Hi Again! (COVID-19 Shelter in place Boredom)

I haven’t posted on here in quite some time. I started this blog originally as a way to process my feelings throughout my heart surgery journey. I blogged leading up my first aortic valve replacement in Nov 2013, to endocarditis infection & complete re-do valve replacement in  March 2014, and the recovery afterwards. I continued to post after a minor (but potentially fatal) clot complication in the fall of 2016.

I still receive emails from folks who find my blog and seek connection while they go through their Valve Replacement OHS experience.

COVID-19 is currently shutting the world down. I live in San Francisco, California, and we are now sheltering in place. Practicing extreme social distancing during this time. I have talked to a few new valvers who have just gone through, or who are planned to go through valve replacement amidst the COVID-19 pandemic.

Sheltering in place place and fear of unknown infection adds additional stress to heart valve replacement (and other congenital heart disease) patients.

I cannot give medical advice, but I can speak from my own experiences. This advice may not apply to everyone who is recovering from valve replacement, but I hope that it can help some.

1. Try your best to follow your rehabilitation program. If you are supposed to be following a physical rehab plan but cannot leave the house, there are options that you can do at home: if you cannot go for walks, look up some home cardio workouts on youtube like this one. There are plenty of exercises that you can do from home that get the heart moving, which you can always do at your own pace.
2. Yoga was a centerpiece of my recovery. Moving on the mat helped with my confidence. It helped me feel less fragile and gain strength after the jarring OHS experience.  If you can’t leave the house, try finding some yoga routines on youtube to follow. For someone right out of the gates of OHS, check out this yoga routine ‘yoga after disaster‘ to calm the mind and body.
3. When I was recovering from heart surgery, having a schedule of activities kept me sane. I would walk to the coffee shop every morning to socialize with friends. Don’t forget to set your alarm, take a shower, drink water, take your medications, and use your mind and body within your limitations. Try to stick to your regular schedule as best you can.
4. Make time to call your loved ones if you are isolated from them. Recovery from OHS can feel lonely and depression is common (I went through it too). Connecting with friends and family will help. Please, do not demand that they understand your situation. When talking with post OHS patients, I see a lot of people frustrated that their friends and family do not understand how they feel. It is true: THEY DO NOT UNDERSTAND. They will not ever understand. In a way, it is unfair to demand that they must understand your situation. INSTEAD: If they try to give you advice or make comments that you feel like are not helpful, tell them politely that you just want to vent and that they do not have to give you a solution. Sometimes all you need is an a friend who will listen.

 

Update for 2018

Hi! It has been quite some time since I posted! No news is good news in the world of heart surgery recovery, right? Since my last post, some significant changes have occurred in my life! For those interested, some updates to my life:

• I have had no significant scares, complications, ER visits, etc., since the little clot event from 2016.
  • Knock on wood.
• I moved to San Francisco in August 2017 to be with my lovely partner, Melanie.
• I love living in the city! It is my first time living in a big city and I’m finally acclimated.
• I got a job teaching Biology & Green Energy at a continuation school in the bay area. I love it there!
• I am still active, but I no longer rock climb. I hit the weight gym often and have recently been doing a bodybuilding program. I’m trying to look good for our Mexico summer vacay!
  • I’ve come to accept that the whole heart surgery thing has made me a bit vain about my body. My drive to remain physically fit has morphed into some body image issues, some good, some not so much.

Cheers!

Anthony

3 Year Valve Anniversary

It has been 1,095 days since my last Aortic Valve Replacement Open Heart Surgery. There have been some scary points since them, like when I discovered that a little blood clot was hanging on my mechanical valve. Or that time when a fellow mechanical valve cyclist friend died from a stroke, also due to clotting issues. Then there’s the recent news of the actor Bill Paxton dying from a stroke soon after his heart surgery. He had the same condition as me (Bicuspid Aortic Valve), and the same or similar surgery. Then there’s the letter I received from my hospital notifying me that a faulty machine was used during my surgeries that could cause a deadly infection up to four years after surgery.

Life is going to always be like this. There will be close calls. There will be risk. There will be scary times. There will always be the possibility of complication.

