My name is Gloria (aka: Glo) and my story is still unfolding for me, and at this point I do not have a scheduled surgery date on the immediate horizon. In typical fashion, when I feel FEAR, I tend to go on high alert and a fact finding mission and have subsequently found this awesome site and now feel a little more grounded. Back in 2008-2009 I had a major health scare that originally started out as a possible lung cancer diagnosis, but after months of probing, sticking scaring the daylights out of me it was determined after a liver biopsy and then a few days later a lung biopsy (spent 3 days in the hospital after procedure with a collapsed lung awaiting the type of cancer it was) only to be told on the 3rd day that it was not cancer (thank goodness) but an auto-immune called Sarcoidosis. I spent a year and a half taking medications (high doses of steroids, anti rejection meds too) and seeing a Pulminologist on a regular basis. It was certainly a time in my life called the Dark Night of the Soul. So many things happened during that time: A loss of my 25 year dream a business, a divorce, my dad, and then the Sarcoid diagnosis. It was a roller coaster.
Once I was on the way to better health- life evened out. Then in late 2010 I met and would marry my husband. Yeah. That is a cool story for another day. I need to stay on track here. :) In marrying I was also able to get on his insurance. That allowed me to get on with his General Doctor and stay on top of my health. I had a physical check up and something came up about an inflamation in my blood work. They did an EKG- it showed a Right Brundle Branch Block in my heart. Sarcoidosis can be a catylist for RBBB. Sarcoid can be an insidious disease , but luckily after the initial attack, it went and has stayed in remission. (NOTE: I look as this as a gift, as if not for the RBBB I would not have gone to a cardiologist for many years until my symptoms may have been severe and life threatening as is what sometimes happens to most who are living and going through their daily lives).That was enough for my GP to send me to a local cardiologist to have it checked out. They did a full work up- to check out this other thing that started to show up on my EKG- a Heart Murmur. So for the past few years- I go on a regular basis to keep an eye on things. About a year and a half ago- my cardiologist started talking about my heart seeming to be getting stiff. I of course changed my diet- and bought a bike. He mentioned that my aorta appeared stenotic, nothing to be alarmed about- he would be keeping an eye on things. So that brings to to about 8-9 ago- when my echo came back and it showed a progression in the severity of the stenosis, and then it was mentioned that there was a regurgitation in my aorta, it was moderate. Again they would keep an eye on it- and I was to come back in 6 months to be checked again. So I did. This past June 2015- and the Aortic Regurgitation is now at a severe level. I will turn 54 years old this month. If I were 10 years older, he said they would recommend surgery right away, but right now still I am on a watch and wait plan.
To tell you the truth....this watching and waiting is nerve racking. I have had all sorts of melt down moments when I am by myself. I decided to take some action, and this is how I got to this point. I am mostly a stalker on this site for now and just watching and learning form the videos and the stories. But- it does bring me comfort to have found this site, seeing the bravery of it's members, the doctors and their videos. In fact- I just sent my surgeon of choice (yes- he is on this site as well in Orlando Florida- Dr. Kevin Accola) I just sent him a note today as well asking some questions and introducing myself- and letting him know what he may be in for.....of course I peppered my note with humor ;) and hopefully when the time comes he will have me as a patient.
This site is truly awesome, and I love and feel strength from all of you. Seeing how you are taking your health and meeting this challenge head on- informed and supported by others who have gone before us. It believe it or not- calmed me down the week between the echo and hearing something had progressed and kept me focused until I saw my regular cardiologist. I will see him again in September- September 11th to be exact. I already feel more in control of my health by just writing this and putting it out there, reaching out to the potential surgeon I will have on my healing team. It may be another 5 years. It could be a year. I have no idea. All I know is I am not gonna do this by myself. I have started to put together a plan....and feel through this site I have found a place to put my thoughts, fears and hopes for the future. Maybe by the time they decide I need to go into surgery- The Aortic Regurgitation will be a repairable possibility instead of the Pig Valve or MEchanical replacement. I think for the most part I feel good still, some shortness of breath, but know that my heart is fragile at this point....I think about it daily, and try to send good healing thoughts into it, treat it gently. I have reduced stress, my BP is high and am taking meds for that. My cholesterol is normal again thanks to 10 mg a day of Lipitor. So much more to this story, but will close now and get this posted. I am glad to be here among my heart tribe. Feeling a little more FEARless now that I have written this stuff out. Namaste. ~glo
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