A glance at the past.
Back in 2008 I had my an open heart surgery, this was one out of several. People like to ask me about it, and how it went. It was a complicated surgery, that went wrong.
A while back a woman emailed me asking if she can use my surgery photos to show her son the after affects, so he’d know he was not alone. I told her of course. After this, it led me to locate more photos. I’m still working on gathering more. I am planning on contacting the hospital and asking for a copy of the video as well.
Back when I was in high school, when I was 16, and 17 years old I was experiencing chest pain. A few times it became so severe I had to be sent to the hospital on an ambulance. I had surgeries before done on my heart, so the chest pain caused some concern. The doctors thought something could be possibly wrong, my mother however thought I was faking to get out of school.
The pain escalated through the years, and my mother kept telling the doctors I was faking to get out of school. When I was eighteen and graduated high school I moved out on my own. I was finding it harder and harder to stay awake for long periods of time. Once I slept for nearly twenty hours straight and my family had a hard time trying to wake me up.
I finally got accepted to see a new doctor, Dr. Farrer. She had an Electrocardiography test done (EKG), and said I had a heart problem that was different then normal. I grew up with heart issues and had heart surgeries before when I was younger. She referred me to a new cardiologist to replace my old one from my childhood home, Dr. Vinod Kumar.
The first day he saw me he ordered an echocardiogram (ECHO). He said he thinks I need surgery, and wanted to do a cardiac catheterization. He said after the procedure they’d most likely do surgery immediately. My health insurance was paid for by the government, it has been all my life. The surgery they wanted to do was an new cutting edge treatment, of repairing a damaged valve using donor tissue.
Guess what happened? Our great country decided to drop me, right before the procedures and tests started. My dad was frustrated with this, and we refiled an application for my insurance coverage. They took a bit over two months to reject my application. My doctor doesn’t want me to work because of my health, and they don’t believe I’d be able to handle a job. I cannot lift more then ten pounds by doctors orders, most companies in California require a minimum of fifty, even for people working desk jobs.
My dad found a lawyer that would take my case up at no cost. His law offices were really nice. They asked me some questions, and asked for access to my medical records. Within a week they refiled my paperwork with the state to get my health insurance back, I was rejected again a few months after submission. So, they filed a suit in federal court. After a few weeks the judge ruled in my favor.
My doctor wanted to do the surgery in January 2009. They were not able to do the test until August 10 and the surgery on August 13, 2009. It took seven months to get my insurance back!
I went in for a cardiac catheterization. I woke up during the procedure of it in pain. I was given a mild sedative due to I was actually really freaked out about a giant hole in my groin. I wanted to sleep through it, so they let me. I lost feeling in my right leg, of which they did the catheterization. So they quickly finished up, and the nurse helped calm me and talked to me the rest of the procedure.
The discharged papers got signed, and I was about to leave to go home. As soon as I stood up, I collapsed and my face turned ghostly white. Even though this complicated is considered a side effect, the nurse that was with me made a call for a room. He wanted to be on the safe side, and keep me overnight.
The next day, I was told the doctors need to talk to me about my results, and it was serious, so my dad called my mom and step-dad to get to the hospital. A group of doctors (about five of them) came in to talk to me and my family. The results of the catheterization came in and they determined they needed to do an emergency surgery. They said if they waited a month I would’ve been dead. They also mentioned about checking into my Kawasaki Disease past, as they thought there was a possible relapse. Kawasaki Disease was a concern because I have no Asian ancestry, and it usually only occurs in Japanese or Korean children.
They decided they’d start the medications that night for my surgery. They called the surgeon in who would be performing it, Edwin Petrossian. He is the medical director of cardiovascular surgery at the hospital, and is a professor with Stanford University. He is most known for his expertise and interest in complex pediatric and congenital cardiovascular surgical repairs. He also often times guest teaches at the University of California, San Francisco. If you don’t know, they’re one of the most renowned and respected medical universities in the world.
All the doctors I had were some of the world’s most renowned heart cardiologists and people certified in the fields. Many work with the University of California, San Francisco, Los Angeles or Stanford. My main cardiologist was actually named doctor of the year. Many of my doctors have a very special interest in my case because it was highly unusual, and anyone who has ever gotten anything similar to what I had actually has passed away before surgery can be done. I am the longest living survivor, and my congenital defect has no known name.
The surgeon, Edwin Petrossian explained to me in detail exactly what he plans to do. They decided they were going to use an new experimental technique to attempt to use donor tissue to repair the valve, and cut my left ventricle in half by patching up half of it to be unused. The reason they wanted to patch the left ventricle because the chamber expanded far too much trying to pump blood, which weakened the heart.
If the repairs did not hold, they gave me options:
1) Mechanical valve. 2) Tissue valve. 3) Take my pulmonary valve and replace it with the aortic and bring in a tissue pulmonary.
He explained how each could effect my lifestyles. For example #3 was best for people that are very athletic. I was a best candidate for a mechanical valve. My parents argued over which was the best, but I choose mechanical valve myself because I had researched and talked to my doctors about their recommendations. The catheterization proved that my aortic valve was not shutting at all and that my left ventricle has grown too big to weaken the heart.
This surgery was supposed to be from five to six hours. The surgeon also promised to clean up my old scar and to use new scaring techniques that just started getting used within a few months before my surgery.
As soon as they cracked my chest cavity. I died. (Boo! I’m a ghost… okay not really.) I was dead for over a minute, and was successfully resuscitated. The doctors were afraid I would’ve received brain damage.
