Lillian's Profile

I had Bacterial Endocarditis as a teenager. I was not expected to survive. This disease was considered fatal in the early 1980s . I had a stroke and was comatose for a short while. After couple months inpatient treatment I was sent home. I have several health issues as a result. I was told I would require open heart surgery in the near or distant future.I have received two opinions yearly for over thirty years. September 2014 is my surgery month. August is my pre op month. Repair is our hope.I have a form of hemophilia therefore replacement and associated blood thinners are of great concern. I have had several mostly unrelated surgeries for other issues such as I run on one kidney, colon cancer surgery last year, and other serious procedures. I have lived with vision and balance disorders due to the endocarditis. I tend to have serious surgical and recovery complications I have had several new life start ups. ...more than nine lives I guess you could say.I also struggle with severe mental illness......acomplex form of PSTD.August,2014 my mitral valve was diagnosed with Barlow's disease during pre op 3 D TEE. Not a big surprise, but confirmed we needed to fight for insurance to pay the thoracic valve specialist versus the one who is not a valve specialist. I was blessed generously with a mitral valve repair. ....should last up to around 10 years....time for more medical advances. Life feels overwhelming,but I am functioning quite well with my new heart issues. No o e ever said life was easy. ....the gifts hidden in the busy world,well,I try to appreciative the joys available. I can feel out of my control as my mind and body remember years of all different pains that still sneak up. Rehab went well. The clinicians were very respectful of my physical fears after so many body and cardiac traumas along with emotional issues. All our fears and feelings are legitimate, sometimes unrealistic or miss understood.This makes growth all the more precious.Cardiac wise,i have had or have,stroke,Barlow's, endocarditis, heart attacks, visual loss ,coma,and tachycardia and more . After I stopped fearing my "delicate heart " I exceeded all the goals,with the exception of weight gain and some heart rhythms. I enjoy my morning workouts at home which were pre set before ending rehab.All my assortment of specialists Agree i have avery co pkicated collection of health issues being a complicated patient.But,they all agree i do the best i can and stsy proactive and advocate for myself. I am proud if this despite dissapointment in my health.I WISH ALL OF YOU wellness as you live your personal stories. (((Hugs ))))💖💖