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Good news today. I was worried I would never be able to get more ink💉my doctor told me I can get all the tattoos I want after my valve settles in which takes about 90 days. Gonna go see @andrewozimek and the good people over @scotthilltattoo for my CHD awareness tattoo, I suggest you do the same. 💪🏻👊🏻

Малиновото ни вино е в добри ръце.🍷Благодарим сърдечно на @dobro.hrumvane.vet.clinics 💕, BAVD - Bulgarian Association of Veterinary Dermatology и д-р Себастиан Вио за срещата по време на Iви Конгрес по Ветеринарна Дерматология.

That there is my aortic valve. 2 of the 3 flaps fused with moderate back flow/regurgitation back into my heart. The upper left and right flaps in the image are fused. #healthyheart #BAVD #bicuspidvalve #echo #echocardiogram #disease #regurgitation #runner #heart #health

Time for my Stress Test! This should be fun and expensive! 😬 #stresstest #stress #heart #healthyheart #BAVD

A. Normal aortic media. B. BAV aortic media associated with degraded elastic lamellae and increased risk of aneurysm and dissection. The mechanism of this isn't well understood but the aortic valve and aorta form from the same group of embryonic cells. #heart #health #cardiology #aorticstenosis #aorticregurgitation #bavd #bav #congenitalheartdefects #zipperclub

MOST RECENT

Lucia had a good cardiology check up last week! I almost forgot to post about it which I take as a good sign that the these appointments are feeling less scary. I was still a bit nervous before, but overall I’m trying to view them like a regular well child or dental visits - just routine and normal. • As for Lucia’s heart, the bicuspid aortic valve is still functioning well and while the PFO/ASD hasn’t closed like we’d hoped, it still could and currently isn’t causing any problems. The best part is that she doesn’t have to go back for a year!

A little rain couldn’t keep these happy hearts from walking to raise CHD awareness! Today we joined our local CHD community for the Congenital Heart Walk. I am grateful to my sister and her family for joining us, and it was so meaningful to be with other CHD families. Thank you #AdultCongenitalHeartAssociation and #TheChildrensHeartFoundation for this wonderful event!

Three months old!

Between meds and supplements these doctors are killing me. I have a dr appointment every day this week. Went to dr today they have been treating my pericardial rub for a month now and it hasn't gotten any better. My blood pressure was thru the roof so they tripled my beta blockers from 50 to 150mg per day. I feel drained I'm supposed to leave on vacation soon and now I am wondering if it's such a good idea.

As a mama of kids with CHDs I see their illnesses and injuries in such a different way than before Will was diagnosed. While managing my stress regarding their hearts is hard, overall my stress for day to day bumps and bruises is low and since Will's OHS my tolerance for blood and medical procedures in general is much higher. I also know just how strong and resilient these little people are which gives me hope even when it feels scary. • On Saturday Will had a tumble from a stool and hit his mouth on the corner of a table. After calming him and sopping up the blood I immediately thought of endocarditis, inflammation of the inner layer of the heart which can happen if bacteria is introduced through the blood steam. An easy way for this to happen is during dental work/disruption to the gums. • After the accident happened we emailed our wonderful pediatrician who got back to us right away, yes on a Saturday, and said that the banged up gums would warrant taking an antibiotic. Luckily we already had a prescription for the preventive antibiotic and I was able to give it to him that day. Yesterday he got in to the dentist who thankfully doesn't think any damage was done to his teeth. He just has some seriously banged up gums. 😫

Good news today. I was worried I would never be able to get more ink💉my doctor told me I can get all the tattoos I want after my valve settles in which takes about 90 days. Gonna go see @andrewozimek and the good people over @scotthilltattoo for my CHD awareness tattoo, I suggest you do the same. 💪🏻👊🏻

Yet it receives half the funding. October 1st is the awareness walk in NJ please join us, volunteer, donate. Link to the @chd_coalition in my bio check out all the hard work and love these volunteers give. One day you might be a heart mom/dad warrior/angel

Phase 2 of my cardiac rehab it's about time I can't sit around on my ass any longer time to get in the gym and see what this new heart can do 👊🏻

Lucia will be eight weeks old tomorrow! I had so much fun taking these pictures a few days ago. I got a sneak peek at the professional ones done when she was 12 days old and was inspired.

Good morning i hope you have a happy day. I'll be here stuck in my house if you need anything 😕

Not only did this rockstar surgeon save my life with minimally invasive heart surgery but he purposely saved my tattoo thank you Dr Anderson @hackensackumc @joseecd @lastritestattoo @paulbooth

8 day average stay I'm out in 3. They said a year of rehab screw that I'll be grounding and pounding in six months 👊🏻👍🏻

Top is my diseased aortic valve , bottom is the new cow valve. Amazing what these doctors can do!

Oxygen is off all my tubes are out another day or two and I'm outta here as long as I keep progressing then we start the rehab

Round one was 6 hours and it hurt me bad, but I made it and I live to fight tomorrow. To all my family and friends I love you.

