Monday, May 27, 2013

Alicia's Story - From Fatigued and Fainting to a New Life!

Alicia, 3 months after surgery, hiked 3.1 miles!
Her Mom remembers Alicia as a healthy baby. At the age of 7 she developed asthma and was also hospitalized with pneumonia, suffering staff infections. From then on, all was well as she grew and went through her teen age years.

But things changed for her at the age of 20, following the birth of her first child, when she began to have complications.

It was during a routine exam that her doctor heard a heart murmur and suggested she see a cardiologist. At her first cardio exam, she was diagnosed with a bicuspid aortic valve. She was told she was fine and would need to be monitored annually. But she had some difficulties during her pregnancy - dizzy spells and fainting. She gave birth to her daughter in 2009.

Her baby daughter was very ill during her first year of life and was ultimately diagnosed with a PDA (patent ductus arteriosis). At one year of age, the PDA was closed, resulting in a very healthy child ever since.

But for Alicia, all was not well. She tired easily, was short of breath, and often felt faint. When she visited her cardiologist in May of 2011, she was told that nothing had changed.

She was also told that she likely would not need heart surgery until she was in her 40's.

How could she face the next 20 years feeling like this? 

The new year, 2012, found this young mother lightheaded, tiring easily, sometimes fainting, and suffering from migraine head aches. Her cardiologist told her she needed to live with these symptoms, and that she was too young to have surgery. She was also cautioned not to have more children.

The months passed, and the symptoms persisted. Alicia was extremely fatigued and fainted often, also suffering frequent migraines. Her cardiologist prescribed metroprolol for her migraines, which lowered her blood pressure and made her feel worse than ever. Alicia had chronically low blood pressure, and the metroprolol took away what little energy she had.

Their search for help led this family to the Bicuspid Aortic Foundation, looking for information, support, and hope. Alicia sought a second opinion from Dr. Sharo Raissi, who chairs the Foundation's Scientific Advisory Board. She underwent testing that revealed she had an aortic aneurysm along with her BAV. It was clear that Alicia continued to feel unwell, and she could not keep up with her very active toddler. In the fall of 2012, after having further tests, plans were put in place for surgery to remove the aortic aneurysm. The bicuspid aortic valve would be replaced if necessary. Amazingly, in December Alicia completed an extensive pharmacy technician program, despite feeling very tired and weak.

Alicia had surgery on January 16, 2013, at St. John's Health Center. The aneurysm was removed and her bicuspid aortic valve replaced with a bovine prosthetic valve. She now looked forward to feeling better, as her body healed.

By March, she was doing very well indeed. Alicia proved her new found energy and stamina by completing a 3.1 mile hike just three months after surgery (pictured above). What a dream come true! Today she feels great and is so happy. She now knows what it feels like to be the healthy woman she was meant to be! And her daughter notices it too. For the first time in her three years of life, she has a healthy, energetic Mom. This is a very happy family!

Alicia is now well informed about her health. She knows that some day the bovine prosthetic valve will require intervention. In the mean time, she is doing all she can to take charge of her health and her life!

May Alicia's story inspire others to listen to their bodies, and seek the help they need until they find it.

Thank you, Alicia, for sharing your story, and creating a climate of hope.

Sunday, May 26, 2013

Paying It Forward - Touching Many Hearts

From One Heart
To Another

"When you helped me, you helped many people......"
Pay It Forward!
Invisible Bonds of the Heart
How do you describe those that have walked together through life and death decisions? I doubt that there is a word in any language. They are connected in a very special way, through an invisible thread between them. Each end of this thread is tied with a very special knot, deep inside their beings. It is a bond that cannot be broken. Over time, as one person helps someone, and they in turn help others, hearts bond together in an unbreakable web. Each one of us can be a part of this wonderful connection. All by paying forward what someone else has done for us.

I have a connection like this to one particular woman in the mid western United States. Her bicuspid aortic valve and aneurysm surgery failed, and only a few months after her surgery she was in serious trouble. It is beyond my comprehension why her physicians did not help her get to a major heart center. Perhaps they thought she was beyond hope. Apparently one of her doctors thought that, because he later told her he expected she would have been dead rather than coming to see him in his office again.

She was not beyond hope! I helped her go to a well known aortic surgeon in another state, and she is not only alive today, she pays the gift of life forward at every opportunity!

Recently, I visited a young man in the hospital. He had just had a much needed surgery. The valve and aneurysm that both threatened him can no longer harm him! He found his way to help not through referrals from physicians, but through his own diligent research and because this special woman reached out to him and pointed the way to help.

This young man is one of several that she has helped. In a recent email, she told me about them. She closed her email this way,

"These are all people who have a chance to live long lives, 
because they are getting expert care.
That's what you taught me, Arlys, that there's care,
 and then there's expert care.
I wouldn't be alive right now, if I hadn't had expert care, so thank you."

You too can pay it forward.
After first getting expert help yourself, share it with another. 

In this way, all around the world
 we join together in this
 indescribable connection of hearts,
Creating a Climate of Hope.

Best wishes,
Arlys Velebir
Bicuspid Aortic Foundation