Sunflower Health Plan reposted this
Vice President of Population Health | Doctor of Nursing Practice
I hesitated to post this here, but since so many of my contacts are healthcare professionals I felt it was an important story to tell. A few weeks ago, I delivered a sweet baby boy at 32 weeks gestation. My maternity leave wasn’t supposed to start for another 8 weeks and there was still so much to do. This wasn’t a typical early delivery, though. In the weeks prior to my delivery, I developed acute cardiomyopathy, which essentially prohibited my heart from being able to efficiently pump blood throughout my body. I had a 20lb+ weight gain within 5 days due to the fluid retention and my cardiac ejection fraction dropped to <45%. My ECG exposed several long pauses and many ectopic beats. I say all of this because I went to the ER 3 times the week before I delivered and was told each time that my blood pressure and labs looked good and this was all normal pregnancy related. Everyone was most concerned about preeclampsia, which I never developed. After the second ER visit I began tracking my weight, intake, output, BP etc… in spreadsheet form because I was intuitively confident that what I was experiencing was cardiac related and potentially very damaging. This was the very best thing I could have done. As a cardiac nurse, I recognized the signs and symptoms of heart failure and basically demanded certain tests the last time I went to the hospital (the spreadsheet also helped!) This resulted in an urgent cardiac consult, ECG, CT, and echo, all of which confirmed that I was in a very emergent and dangerous situation. From there, baby Reece was delivered via cesarean and I was able to begin the treatment necessary. I’m now following with a cardiologist, the heart failure clinic, and am wearing a heart monitor. My OB team was excellent and this is not to place blame on anyone for not recognizing what was happening with me. Rather to hopefully empower everyone to know their bodies, ask questions, and not be afraid to be a total pain to your healthcare team. I’m so grateful to all of the nurses, physicians, and experts who have cared for me and this sweet little nugget over the past 3 weeks. He’s in the good hands of the NICU team for another week or so. Most patients don’t have the background or knowledge to identify what’s happening to them, but I believe that as healthcare professionals we owe patients the benefit of exploring the rare presentations or random complaints as potential problems, despite the cost or inconvenience it may create. I’m very thankful that my care team entertained my complaints, though a little later than preferred, and we have the ending we do. Pictured, my sweet boy and trusty heart monitor. ❤️
YOU you are empowered and saved your own life and son’s life. THIS is why I left bedside nursing. Many women die bc they are dismissed or their youth and fibrance fools a provider. There are so many amazing providers and nurses walking away from healthcare. I’m staying in a new capacity, and will do my VERY best every time. My work is not about a paycheck. It’s about using compassion and knowledge to make sure people are getting the care they deserve. We could talk for hours on the how’s and why. My sister-in-laws sister died because she was dismissed. Three times she called 911. On the third time, she succumbed to heart failure. She was 47 years young and living just outside of LA. I’m cautious to type here but there is so much wrong with healthcare today. Every mother, every human needs to be truly seen. We are not adequately “seeing” patients. There’s reward to “evaluate and treat” as many people as possible. It’s not sustainable.
My sister had a very similar experience in her delivery in May. She also is a clinician and was able to advocate for herself, and finally got attention to what was going on. Ultimately I think it points to overworked and fatigued clinicians who become somewhat disconnected from their intuition and listening to the patient, with over reliance on algorithms and certain indicators. Those things are important (algorithms and defined thresholds) but sometimes the patient presents atypically or has other issues. For example, her weight didn’t flag as alarming gain but she thinks she had hyperemesis gravidum and was losing lean tissue so it masked it. She needed someone to slow down, hear her saying “I feel really terrible and something’s not right” and look at the big picture rather than individual things like weight and BP. I think the best of us are susceptible to this in todays healthcare environment- doctors are people and compassion fatigue is real, too.Thankfully she’s ok (but still on the mend) and so is my nephew. Healthcare systems need to consider the impacts of decisions to layoff and overwork their people; & more should be done proactively to help combat clinician burnout.
