The day started really early when out of the blue, I had this pain down my left arm. I remember reading or hearing something about pain in your arm
could be a heart attack I decided I better get myself checked out in the emergency room. The Medical staff in the E.R. snapped to attention. I explained my symptoms. Immediately, they ordered the standard cardiac tests. All of my tests came back
normal. The doctor said to me quite clearly, “you are in the right demographic for acid
reflux.” My first reaction was embarrassment, that I had just wasted five hours of their very valuable time. Even I knew that pain down your left arm is not a sign of indigestion, and I’d asked the doctor about that. The nurse in the E.R. warned me quite sternly that I should
stop asking questions the doctor. She said he was a very good doctor and he does not like to be questioned. And so I was sent home from the E.R. in the middle of a heart attack. Over the next two weeks my symptoms continued. And I didn’t want to go back to the emergency room and be embarrassed again. I thought that the kind of care that I might get, would be affected if they saw me as a difficult patient.
But I knew something was terribly wrong. The second time that I arrived at the E.R.,
I had an emergency procedure to unblock a 95% blockage of my heart. Since my
heart attack, I have ongoing cardiac issues. I had to stop working. Had I been diagnosed correctly the first visit, my outcomes would have been far better than they turned out to be. My son, Cal, entered the world about two and a half weeks early. To hold your first child, your first born, is really very um, it’s very powerful. But the first day they noticed that he was turning yellow. We were told that he was jaundiced and
not worry about it. We were discharged with a well baby. Three hour naps went to four hour naps, and then they went to five hour naps. He was still yellow. He was getting kind of floppy. My husband and I took Cal to the pediatrician and whenever I brought up a concern, a worry, or a symptom, I was always told that I was over-reacting. He didn’t get better. So when we took him to the hospital president actually admitted
Cal and he documented that Cal’s blood type was the same as mine. Actually Cal’s blood type was “A” and I was “O” so that document error had a significant impact on how they were treating Cal. Cal’s bilirubin was the highest level ever seen in the hospital.
This toxin was building up in Cal’s bloodstream. His legs were trembling He would stop breathing when he was sleeping. He couldn’t breastfeed at all. We were really told not to worry. Babies do funny things. I was reporting very classic symptom of the onset of brain
damage with jaundice. Nobody took me seriously. 16 months later, he was finally diagnosed by a clinical team in another state. The MRI clearly indicated that he had suffered brain damage from his newborn jaundice. Cal is now 20. He has significant cerebral palsy. He can walk independently with a walker. His speech is very impaired. He’s a smart brain trapped in a body that…that doesn’t work. The first time I felt anything different was in the car ride on the way home from work that day. I felt like I got hit in the chest with a sledgehammer. When I walked into the E.R., I presented myself as having a heart attack and they immediately took me back in.The emergency room doctor had come in and did the initial diagnosis of a heart attack. My pulse rate, my oxygen level was fine. My wife arrived at the hospital fifteen, twenty minutes after I arrived. She was the first one other than myself to notice that my leg was swelling, and that my foot had started to go prone. That caused them to further investigate what was happening. In a matter of minutes I was being operated on. They had diagnosed me with a triple aortic dissection. That’s when the inner layer of the aorta disconnects from the outer layer and restricts blood flow. With this condition very few people walk away. Very very few. The critical thing that the medical staff did was listen. Even though the initial diagnosis was a heart attack, we didn’t take that as the final word. My recovery has been a fascinating journey. Some days are better than others, but it’s great to be alive. I’m very thankful that the diagnostic
team and the surgical team were working hand-in-hand with each other through the
whole process. I’m looking forward to retirement and enjoying my family and my grand-kids , which I wouldn’t have that opportunity
if we hadn’t spoke out. One of the things that I’ve learned through this experience is that no diagnosis is complete until it’s complete. You know your body you know when something’s not right. That teamwork though, it’s something that we all need to strive for because I believe you will have better outcomes, you will have better communication, just overall better care. The communication is the key.