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!

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Steph & Marfan Syndrome (Guest Post)

Steph emailed me a few months ago after she stumbled upon my blog during her research while preparing for heart surgery. She was thankful to find my story which helped prepare her for her surgery. Before and after her surgery, we had a few phone conversations and lots of texts. Recently, I encouraged her to write a guest blog post if it would help her in any way. She is an excellent writer, and a super nice person who is thankful and happy with life, yet struggles with the difficulties of living with heart disease (and Marfan Syndrome). Please take a read. Thank you Steph!- Anthony

I feel my heart pounding through my chest and I wonder is this the last time? Will I experience this sensation forever? This feeling is not pleasant at all. As the beat gets stronger, my pulse begins to thump in my ears. My mind starts to wonder; will my heart ever have a steady beat?

These are the thoughts that raced through my mind since the age of 7. As I take you on this journey of living life with Marfan Syndrome; there will be some pain, anger, joy, happiness, and sorrow, yet most of all there will be the strength of a warrior.

Marfan Syndrome is a rare connective tissue disorder. An individual could be diagnosed at any age. Luckily for me, I was diagnosed from the moment I was born. The doctors looked at my long skinny fingers, listened to my pounding heart beat and knew that this life of mine would be an adventure of battles and successes. In synopsis, by the time I was diagnosed there was not a lot known about Marfan, but there was enough to keep me going at a healthy pace. You see, Marfan Syndrome does not just affect the heart, but it affects the whole skeletal structure, which can lead to scoliosis, it affects the eyes, leading to retinal detachments and lens dislocations, complications can arise with the lungs, it affects the rate of growth and the amount of weight that is possible to be gained. Marfan Syndrome does not have to be within the family heritage; it is a gene mutation within fibrillin1 gene with the mutation of chromosome 15 and I am one of the rare cases who was the spontaneous gene mutation within my family. Though I faced my struggles with accepting each aspect of having Marfan, the endless hospital visits, the countless surgeries one after the other, and the lifetime medication. I can not lie and say I never felt that it was unfair or that I never became angry, but I can say that I always held my ground and knew I was lucky. Lucky to have a family that supported me, doctors who knew what to do, and friends that believed me in. Although, life with Marfan does not only affect one physically, but it takes an emotional toll as well. Some people do not realize growing up with a chronic illness could be challenging because there are times one may feel misunderstood and alone. There are times where a person may wonder what he/she did and why this is happening. As I embraced these experiences throughout life, there was the ultimate concern and worry I always carried around with me. When will I have open heart surgery to prevent more damage to my heart; when will I feel a normal heart beat?

Diagnosis of my heart: Aortic Aneurysm, Mitral Regurgitation and Mitral Valve Prolapse. In simple terms, my aorta was enlarged (4.6 cm) and the chances of dissection and bleeding out is when the aorta reaches (5.0cm) is increased.

I spent 23 years visiting the cardiologist with the wonder, “would this be the year he says I need surgery?” Yet, little to my surprise every year was an answer of “your heart is stable, so we do not want to go in too soon.” By the time I was ready to graduate from college, I begged and pleaded to have the surgery before I moved from the East to the West Coast to attend graduate school. My cardiologist was adamant that I did not need surgery yet and there was a high chance of me actually never needing the heart surgery. So, there I was trying to understand how from the age of 7 years old I used my birthday wishes for my heart to be healed, by a teen I realized it was not my choice, and now here I am an adult hearing that I may not need the surgery-yet will be able to live with the complications? See, one may feel happy from that news; yet my complications also created rhythmic issues, such as Atrial Fibrillation and Ventricular Tachycardia. This caused my heart rate to increase drastically at any moment of the day and one of the main correlations to the problem was the mitral valve.

20160625_175412Yet, I continued on with my life and moved to start graduate school. Naturally I knew that I would need a new cardiologist and went to Stanford Hospital because they have an entire clinic dedicated to Marfan Syndrome, which I found to be pretty amazing. I will never forget my first visit; my nerves shaking, my mind rushing with thoughts, seeing a new cardiologist after all these years; terrified me. He was warm and confident in his words, I knew that I made the right choice, though the news I heard that day changed my life forever. After completing an echo, which measures my aorta and tracks the leakage in my mitral valve and said the words “You will need surgery within the next year or so, your aorta is 4.6cm not 4.2cm and the mitral valve leakage is severe.” I could feel my heart sink into the pit of my stomach, here I was just accepting the thought of never having the surgery and now I am being told that I have to decide when is the best time to have the surgery. Tears flowed from my eyes as I suddenly felt overwhelmed with hope and fear. All my emotions were stirring around my mind as I knew that this upcoming year would be the best time to have the surgery.

Fast forward; here I am, 24 years old and just finished my first year of graduate school in California. My family flew down from New Jersey and we were going into this battle one way or another. The surgery was scheduled for June 27th at 8am and the week before I could feel my life changing. I wondered if the surgery was going to work, I thought about death, I thought about life, and most of all I thought about my loved ones. Prior to scheduling the surgery, my surgeon reassured me that my leaflets (the part of my mitral valve) could be repaired and that I would not need a mechanical valve. Honestly though, I know my body and it never plays by the rules; so I asked what would be the backup plan if it was unrepairable using my own tissue. He told me that I had the choice of using a mechanical valve or a prosthetic valve, yet proceeded to tell me that it would not be needed because everything looked perfectly healthy and could be repaired.

