Shout out and gratitude to this community

[kvinyeta]

My name is Kirsten, I am 37, and I just wanted to introduce myself and express gratitude for all the people in this community who support one another. I was born with a bicuspid aortic valve and first had it replaced with a porcine valve in 2004, and eventually with a mechanical On-X valve on Dec 31, 2018 (never been so wrecked on New Year's Eve in my life, ha!). I didn't join this community sooner because my surgeries left me prone to anxiety and while I am highly functional in most other arenas of my life, medical talk can sometimes send me spiraling. Out of self-protection, I avoided these forums to avoid hearing bad news or getting triggered by other people's information. But I realize now I also missed out on camaraderie and hearing about the joyful and meaningful lives people lead despite all of our cardiac interventions. So here I am, taking this leap, and becoming more courageous and accepting of the possibilities that lie ahead (both good and bad) as the vivacious, strong, but also a bit vulnerable tic-toc crock that I am

I am a doctoral student, a mom to a rambunctious 4-year old, a partner of 20 years to my high school sweetheart, a nature lover and an avid backpacker. It has been a bit of an adjustment living as an active person on warfarin, but as I have seen discussed here, the adjustment was not nearly as life-altering as I initially feared it would be. I am currently preparing for the longest backpacking trip I have personally done—a 50 miler around Oregon's Three Sisters, and will be taking a Wilderness First Aid course so my partner and I are prepared in the event I sustain an injury that could be made worse with warfarin. Learning all about Quick-Clot and other tips and tricks for getting us potential blood squirters under control on the trail.

I hope to be of service on here to other folks awaiting or recovering from surgery, and other young(ish) people unaware that many of us young tickers exist (I have sometimes felt lonely not knowing other young people with mechanical heart valves, but there are plenty of us, it seems!). And I absolutely look forward to learning from and celebrating those of you who have been on this journey longer than me. Reading your stories gives me hope that I may be able to live a long(ish) life and be here for my daughter for years to come. As I read about your valve anniversaries I feel your joy and it is though I myself am celebrating it, too!

 

[pellicle]

Hi and welcome aboard

So here I am, taking this leap, and becoming more courageous and accepting of the possibilities that lie ahead (both good and bad) as the vivacious, strong, but also a bit vulnerable tic-toc crock that I am

gosh, I haven't heard a Peter Pan reference for ages

my view is that knowledge and empowerment is the only antidote to anxiety. Knowledge is not reading thousands of various web pages but is the pursuit of only sources of veracity and knowing what that means.

I combine this with some philosophy:



because personally I can't believe in anything that I haven't experienced.

Some quotes from the greats:

Best wishes

 

[dick0236]

.......... Reading your stories gives me hope that I may be able to live a long(ish) life and be here for my daughter for years to come. As I read about your valve anniversaries I feel your joy and it is though I myself am celebrating it, too!

Welcome to the forum. Don't sell yourself short. My sons were 6 and 8 when I had AVR and I had thoughts like yours.....would I be around to see them grow up. They both are now over 60. I also have three grandkids......the oldest about your age and they have given my wife and me 5 great-grandkids....so far. There is no reason for you to do less. The beauty of having OHS today is knowing that you not alone and that you can reach out to a lot of folks who have walked in your shoes........so welcome aboard.

 

[Superman]

Welcome aboard. I know what you mean about feeling alone. At 17 and before the internet, I was the only kid in the world who had heart surgery in my mind.

I can also relate to good timing. Spent our 10th anniversary in ICU the day after my second heart surgery. That was with four young (now five not so young) kids at home.

You’ll have to share your adventures on the 50 miler. Mostly day hiker here, but my wife and I did 17 miles in a day once. 9 is the longest single hike we’ve done with the kids.

