Jan 26
Gaby
Gaby , Posted on SUPPORT NETWORK Blog

With so many chances, I realized I am a survivor and winner. I won´t give up!

Until 35 years old I used to be very active, visiting regurlarly the cardiologist. I had two cardiac arrests, 2009 (I did after this event a cardiac ablation) and 2010 I had another cardiac arrest event. In 2010, they realized that I need to improve my blood pressure using the med Fludrocortisone acetate. I used med to improve my blood pressure until 2014 when I had another cardiac arrest.  Only in 2014 I had the diagnostic of BAV and Dysautonomia, after extreme bradycardia and hundreds of previous syncopes during my life (many in serial form, one after another..almost 20 syncopes during a single day, p.eg). In the beggining of 2015 I became a pacemaker user. June of 2015, with extreme fatigue I visit a cardiac surgeon that found in my exams of 2014 a big aneurism of ascending aorta 5.0cm. He asked me some exams and found pulmonary hypertension, and both valves mitral and aortic with failure. Other physician concluded that I had also the Ehlers-Danlos. They did not recommend the repair at that time.

In december/2015 I had a TSV and my heart reached 240bpm for more than 30 minutes, I went to hospital and stay there for one week under observation.
 In January/2016, out of my city, traveling in Rio de Janeiro/Brazil, I had aortic dissection and during the surgery : I had new biological valves replacement ( Hancock Tissue Valve) , Dacron  Tube Graft (Hemashield) and also – in surgeon hands- Atrioventricular Nodal Tachycardia Ablation. Immediately after, arriving in the ICU, I had an unknow bleeding and had to be reopened. About 9 hours of surgery (in this case, 2, the first and second intervention). So, I had the chest opened for twice.

I stay more 22 days in ICU and 4 days in semi-ICU then left the hospital. After 3 days at home I had lungs complications and came again to ICU where I spent more 15 days with unidentified infection.

After months abroad I became to  my city (Brasilia/Brazil) I did not have support and specialized rehab because the kind of rehab recommend by the doctors (with medical supervisor) occurs only in one hospital here (public- Instituto de Cardiologia de Brasilia) and there  they assist only their patients due to their lack of capacity to attend extra demand.

In my country, Brazil, only in Sao Paulo has this kind of rehab. Actually I have been dealing with some arrhythmia, using only 80 mg per day of verapamil hydrochloride propranolol 10 mg, twice a day or more, and high salt intakes. One year after I do not have the same pulmonary response, it is working with extremely low rates. I am not over overweight, no diabetic and have low cholesterol rates and normal to low blood pressure.
I really want to improve my heart and health conditions. It´s very difficult to breath, sometimes I feel much pain. I have difficulties to breath. Much of this I consider to be all about the dysautonomia disorders and the recurrent arrhythmias. Unfortunately, for dysautonomia, in my country, there are not medical specialists.
http://www.dysautonomiainternational.org/map.php?SS=3

Anyway, about all mentioned before and the lack of treatment in my place I consider myself a SURVIVOR.Thanks GOD, HE gave me a lot of chances!  Until now, I do not know how I will get better and find a good support abroad to make a real checkup, improve my quality of life and also recover my breathing condition.
By this time, I just want to say from my experience that faith and optimism are mine best meds. Trust in your recovery because you are also a survivor and winner in this fight. We won´t lose this game!
If you have some suggestions and tips, please consider send me some. I thank you in advance. 
3 Comments
  • shirleymom
    shirleymom,
    You ARE a survivor! Life is beautiful, even when it is difficult. I hope you search the internet and talk with a few doctors about your case. Maybe something can come of it. You are awesome! Keep up that faith and optimism!
  • AHA/ASA Sarah Ismail
    AHA/ASA Sarah Ismail,
    We appreciate your story and I'm sure you do and will continue to inspire others. Crazy, you never know what people are dealing with by just viewing their external shell. Continue the great work, Feel free to subscribe to our Together to End Stroke newsletter and/or Stroke Connection Magazine where you may discover similar stories and become familiar with others who traveled the same road as you. I've found as I continue to follow others and learn their stories, it motivates me to continue as a stroke advocate and sharing information with my loved ones and family in effort to help them prevent and beat stroke. Best, Sarah
  • apatis
    apatis,
    Gaby, I would like to compliment you on your toughness and fighting spirit. However, you are more than a survivor, you are a fighter. For my story, see FIGHTING BACK under Stories of Survival. Keep fighting, al
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