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Discharged 

I’m being discharged! The events of today went as follows:

1. Blood work, including INR test. Result: 2.4

2. Cardiologist came in and discussed Coumadin and issues involving it. 

3. My primary cardiologist performed an echocardiogram, discovered that the clot is much smaller than Friday, and discharged me. He felt that even though I’m having trouble getting my INR up to 3.0, that I’m on the right track and I can finish getting to my new range at home. My new INR range is 3.0-3.5

Going home!

Just keep thinning

This is my third night after being admitted for non-obstructive prosthetic valve thrombosis. It has been emotional and frankly pretty scary. Each day I wait as my INR is being raised. While that is happening, heparin, a different anticoagulant is constantly dripping intravenously. 

My girlfriend Michelle has been by my side, and I truly would be lost without her. We are of course looking forward to my INR raising soon, and keeping it above 3.0 consistently. 

The next step, is hoping that the clot is naturally absorbed by the bloodstream. I’m not sure whether or not my Doctor will be checking via echocardiogram for the presence of these clots in the near future. I’ll be asking that question tomorrow. 

If you are reading this, and also find yourself in a similar situation, or you’re concerned about it because you also have a prosthetic valve, I found the following study to be very informative:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1861363/#!po=19.1667

narcopiggy says, “make blood thin!”

Clot

On Wednesday October 12, while driving to work, the vision in my left eye slowly began to black out. It seemed as though dark clouds were forming around the center of my view. I pulled over and within 3 minutes of when it started, my vision was almost all gone in that eye, with a small pinhole in the center. Then, it started to get better and in a total of 5 minutes, my vision was completely back.
After consulting my nurse friends, I excused myself from work and drove myself to the ER, which was absolutely useless. Loma Linda ER is a trauma center, and during the 13 hours I spent there, it took 8 hours to get a bed, 10 hours to see a doctor, and the only tests they did was blood tests and an eye exam. They did not feel that it was necessary to look at my heart. This is the 2nd time in my life that the Loma Linda University Emergency Room overlooked my condition. The first time was back in 2014 when they were unable to notice that my newly implanted valve was infected and falling off. This time, if they were able to simply perform an echo on me, then they would have noticed what is going on currently.

Today I went in for an echocardiogram with my cardiologist. I was an emotional wreck. My biggest fear was that I had endocarditis again. It turns out that I have some tiny fibrous blood clots on my mechanical aortic valve. One of these tiny clots dislodged and briefly clogged the blood flow to my eye. The condition is called Amaurosis Fugax.
My anticoagulation therapy is Coumadin. Without the Coumadin, clots form on the rigid edges of my mechanical valve. My INR (how ‘thin’ my blood is) was supposed to be between 2.0-2.5. A normal person who isn’t on anticoagulation therapy will have an INR of 1.0. The day of my episode, my INR was 1.8. This means that clots were more likely to form. I missed a dose of Coumadin on Monday, which means my INR was probably below 1.8 then. These clots could have formed then. There’s no way to know though.

Endocarditis can cause Amaurosis Fugax, as can blood clots. Luckily, the clots are very tiny. Even if the clots that are currently in my heart were to dislodge, they would not cause serious damage, such as a stroke. The goal is to keep them from getting larger.

I was just admitted to the cardiac unit at the hospital. I will stay here for a few days to be given heparin while my Coumadin dose is increased. Heparin will keep the clots from getting larger and stop new clots from forming. My INR will be increased to 3.0 and I will now try to maintain that level at home from now on.

They are doing a blood culture to be 100% certain that it’s not an infection again (Endocarditis). They said that bacterial vegetations don’t normally form on the valve leaflets like how it appears in my echo, but since I’m here, and because of my history of endocarditis, they want to be sure. At this point I’m not worried.

I will hopefully be discharged this weekend. I am super disappointed that I will be missing two amazing concerts that I was planning on going to this weekend. As my friend told me,

“There’s a lot of magical stuff goin on in the world. Concerts and Music festivals are like condensed reminders of the beauty, engagement, and interconnectedness that is possible for humanity.”