I recently begun to see a therapist. She’s been helping me identify my anxieties and we have been discovering strategies that have proven useful to me. I was already doing some very helpful things to ease & work through my anxiety: Blogging (journaling), yoga, exercise. I have now begun working a regular meditation practice into my life, which has proven to be phenomenal in my general well being. Check out this video (also embedded below); it is a simple guided meditation video that I have used. Think of it as training wheels for meditation. Sometimes I use guided meditation videos, and sometimes I meditate in silence, or with soothing music. I’m still a beginner in this practice, but this mindful meditation has done worlds to help my anxiety. I also seem to be happier in general, and more pleasant to be around (in my opinion).

I think I have learned a thing or two over the past few years. I am a better, happier person despite the anxieties associated with living with a chronic health condition. I’m no guru, but here ya go anyway.

Here are some lessons that I have learned:

1. Life is short, but (often) only when one realizes this fact do they do something about it. Take chances. Don’t let life happen to you. We are not in control of so many things, so for the things we are in control over; take action! Go for it! Apply for that job across the country if it is calling you! Ask your crush out on a date even if they seem out of your league! Open up to your friends and family. Don’t waste time. If you want something, go get it now. Act now.
2. Be true to yourself. Be honest with who you are. Don’t let societal norms control your life. This comes into play with so many aspects of our individuality. We tend to hide our true selves from the world due to fear of judgement.
3. Live in the moment. Practice mindfulness. This is where yoga and meditation come in to play for me. Depression occurs when we focus too much on the past. Anxiety is when we focus too much on the future. Now is the only time that exists. All that there ever is, is now. Look around. Put your phone away for a bit. Make a friend. Enjoy the day.
4. Relax. You don’t have to make yourself better. You don’t have to go for that promotion. You don’t have to find the meaning of life. If you are kind, mindful, and follow your passions & heart, you will find great joy in life.

Candy’s Heart Journey

Because of my blog, I have been lucky enough to connect and make friends with lots of valve surgery patients, many of whom are preparing for their valve surgery. Meet Candy, also a teacher, rock climber, cyclist, workout nut… also needed valve surgery. She wanted to stay in shape before her surgery, and documented one of her workouts, less than a week prior to open heart surgery. I’m sure there will be recovery workout videos once you get moving again. For now, like most people recovering from heart surgery, Candy is walking and gently riding the stationary bike. Thanks for the inspiration Candy!

Live Fully Now

I’ve been on an Alan Watts kick lately. There are endless YouTube videos of his lectures in which he imparts his wisdom and gift of words upon us. Here is a short (3 minutes) clip of one of his talks where he discusses the importance of living fully now, in this moment.

As heart surgery patients, the reality of our own mortality is thrust upon us. This becomes clear in the days leading up to the surgery. The fear can be crippling. After a successful surgery & recovery, that fear lingers. We are afraid so we worry about potentially dying one day. No amount of worry will prolong the arrival of death! In fact, the stress could possibly make it happen sooner.

I’ve made one mistake over and over, especially after my heart surgeries. Because of this near death experience, I have it in my mind that I need to do something greater with my life. There really isn’t anything wrong with that, except that it has become a desperate and flailing search. By constantly planning or deciding things that I should do to improve my life, I am forgetting to enjoy my life, now. There is no future, only now.

Watch The video below.

 

Echocardiogram Images

I thought it would be cool to share my final echocardiogram results from my recent hospital stay. I took some video of the echo screen. My cardiologist points out the clot, which is small enough here to allow me to be discharged.

Also, notice my mechanical aortic valve shape. My doctor points to it in the 2nd video. It is near the middle of the screen. It is a circle, with a straight line that goes from its 12 o’clock to its 6 o’clock. That line will appear and disappear, which are the bi-leaflets closing. Use the picture of a St. Jude’s mechanical valve below to help identify it in the echo. 

 

 

In screen shot below, I have circled the clot.  It appears as a little white smudge. It was larger when it was first detected last Friday. Try to look for that little smudge in the videos above.

 

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.

I’m 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.

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