Hello! My name is Brian S. Tinsley and here’s my story of my aortic dissection. On August 22nd, 2003 I was just starting to play my usual Friday afternoon match. We had played about 3 games and while lunging for a low ball to my backhand side, I “cringed” as if my entire chest had exploded. I immediately sat down on the bench on the court as my partner said that’s it. I sat there for maybe 3 minutes and we walked back into the main lobby of the club.
Then I was approached by several folks wanting to know what was wrong with me? Anyways, a “key” mistake I almost made was allowing my partner to drive me to the hospital versus calling 911. The traffic was bad on Friday afternoon and no telling how long of a delay there might have been? So, I moved out to the front entrance of the club and we called 911. They arrived about 12 minutes later. I was taken to Everett General hospital-about 6 miles north of my club. I was given some baby aspirin and nitro tablets on the way up in the ambulance. I still had no idea of what was wrong with me, just a feeling like never before.
To my luck, EVERYTHING fell into place for me! GOD has this all planned out for me. I was immediately taken to the ER room, where to this day, that ER doctor was a “crucial” factor in my survival. From what I can remember is that I was taken to the CT scan/MRI lab and put down in this tube that completely submerged me. I was very scared and wanted out of that thing! The next thing I remember is this man, about 6’4″ standing at the end of my bed telling me that I had a 50/50 chance of living. As my wife-who was over with my kids at a friends house arrived to hear this news, we all were terrified. For some strange reason, I was completely out of it and just remember being taken away with out any chance to say goodbye to my wife and kids.
The next thing I remember was waking up-seemed like I was missing a few days, in a room with all kinds of devices stuck in my body. And, with my wife right at my side. From what I heard is this, when I arrived at the hospital my Blood Pressure was very high and they needed to get it down as well as them not being able to find a pulse in either of my legs. I have a 6 inch scar on my left thigh towards my groin and a 11 inch one down the middle of my chest. I was told that my surgery lasted from about 10:00pm to 0600am. Little did I know that the hospital that I was taken to was the number one cardiac hospital in the state and top 5% in the nation.
Thanks GOD! And, I also was fortunate to have Dr. Jim Brevig on call who did the operation of replacing my ascending aorta. I can not thank Jim and the team of nurses at the hospital enough. I have to tell you what happened on 3/27/04, I was on my walk while my daughter was at ballet. I decided to go a different route and then head back and get my wife her Starbucks coffee. Guess who I run into while walking? Jim Brevig! Here’s a great article about Jim! I got a another chance to tell him how thankful I was for him saving my life and gave him a big hug!
Furthermore, I was able to stay in their new unit too! So that meant, I spent the entire 5 days in the hospital in my “single stay unit” versus having to go to various rooms during my recovery process. The hospital stay was tough-I hated lying there and not being able to do anything. I would see the cleaning lady come in and pick up the trash cans and change them thinking-man… I would love to have that job!
Suddenly, the simple things seemed like they were so important to me. When you are given a second chance, that’s how everything becomes. It’s funny that you sometimes need a second chance to realize how fortunate you are to have family and friends who love you and pray for you. My dad had told me that he had asked God to save me during the late night and was comforted when he felt God would take care of me and see me through this. Being at the right place and right time-and with the GOOD LORD on your side was the “key” to my survival. With a skill saw running down my chest and clamps pulling everything open wide for the doctors/nurses to repair me, I was sore! Even, 8 months later, my chest is still tender when you really press on it.
After the surgery, I could barely walk or do anything that might risk having my chest open back up. My wife-who is my number one fan, was incredible! She was at my side helping me with EVERYTHING! I could not shower, go to the bathroom, get out of bed, into bed without her help! Thanks GOD! When I got home, I ended up living in our down stairs (main floor) as I could not make it upstairs to the bedroom. Although, I was looking forward to a bed that was big enough for me as my feet stuck out on those hospital beds and my son’s bed that I used while staying down stairs.
I can remember sitting up on couch just gazing out the window feeling every heart beat. It seems like (and still even today) any beat or funny sensation is felt and somehow sends a message to your brain that you better pay attention. My parents were amazing too! As well as my brother. Listen to me, forget everything……Remember your family! They are the only thing that matters!