Check them out the artists that I was going to see this weekend below:

How To Dress Well and Moses Sumney.

Camp Del Corazon (3rd Summer)

This was my 3rd summer in a row volunteering at Camp Del Corazon, AKA the (REAL) Happiest Place on Earth! Since camp has just ended, that means we must begin to raise money for next year! Please click the link below to donate. If you need any convincing (and would like to see a cameo by yours truly), please watch the promo video below. I know, it pulls on your heartstrings a bit.

DONATE: http://www.firstgiving.com/fundraiser/AnthonyDiLemme/CDCfamfest2016

From the Camp Website: Camp del Corazon is an organization that provides a medically supervised, residential summer camp for children ages 7-17 who are living with heart disease, as well as additional programs for these children and their families.Located on Catalina Island, 22 miles off the California coastline, our camp has served approximately 300 children each year since 1995. Having begun with a volunteer staff of two, 49 campers and a minimal budget, our growth and success stands as a testament to our steady commitment to the population we serve.

 

Since I cannot show images of campers, I really only have two images to share from camp. I do believe that these images show a sliver of what it is like being a counselor at Camp del Corazon. Thanks for donating! ❤ Anthony a.k.a. GOAT

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Draw me like one of your French Girls

Someone told me about this iPhone app called “French Girls” where you can upload selfies of yourself and commission artists to draw them for you! amateurs can do it for free, but the best artists will charge a commission. For 20 bucks, pixelprincess (on French Girls) aka @pixelprincess.art (on Instagram) drew this awesome rendition of a selfie that I took of myself back in December 2013, only a few weeks after my first open heart surgery. I think she captured my mood. I love it!

Camp Del Corazon

I would like to show you something that is one of the most important things in my life.

Camp del Corazon – “On the Island” from D. Russell on Vimeo.

Camp Del Corazon is a summer camp for children with congenital heart disease (CHD) on Catalina Island. Every year for the past 21 years, kids with heart disease have been attending this summer camp. The counselors at camp spend come from all walks of life: Doctors, nurses, medics, teachers, waiters, actors, musicians, you name it. Many counselors, like me, also suffer from congenital heart disease, some of which attended camp as campers and are now all grown up.

Camp is fully funded by donations and fundraising campaigns. EVERY CHILD that attends camp, goes for FREE, thanks to generous donations. At CDC, campers learn that they are strong, and capable of doing anything. They become confident despite their condition, and discover courage and friendship.

Please consider donating to Camp Del Corazon HERE.

This was my second year volunteering for Camp Del Corazon. Last year, I volunteered as a counselor only 5 months after my 2nd open heart surgery. Camp gave me a sense of belonging, just as it does for the children. I immediately became part of something bigger; a family of people who care. At camp, there are only good people. It is impossible to fully articulate how amazing and important Camp Del Corazon is, for so many children with CHDs.

If there is a place in your heart for a person who grew up with Congenital Heart Disease… If you suffer from heart disease… If you know someone who has a child with CHD… Please watch the short video below to peer inside camp and discover how truly important it is. Then, please consider donating to Camp Del Corazon HERE.

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Super silly at the rockwall

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yes, me in a Giraffe costume, walking the highline.

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The view from camp

All I Could Think of was You

Free thought musings…

When our lives are threatened, we often think about our loved ones before we think of ourselves. How fleeting is life, but also, love can be fleeting too.

all i could think ofWhen my mortality was in question, and I went into emergency open heart surgery aortic valve replacement redo, I felt myself desperately clinging emotionally to my partner.

My future was unknown. I might not wake up after the procedure. I might be gone in six months. I don’t know what will happen.

When the heart is sick, love becomes more important. Desperately vital.

The word I keep thinking of is desperate.

Recovery comes and goes. There is an urgency to life. There is an urgency to everything. The mind is clouded with this urgent feeling. I must accomplish something before I die.

I must leave the world better than I found it, but do I have the time?

We must relax, do not fear death, do not rush through life, do not be hasty, let love come and let love go.

Hopefully we are always improving ourselves, however your heart surgery does not define who you are.