Grateful for my family, friends, and new OHS friends!
Journal posted on May 25, 2014
I was delighted to see today some responses to my first journal postings. Julia and Terrie Ann, I am so excited to meet you through this incredible resource Adam has put so much work into! I am already impressed and inspired by you and have just begun to look at the information under your name.
For a frame of reference, my formal name is Virginia, but having been named after my Aunt Virginia, who is also called Ginny, my parents thought I needed a name of my own. As a result I have been called Ginger all of my life and feel most comfortable with it. Actually, the name fits pretty well.
And to friends and family, Kermit and Carol and Susan, it is so good to hear from you and know you will be with me in spirit. There is still much research, decision making, and action ahead. Right now I am appreciating the value of having a Journal on this site. I opened my page with my story some time ago, but only now have felt ready to reach out and share, as well as to ask for prayer.
Family and Friends,
I know that getting an email about something I have never spoken of before will be a bit of a shock. It is a subject we knew we would have to deal with and work through when the time came.
I have been living with this for a long time, and it got to the point where Jim and I realized surgery was going to be necessary. I have severe stenosis of my aortic valve. I was born with a congenital bicuspid aortic valve, and if you want to know about it, there is no better website than this one to learn about all of this that I know of.
We do not as yet have any idea when surgery will be required/recommended. But we do want you to know what is going on. Surgery may be months away or years away. We hope to have a much better idea after the consultation this summer.
As you will find if you venture out on this website, aortic stenosis is always fatal. But there are many ways to have the problematic valve either repaired or replaced. We have lots of decisions ahead of us.
Heart valve patients and their family and friends use the personal part of this site like Caring Bridge. As we get to the point where we know more, you can always ask us. If we are not available, this will be a good place to look. Often around the time of surgery, a spouse or other family member or friend will post on my behalf so you know what is going on.
Indeed, we covet your prayers. It is the prayers of so many of you that have gotten us through so many of the other trials of our lives. I will never forget the great sleep I had the night before my first major surgery (at the young age of 58!), and how calm I felt heading to the hospital and throughout all of the pre-op process. There was no question in my mind that it was the prayers of all of you that God was answering, filling me with peace and comfort.
I do not have everyone's e-mail. If you know of some who need/want invitations to the site, please do not hesitate to let me know! I have been blessed so much by you before and I trust that you will once again carry our needs to God to get us through all that is before us.
I also ask that you continue to pray for my Twinnie, Patty, and her husband, Cliff, who lost their home in the Mother's Day tornado two weeks ago tomorrrow. They are staying with one of their daughters' families and will eventually move into a furnished apartment. They will be there for a long time as the house was a total loss, and the heavy rain and flash flood that coincided ruined the few things that might otherwise have been salvaged. We praise God that they had a safe room and it protected them.
May 2014 - Setting up Consultation with Heart Valve Surgeon
Journal posted on May 24, 2014
I have had a heart murmur all my life, but was unaware of it until I was 15. Our family doctor retired and we were at our first visit with the new one. He remarked about the murmur and my Mom nodded her head. She had known all along that I had a bicuspid aortic valve..
Just over ten years ago my primary care physician noticed a change in heart sounds. The murmur now had a click. I went for my first cardiology appointment and a great deal of testing followed. I have been seeing my cardiologist and having an echocardiogram at least yearly since then. I respect his judgement and appreciate the time he takes to thoroughly explain what is happening, what his recommendations are, and why,
Over these last ten years my heart valve has been deteriorating, and this year my cardiologist recommended getting a consultation at a "Center of Excellence" with a great deal of expertise and experience in valve surgery and documented positive outcomes.
I have been on this website many times and am grateful to Adam and everyone else who has contributed to it. I bought the first edition of Adam's book, but just last month decided to get the 3rd edition so I wasn't missing something important.
I am presently asymptomatic but my echocardiogram shows I have severe aortic stenosis. I know that it is fatal without surgery for repair or replacement of the valve.
I am hoping I am a candidate for minimally invasive surgery. I had a head/brain injury 25 years ago that continues to cause some problems periodically with vertigo, headaches, double vision, fatigue, and nausea more often than anything else.
I have been blessed with a wonderful primary care physician who has cared for me for over 33 years, delivered our two children, coordinated head injury care and consultations, breast cancer diagnosis and surgery, and kidney stone surgery, among other things. I did not plan or hope to be this challenging of a patient, but God has had other plans. My Family Physician retires at the end of this month - now less than a week away - and I wish her more peaceful days and opportunities to catch up on much needed rest.
I do have a new family physician who assures me she is up to the challenge of caring for someone like me. I look forward to many good years in her care. I was impressed with her at my first visit when she had gone through the information I had left earlier and was really on top of what my problems and medications are and which are the majors as well as the minors that are really offsprings of the majors.
So following my cardiologist's advice, I am working to set up a consultation with a heart valve surgeon, and pray the consultation can be smoothly accomplished this summer and my husband can free up time to be with me.