As I was starting my recovery process-I was told that I would make a full recovery in 2 months! Literally, this was written on my “short-term” disability insurance forms. I work for MCI-formally Worldcom (bankrupt) and luckily had pretty decent coverage for the 2 months that I was out. Little did I know that the 2 months was the expected time that my breast bones would be healed back-not necessarily me ready to go back to work and just all of the sudden be like the “old Brian” and as if nothing had ever happened.
I started a walking program while on disability we would drop my son off at pre-school and I would start walking and then when my wife put him finally into the class, she would come pick me up down the road. I noticed a pain in my right hip. I had never had any hip problems before and as a competitive tennis player, I was in pretty decent shape. However, once you go through this type of surgery, you are pretty much back to square one and will need to work on getting back into shape. Chance are, you might not get back to your old self again. That’s tough, but I got a second chance! I am very thankful!
The hip pain eventually moved down to my right calf muscle and stayed there for almost 5 months! I went to my doctor, who referred me to a vascular surgeon-Jim Cook. He had me do a test where they measure your Blood Pressure on your ankles and arms, do a stress test and measure you again for your circulation. I thought everything was OK, but when I met with the doctor again, he said that I had a form of “claudication” in my leg. Then, I panicked! I thought-great, my leg is going to come off and I will be in a wheel chair. That’s what happens when you go to the internet and are not sure what you are really looking for. Be careful!
The pain in my leg would seem to come and go. It turns out that when you have a tear, it moves around. Which explains why some days I wouldn’t really notice it and others I would. Especially on hills or stairs. It was determined that I could do a couple of things. Do nothing, with the chance that it would improve over time or, get an angiogram and see what was really going on.
I was leaning to the opinion, I will give this one year and if it’s not better, I will get the procedure done. However, I was goofing around on the internet one night and came across the Stanford University Website. Little did I expect a return email as I had sent other experts on AD emails with no responses. I sent them my story and I received an email back from Dr.Craig Miller himself. He’s probably the most knowledgeable surgeon on Aortic Dissections on the planet. Here’s his biography! Craig put me in touch with Sunny and the co-department head, Dr. David Liang and I sent them my medical records and all my CT scans. These folks have a special ward called the Marfan’s Syndrome Clinic. It turns out that a majority of Marfan’s patients have aortic dissections or other connective tissue disorders.
My time at Stanford was going to consist of me getting some tests done on 3/19 and having a “flap fenestration” done on my left leg and an aortic stent either in my iliac artery or aorta (true lumen). However, after a series of tests, it appears that my circulation had improved enough that I didn’t need the surgery. My present situation is half of my body is being fed the blood via the “false lumen” and the other side (right) is the “true lumen” side. Dr. Liang decided that I basically needed to work to get my heart rate back up, after discovering that the root cause of my aortic dissection was most likely caused from a defective valve. It turns out that I have a “bicuspid valve” instead of a tricuspid valve. He thinks that this is what lead to a weakening of my aorta. I originally thought it was caused from High Blood Press/Stress and many years of competitive tennis and some heavy weight lifting in my late teens and through late twenties. I am also taking some medication for depression. Read my depression section for the name of it. It seems to be helping.
My hope is that this site will help other people find more information on living and dealing with an aortic dissection. Part of my therapy is trying to make this site very helpful to others. I feel fortunate that GOD gave me another shot at life and I need to help others too!
I had my CT scan done about a week ago at CDI imaging in Federal Way WA. They have the most sophisticated machine in the country. I had my echo cardiogram done about 2 months ago. So, I had my meeting with my cardiologist, Dr. Sandra Gan from Stanford a few days ago. My CT seems to have stabilized as I am 2 days away from my 1 year anniversary. My echo seems to look good as well. But, my Blood Pressure is high about 50% of the time and I had neglected to take my night time medications, so I am taking them now and will start checking my BP starting Sept 1, 2004 and track it. I am also going to really try to make sure that I exercise EVERYDAY (7 days) a week for a minimum of 45 minutes.
It’s been almost 4.5 years since my dissection and replacement of part of my ascending aorta. Still going strong and thanking GOD for his blessings!
2/17/2008: I have re-written my story, here you go!
My name is Brian S. Tinsley. It all started back on August 22nd, 2003. It was a hectic day as I was working for MCI at the time and was caught up in the usual work related things. I remember I was working from home that day and it was a sunny day. I had actually gone up to my neighbor’s house and was sitting out on the deck chatting with my friend Michael about how stressful life was and that I was contemplating buying a motorcycle from my client. She had this motorcycle that had been apparently in a wreck, and it had some front end damage.