Weakness compels strength! If your going through hell keep going. Accept the reality and embrace the pain, but keep going. Fight hard thats how you survive, and God willing you'll come out stronger than you were before. This next part is out of my hands but when I wake up Ill be ready for a fight 👊🏻

Our first trip as a family of four was a blast! We spent a few days at the sunny windy beach. The change of pace was welcome after learning about Lucia's CHD.

As a parent to kids with CHDs I love hearing the perspectives of adult CHD survivors. Kelsie @heart.full.of.health has a great Instagram feed and blog. Her recent post is all about traveling with a CHD which I find inspiring and helpful. • #Repost @heart.full.of.health (@get_repost)
・・・
New blog post up this morning! I'm sharing my 10 travel tips for traveling with a Congenital Heart Defect and a pacemaker! Click the link in my bio to read and share!

So it dawned on me while laying awake in the middle of the night, mind racing and trying to understand this new diagnosis, @heartwarriorwill needs to evolve 😩 So here we are: @heartwarriors.will.and.lucia

This heart warrior is one month old! Last week we finally got the images we needed and Lucia was diagnosed with a CHD. While this is not the news I wanted I am grateful to finally have some answers. • The latest echo confirmed that she has a bicuspid aortic valve. It also turns out that she has a Patent Foramen Ovale (PFO). I hadn't heard of PFO, which is similar to a PDA, and essentially means that the normal hole between the atria that is present in all babies before birth didn't close when she was born. It's similar to an ASD but smaller and still has a chance of closing. • On the bright side, her heart function is good and she will just be monitored for now. Her next appointment will be in three months. Additionally, my husband and I will need echos because bicuspid aortic valves are often inherited. While I definitely knew this diagnosis was a possibility, and was more prepared for the news than I was when Will was diagnosed, I'm slowly processing a range of emotions. It seems our CHD journey is just getting started.

Малиновото ни вино е в добри ръце.🍷Благодарим сърдечно на @dobro.hrumvane.vet.clinics 💕, BAVD - Bulgarian Association of Veterinary Dermatology и д-р Себастиан Вио за срещата по време на Iви Конгрес по Ветеринарна Дерматология.

It was a year ago today that I got this scar. I had open heart surgery to fix a congenital birth defect. I'm a lucky guy. My surgery went well. My family and friends stuck by me. Grandma nursed me back to health. Thanks be to God for this year!
#heartpatient #scar #bavd #jankheart #chest #hairyschest #scruff #front camera #iwokeuplikethis #gay #gaycub #taken #hairygay #scruffygay #oneyear #bubbasmithlives #theboywholived

Transarterial valve replacement (TAVR) (expanding a replacement valve by fishing a catheter through the arteries to the heart from a small access point in the leg) is not a standard option for most BAV patients. There are many issues and for now TAVR for BAV is reserved for high risk surgical patients. Although more clinical trials are needed for TAVR to become a standard option, in current TAVR studies for lower risk patients, BAV remains an exclusion criterion. #bav #bavd #fishmouthdeformity #systole #diastole #tavi #tavr #heart #cardiac #health #cardiology #congenitalheartdefect #bicuspidaorticvalve #aorticdissection #aorticregurgitation #aorticinsufficiency #aorta #aortopathy #edwardslifesciences #research #innovation

This beautiful baby boy is my #strength. He's my world. My life. Whenever I've felt like giving up, I just look this little peanut in the eyes and all sadness goes away. He's my biggest motivator in this life. #1in100 #chdweek #chdawareness #BAVD #bicuspidaorticvalve

I'm a proud #heartmom to the most handsome #heartwarrior. I was so scared when they told me my son had #BAVD and have suffered from a lot of #depression surrounding his #diagnosis but I see now that my son is just fine! Things are looking great. He's growing normal. Doctors even say as long as his #aorticstenosis doesn't get too bad, he could even play sports when he's older! I wouldn't trade the opportunity to be a heart mom for the world. It's changed my whole life and I love that little boy more than anything in this world. #1in100 #chdweek #chdawareness

#siblings photo. Benji has two half brothers. I don't have any pictures of my stepson but here is Benji's other half brother, Ryan. Since #BAVD has a tendency to be genetic, doctors want dad and I to get tested and see if one of us have it. If I do, this little guy (who isn't so little anymore, he'll be 9 in September!) will need tested too. This is my #birthson he is #adopted but still the love of my life! #1in100 #chdweek #chdawareness #heartwarrior

This is my #Surgery/#meds photo. Peanut hasn't had open heart surgery but he did require a #heartcatheterization at the ripe age of 2 months old to deal with his severe #aorticstenosis caused by his #bicuspidaorticvalve #BAVD #1in100 #chdweek #chdawareness #heartwarrior #balloonvalvuloplasty

Totally forgot to post these so here goes. This is gonna be my #diagnosis picture because peanut was diagnosed at birth. He had a heart murmur. Took him back for an #echocardiogram and found he has a #bicuspidaorticvalve #BAVD and #aorticstenosis. Here him & I are the day he was born. 💕 mommy loves her little #heartwarrior #1in100 #chdweek #chdawareness