So, there I was two days before the surgery with my family. We went sight seeing and attempted to push our fears deep below the surface until I received the phone call from my surgeon; he explained the co-surgeon on my case reviewed my echo and saw more damage to my mitral valve than expected. I held my breath as he spoke and the words that I was most terrified of hearing were finally said; “I need you to make a decision of having a mechanical or prosthetic valve because it does not appear that he could save your own tissue.” I could feel my whole body shaking and the anger boiling in my veins, I thought to myself can I not just just have a smooth surgery; but I calmly asked for some time to think about my decision and ended the phone call. During this time, I was in the car with my brother and sister in law, sitting there in pure silence and my brother tried to reassure me, yet again tears flowed down my eyes as I could feel my fear continue to rise. By the time I came home, I frantically researched pros and cons of each valve and based on the surgeon’s opinion a prosthetic valve would not last more than 3 years in my heart and I knew there was no chance I could face this surgery twice. After consulting and great advice from Anthony, I made up my mind on having the mechanical valve.

The day finally arrived as my family and I walked into Stanford Hospital, silence crept around us as the fear vibrated off of our skin. We all had teary eyes, yet did the best to smile and believe everything was going to work out for the best. The time seemed to be going by quickly as I registered and the next minute I was taken back by a nurse to get prepared for surgery. There were only two people allowed to see me at a time, so my parents took turns with my brother and sister in law. As I waited I saw the co-surgeon for the first time to confirm my decision and I told him to go mechanical and that meant for both valves. If one could not be saved I wanted to have them both be mechanical to be done with this journey once and for all. As my parents looked at me, I suddenly felt all of my emotions freeze over. I could not cry anymore, I did not feel the fear, nor did I panic. Possibly because I asked for medication to help me relax before I went into the operating room. As we said I loved you and they rolled me off to the operating room, I did my best to fight against the medicine due to my panic of falling asleep. I told the anesthesiologist that I have been waiting for this surgery since the age of 7 and asked her to make sure they fix my heart. Proceeding this request, I started to ask about how she got into the field and what she liked about the job, I then looked to my left and saw the other anesthesiologist working on an IV line in my left wrist and asked if I should stop talking. This whole process was terrifying to me and the only way I was coping was by trying to distract myself from my own thoughts, I almost wished that time would just stop for me. Soon enough I had the oxygen mask put on me and I took three deep breaths and fell asleep.

For 11 hours the surgeons operated and poured their energy into healing my heart. Two hours after being transferred to the Intensive Care Unit, I slowly began to wake up from the anesthesia and could feel the breathing tube in my throat. My thoughts moving at a sluggish pace, knowing I could not speak; I steadily raised my arm and struggled to wave my hand. I heard the nurses saying my name, telling me to keep my eyes open and stay awake or they can not take out the tube. Probably a few seconds passed by as I closed my eyes again and slowly reopened them. Every fiber within my body was fighting to stay awake and keep my mind calm. Every thought that I had before surgery seemed to slip my mind as I laid there with the nurses reassuring me that I am fine and my heart is healed. The night seemed to drag on endlessly as I woke up in pain every half hour, but tears did not fall from my eyes this time. Instead I asked consistently if my heart was fixed and with the great patience the nurses had they reassured me that my aorta was replaced with a graft material, which is called the Tirone David-V Stanford modification procedure and that my mitral valve does not have any more leaks due to a repair with a 30 mm CarboMedic ring and needle cords. In other terms, my heart beat is finally “normal” as I heard these words, I could not help but repeat myself and ask are you sure? At that moment I did not know if I was terrified of the chest tubes and central lines or if my heart would not react well to the surgery and the corrections would slip away from me. After 5 days of being in the ICU, I was moved to a step down unit to start my physical therapy.

My hospital stay consisted of eight days; it was the most traumatizing and insightful eight days that I have ever experienced in my life. Everyday my parents were by my side and I could feel the love radiate from them and at that time, it is exactly what kept me going. There were moments where the pain would take over and I thought to myself “how am I ever going to survive this?” Yet, I kept moving forward, every physical therapy that was given to me; I did not deny it; I did not fight it; I pushed myself and participated because I knew that was the only way I was going to get out of the hospital. On the day of being discharged, I remember feeling this deep gut wrenching fear of being so far away from the medical staff, yet at the same time I wanted to run out of the hospital and feel the sun on my skin. I was home for three weeks when all seemed to be going well. Of course there were the days where I felt completely defeated as my energy was low, but the one thought that kept me motivated was that “after all these years, here I am with my heart beating a steady beat.” Then the unexpected happened and I broke out in a fever of 101.5 with sharp shooting pain on the left side of my chest. I could not lay down, I could not lay on my side, but most of all I could not breathe.

So, here I was three weeks out of surgery and I felt as if my heart was going to explode and the panic took over my mind. My mother calmly called the on-call surgeon and he said to come to Stanford right away. As we drove to the hospital all I could think was “why is this happening to me, why can I not get a break, why for once can I just not have a smooth recovery?” These thoughts circled my mind as we arrived and waited in the emergency room. I could not help myself, but cry. There was no holding back my tears; every emotion I felt was displayed to the waiting room and quite frankly I did not care. I was going to cope with the way I knew best and that was to experience every emotion regardless how terrified I was; I was letting myself feel and that was all I could ask of myself. As the nurses prepped me for blood work, IVs, EKGs, echocardiograms, all I could do was cry and there was no calming me down because I wanted my surgeon. I wanted security in someone who knew my case, I wanted to feel safe. Unfortunately, he was away for the weekend, but his team was there and I knew they were doing their best. The chest X-ray showed that my left lung was filled with fluid and that I had inflammation around my heart. I was kept overnight for observation of an “infection” and regardless of what painkillers they gave me, the pain stayed and was throbbing to the point where I tossed and turned all night.