I hadn’t actually seen it, but since she was my customer, I figured that I would be getting some type of good deal on it. We were going back in forth on email about the price, and I think that we’d finally agreed upon $1300.00. I didn’t have truck, so I had contacted my other customer, Patrick and he was going to leave a key under his mat at home so I could borrow his truck. He lived in Duval and the motorcycle was located in Bellevue. In the meantime, I was supposed to play tennis at 0700 am that next day with a guy who I had never played before but was a known good player (college level). I was to pick up the truck at 10:00am in Duval and then drive to Bellevue to pick up the bike (unseen and doing a favor for my client at work) at 11:00am.
It was around 12:00 is and I decided to go get some Teriyaki for lunch. I had been there a few times before and it was pretty good. Little did I remember just how high in sodium that Teriyaki really is? Anyways, I went and had lunch, not really thinking about much and on my mind the entire time was trying to coordinate, including how I would pay of the bike the next morning.
I went back home, I lived about 10 minutes away, but this time, I was also thinking of my match at 4:30pm. It was my usual Friday afternoon 4:30pm match with Jack. Jack was a lawyer and a very good tennis player. In fact, he was one of the top singles players in the men’s 45’s singles in the PNW region, a few years later; he became #1 in the 45’s division. I had been able to beat him before and we’d go back and forth. He was 3 years older than me.
I left my house about 4:15 and headed to the Tennis club that was about 10 minutes away. We had a Clay court reserved for the match. When I arrived at the parking lot and popped my trunk to go back and get my tennis bag and shoes, I realized that I had forgotten my shoes. So, I went racing back down the highway this time instead of the back roads to save time and go and get my shoes so we could get the match started. I returned back with my shoes on and hurried out of the car and ran to the outside court, court #1. Jack was waiting there and I put my bag down, got my racquet out and took my side.. Oh yah, I had to supply the balls as I was late!
Jack won the toss and elected to serve. My mind was racing on all kinds of things, the Sun in my eyes factor when I had to serve on that side, the fact that I really hadn’t had a good warm up and all the things that had to happen the next morning so I could buy this partially wrecked motorcycle that I had never seen. Needless to say, the match progressed along. I believe that I was down like 3-1 in the first set and I remember going for a shot that was hit deep to my back hand and I stretched for it and hit a slice backhand back and then…….. My life changed forever.
All of the sudden, something that can not be explained happened inside of me that gave me the weirdest feeling that I had ever experienced. The even weirder thing is that it wasn’t that painful. It was more of a quick sinking feeling that something was majorly wrong inside of me. I had no clue what was going on. I managed to pull myself walking over to the bench and I am sure that Jack could tell by the look on my face that we were done with the match. After sitting on the outside court bench, I managed to make my way into the first lobby. I sat down and remember my friend Curt come up to me and ask me what’s wrong? I don’t believe I even answered him? I think stayed there a few minutes, during this time, I had told Jack that I need to get the ER room. The closest hospital was Providence Everett, Colby campus, not the Major Trauma center, which was even further north. Jack had said that he would give me a ride to the ER room, but that he needed to get his kids out of the child daycare.
He had them in there while we were playing our match. In the meantime, it was around 5:00pm and it was Friday afternoon and horrible traffic going northward. By this time, I had made it to the main front entrance lobby and took a seat. As I set there, I felt as if I was actually some other person as I did not feel normal at all. Something had happened to me that I could not describe. My right leg began to go numb. I decide to have them call 911 (my first miracle decision that God helped me make that day.) The paramedics showed up and put me on the stretcher and wheeled me out of the tennis club and into the back of the ambulance.
The Paramedics were great. They began to treat a healthy active male tennis player, who looked to be in great shape for a heart attack. I was given a couple of baby aspirin and an inhaler or something with nitroglserin in it? Anyways, I remember not hearing the siren and I could visualize that they were in traffic and then the siren went on and I heard them say, “We need to get moving” and I remember arriving at the further Providence Everett Hospital. Little did I know, it would be the second miracle that it just happened to be one of the top hospitals in the state for cardiac care. Thanks God!
Since I was already planning on playing tennis, my wife had taken my son Owen who was 4 at the time and my daughter Olivia who was 8 over to a friend of the families’ son’s (Hunter’s) Birthday party. Here’s where things kind of begin to fade in and out.
