Jara, 31, is incredibly inspirational.  She heads the Optimistic Heart Blog from London, England, providing a wide array of information coverings such topics as Health, Beauty, Fitness, Travel and more.  But before she started blogging about Heart Disease and what it is to be an Open Heart Surgery Survivor, she was first a Heart Patient herself, and nothing seems to slow her down.  Jara tells us, that while she was not even 30 years old, she was already in need of a pacemaker.  I had the opportunity to interview Jara via email and due to the distance, thought it would be the best way to relay her story.  I can’t express enough what a blessing I thought it was to have Jara agree to volunteer.

Heart Problem or Diagnosis
Tricuspid valve atresia [type IIb]
Transposition of the great vessels 
Ventricular septal defect
Pulmonary artery stenosis 
Dextropositio cordis 
Status post total cavopulmonary connection with intracardiac tunnel [Kreutzer method with RA-PA anastomosis and ASD closure 1990, Charité, Campus Mitte]
Ventricular septal defect [restrictive foramen bulboventriculare] 
Surgeries

1990: Fontan at the Charité in Berlin, Germany.  I do not recall who the surgeon was at that time.  [The Fontan procedure or Fontan-Kreutzer procedure is a palliative surgical procedure used in children with univentricular hearts.  It involves diverting the venous blood from the inferior vena cava (IVC) and superior vena cava (SVC) to the pulmonary arteries without passing through the morphologic right ventricle; i.e., the systemic and pulmonary circulations are placed in series with the functional single ventricle.]

 
In 2015, I had 3 open heart surgeries, within 13 days of the initial surgery. 
 
Due to internal bleedings, I had to undergo a second surgery, 3 days after the first surgery. The first surgery to implant a Dual-chamber pacemaker system with epicardial leads, perform a closure of the sort-pulmonary shunt, resection of a membrane in the left ventricular outflow tract and complete a Fontan conversion with a 4 mm fenestration cardiac tunnel, took place on September 10, 2015, at The German Heart Centre in Berlin, Germany by Prof Dr. med. J. Photiadis
 
Then on September 13, 2015, I underwent a re-thoracotomy for right hemothorax and placement of pleural drain.
 
Finally, on September 23, 2015, they performed a sternum refixation.  The longest of these surgeries was approximately 15 hours. Since 2015, I also have a pacemaker.
 

There was absolutely no heart disease history in my family. I always lived and am currently leading a very healthy lifestyle, to support my heart. Of course this means that I do not smoke, take drugs, and I workout almost daily. I try to keep a healthy work-life balance. The majority of my family support me in this lifestyle, and they live a heart-healthy life as well.  While there are no known risk factors that can cause the type of congenital heart defect I have, if I were to indulge in any un-healthy heart practices, my heart would suffer tremendously. Moreover, I also do not take any birth control or anything that would control or regulate my hormones, as it simply is not beneficial for my heart.

Since my heart defect is a congenital heart defect, there were no warning signs. My parents only found out about the fact that I have Tricuspid Atresia when I was born. My skin was very blue, which showed that I didn’t get enough oxygen.

I was fortunate in the sense that I did not suffer from depression as a result of my heart surgery. However, I cannot deny that recover was a very tough time and I was a very emotional. Speaking to friends and family is very helpful. Meeting fellow cardiac patients to exchange experiences is super helpful. It was very motivational for me to sign up for an easy 5K run, to have something to look forward to.I was very physically active prior to my surgery and always enjoyed horse riding, yoga and pilates. I workout more than before and took up running, and do more circuits and HIIT.  It took around 6 months for my life to return to normal.  It was around the six month mark that I started to have a routine again and required less assistance from others. However, my life has changed in the sense that I value my time much more now, and I am now trying to use my time even more. It is a new normal that I have created. But the new normal includes new perspectives, more sports and travel, and better choices. Today I have learned to better deal with my emotions, and in an effort to find an positive outlet for my thoughts after the surgeries of 2015, I have started a blog called Optimistic Heart. It has helped me a lot to reflect and enable me to create a wonderful tool to share experiences with fellow heartwarriors.

Close Menu
×
×

Cart