In time the morning came and I saw the team, they gave two hypotheses for what could be happening; the first was a “type B dissection that could happen in Marfan patients and the second was pneumonia” I could feel my heart sink into my stomach and asked what he meant by a dissection. The whole purpose of this surgery was to prevent a dissection and I was told repeatedly that it was fixed. Yet, the tricky part is with Marfan no one truly knows what the body will do. There are complications from connective tissue disorders that could arise at any moment and there I lay hoping it was not the case. The tests were endless to rule out what was happening to me, CT scans, X-rays, blood work, but the most painful part of everything was knowing that the doctors did not completely understand what was happening with my heart.

There I was in the hospital again fighting for my life to just feel “settled”, I did not need everything to be perfect; I just wanted my heart to be settled and calm. The next 72 hours were a waiting game. Numerous doctors came in and gave their explanation for what may be happening. Some thought that I would need to go back in for surgery and have fluid drained. Imagine hearing that? Obviously it did not go over well with me. These were assumptions, guesses, nothing was certain and it was breaking me down in fear. In time my mom finally called my cardiologist and told him I was back in the hospital. Minutes later I saw him walking in the room and I had tears of joy spill from my eyes. I knew I would get answers at last. The timing was perfect, as he walked in on a tech doing an echo and right away my cardiologist saw the problem. I had pericarditis, an inflammation around the heart and slight fluid as well. I looked at him not understanding a word of what that meant for me. All I could say was, “does this mean I have to go back under the knife?” I never even expected myself to say a phrase like that, but the words seem to fit at the time. He smiled at me and to the grace of God, he told me “no it does not mean you need surgery, but you do have an infection around your heart; which explains the pain, so you will need antibiotics and motrin.” Part of me was so relieved that I did not know how to respond besides repeatedly saying thank you and then I thought about how life is going to remain unpredictable whether my heart is healed or not. This was a fact that I was going to have to accept and learn to live with. Of course, I was not looking for my life to be planned out perfectly after my surgery, but I hoped for some peace of mind.

After three days of waiting and wondering what was happening, the answers finally led to controlling my pain and I was allowed to go home. Leaving the hospital this time brought more fear than the first time because I wondered what would happen next. Though I knew I could not live my life in fear, I was not going to try and hide every emotion I was feeling. In all honesty this experience has been one of the most blessing times I could have ever asked for. I finally received my desire of having my heart fixed and being able to live my life. Yet I know it does not stop there, the road to recovery is a long process and there may be bumps in the road that I do not expect, but my journey has just begun. For all of those who have experienced having open heart surgery or any other surgery, you know how challenging the process could be. Although, if it is one lesson I will carry with me forever since this time, is to love a lot, forgive those who hurt you, take the paths in life you want, and most of all go through every emotion you feel because this world was not meant to be easy, but it was meant to build warriors.

Please feel free to learn more about Marfan Syndrome via Marfan.org and e-mail me with any questions you may have at Steph.Randazzo@yahoo.com

Spreading awareness to Marfan Syndrome may save a life and help inform those who are unaware of this rare connective tissue disorder.

Sincerely,

Steph❤

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Kintsugi: The Art of Embracing Damage

A new fellow valve replacement surgery friend (“Valver” as we say) emailed me to tell his similar story to me. One thing he said stuck out to me, and reminded me of something that I have thought about quite a bit, but never wrote about here. He wrote,

I think of myself as an analogy…I feel like a broken plate that’s been glued back together…in one piece, but it won’t take much to break me again.”

kintsugiThis describes Kintsugi (or kintsukuroi), the Japanese art of repairing broken pottery with lacquer dusted or mixed with powdered gold, silver, or platinum. As a philosophy it treats breakage and repair as part of the history of an object, rather than something to disguise. What my new friend doesn’t realize, is that although he feels fragile now (he is still only 5 months post op), when the lacquer dries, he will feel more beautiful, and stronger than before. I can speak to this from experience. The speed and volume of personal and emotional growth that I have experienced since my heart surgeries has been incredible. I am a better, kinder, more honest person now, because this experience has unlocked something that was laying dormant inside me.

Please watch this very informative and poetic explanation of what Kintsugi is. When I watch this video, it brings me to tears because for someone who has been through a traumatic experience such as open heart surgery, Kintsugi is more than an analogy.

Some quotes from the video:

The art of Kintsugi became famous for turning broken objects into pieces more beautiful than the original product.

The fractures on a ceramic bowl don’t represent the end of that object’s life, but rather an essential moment in its history. The flaws in its shape aren’t hidden from inspection, but emblazoned with golden significance. 

The pristine is less beautiful than the broken. 

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Bob’s Aortic Adventure

At this point in my own recovery, I have less to say and I say it less often (which is a tremendous current state of affairs if you ask me), so now my role is connecting with others who are going through, at various stages, their own valve replacement sagas. Bob is one of those people who somehow found my blog, connected with me via email before his surgery, and is now recovering (and blogging about) his own aortic valve replacement procedure. 


