Follow your heart....

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!

I have a Brain Aneurysm

It was a beautiful evening in late January.  I was at a restaurant on the harbor, having dinner with the executive team, sales & marketing teams, of my company.   We were laughing and reflecting on the days events at our Quarterly Business Review.   Everyone was unwinding with a cocktail and enjoying the night.  

I took a phone call that almost paralyzed me.   My Dr. had shared that I have an aneurysm in my brain.  I didn't have much background information on aneurysms at that time, but I knew from the sound of his voice it was something serious.  I sat back down at the table with everyone and wasn't sure if I should lean over and tell my boss, if I should somehow find an excuse to leave the dinner, or just sit there with my frantic thoughts.   I had already ordered my food, so I decided to stay.  My food arrived, but there was no appetite or interest in eating.  Instead I ordered another glass of wine.  Once dinner was over and I was in my car, I began shaking all over, uncontrollably.  Fortunately, I was staying with friends that nite and was able to surround myself with love and support.

A brain (cerebral) aneurysm is a bulging, weak area in the wall of an artery.   The artery walls weaken causing ballooning of the blood vessel wall that can form an aneurysm. Aneurysms grow due to constant pressure from blood flow. They often enlarge slowly and become weaker as they grow.  Think of a  water balloon, the more you fill it up with water the tighter the balloon becomes and it can burst in your hands, when too much water has filled the balloon.    This is the same case with an aneurysm, as blood fills the balloon, it becomes weaker and eventually can rupture, causing death or if you survive a rupture, you can be severely disabled.  50% of ruptures end in death.

Aneurysms are either hereditary or caused by years of high blood pressure, smoking and heavy drinking.  There are no known aneurysms in my family, I'm not a smoker or heavy drinker.   I have had high blood pressure on and off over the years, but it's been controlled through diet.   It wasn't until recently that my blood pressure has been high...probably because of the stress I have, knowing I have a ticking time bomb in my brain.

I do feel extremely fortunate that we discovered my aneurysm prior to a rupture.  Statistically about 1.5 to 5 percent of the general population has or will develop a cerebral aneurysm. About 3 to 5 million people in the United States have cerebral aneurysms and don't know it.   Most aneurysms go unnoticed or don't produce symptoms, until it ruptures.   When an aneurysm ruptures, it is described as the worst headache of your life.

I was lifting with my coach and naturally we were pushing my limits.  I was straining to push the weight off my body, when all of the sudden I had this sensation of a lightening bolt coming down the center of my brain.  It was so painful I had to squat down and gather myself.   This happened several more times over the course of 3 weeks.  It was then that I reached out to my Neurologist and they ordered an MRI the next day.   They suspected it could be a tumor.  When you have been diagnosed with Cancer, you always have to consider a recurrence. The MRI came back showing no signs of a tumor.   The Dr then ordered and MRA.  An MRA shows images of your blood vessels.   It was that test, that revealed I had an aneurysm.

There are three options to consider when treating an aneurysm.  
- watch it; take images every 6 months
- coil the aneurysm
- craniotomy (brain surgery)

The options presented by your Dr, will depend on the severity of your aneurysm, your age, the likely hood of the aneurysm growing etc.

Given all the facts I gathered from 3 different neurosurgeons, I chose craniotomy.   I found one of the top surgeons in the US, who specializes in surgical aneurysms and AVMS.  He's performed over 7,000 surgeries of this kind.  Patients from around the world, come to him.   He's a chief surgeon at UCSF.   When you are looking at having any kind of brain surgery, you want to make sure you are in the hands of a very skilled and experienced surgeon, to lower the risks of something going wrong.

I feel very comfortable with him and have had nothing but positive experiences with the medical team at UCSF. My surgery is scheduled for June 19th!