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Diagnosis: Bicuspid Aortic Valve

Member Since: August 27, 2010

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Jerry H posted an update

1 year ago (September 7, 2024)

14 years and it started out with a blood clot. Hey Heart Valve folks, so Aug 31 was my 14th anniversary of my prosthetic aortic valve. It was very nearly my last. I threw a clot into my heart and was very close to not making it home. If you want to read my past it's all there but Labor Day is the new push reset birthday. I take warfarin. I have never had an incident and have been on autopilot for a few years. Three weeks ago I had to have a colonoscopy and Gastro scope. My cardiologist told me I didn't need a bridge and therefore I'm completely off my blood thinner for 10 days and another two weeks to get into therapeutic range. I've been working like a madman and I have said multiple times I was so tired I could sleep for a month. Flash forward to Labor Day. I'm tired but not out of breath. I went to Target and came home. I walked upstairs and I instantly threw up and broke into a cold sweat which was followed by pain that can only be described as what I imagine a rabid baboon ripping off my arm. My jaw hurt my tongue hurt my chest felt like an elephant was sitting on it. I called 911 and they made it to my house in under five minute. I chewed four baby aspirin and if we went. I was in the cath lab in under 30 minutes. Now here's the part where I get choked up. My husband is in Austin working on the last part of his PhD. We have a Ring Doorbell so he saw everything. I have never screamed in pain or begged an ems worker to please don't let me die. I am home and 14 years later I'm suddenly learning again about what is important. It appears that I only suffered minor to no long term heart damage. I am an extremely lucky guy. So my advice long term. If you have a prosthetic valve don't let anyone tell you a bridge isn't needed. I am living proof that cardiologists are growing complacent. YOU are your best advocate. I've always managed the medication to my life. And trust me somewhere after my third case of endocarditis I got lazy. So, I'm not questioning my decision on the valve. 2010 was a long time ago and I was making plans for life at age 38. But if you ever feel instantly nauseous and break into a cold sweat do NOT wait to call 911. I was 10-15 minutes from death. Trust me. It's terrible to wait for an ambulance. I'm alive but I don't want to ever go through that again. To the folks about to join our club let diligence be your guide. Take care of yourself. Sometimes you will forget what you have in your chest. But life is sweet and at 52 I am and was not ready to shuffle off stage left. I don't mean to scare anyone. The valve did its job. My arteries are in good shape but I know I'm now in a different place emotionally and physically. Good luck and again Adam, this page yet again gave me the fight and a community where one doesn't exist.

❤️ John Russo reacted to this

Rita Savelis

Thanks for sharing your story Jerry. I'm so sorry that you had to go through that. I've had 2 mechanical valves for 9 years and have always bridged when I had even a minor procedure (like a colonoscopy) even if I hate bridging - it wasn't my choice, I was... Read more.

Betsy Davenport

What's a bridge?

Marie Myers

I am shocked that the doctor would say you didn't need a bridge with a mechanical valve! Whatever was that doc thinking? @Betsy- a bridge is when someone on warfarin is switched to another more easily managed IV or subcutaneous dose of anticoagulant for a surgical procedure. After the procedure,... Read more.

Tracy Chang

Thanks for sharing. I have a tissue aortic valve and have been taking Clopidogrel for two years (b/c of a TIA incident six months after surgery). Two weeks ago I needed to have a routine colonoscopy. My cardiologist bridged me with baby aspirin starting seven days before the procedure. I... Read more.

Ana Brusso

Congratulations on your 14th year anniversary. Continued good health and God bless you 🙏❤️

Doug Fults

Yikes, glad you came through, and thanks for sharing that cautionary tale.

Jerry H posted an update

3 years ago (September 1, 2022)

12 years (and two days) and still ticking! Wow, what a year. So the basics about me. I had a bicuspid valve that got infected with strep viridans after a routine cleaning. Went septic six weeks later with endocarditis and survived. Got some serious antibiotics for a month and had my AVR replaced with a prosthetic valve on Aug 31 2010. (Lots of different opinions on what's best, for me a prosthetic valve was the right choice.) This year was an amazing year. I got married in November FINALLY. I turned 50 and as I was thinking about this post it dawned on me that I have lived a full life in that time. When I first found out I was going to need heart surgery I did all the things people in a crisis do. The main thing though was I had some deep conversations with God. No, this is not one of those posts but it's relevant. There was some time after the surgery when I got sent home with a second picc line from a staph infection and then managed to catch all sorts of other fungal and gut bugs where I felt awful. I've never admitted this but I was truly ready to throw in the towel. During one of those evening talks with the Universe I asked for 10 good years. I just needed 10 good years to make everything right and to LIVE. I was a certified workaholic. It brought me a good life but I felt in that moment I had lost out. It took some PTSD counseling to help me get past those feelings of doom. The best part was I did start to drink every ounce of life I could get and didn't look back. As I was thinking what to say this year I was scrolling along and the thought occurred that I got my 10 years and more. I thought of all the things I got to see, hear, taste, smell, touch feel and witness. It brought me to tears. Retro perspective is a funny thing. Sometimes it is a bolt of blue. I watched little kids grow into very capable adults. I travelled the world. I moved to Dallas and then last Fall into our place in Texas on a lake north of Austin and with my husband. There have been scares and trials for sure, like emergency gall bladder surgery that had to wait two days because my blood was thin. Yeah the one time I needed it to be in range and it was high. But I made it through that and it gave me a kick to be healthier. See, that's the thing about life, we never know how much we'll get. It's all part of the human condition. So this year I have a little journey planned which I'll tell you about next year. And those conversations with God? Well, I still have them. Whatever is up there pulling the strings doesn't get everything right but I have nothing to complain about. In closing, for those of you about to have surgery or just recovering my advice is in the last 12 years of posts. Let your body heal, let you fears be known. Ask questions, listen to the clinicians and take it all in. Yes there will be pain and some days will suck. But just remind yourself you are getting a chance to push the reset button. That's a gift few people truly understand. Adam, as always, thanks for getting this site up and running and keeping it running for so long. Here's to another trip around the Sun!

❤️ Klara ÄŒiÄiÄ‡ reacted to this

Jerry H posted an update

4 years ago (August 29, 2021)

11 years post surgery and still clicking away here. So this is not going to be my normal-tell the story post. Rather you have a volume of my stories about how and why I'm on here. The 'TLDR' as it were, I had a bicuspid aortic valve. I went to... Read more.

👍 Paul Rose and Rose Madura reacted to this

Tracy Fallu

Great post! Completely spot on about living life in the present.

Meredith Bray

LOVE this!

Anonymous

Thank you for your post heart warrior, congratulations on your 11th anniversary. Be well and God bless you.

Rose Madura

Wonderful post and it's always good to hear from someone who has had a long recovery.

Deena Z

Thanks for sharing the greater, bigger picture view, Jerry. Stay well. Look forward to your 12 year post surgery share!

Suelynn Hanegraaf

Appreciated your frankness about post-surgical living. Yes, it may never be our hearts that "take us to our Maker" in the end . . . but we, post heart surgery patients, have certainly learned quite a bit about how to enjoy life and not to take things too seriously!