I would speculate that I had been in the ER department for about an hour and I remember that Jack said he’d had called my wife and that she was on the way. I don’t he knew the severity of the situation; he just knew something was up. I remember later him telling me that he’d actually left the ER room thinking that everything was Ok and had to go and pick up his kids. I think he’d spoken to my wife when she arrived. My wife had dropped off the kids at Karen and John’s, my great neighbors across the street from us before she got there.
The next thing that I can remember was being wheeled on the stretcher into an elevator and going up some where in the hospital. During this entire time, I did not feel like the same person, I felt like the old Brian was going and I was in a different world and this was all really not happening. Yet, it was. It was serious and it was scary. I remember this technician saying that I was going to get some pictures taken. Later I would find out that the reason for the High Speed CT scan was my d-dimer test had come back high for a pulmonary embolism. That’s supposedly a potential blood clot in the lungs. Anyways, I proceeded down this enclosed tube. I was like being placed as a torpedo in submarine. I am not Closter phobic, but this really testing it and I began to say, “Get me out of here” this is scary. My subconscious mind today reminds me that the technician said that these pictures could save your life.
I actually don’t remember going back down the elevator to my ER Triage room one bit. Here’s where the scary part happens. I remember that my wife had just shown up and there was a very tall man at the end of my bed. He said, I believe he had the CT scans in his hand that I had had an aortic dissection and that he was hoping it wasn’t all the way up around the arch where my carotid arteries were. I don’t think he could quite tell then? Not 100% sure.. What I do remember was the next statement and the main reason for writing this story to begin with. He said, “You need emergency Open heart surgery and you have a 50/50 chance of living.”
Now, if that’s not good news, I don’t know what is! The weird thing again, was it was almost as if I was half asleep and not really quite fully comp rending what could have been the last words I would have ever heard down on this earth. Did I get to say all the things that I had wanted to tell my family? Did I get to forgive all my enemies? Did I really even have any? What about the tennis match and motorcycle I was buying the next day?
My wife had called my parents, who live in Bremerton Way, which was about 2 hours away by ferry or very close to that driving if you had limited traffic. I am actually not sure what time that they arrived or my brother got there or my wife’s best friend and her sister.
I was sent to surgery and Dr. James Braving was my surgeon in charge of the entire operation. This operation is no cake walk and is very complicated. Again, the planets had already started aligning for me as GOD began his game plan for me to come out of the good side of the 50/50 equation. The first planet aligned was that I was in pretty good shape to be able to take on this monstrous operation. The second was the decision to take the Paramedics ride versus getting driven to the hospital on a Friday late afternoon by a friend, who in reality might have taken me to the closer Providence Hospital that wasn’t as well known or staffed for cardiac care? Also, to this day, the fact that I came into the ER with the paramedics versus walking in, it saved me all the paper work! LOL!
Seriously, another part of God’s plan in this amazing miracle he performed on me.
The operation would be a real test of a skilled surgeon. From what I have learned is that the first thing that they had to do for me was to get my BP down. I imagine that my actual operation didn’t quite start till around 9pm that evening by the time all the prep work was done. By this time, my parents had arrived, my brother, my wife’s friend and her sister Jane. I remember my dad coming up to me at home after I had been out of the hospital for a few weeks, how he had asked God for him to allow this surgeon to have a successful operation and that he prayed for God’s favor to allow me to live. My dad said that he had asked God for this prayer around 1:00am in the morning and my dad, by faith got an answer from God that it would be granted.
One of the main things that they do for this operation is to get your body temperature down. They do this by putting your body on ice. The reason for this is that they need to get your body core temperature down to help lower your BP and what eventually happens, not 100% sure of the order, but you are placed on the heart and lung machine and then I believe that they get that working correctly and they began to cool your heart down to the point where it actually stops beating. Think about that! You basically are only kept alive with your brain as everything else has shut down. It’s like the motor of your car is not longer there and you are coasting down the road.
During this time, after the stop your heart is where I believe the real training and expertise comes in. From what I have been led to believe is that there a few surgical clamps placed on the aorta and then right above the aortic valve is where my dissection began. They end up actually cutting out a piece of your aorta and replacing it with a Dacron graft that is sewn back onto the aortic value and then the other end back to the aorta, some glue is also used in there somewhere to secure the walls of the aorta back together!