The old scar tissue from my previous surgeries attached itself to my heart and to my chest cavity. They couldn’t see the scar tissue on x-rays, and it was very unusual for them. My innominate vein ripped in half, as so did my aortic valve. They repaired the innominate vein using the experimental tissue procedures, and it held. But when they went to repair the aortic valve the damage was too great. They attempted but it fell apart quickly.
They replaced the valve with a mechanical valve from St. Jude Medical Research, and used tissue to close a part of the left ventricle. Afterwords, the doctor did what he promised and took the time to clean up the scars from the last surgeries (they’ve gotten hideous and took up a lot of my chest).
I was surprised he actually took the time to clean up the scars, as well, I had complications. The surgery that was to be 5-6 hours ended up 15-16 hours. I had a lot of complications after the surgery as well. They couldn’t wake me up when they first tried to. My body wouldn’t breathe for itself, and they felt the machine has done it too long. My body was extremely swelled up as well.
Within a few days, I started to breathe on my own again. About a breath per minute. My family was there from all over to be by my side, as nobody knew what the outcome was going to be. Did I have brain damage? Will I make it? Not even the doctors were sure. The surgeon, according to the nurse, did not go home for a week. He performed another surgery that week, but spent most of his time overseeing the team of nurses and doctors that had to attend to me. My lungs collapsed on the third day I believe. They were not fully drained yet, or working yet, but it did not help that they collapsed. I started coughing up blood. This freaked them out even further.
They even had a respiratory systems doctor at my side for nearly a few days straight, nearly nonstop. I had full time nurses at my side. There was not a moment where I did not have nurse overlooking me. Any time one left, another one came in. Even for lunch breaks or bathroom breaks. The doctors were always on call and checked in multiple times during the day and night.
When I regain consciousness, I realized I had lost the ability to speak. As much as I tried I couldn’t speak. The nurses and doctors quickly realized I had regained consciousness, as the machines told them. They gave me a pen and paper to write on. I was able to write my questions. My doctor, the surgeon, Dr. Petrossian came in and told my family in front of me to not lie to me. He said lying made everything worse.
First thing I wrote was that I couldn’t speak. The nurse quickly explained why. My lungs and throat were not cleared out yet. I then asked if I got a mechanical valve or not. My parents hesitated to answer the question. It took me a long time to write anything, it took me a minute to write a simple word when I was still partly under amnesia. I had so many IV needles and tubes, so it was hard to really move around.
Stuff kept coming up out of my mouth. And I kept feeling like I was choking, was either hold onto it, spit it into my eyes, or swallow it. So I kept asking for it to be suctioned out. The nurse said I was suctioning too often, so it was bothering them. The doctor said just hand me the freaken suction thing and let me do it myself. The doctor said I’d probably can feel it better. It amazed them that I gagged myself because I can feel where the stuff was stuck and bothered me so much.
This one nurse was not my full time nurse, but took over when the full time one left (bathroom, lunch, or breakfast), or when she needed help. This nurse came up with an idea to help clear my throat. As I kept grabbing the suction. She got a really really small tube to add onto it. And she pushed it down my throat. She hoped this would suction out my throat. This caused cough harshly, which seemed like I threw up all over the bedding and the floor (nothing came from my empty stomach, just lungs and throat).
The nurse was freaked out because it was bright red, and it was a very large amount. They cleaned it up fast and she removed the tube. I still had my suction thing. When I saw that nurse again I thanked her, because of this I was suctioning less, and I was able to whisper some words very harshly (still hard, but man it seemed like a miracle!). The doctor later said it caused my body to push out most of the stuff, which was actually really, really good for my lungs for some reason. The mass clearing that scared the nurse, made me feel so much better.
The ICU nurses were all really kind, and helpful. I got to see the doctors often. One of the doctors stayed at my side for the first 48 hours afterwards. I stayed in the hospital for 30 days, when the average release is about 5 to 7 days. They took x-rays once or twice a day. My blood was taken roughly every four hours. They tried several blood pressure medications out while I was in the ICU to see which one worked the best for me.
I lost twenty pounds in the surgery, and I was officially underweight for a while. A nutritionist came to my hospital room and explained how I’d need to go on a new low fat diet. I kind of thought this was funny, as I was not overweight, and my heart problems were not food related. She was telling me that I needed to switch everything I eat to low fat, avoid all fast food, avoid pizza, french fries, etc. The surgeon walked into my room, and I asked him about it. He said he did not know why the hospital sent the nutritionist to see me. He told me to ignore her guidelines and avoid low fat food, such as yogurt, etc, and look for things a bit higher in fat.
I was barely able to eat in the hospital. I couldn’t swallow, when I did I choked. I was barely able to eat toward the end of my hospital stay. I couldn’t swallow liquids right. This was the first time I ever had this problem. The doctor told me it was because of the tube irritation in my throat, and it could take some time to heal. They recommended I use thickeners in my liquids. If you haven’t tried them… don’t!
My mom bought me a bunch of straws. It was much easier for me to drink with straws. I was picking at my food, as it was hard to swallow food. About five months after my surgery I was able to eat on my own without being supervised. To this day I have trouble drinking liquids without a straw.
So. This was a glance at the past. Take a look at some photographs:
Feel free to share my story, and photographs with anyone whom is nervous about an upcoming heart surgery. It is not a scary process. People ask me all the time if I was afraid, I always say no. I just wanted it over with.
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