Like me, Bob moved from the east side to the west(ish) side. Bob is also a climber, and a very proficient trad climber at that. And like me, Bob has a mechanical aortic valve prosthesis. Like me, he has to navigate things like rock climbing while on anticoagulation therapy, and hiking up mountains with a body recovering from open heart surgery.

Bob is telling is story, like I told mine, like so many people these days choose to do after major surgery/ traumatic event. Doing so gives us power, knowledge, solidarity, and new friends.

Bob invited me on a climbing adventure some time next summer. I keep telling myself I’m going to start training for that…

Here is Bob’s Aortic Adventure Blog!

http://myaorticadventure.blogspot.com

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Wall Steet Journal Article on OHS Recovery

The Wall Street Journal found out about me and my blog through the American Heart Association Heart Valve ambassador program and Support Network. They wanted to include bits about my story in their article on cardiac surgery recovery. The article discusses depression, returning to sports, and other aspects of recovery.

www.wsj.com/articles/for-many-life-after-surgery-is-surprisingly-hard-1466443585?tesla=y

back in the climbing gym

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How You Live

I cannot believe that this is the first time that I’ve seen this speech given by Stuart Scott at the 2014 ESPY awards. Scott, an ESPN anchor, gave this incredible inspirational acceptance speech for receiving the 2014 Jimmy V Perseverance Award. I’m not much of a sports fan, so I guess I missed this; who knows. Either way, over a year after his death, Stuart Scott has inspired me. The most incredible quote for a person living with a chronic disease:

(which for the readers of this blog, feel free to insert <heart valve disease> or whatever life threatening chronic condition you have, in the place of <Cancer>… these diseases are different, but the struggle is always real)

“When you die, it does not mean that you lose to cancer. You beat cancer by how you live, why you live, and the manner in which you live.” 

“So Live. Live. Fight like hell…”

See his speech below. Fast forward to the 7:00 mark to go right to his speech.

scottmem

His memoir came out last year.

 

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The Great INR Balancing Act

Living with a chronic disease/condition comes with up swings and down swings. Things are good, then not so good. It is a balancing act to stay healthy. Yesterday; great news, today; less great news. Below is an explain-y section, and a vent-y section.

Explain-y: Living with a mechanical valve means that I must be on the drug Warfarin (Coumadin) for life. Warfarin is an anticoagulant, which means it slows down the clotting factors in the bloodstream. This is prescribed to patients with mechanical valve because the platelets tend to stick or snag on the edges and surface of the synthetic valve. When the platelets snag, they begin to clot, forming a blood clot, which can then dislodge and cause deep vein thrombosis, heart attack, or a stroke.  Super bummer right?

Warfarin/ Coumadin are often dubbed as ‘bloodthinners’, though they DO NOT thin the blood. ‘Bloodthinning’ implies that the viscosity of the blood changes (Think ketchup vs. water). These drugs are anticoagulants. The term ‘bloodthinner’ is simply a nickname and not to be taken literally.

That being said, even doctors and nurses will use the term ‘bloodthinner’, though I will not for the remainder of this post. The anticoagulant factors in the blood can be measured using a simple blood test called the Prothrombin time (PT) test, which generates a number called the international normalized ratio (INR). A person that is not on Warfarin/ Coumadin will have an INR of 1.0. Someone who has a mechanical valve will usually be directed to maintain an INR between the range of 2.0-3.0. My cardiologist likes me to stay between 2.0-2.5, though it is difficult to stay within that small of a range. Basically, I am tested every other week, and if my INR is too low (under 2.0) they increase my daily dose), and if my INR is too high (above 3.0), they lower my daily dose.

There are lots of risks and factors to keep in mind when you are taking anticuagulation therapy medication like Coumadin. I’ll let you read about how Vitamin-K (found in leafy greens) affects INR, how having a high INR can be dangerous, and other factors by clicking this link.

IMG_2721

Please excuse my Bitmoji use.

Vent-y: For months and months my INR has been stable, but all of a sudden (last week) my  INR was measured at 4.3! That is certainly the highest it has ever been. They adjusted my dose, and ordered me to take my PT two days later. When I took it again, it was measured at 1.5! Too low! Two days after that (today), I measured again and…. 1.4! It is very frustrating, especially since this is a chronic condition, and this problem will spontaneously occur (hopefully rarely) for the rest of my life. As frequent readers of this blog my recall, last year I lost a fellow valver, cyclist, and friend due to deep vein thrombosis/ brain embolism due to clotting issues associated with his mechanical valve.

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Two Year Anniversary

I would like to share my recent milestone and the emotions that went along with it.

March 15th 2016 marks my two year anniversary of my last open heart surgery (aortic valve replacement emergency re-do due to endocarditis). I had my yearly echocardiogram scheduled yesterday, one day before my anniversary.

Two years ago, I had a traumatic experience during an echocardiogram where the echo tech spilled the beans about the emergency that was occurring inside my chest (which was extremely unprofessional of him, and against code). He told me that my recently implanted prosthetic valve was literally falling off. This led me to a panic until my cardiologist came into the room 20 minutes later.

So you can understand why echo appointments freak me out. I’m feeling great now, in fact I think I’ve never felt better athletically speaking. Despite this, I was still very afraid that I would go in and hear bad news. I almost expect to hear bad news. I know that’s not the most positive thought, but it is the truth. It is fear that guides me to think that way.