I don’t really know what exactly happens next, but the point is that there’s some amazing skill required and I know that God was working with my surgeon’s hand’s to guide him.
My wife tells me that the operation went on through the evening and it was over around 7:00am the next morning. Oh yah… almost forgot, you get the privilege (even though you don’t feel it at the time) of having a 14 inch scar down the middle of your chest thanks to the Skill saw that use to cut you open!
I don’t really remember that much until literally 2 days later, Sunday morning that I was alive and had this cuff around my arms squeezing me for my BP what seem like every 15 minutes. I had a draining hole in my chest, a tube into my carotid artery, a cafeter and a few other monitoring devices. Some of the things that I can remember in the room, which by the way, and another of God’s mysterious miracles was that I was in the new wing of the hospital called the Single Stay units that actually Dr. James Brevig was instrumental in getting built!
They were very nice rooms. Some of my memories included my wife being there right by me on my left side sitting in the chair and holding my left hand. She was there by my side, I know praying for me and caring for me like a true wonderful wife that she is. Thanks GOD for my wife! I am so thankful for her! I remember the flowers that I saw around the room, I don’t really remember too many other visitors as my parents-who are both miracle workers had come to stay at our house and were taking care of my children. I do remember my brother coming in and I can vaguely remember the look on his face that WOW.. My brother had been through hell kind of look. One of my favorite radio stations that I liked to listen to while driving home from downtown Seattle back to Everett was smooth Jazz. However, I remember that it seemed like the radio played 7*24 with that station only. To this day, almost 5 years later, I do not listen to that station anymore.
I also remember taking walks around the floors, I would carry my sack of pee with me and wonder very slowly around the halls, trying to do a bit more each day and then come back and lie down. I remember I would always be freezing cold and they would have to pile on 2 heated blankets to warm me up.
As my 5 days came to near and various encounters with Dr. Brevig, who I owe my life to and his great PA assistance, Jill, I was ready to leave. But… then, before you can leave and actually I don’t really remember eating hardly anything the entire time there, the nurse, who’s name was Marne says, “Mr. Tinsley, in order for us to discharge you, YOU need to have a BM.. A good old bowel movement! Yikes! Are you kidding me! You are going to torture me by having to go the bathroom? Apparently, this is standard operating procedure. Oh… I almost forgot, I think that I got hosed down that last day by the nurse for a pseudo type of short shower. That was embarrassing!
Well, you can imagine after being filled up with so much anesthesia and little to no food, how in the world are you able to have a BM? Where’s the roughage? Where’s the beef? Fiber? Bingo! The pill! It was a tiny suppository black pill that was handed over to me. It’s during the tough times like this that you are glad you have someone to go through this with down to the minute details. I needed my wife to insert this stupid pill. When your chest is cut wide open, you can hardly move your arms anywhere, any direction for the first 6 weeks! Your wife on here wedding day, although not officially announced that she would install suppository for you, managed to help me get this done. I was able to produce that required BM, which turned out to look more like a small dark black piece of cat poop! Sorry to bother you with the details, but it’s all part of the plan that I had to go through.
They discharged me after 5 days. I can not begin to say enough about that facility and how great of care I got. What is even scarier is this fact. Fast forward 4 years. It was August of 2007 and I was down at the watching some of the tennis matches at the Wa State Open. I ended up running into Josh Hershfield a buddy of mine that lived on my floor while at WSU, my first year of college. He and I were talking about my situation and what had happened to me. He mentioned to me that his mother had died of one! Then, he asks me if I had read the Sunday paper and heard about the story of the lady’s husband that had died at an Everett Hospital. I didn’t think anything of it and watched some more tennis and went home.
When I got home we ran some errands and I remember asking my wife where the Sunday paper was. She said she’ put it out in the recycling bend already and I went out and got it. I pulled it out and actually started reading the story on the front page. It was about a lady’s husband who had died of an Aortic Dissection at the Providence Hospital in Everett, Way, at the main campus.
Hmmm I said, that’s interesting as I read further, I saw the date of the visit, it was exactly 40 days before I had arrived. I ended up calling my friend Ron, whose wife actually was in charge of the Nurses there and asked here about this case and who was the ER doctor on call? She told me it was doctor so in so. Guess what? That was the same ER doctor that I saw 40 days later. I was mesmerized that this person’s death is probably what saved my life. What had they learned about his death that helped them diagnosed mine more quickly?
