In the last few days I informed my friends about my situation. Up to now I had told just a few and thought this small group of family and friends could handle it. Suddenly I realized I could not handle it- it's huge. My friends are all over the world and are kind, compassionate people. So I invited them to the party and I feel so much better after reading all the responses.
Susan Sontag wrote "Illness as Metaphor" and made the point that people feel embarrassed and guilty when things suddenly go awry. I felt that way. It's not helpful. If you are just starting this adventure for real, as I am, open up and let them in.
I have been able to file this whole thing under "later" for a few months but not anymore. I had a second, detailed echo the other day which confirmed my aortic stenosis, the number of which was worse, puts me in the middle of the severe category. I am having a cardiac cath next week. Then meet the surgeon, take a quick holiday to France and Italy, then return for surgery in early October.
The hardest part for me is that I am 100% fine- I run 4 miles a day, up and down the trail hills of Marin. I have zero symptoms, all my numbers ( except this vital one!) are good and yet I have this critical physical failure I have had forever! I read it's not uncommon for women to only find out about a bicuspid valve in the 5th decade of life. Its a struggle for me- I am so worried I will never actually recover- that I will have back problems forever and generally be weaker. I have never taken any meds, only been in the hospital for childbirth, and now this- the mama of all operations! How did I get so lucky?
I am working on keeping my anxiety down, which I feel rising all the time now. I have every confidence in my doctors and the place I am in. I just cannot believe it's happening to me. If I had symptoms that would get better post op that would be one thing- but I am ok now and post op will not be ok, so I am not looking forward to it all.
That said, I have found great comfort in this website- I think you all are the most amazing, brave people who go thru this experience with such humor, appreciation and generosity to those like me, who are right behind you.
I hope I can be like you in October.
My family is incredible - they will take good care of me :)
I seem to have cleared a huge mental hurdle in accepting my situation. I woke up a few days ago and just said "enough". Since then my mind is clear and calm and I have not experienced the usual daily devastations. My house is no longer on fire. I found a well of courage- and I feel completely supported by my family.
I will be having an angiogram in a few weeks time. Surgery scheduled for October. The sooner the better...the waiting period is very tough...try as I may not to, my life seems to be on hold for now until its over...then the recovery which is whole new ball game.
Thank you Adam for providing this site- reading how well so many others facing the same op I am have done has given me strength. I am still afraid but i believe I can do this.
First day of Summer, first entry. I was diagnosed 4 weeks ago- what a shocking event! I had just completed an annual physical, which I passed 100% . My doctor said I had a heart murmur..I have heard this since I was 20...and she said we should just take a look. It was my last test in my physical. I have never had any cardiac symptoms like SOB, angina, fainting, dizzy etc. The echo revealed severe aortic stenosis and the need for open heart valve replacement.
My life pretty much froze on the spot. First I could not believe it, I was afraid to close my eyes those first few nights. Then I was convinced I would never survive the op, then I cried for 2 weeks and felt utterly horrified.
Now I feel better- I will have a cath next month, surgery in October with a surgeon that came well recommended. I am going to Paris and Venice in September to give me nice images to take down the rabbit hole. I am learning spiritual meditation and yoga breathing to help prepare myself for what can only be described as a tremendous physical assault. I do have fear and anxiety- I do worry about cognitive changes and a slow recovery. I told my family to be brave as I work on my courage. I so want to live. I don't think my life story is meant to end here..I need my family so much, as they need me.
Its been a hard month for me for sure but I have benefitted as well. I am fully awake and mindful and in the moment. I have done extensive reading which has had pro's and con's. I don't need to know about every fact and study result. As far as I am concerned ( and I used to be a nurse who worked with post-op thoracic patients) I am going to Wonderland..this adventure will give me my life back, eventually, after a very long recovery time. I don't know what the trip will be like. I know It's unique. I know there are some dark passages along the way.
Right now I am trying to unfreeze my life and enjoy myself and not think about this 24/7. Mixed results. But it's a gorgeous warm, sunny day here, the dog is snoring at my feet and all is well.