Cartoon of the ultrasound video 4 posts back. Note the "domed" BAV during systole and eccentric closure line during diastole. #bav #bavd #domed #heart #cardiac #health #raphe #systole #diastole #fishmouthdeformity #valve #leaflets #bicuspidaorticvalve #tavr #tavi

This little peanut is up to 10lbs3oz. That means he's gained 1lb and 11oz since his #balloonvalvuloplasty on Dec. 28! We saw the cardiologist today, everything looks PERFECT. The #heartcatheterization did exactly what we needed and helped bring his #aorticstenosis down to the mild range, where it seems to be staying for now. We don't have to go back for 6 more months! Mommas so proud of you my little #superman. #BAVD #CHD #congenitalheartdefect #bicuspidaorticvalve #36weeker #latetermpreemie

Approximately 2/3 of people with BAV will never require surgical valve replacement. Michaelena et al., Circulation 2008;117 :2776-2784. #bav #bavd #surgery #valvereplacement #tavi #tavr #valves #medicine #bicuspidaorticvalve #cardiac #health #systole #diastole #raphe #fishmouthdeformity

BAV stenosis is the most common reason for valve replacement in patients <70 years old. #bav #bavd #aorticvalve #aorticvalvereplacement #aorticstenosis #age #cardiac #health #medicine #valves #tavr #tavi #surgery

Last one. Blue shows flow towards transducer and red away. BAV is valve on left, above is left ventricle and below is aorta. #bicuspidaorticvalve #bav #bavd #aorticdilation #aorticregurgitation #aorticaneurysm #aorticinsufficiency #heart #health #echo #cardiac

More views from the valve. BAV is top right. Typically, when a normal tricuspid valve opens during systole (when the left ventricle contracts- left ventricle is on left side of image), the valve leaflets open to the aortic wall on this view. But, in people with BAV, typically the leaflets don't go all the way to the aortic wall and create a "dome" appearance when the valve is open. See 4 posts ahead for a cartoon of this view. #bav #bavd #heart #health #echo #aorticstenosis #aorticregurgitation #aorticinsufficiency #aorticdilation #aorticaneurysm #bicuspidaorticvalve

I thought I'd share my latest echo. No stenosis and trivial regurgitation. 💪🏼❤️ (for now). Try to pick up the raphe top right in image marking the fusion of the right and left coronary cusps and the fish mouth appearance when open (video cover image). View from above in aorta looking down at BAV with left ventricle "behind" the screen. #bav #bavd #heart #health #raphe #tavi #tavr #ascendingaorta #ascendingaortareplacement #aorticdissection #zipperclub #aorticstenosis #aorticregurgitation #aorticinsufficiency #aorticdilation #aorticaneurysm #congenitalheartdefect #fishmouthdeformity

Time for my Stress Test! This should be fun and expensive! 😬 #stresstest #stress #heart #healthyheart #BAVD

BAV is about more than the aortic valve. Aortic dissection can be hard to visualize but often a transverse tear can spontaneously happen (not well understood what causes this event but likely a progressive weakening of the intimal layer). Blood can then enter and separate (dissect) the layers of the wall typically between the inner 2/3 and outer 1/3 and create a false pathway for blood to travel. Clinically this typically feels like an acute tearing pain not uncommonly mistaken as a heart attack. Progression to full wall rupture is the outcome to avoid with emergency surgical reconstruction of the ascending aorta. Patients with BAV are at greater risk of aortic dissection because of associated abnormalities with ascending aorta wall. It is important to monitor any progressing dilation or aneurysms of the aorta. #bav #bavd #research #tavr #tavi #aorticdissection #aorta #aorticaneurysm #ascendingaorta #ascendingaortareplacement #heart #health #cardiology #zipperclub #zipperclubmember

Random video idea for YouTube. Idk what I was doing, but I had fun with it. That's what you do when bored in a hotel. 😂❤️ #YouTube #Channel #jlh1290 #film #filming #video #Christiansburg #holidayinn #bored #boredom #heartvideo #bavd #healthyheart #funstuff #macbook #2015macbook #apple #iMovie

It's that time again 👯👯👯👯 wk3 #BAVD #vivalaveese #Fckitupppppp

BAV patients with no significant valve dysfunction can expect to live as long as people with normal tricuspid aortic valves. Dashed line is BAV patients with no significant aortic valve dysfunction and solid line is age/sex matched control population. Michelena et al., Circulation 2008; 117:2776-84. #bav #bavd #aorticvalve #aorticvalvereplacement #aorticstenosis #aorticregurgitation #zipperclub #openheartsurgery #mechanicalvalve #biologicalvalve #aorticrupture #heart #valve #aorta #aorticdissection #tavi #tavr #research

That there is my aortic valve. 2 of the 3 flaps fused with moderate back flow/regurgitation back into my heart. The upper left and right flaps in the image are fused. #healthyheart #BAVD #bicuspidvalve #echo #echocardiogram #disease #regurgitation #runner #heart #health

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