And it was that same fear that caused me to keep this echo appointment and my anxiety about it a secret from my friends, girlfriend, and family. I spent most of the weekend with my buddy, and I didn’t bring it up once. But there I was, bottling it up inside, stewing on it, just being afraid; alone in my brain. One of the main reasons I started this blog was so I wouldn’t contain my anxieties, yet I failed to utilize this outlet, which would have been useful during the past 2 weeks.

Yesterday, I went to the echo appointment. The echo tech did my yearly echo last year as well, and we remembered each other enough to pick up where we left off in small talk from last year. The doctor checked the echo results remotely, and told the tech that everything was A-Okay, and that I can be sent on my way for another year.

The relief was astronomical. I didn’t realize how much of a weight this was on me. In the car, on the way home, I completely broke down for a solid 2 minutes. After I finally got a grip, I felt cleansed. Blue sky. Now, I feel energized and ready to make the best out of every day, at least for the next 50 weeks (until my next yearly echo approaches).

Cheers❤

Anthony

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Tooth Care for the Prosthetic Valve Patient

IMG_1526

That’s the best fake smile I’ve got

My 2nd open heart surgery was 3.5 months after my initial aortic valve replacement, and was due to Bacterial Endocarditis (BE). BE is an infection along the lining of the heart tissue, and usually involves the valves. It is fatal if left untreated and often involves replacement of the infected valves and hefty doses of antibiotics. People with Bicuspid Aortic Valve or a prosthetic valve will sometimes get BE. They will try to identify the organism by testing the patient’s blood. In my case, they were not able to identify what it was. Because of this, after the surgery, I was given a 6 week course of 2 different types of wide range antibiotics.

BE can occur AFTER Bacteremia takes place in the bloodstream. Bacteremia is when bacteria enters the bloodstream. It can be the result of any cut. Intravenous drug users will sometimes get BE from using dirty needles. People like me are often told to take good care of their teeth, and to avoid gum bleeding because bacteremia can occur from any bleeding in the mouth, inflicted by yourself or a dentist. Though the recommendations have changed recently, people with prosthetic valves or a history of BE will usually take a dose of amoxicillin before a visit to the dentist.

My infectious disease doctor explained a method that might help prevent bacteremia from occurring from gum bleeding during normal daily tooth brushing. The idea is to kill the germs potentially opening up the gums with a brush/floss. The method:

1. Swish Listerine/ antimicrobial mouthwash for 30-60 seconds. Sometimes I mix 1 part hydrogen peroxide with 1 part Listerine. 
2. Wait 3-5 Minutes
3. Brush thoroughly with a soft bristle toothbrush
4. Mouthwash again (I added this step myself for redundancy. I know, I use a lot of Listerine)
5. Floss gently and correctly

6. Mouthwash again

Another tip given to me by another patient: Clean your toothbrush every now and then by soaking it in Hydrogen Peroxide overnight.

I understand that this is redundant and excessive. This was recommended to me after my horrific battle with Endocarditis, to avoid getting it again. 2 years later, I have loosened up on this method (I usually skip step 4).

I would definitely recommend this method to anyone recovering from valve surgery, because the first year after valve replacement surgery is when you are most susceptible to BE.

Other Links related to BE:

The 2007 Revision of the AHA Guideline for Preventing Infective Endocarditis (read the Conclusion at the top of page 2 / Table 3 at the top of page 10/ Table 6 at the top of page 13 )

PREVENTION OF INFECTIVE (BACTERIAL) ENDOCARDITIS Wallet Card

 

 

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The Story of My Heart

I’ve only recently realized that throughout my blog, I have not compiled a thorough summary of my entire experience. I also did not sufficiently explain one of the most major events; the emergency re-do open heart surgery/valve replacement. I posted HERE while I was recovering from that event, but I was so exhausted, drugged up, in pain, etc., that I never explained fully what happened. This post will also exist in my SUMMARY tab. This post is my memoir of living with Bicuspid Aortic Valve, before and after corrective open heart surgery.

SCAN0038I was born in Trenton, New Jersey in 1983. When I was getting checked up by my pediatrician when I was 18 months old, he heard a murmur while listening to my heart. He told my mom that she should take me to a specialist at Deborah Heart and Lung Center. The performed the routine heart tests; echocardiogram (echo), EKG, and doctor exam. I was diagnosed with Bicuspid Aortic Valve (BAV) which means that my aortic valve had only two leaflets instead of three. A person born with this condition is usually not affected until adulthood. Many people do not know about it until their elderly years. I knew about it at such a young age because my doctor had a really good ear for murmurs, or perhaps mine was louder. Who knows?

Growing up, I went to Deborah Heart and Lung Center for checkups every 4 years. Even though the valve is deformed, it performs fine for a long time. Over time, the valve can become calcified, or become stenotic (aortic stenosis), which causes it to become less effective. For me, in my twenties, my valve started to leak (regurgitation). During each pump, blood would regurgitate back into the heart, causing the heart to work a little extra. This extra work causes the left ventricle walls to thicken, which can eventually lead to heart failure. When the doctor perform an echo, they look for a few indicators that help determine when elective valve replacement might be necessary. Ideally this surgery is done right before the valve becomes a serious problem, so that permanent heart tissue damage does not occur.

I grew up without thinking much about my heart condition. I thought it made me a little special because I missed school once every four years because of it.  I played contact sports, and was very competitive. I was a very fast runner, and was never held back by my condition.