Thanks for sharing your important story here. So glad you are already a strong advocate for yourself — you know body best. I relate to your story, mine was 21 years ago and a little different, but imparts a similar lesson. If something doesn’t feel right, keep pushing your doctors and be a strong advocate for yourself. Doctors are smart but also human. You know your body — and you know your child — better than anyone does. I am so glad you are both doing ok, Alissa.
More power to you for sharing this story! Community education is so important. As a bedside nurse, i always feel the need to educate people more than what time allows us. With the rise of complex health care there's a lot more need of health education for all communities. Your message gona go a long way, and def an inspiring action with a reminder to be jow important it is to sometimes believe the patient and investigate more then what the basic test are showing us. Take care!
So thrilled for your blessing in your arms. I too have a similar story except my providers begun to understand I was suffering from PPCM. However, the cardiologist, the obstetrician, nor the perinatologist would make a decision of best course of action, when to allow my delivery (I also had preterm labor 3 times before I delivered at 36 weeks). They all threw their hands up in the air, claiming they were not the decision maker, all citing “the other life involved in the equation.” Finally at 36 weeks and the 4th time in labor, not being able to walk 50 feet without having chest pain, shortness of breath, tachyarrythmias all over the place and absolute exhaustion, that I made the decision not to abate the labor and have my son. There is more to the story that I could explain for days but frankly is still so scary to think about I don’t want to bubble it all up again. He is 20 years old now and a Division I college athlete who is contributing to this world. He is kind, generous, polite, strong, and smart. To think this world could have missed out on him because providers were afraid of liability still makes me tear up. I still have some residual complications but I happily manage them knowing he is thriving.
What a beautiful baby. Thank you for sharing your story. I am sorry you and your baby went thru this but sharing with Healthcare workers is an excellent reminder that not everyone has advocates. I lost my first baby after he was born 15 weeks early (he lived 9 wonderful days). My next birth, I knew my BP was high for me and had gained so much water weight. I kept mentioning it, but even when I wen into labor 4.5 weeks early no one listened. They stopped the labor. I went into labor 3 weeks early and delivered. He was 8.10lbs 3 weeks early with very low blood sugar and went into NICU. He was fine and I lost 20lbs instantly from all that water. I think they should have listened to me more. Your story serves as a good reminder.
In the past two decades, I have noticed a significant drop in the quality of care provided at ERs nationwide. It has resulted in the near deaths of several of my family members. The last time, the only reason my relative's life was saved is because of some very quick Google work and basic knowledge of Ischemic venous thrombosis. There are some great ER physicians who care, but that is becoming more of an exception rather than the standard. We had to argue with the physician to get him to admit he needed to seek a specialist's opinion. The general surgeon immediately sent us to a regional medical center capable of providing life-saving care. I am so glad you came out of the situation okay, but good grief some of that could have been prevented. Michael N. Liebman
I am so thankful you were able to advocate for yourself. I agree with you, if attention is paid to listening to the patient and not being dismissive of their concerns and investigating signs and reported symptoms further, may prevent escalation of situations such as yours. I have done this for my loved ones and have been happy to do so. How many other patients have an RN in their families they can turn to for support? Not all reported signs and symptoms are "normal". They are indications that for this patient, they need to be investigated further, especially during pregnancy when two lives are at stake. May your health continue to improve and your son thrive and grow up healthy and strong.
Alissa Stinnett, DNP, CENP, MPH, BSN, RN thank you for sharing your story, and I’m so glad you did. I would welcome the opportunity to connect with you and learn more about your journey. There are many out there to support you and your family. ❤️
Seasoned Executive Nursing Leader & Change Catalyst | Service line & Hospital Operations Leadership, strategic planning, Financial Optimization & Growth
2moI am very happy to hear you and tour beautiful bundle of joy are doing well. I am however very distraught you think we need a patient to pick up on signs and symptoms that are in the healthcare fomain to pick up???