 

[Chuck C]

My name is Kirsten, I am 37, and I just wanted to introduce myself and express gratitude for all the people in this community who support one another. I was born with a bicuspid aortic valve and first had it replaced with a porcine valve in 2004, and eventually with a mechanical On-X valve on Dec 31, 2018 (never been so wrecked on New Year's Eve in my life, ha!). I didn't join this community sooner because my surgeries left me prone to anxiety and while I am highly functional in most other arenas of my life, medical talk can sometimes send me spiraling. Out of self-protection, I avoided these forums to avoid hearing bad news or getting triggered by other people's information. But I realize now I also missed out on camaraderie and hearing about the joyful and meaningful lives people lead despite all of our cardiac interventions. So here I am, taking this leap, and becoming more courageous and accepting of the possibilities that lie ahead (both good and bad) as the vivacious, strong, but also a bit vulnerable tic-toc crock that I am

I am a doctoral student, a mom to a rambunctious 4-year old, a partner of 20 years to my high school sweetheart, a nature lover and an avid backpacker. It has been a bit of an adjustment living as an active person on warfarin, but as I have seen discussed here, the adjustment was not nearly as life-altering as I initially feared it would be. I am currently preparing for the longest backpacking trip I have personally done—a 50 miler around Oregon's Three Sisters, and will be taking a Wilderness First Aid course so my partner and I are prepared in the event I sustain an injury that could be made worse with warfarin. Learning all about Quick-Clot and other tips and tricks for getting us potential blood squirters under control on the trail.

I hope to be of service on here to other folks awaiting or recovering from surgery, and other young(ish) people unaware that many of us young tickers exist (I have sometimes felt lonely not knowing other young people with mechanical heart valves, but there are plenty of us, it seems!). And I absolutely look forward to learning from and celebrating those of you who have been on this journey longer than me. Reading your stories gives me hope that I may be able to live a long(ish) life and be here for my daughter for years to come. As I read about your valve anniversaries I feel your joy and it is though I myself am celebrating it, too!

Welcome! This is truly an amazing community. I had a mechanical valve put in 3 weeks ago. I'm 53 and have every expectation of living a long healthy life and I expect that you will too. Our mechanical valves will likely outlive our physical bodies.

 

[kvinyeta]

Thank you all for your welcoming, kind and inspiring messages!

Pellicle, I always welcome inspiring philosophy. Nature is where I am at peace and I am most reminded of the beauty of life AND death, and how it is all interconnected. When life gets overwhelming or confusing, time outside does wonders to reset my perspective.

****, you are AN INSPIRATION! Your story gives me so much hope!! I really appreciate your presence on this forum and all the perspective you can provide as a seasoned elder with a lifetime of experience!!!

Superman, I can imagine your experience at 17! I was 19 for my first OHS, but the times were a bit different and more connected by then, and at least I was out of high school. Seems like things have worked out great for you regardless! I'm sure you surviving your surgery was the best anniversary gift your wife could have hoped for! I'll keep you posted on the July backpacking adventure! Our fur baby is coming along, but our human baby is staying with grandma, otherwise the trip would me more like 3 miles, hahahahah!

Chuck, thank you! I suspect you are right, our mechanical valves will become fossilized somehow and an alien society will uncover them someday and wonder what the hell these devices were for

 

[EMJEF]

Hi Kirsten,

this community has been amazing. I am awaiting a replacement of my current mechanical valve-had this St Jude valve 34 years, since I was 4. Before I found this forum, I was having a really hard time knowing that ‘the call’ was coming soon. Now, although I am still nervous, it has helped me realise it’s much more likely to have a positive outcome. My little boy is 6 at the moment so know that having this surgery will help to ensure I see him grow up and be active in his life. Taking warfarin is a small price to pay.

 

[kvinyeta]

Hi Kirsten,

this community has been amazing. I am awaiting a replacement of my current mechanical valve-had this St Jude valve 34 years, since I was 4. Before I found this forum, I was having a really hard time knowing that ‘the call’ was coming soon. Now, although I am still nervous, it has helped me realise it’s much more likely to have a positive outcome. My little boy is 6 at the moment so know that having this surgery will help to ensure I see him grow up and be active in his life. Taking warfarin is a small price to pay.

HI EMJEF, how amazing that you received a mechanical valve at 4 and it has carried you all this way! By now you are surely very experienced with warfarin! Did you have your son biologically? If so, I am happy to hear you were able to have a baby with the mechanical valve! Sending you all the best wishes for your second surgery. I'm sure it will go great, and that you'll be chasing your 6-year old in no time.

 

[Eva]

Welcome aboard, Kristen. I think of this as a “heaven-sent” forum with great beautiful-hearted and genuinely-caring people!

 

[mecretired]

Amen to what Eva said. This forum has helped me through several panic attacks regarding my heart surgery, warfarin management (my Coumadin clinic) and 2 bouts of endocarditis. Welcome aboard.