I went to college and became an outdoorsy person. I loved camping, hiking, backpacking, and rock climbing. After college, in 2006, I moved to Southern California and engaged in lots of rigorous outdoor activity, especially rock climbing and cycling. I even went without health coverage for a few years. I did not think about my heart condition much. I got my teaching credential in 2010, and got my first classroom teacher job in 2011. Along with this job was new health insurance, meaning a visit to the cardiologist was in order.

My new cardiologist showed performed the usual tests. After the tests she explained to me that my regurgitation has graduated from ‘moderate’ to ‘moderate-severe’. Also, my left ventricle walls were thickening a bit. This basically meant that my heart was starting to enlarge. I was not quite at the point where elective valve replacement surgery would be recommended, but she told me that her best guess was that in two years I would need surgery.

I spent a lot of time browsing the web for information about aortic valve replacement. I think I was often searching for answers that would point in the direction of denial, that I actually did not need surgery. I began to get anxious about the possibility of heart surgery. I would sometimes cry during my commute to work, when I was alone, because I was so overwhelmed with the scary unknown possibilities ahead of me.

Fast forward two years. At this point, I visit my cardiologist once every six months to check on things. This time, she sent me for a CT scan. This is a very intense type of X-Ray that generates a three dimensional view of my chest. The CT showed that I had an aneurysm in my ascending aorta (which is common for people with BAV). An aortic aneurysm is basically when the artery swells like a balloon. The more it swells, the weaker the walls of the artery gets, and the more likely it is to burst (dissection). These results were scary and real. I remember, I read her email with the results right when I was boarding a boat for a fun whale watch trip at Newport Beach. Reason right there to never check your email on your phone when you’re out and about. It can ruin your day!

During the summer of 2013, my cardiologist sent me to meet a surgeon in Los Angeles. Dr. Kwok Yun at Kaiser Permanente Sunset Boulevard. I wrote my very first blog post after that meeting. He told me that I need a valve replacement. He said I could wait, but that waiting doesn’t necessarily help because something bad could happen before then. He recommended mechanical valve because tissue valves wear down and often need to be re-operated on in about 10 years (give or take). He explained that it is recommended that young people (under 60) receive mechanical valves because the valve will outlast the patient’s lifetime. Re-operations are riskier, but in the end it would be up to me. I went with my cardiologist and surgeon’s recommendations and opted for a mechanical valve.

india-surgery-pediatric-aortic-valve-replacement-repair3Mechanical valves require a lifetime of anti-coagulation therapy (Coumadin, Warfarin). This scares a lot of people because it can cause bleeding events that may be life threatening. It is also dangerous to have a baby while on this drug, so females who plan on having children often opt for tissue valves so they do not need to go on anti-coagulation therapy. I requested to receive the On-X brand mechanical valve, because it is made of super space age material (carbon fiber), and there was a new study out that determined that patients with it may be put on lower doses of Coumadin. This was an attractive idea since I am very athletic and engage in activities that could lead to bleeding and bumps on the head. The surgeon said that he was comfortable with installing the On-X valve, even though the St. Jude’s valve (another brand) is older, more common, and time tested.  

This is about when I created my blog. I used the blog as a way to journal my experience, but also a way for me to process my feelings and put those emotions out there for others to see. I thought it would help me, and it did.

I experienced expected anxiety while preparing for the surgery. At times I wished that the waiting period would be shorter than 4 months. I was scheduled to be operated on November 25th, 2013. My parents planned on flying to California (from New Jersey) to be with me during my surgery and 2 weeks after I would be discharged from the hospital.

A few days before my surgery I had an early potluck thanksgiving with my parents, roommates and friends. I wanted to be with the people I loved before I went in. We ate, gave toasts, and drank wine. I was happy to have my parents meet my friends. It was a great night. I felt loved. I knew the odds were in my favor or survival; the chance of death during surgery was less than less than 2%, but I was still reflective and thankful of my friendships.

My parents and I got a hotel room in LA, since I had to report to the hospital at 4:00am. Before going to bed, I had to wipe my body with these disgusting smelling antimicrobial wipes to reduce the chances of infection. Falling asleep was scary. I bought a few meditation audiobooks to listen and help me fall asleep. I thought it would help my attitude and relax me. The guy talking in the audiobook talked about forgetting the future and the past, and focusing on right now. I tried really hard to do that. I eventually fell asleep.

In the morning, I woke up and was anxious to get to the hospital for some reason. I wanted to get this over with. I reported to the hospital and checked in. The surgeon stopped by as they prepped me. I fully trusted him. I had no choice. I tried to remain calm and stay positive. I was scared shitless, but some kept that fear buried somewhere below. I was talking to my friend recently who is a Certified Registered Nurse Anesthetists, and he said that they usually secretly give the patients medication to calm them down before they are moved into the operating room. This makes sense, because I remember being in such a good mood by the time I got into the OR. Soon after that, Zzzzz…

I went into surgery at 6:00 am. I woke up at 2:00pm. I was only on the heart and lung machine for 59 minutes, which is very brief. I was closed up in less than 3 hours. My faulty valve was replaced with an On-X Mechanical Valve, and my aneurysm was repaired rather than replaced. This means he made a little snip in my aorta, and sewed it back together so that it was back to the normal size. I woke up in intensive care. I had a nurse named Phil who is about my age taking care of me. After talking about music and whatnot, we discovered that he is the first cousin of my roommate, and that we partied together once! Small world!

