The weather was beautiful. Blue skies, a small breeze blowing through my hair, turquoise water in the distance and light colored sand. The perfect day for a run on the beach. It was January in Miami. A time when the weather across other parts of the states is a bit chilly, but not in Miami.
I had set out to go for a run. My boyfriend and I laced up our shoes and were ready to make our prints in the packed sand on South Miami Beach. We started to jog and it felt like I had no stamina to even put one foot in front of the other. I workout all the time, I couldn't understand why this one particular workout felt like I had cinder blocks on my shoes. We've all had those workouts, that don't feel like our best, but we motor through.
Motoring through wasn't exactly coming easy. I had to drop my pace to a slow jog, and break it down into a walk and a jog, just to get through it. It was probably the hardest workout I've ever experienced.
By that evening, every ounce of energy had left my body. I felt like a wet sticky noodle, completely limp.
Back home and having no stamina, shortness of breath, light headed feelings, ringing in my ear, near fainting spells, erratic heart beats, memory issues, etc. I started to bring these symptoms to the attention of the 3 neurosurgeons I saw. All 3 said the symptoms were not related to my aneurysm. Only one of them thought it might be a heart issue and suggested I see a cardiologist.
At that time, I was with Kaiser. I made an appointment with my general practitioner. As I started to share my symptoms, she immediately fired off a diagnosis, without collecting any more information about what was going on with me. She said, it sounds like allergies and suggested I take Allegra. I took that for a very short period of time. My symptoms persisted and the Allegra only made it worse. My heart rate which had already been elevated, was now racing out of control. I knew at that point, this was not an allergy, but something else.
I was rushed to the ER on 3 occasions and each of those Dr's had diagnosed me differently. One said it might be anxiety attacks, the other said he thought my esophagus was damaged and prescribed pepcid, the other Dr wasn't really sure what was wrong.
I switched General Practitioners thinking that I would get another perspective. He heard me out and suggested I get a cardio stress test, a pulmonary function test followed by an echo cardiogram. In the meantime, they had me wear a heart monitor for 24 hours.
The results of the pulmonary function test come back and they said I had asthma like symptoms and prescribed an inhaler. Over time, I didn't notice any change so I stopped using the inhaler. I kept thinking to myself. They have no clue what I've got. I keep pushing for answers and they keeping wanting to throw meds at it.
I met with my Oncologist and she said, "has anyone shared the results of your echo cardiogram or heart monitor with you?". I said no, she replied "it's very concerning". I asked her what the report said and she told me there wasn't a report. She said she would have my General Practitioner call with the results. I decide that moment to march over to the records department and request ALL my records. I was beyond irritated at this point, my heart rate must have been soaring because I felt lightheaded.
That same day, the records department called me to inform me I can come pick up my disks. Wouldn't you know they forgot to include the echo and heart monitor results. Yup, I had to go back and request those again!
Once I have the disks, I place one in my disk drive and wait to be prompted for my password. I enter my password and up comes notes after notes after notes. I begin to click through them, familiarizing myself with the layout and how to get to the information I was looking for. Viola, I come across the echo results. I can't believe what I'm reading. The echo suggested I had cardiac arrhythmia and a defect in my septum between the two upper chambers in my heart. This defect is an incomplete closure of the septum and if troublesome can cause strokes and massive heart attacks.
Holy Shit...I am finding this out for the first time only because I requested my medical records. My Dr never called with the results. I continue on to the heart monitor results which say I have rare premature atrial contractions. I have no idea if that is serious or not, but naturally I'm thinking I should have been told about this. I saw one more doctor at Kaiser because I was so determined to find someone who would listen to me and be concerned about my symptoms. The last Dr I saw said, you are healthy as a horse and that I needed to work out more!
Thankfully, my new insurance has kicked in and I'm sitting in my practitioners office, who I have saw for 9 years, prior to Kaiser. I was so anxious waiting to see Dr Joe. I knew he would help me and was dying to tell him what I had discovered. After sharing the results of my tests with him he says "this is an urgent matter we need to get looked at right away, Your surgery could be delayed, depending on what is going on with you."
I was referred to a skilled and experienced Cardiologist at UCSF who also writes and researches everything about the heart. This is her world. She spent about 2 hours with me, collecting information as far back as January. Never providing a diagnosis, but rather is fact finding to understand more about the symptoms, what triggers them etc.
She confirmed that I do in fact have a heart defect and that I have an arrhythmia. She wanted more data before providing any kind of diagnosis. She ordered a echo cardiogram stress test on a supine bike. While we were waiting to kick off that test in the hospital they discovered I have high blood pressure and did not want to proceed with the test.
High blood pressure can cause an aneurysm to rupture. The risk was high enough that we discussed options. They gave me high blood pressure medication and waited until the medicine took effect...about 1 and a half hours. My blood pressure was lower and considered safe for this test. We kicked off the test and my blood pressure soared through the rough within minutes of exercising. They halted the test and said this appears to be a blood pressure issue. They prescribed blood pressure medication and have restricted my diet and exercising, in order to keep the BP down.
Imagine if I didn't listen to what my heart was telling me, and I took the advise of the Kaiser Dr who suggested I work out more. I would have risked rupturing my aneurysm and putting myself in a grave.
I'm still being watched by UCSF. I've had to wear a really groovy wireless heart monitor, to help determine what kind of arrhythmia I have. The unit will come off this Friday and we hope to have the results prior to my surgery on June 19th.
If this story sounds all too familiar, don't give up. Listen to your heart and if it's telling you to keep seeking information, than do that! My heart has never misled me. I cried a ton during this process. I was frustrated, I thought I was losing my mind and that maybe I wasn't having symptoms, I became depressed....BUT I NEVER gave up. I kept searching for the answer and I know I will get that from UCSF.
Don't give up on your heart!
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