all was well with Auntie Sandy and she could be discharged from the hospital. I can still hear the snotty nurse say “she is morbidly obese, and that is the reason she cannot breathe”. Minutes earlier, I had asked the nurse to examine Auntie Sandy again because she was struggling to breathe, despite wearing an oxygen mask. As the nurse rolled her eyes and walked away, my Auntie quietly whispered to me “please tell them that when they are yelling for me to get up and move, I can’t because I can’t breathe”. Typing this is almost too much right now, but I am pushing through hoping this can help someone.
Why would Auntie Sandy have to ask me to ensure her medical team understood that she really couldn’t do what as being asked? Why wouldn’t her words alone be sufficient? Sadly, neither her words or mine were sufficient. After the negative exchange from the nurse, I requested the hospitalist to examine Auntie Sandy. A tall white male physician abruptly appeared. Seemingly annoyed, he turned to me and said “I heard you requested me, how can I help you”? I responded, “my aunt is on oxygen yet struggling to breathe. This cannot be normal so I want someone to seriously check her out. We were told she would be discharged to a rehab facility later today, and I don’t understand how that is possible when she is LITERALLY struggling to breathe while wearing oxygen.” The doctor glared at me for a few seconds, then walked over to my aunt and began to exam her. After what seemed like only 2 minutes, he turned to me and said “her pulse ox shows she is getting 100% oxygen”. To which I quickly responded, “shouldn’t it because she is STILL on a oxygen tank”? He then rolled his eyes and said “well, listen, we have already told her she needs to lose weight. But, to make you both feel better, we can put her in the ICU for observation. I have to warn you though, she will likely get an infection and with her medical history will not likely survive.” To which I responded, “so, the only options are discharge to a rehab facility in her current state, or transport to the ICU and risk infection which she will not survive if she does get one”? I continued, “surely there are other options. Can’t you do a test to check her oxygen in her body…something like a blood gasket or something like that”? The doctor turned and snapped “a blood gas”. I will spare you the rest of the details, but will say that after LOTS of pushing the hospital finally performed the test. Within an hour we had the results, which were given by the hospital administration. My aunt’s Scleroderma had progressed to her lungs and she was suffering from pulmonary hypertension. Her lungs were not pushing out carbon dioxide and she was literally suffocating. She died two days later, and all we received was a “sorry, we will do training to ensure our staff listens to the concerns of families”.
I give this deeply personal piece of my life to really show the importance of patients advocating to be heard. If you as the patient cannot advocate on your own behalf, ensure you have people around you that can do it on your behalf. While I lost my aunt, I take solace in knowing that those she trusted around her did all we could to ensure she received proper medical care and that her concerns were heard. I was prepared to physically make the doctor perform the necessary tests before I let them discharge her. No, my actions did not save her life…and I believe that was God’s plan. But, pushing did get her comfortable to leave this earth in peace. Also, pushing gave my family time to say goodbye and have her leave this earth with dignity and family by her side, rather than alone in a facility. While I would give anything to go back in time and keep her on this earth, I know I cannot. But, true to the woman she was, even in death she helps others. She will be a reminder to ALWAYS ensure that my concerns, symptoms, and questions are both heard and addressed. It is my hope that this becomes true for every person reading this. Ensuring that your voice is heard, or that the voice of your loved one is heard, with respect to medical care, REALLY is a life or death matter.
Rest with the angels beautiful lady!