994659_10202180482741156_230337556_nRecovery from this surgery was textbook. There were moments of intense pain, but for the most part that was all managed well. I was put on my anti-coagulation medication Warfarin, and my INR was stabilized. Recovery in the hospital took 6 days. During that time I walked as much as I could. One really annoying challenge of surgery recovery is constipation. My parents hung out with me every day, and my roomies and friends trekked out to LA to see me too. I could hear the valve ticking in my chest. I was happy to be alive and I began to outline my recovery goals.

Once I was home, I began working hard towards a full recovery. I attended several weeks of cardiac rehab, which involved nurses monitoring your vitals while you did easy exercise on treadmills and stationary bikes. I soon felt like I could do the rest of recovery on my own.

Below is a list of some of my recovery milestones, and how long after surgery I achieved them:

  • Pooping (a full legit one)- 5 days after surgery
  • Coffee- 12 days
  • Walking 5 miles- 2 weeks
  • Drinking a beer- 3 weeks
  • Cycling up hills at about 75% max effort- 6 weeks
  • Back to work- 6 weeks
  • Rock climbing outside again- 8 weeks
  • Bench press- 12 weeks

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Things were going great. I went to the cardiologist for follow up appointments, and everything checked out. Usually they perform an echocardiogram about 3 months after surgery, and everything looked good. I wanted to start exercising harder, but my doctors wanted me to continue taking it easy. I wanted to be taken off of my beta blocker, but my cardiologist insisted that I stay on it.

On Monday, March 10th 2014, about 3.5 months after my surgery, I woke up experiencing some significant shortness of breath. It felt worse while I was lying down, though I still felt it while standing and walking. I definitely felt short of breath when I walked too fast or exerted myself. I went to work hoping it would go away. My heart rate was pretty high while resting. Before this day, my heart rate was usually at about 75 beats per minute (BPM), but now was up around 95 BPM while resting. These symptoms were very concerning. I called my doctor and she scheduled blood tests.

On Tuesday, I pretended it wasn’t happening. I went in for the blood tests. I pretended as much as I could, but when I lied down that night, the shortness of breath got worse, and it really scared me.

On Wednesday, I stayed home from work and went in to the nearest ER (not my home hospital). A doctor performed an echocardiogram (without Doppler), and said everything looked fine. I was discharged. He missed something important: Doppler is a function that may or may not be used in echocardiograms. Just like how doppler can be used to measure the movement of clouds and stars, it can be employed to show the movement of blood, thus the regurgitation inside the heart. If the ER doctor were to use echo with doppler, he would have notice the severe regurgitation, which would have suggested that my valve was seriously malfunctioning. I would later call this hospital and explain what they missed, and they would use my case as a learning experience to be discussed at a weekly meeting amongst the doctors.

On Thursday, I went back to work. My blood tests started coming in. Some numbers looked weird. My BNP (B-type Natriuretic Peptide) was abnormally high. BNP is a substance secreted from the ventricles or lower chambers of the heart in response to changes in pressure that occur when heart failure develops and worsens. This seemed very bad, but I didn’t really know what it meant. Still scared.

On Friday, at work, while one of my morning classes were entering my classroom, my cardiologist called me. She said, “You need to come to the ER right away. I am working now, so I can see you when you get here.” I asked what was wrong, and she said that she wanted to check me out herself.

I grabbed a hallway aide to cover my class and I went to my principal’s office. While trying to explain to her what was going on, I immediately began to break down. My whole world was crumbling. I thought everything was under control. I thought the doctors took care of everything. I thought everything was fixed. I didn’t understand. She offered to drive me to the hospital because she did not want me to drive while I was so upset.

I checked into the ER and an echocardiogram technician soon came to my room. He began to perform the echo. Soon after he began the imaging, I could tell her was a bit perplexed. His facial expression began to strain. He looked concerned. I got more nervous. He said, “Dude, I’m not supposed to say anything, but I just think you would want to know… That your mechanical valve is falling off.” I began to freak out, and my heart started to race. This tech should not have said this. My anxiety level went through the roof, which was not helpful. He told me to calm down, and he called my cardiologist. ‘

She arrived quickly and looked at the screen with the tech. She said, “Mr. DiLemme, I’m sorry, but this is not good. This is called a dehiscence, which means that your valve is coming off at the sutures. There is possibly an infection. Have you been having no fevers, or any signs of being sick?” “NO,” I said. I began to cry uncontrollably, and she consoled me and tried to calm me down. She told me that I needed to be transported immediately to the LA hospital where I originally received my surgery. I called my mom.

The EMTs arrived, and whisked me away. The medic who rode in the back with me talked with me about cycling and this and that. He said he would buy me a beer next time he saw me, perhaps out at a bar in town.

I arrived to Kaiser Permanente Sunset Blvd, and they wheeled me into the cardiac ward. My surgeon’s assistant came to speak with me. He told me that I needed to be operated on again. The operation needed to be redone. There was probably an infection, but they would only know once they went inside me to look. He said that this re-operation was riskier than the first. I asked him what my chances were, and he responded with, “There is about a 10-15% chance of death during surgery.”

all i could think ofHe asked if I would mind that they use the St. Jude’s valve rather than the On-X valve this time. He asked because I specifically requested the On-X valve last time. The reason they wanted to go with St. Jude’s this time was because they used it more often, and were slightly more comfortable with it, so it would make the already risky procedure a little easier.

