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Aortic valve replacement surgery coming soon...
New member. I have a bicuspoid aortic valve and aorta dilated to 4.3 cm. I'm severely stenotic but unable to judge symptomatic or not. Last week I was in a seemingly small scooter crash and broke my collarbone, got some bruises and hit my head pretty hard, but no headache or bleeding on the brain.
I needed clearance from cardiologist for general anesthesia to repair the fracture. Coudn't get through to my regular cardio. Ended up seeing a new to me doctor who saw my August 2019 echo, heard my story of fainting under fentanyl, and may have misinterpreted a comment about being a bit short of breath while hiking above 5,000 feet. (I live at sea level.) He managed to get through on the phone to my cardiologist and they talked. He wouldn't clear me for general anathesia. I don't blame him. He says I'm symptomatic and advocated some pretty hurried surgery, so the ortho can fix my shoulder.
I've had a rough week. The accident. ER. Fracture that became fully displaced. Surgery denial and suddenly I'm planning for open hear surgery to replace the aortic valve and wrap up the aorta. Super anxious. I've been aware of my possible prognosis for ~20 years, but only in the last 4 have things worsened. I've not tried to research anything about surgery so as to live in the now and not fret unitil it was time. Will hopefully talk with my regular cardiologist tomorrow if his office staf will tell him I called.
When my aorta had gotten stretched I had ot give up bicycle racing and all the hard riding I loved to do. I replaced it with motorcycle riding. Anti-coagulants will put an end to that now. I'm 54, single, no kids. Looking to my church for in-home support.
Question. How much help did your cariodologist provide in planning your surgery and out patient care? I was expecting a lot and fear I'm not going to get much beyond a phone call. Gotta stop. I over did the shoulder use today and it's hurting.
AHAASAKatie, November 25, 2019 9:01am EST
Thank you so much for sharing this! We have some great Heart Valve Ambassadors and survivors who can share their personal stories with you over the next few days. It sounds like you have had a really rough time, I can't imagine the shoulder pain and discomfort. Please know that we are here for you! Best Katie
AmbassadorB, November 25, 2019 4:17pm EST
MH1965, What follows is TRUE! I say this because the story of my pre- aortic valve replacement - experience has most of the twists and turns that you have just described. I had been advised that my Aortic Valve needed to be replaced. My Cardiologist had been my mentor for several years and had seen me through a triple by-pass, etc. So, when he told me that I was due (Get it done, now), I couldn't argue with him and said I would get back in touch, Then, I went home and completed plans for a vacation trip to Yellowstone Park. At the Park, first evening there, I passed out and the Park Doctor told me that I needed surgery for the valve - Now! In fact a helicopter was about to be ordered to fly me to Idaho Falls where a top-notch surgeon would do the procedure. I called time out, and after conferring with my loved one, decided to fly home and have the work done there with medical personnel that knew me, etc. This is what we did. My Yellowstone Park vacation was a total loss. So we flew back home and I met with my cardiologist, who was very understanding and while reviewing my latest test results, we were overheard by a surgeon that was introduced to me and had been laughing when he learned abount my recent experience. It turned out that the Surgeon in Idaho Falls was one of his best friends and the best Heart Surgeon in the country! Ha!
I was more than 30 years your senior when all of this took place, and while it wasn't a piece of cake, it was a solid A+ professional medical experience for me! Your cardiologist and the medical staff, following your procedure, will start you on the right path and monitor your progress - recovery. Cardiac rehab is the finest way to go. Your recovery and exercise program will be carefully followed and monitored. And, you will be amazed at how fast you return to your "normal" good quality life. While your cardiologist won't be walking every step of the way with you, he will direct you to the folks that will be your regular medical interface. They will have the experience and knowledge of your own situation to be the right team. The cardiac rehab personnel that provide the exercise routines, direction and monitoring of your improving condition are the ones that are on the field with you. Trust them!
Finally, don't throw the towel in on bike riding. Yes, you may want to back off from some of the racing excitement, but exercise and doing what you enjoy - stay with it! Anti coagulents (I am a Warfarin user) should not be an excuse to "retire". Be alert to protection and care in avoiding cuts. You will find that you bruise easily. Those are just your battle stars on your combat ribbon!
Git 'er done!
All the best,
Ambassador B Bernie
MH1965, November 25, 2019 9:26pm EST
Thanks Bernie. I read your story. :-) I've read most of them. You have a very positive attitude. Helpful. The cycling went out two years ago. I went on a trip. Came home and never rode to work again. Racing stopped instantaneously in 2015. I substituted with motorcycle riding, similar, but different. I've had four accidents in local traffic, actually all on a scooter. I don't know any doctor who thinks I should keep motorbiking while on anti-coagulants.
I finally got to talk with my cardio today on the phone. He is giving me a surgeon referral and I hope to meet with the surgeon and begin planning before Christmas. Ha! Probably he has no time for me. I'll see my doc next tuesday in person. He thinks we may still be in a watch and see mode, but time to get more prepared. Maybe January, February. No surgical fix to the fractured shoulder likely.
AmbassadorMR, November 27, 2019 11:32am EST
Ambassador Bernie has give you some very useful support and encouragment. I will simply add that the urgency of your situation may require you to "step up" the assertiveness that you use in dealing with your doctors. You are describing symptoms that suggest your valve and aortic enlargement need timely treatment in order to avoid additional complications. Your shoulder fracture is an added concern that they appear to be considering as secondary to your heart issues.
My hope is that you can meet with your surgeon very soon (1-2 weeks) and get the plan in place for prompt treatment. We are here to support and I know I join Bernie and all of the other Ambassadors in wishing you strength and an excellent outcome as you move along in your health care journey.
MH1965, December 22, 2019 1:05am EST
Update. Both my regular cardiologist and a cardiothoracic surgeon at Stanford have asessed me. The surgeon reviewed three years of echos and a brand new one, as well as a fresh cat scan. I had 20 minutes with my cardio, (two weeks later) 20 mintues with the surgeon's PA, and about 40 minutes with the surgeon. The reviews show my aorta is stable for the past three years. Pressure gradient has worsened. None of the three think I'm symptomatic. I've also met with a colleague's wife who had the exact same surgery four years ago by the same surgeon. It was somewhat helpful to hear how her receovery went and how she recognized her symptoms.
For now it's watch and see. I'll keep walking to public transit, 2.8 miles a day roundtrip and watch for shortness of breath. We'll do echos every 6 months and an MRI annually. I'll update as appropriate.
Thanks all and happy holidays!