All this hard work and recovery, only to end up back on the operating table. I felt completely out of control. All I could do is put all of my trust and faith into the surgeon’s hands.

My parents booked the soonest flight that they could, but they would land in California while I was under the knife. My mother would later tell me that she prayed to God, and vowed to go to church every week if I would make it out of surgery safe.

This surgery would end up being much longer and complicated than the first. First they had to remove my damaged mechanical valve. That is when they discovered that the tissue surrounding my prosthetic valve was riddled with infection. My surgeon would later tell me that it looked like ‘dog meat,’ whatever that meant. They had to scrape, or debride the infection off of my heart tissue. My ascending aorta, which was previously repaired, would now be fully replaced with a synthetic graft. This procedure is known as the Bentall Procedure. The tricky part of this is that the coronary arteries have to be detached from the aorta, which is being removed, and reattached to the synthetic graft.ascending-aortic-aneurysm

I would remain under anesthesia and unconscious for almost 2 days. The doctors were worried about removing my breathing tube, because I was connected to the heart and lung machine for a while this time. I have strange memories of coming in and out of consciousness during this period. Apparently I was very violent, and would constantly try to rip the tube out of my mouth. The nurses had to restrain my arms.

IMG_2448Recovery was much more difficult this time. I was in much more pain. I felt nauseous. I had a hard time breathing. I would start to panic sometimes. In my mind, the pieces of my heart were held together by tiny little threads that could just fall apart at any moment. My infectious disease doctor met with me and explained that I had some form of bacterial endocarditis, but they were unable to identify what species of microbe it was that infected the walls of my heart and prosthetic valve.  He said it was rare that I showed no signs of infection before my valve began to fall off. He told me to take good care of my teeth as infection can often enter the bloodstream through bleeding gums.

I spent more time in the hospital this time; a little more than a week. My ICU nurses were great. I felt okay, but my spirits were down. I felt lucky to be alive, but I knew that it was possible for infection to return. They inserted a PICC line into my arm. I was prescribed a hefty dose of antibiotics (vancomycin and ceftriaxone) that I would have to administer to myself for a period of 6 weeks after discharge. This was to eradicate any microbes that might be hanging around in my system and to prevent them from clinging onto my new valve. Another surgery would be even riskier.

I had to connect bags of antibiotics to my PICC line 4 times a day, every day, for 6 weeks. I eventually fell into a rhythm with this, and it wasn’t as bad as I thought it would be, but it still felt like a ball and chain. Every day, I would wake up, and walk my dog to the coffee shop. I would have some coffee, then get up, walk home, and give myself my next dose of antibiotics. Repeat and rinse. My sternum hurt even more this time. It was hard to sleep. I would take lots of pain pills. I watched all 8 seasons of Dexter. I would garden and Bonsai to spend my time. I went on walks and eventually rode my stationary bike. I would ride the stationary bike while watching Dexter. I was bored and in pain. My mom stayed with me for 2 weeks after discharge. She was a great caregiver.

After 8 weeks, I ended my regimen of antibiotics and my PICC line was removed. I felt free. After this, my recovery was similar to the first. I was obsessed with becoming strong. I rode my bike and I climbed again. I became very focused in my rock climbing training. After 6 months post operation, I was a stronger climber than ever before, thanks to dedication to my training.

 

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My Mom still goes to church for me.

There are 2 major parts of my recovery since my 2nd open heart surgery. Physical and emotional. My physical recovery involves improving my strength and stamina in cycling and climbing. Recently, I have recently started Crossfit and Olympic weightlifting. My emotional recovery involves recognizing my feelings, which has led me to understand the importance of helping others. Through this discovery, I have:

  • Become a volunteer camp counselor at Camp Del Corazon, a summer camp for kids with congenital heart disease. Camp has become one of the most rewarding things I have done in my life. 2016 will be my 3rd year there.
  • Volunteered 100 hours at my local children’s hospital cardiac ICU playroom
  • Become a Heart Valve Ambassador for the American Heart Association, promoting their new patient support network.
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Heart Valve Ambassador-ing

 

I would continue to post on my blog, but eventually post less and less often. I still get daily visitors though. People who discover that they need a valve replaced in their heart will do a google search, and find my blog. These people often write me heartfelt and anxious emails. Some of them want answers to very specific questions. Some want to hear a little more about my story. Some want to talk on the phone. Everyone is scared. I have gained new friends through this process. I stay in touch with some people who email me. I rode a big bike ride with one heart-valve-friend, who passed away last year.

Check out my blog post, which tells that story. 

When we go through a scary event like open heart surgery, we want someone to relate to; someone who understands. Friends and family are helpful, but they don’t understand what it feels like. 

When I started this blog, I wanted an outlet. I wanted a place to vent. I wanted to write my feelings down, and let people read them. I thought it would be good for me. I had no idea that my posts would be so helpful for other people. Even if it has been a very small slice of an already small group of people, I am so happy to have helped.

Special thanks goes out to my new friend Pete. He is going in for his 3rd valve replacement later this spring. Conversations with him inspired me to write this summary of my heart story. He was also kind enough to proof read it for me.

Thanks for reading, and I hope to talk to you, if you want.

Email me at anthonydilemme@gmail.com

Cheers.

❤ Anthony

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