Why did he have to die and not me? What if I had been there 40 days earlier? Would it have been my time? I actually had to go sit down and really reflect on this sudden revelation and again thank ALMIGHTY GOD for this miracle of a second chance of life. For coming out on the good side of the 50/50 equation. I got the lady’s phone number and called her. She was so thankful that I had called and felt an immediate connection with her. A deep debt of gratitude for her husband paving the way for me to live. She was fighting with the facility to make sure that the nurses would be able to have more say in questioning an ER doctor if they saw things that looked funny or things that they thought should be done and were not. It’s a very sad event that it took the loss of her husband to save my life, but I thank God that the hospital was able to turn the tragedy into something they could learn from and become a better trained facility, which ultimately led to my survival.
I remember riding in the wheel chair down to the front entrance of the hospital. At the time, my neighbors, John and Karen had this big old Lincoln 4 door; it was big, with big doors and fairly low to the ground. My dad drove up in it to pick me up. I was so thankful to see him. I love my mother and father so much and there were very instrumental in my recovery and through their prayers and strength, they helped me immensely and I thanks GOD for them.
On the way home, I really became aware of the sights; I had been cooped up in the room for 5 days and hadn’t seen the light of day for a while. I think I was discharged finally after all the paperwork, bathroom, and shower and BM specimen around 1:30pm. The drive home with my father was comforting. He’s a very strong man. Not only physically, but spiritually and mentally. He’s an Aggie! His father left him at the age of 3 and he lived in Texas and grew up living with his Mother, his mother’s mother and his mother’s brother in a small town called Jefferson Texas. Although my dad didn’t have a dad for very long, he was and still is the best dad in the world to me and my family.
The drive took about 25 minutes to get home, not going over any major bumps in the road or fast turns. We pulled up in the drive way and I got out and walked very slowly into the house. I remember that my son’s bunk bed, top bunk was brought down to the living room. I would have to lie down quite a bit and rest as I wasn’t feeling that great at all and was on some heavy duty pain pills and pills to help me sleep.
It’s during these times that you really realize how blessed you are when you have a support system like your family. My mother ended up staying with our family for almost a week straight to help with the kids while Kathy, my wife helped me. One of the humbling experiences that I had to endure was the fact that I could not got to the rest room, number two without some help when I was finished. I think you get the picture. My wife was amazing. She didn’t think anything of it, but I was very humbled, embarrassed, but she just said it was like taking care of the kids when they were little!
I remember my parents also bought us this shower chair and device that hooked on the shower with an arm that you could use to spray you all over. Again, I had to have my wife help me get cleaned up as I couldn’t do it for a while. You never really realize what debts your wife will go to for you or just what unconditional love really means until you have experience agape, God’s unconditional love for one another. My wife is full of it and I am so blessed to have her.
One of the other things that I was fortunate to have was good insurance. I has signed up for both Long Term and Short term disability and you never think you will need them, you just check the boxes when you sign up for your Health care services each year. However, I ended up having to go on Short Term disability for 2 months and my wife helped me with this as well and coordinating all the paper work, not to mention keeping track of the daily medications that I had to take. I was fortunate at the time to also have a great boss name Drew. He’s a Christian like me and was very caring and we cried together a few times as I was very emotional, burst of crying often that I was so happy to have survived.
During my time at home, I received some nice flowers from friends and my tennis buddies made me a nice basket of movies and goodies. I remember a plant I got with a beta fish in it that lived off the root of the plant. I think we had that plant and fish for almost 3 years! Thanks Intermec! I would sit on my couch and stare out the window for hours. I would since and feel every heart beat while doing this. I would wonder, what is that feeling? Is something wrong? I was very paranoid about every little feeling in my heart area. Eventually, I finally was able to ignore every single beat. About this time a few more things happened. I remember receiving a call from my brother Kevin, it was relatively early in the am and I was in bed. Ring Ring… Hello I said, my brother said, did you hear the news? I said no! I am still trying to sleep. He said that John Ritter had died of an Aortic Dissection. I said, thanks.. just want I need to here! My brother is the best brother in the world. He is 14 months younger than me and is very smart. A great Christian man. At the time, he was doing well in his mortgage business and actually was able to pay a couple months of my mortgage and my American Express bill. I think he spent about $7K on me and didn’t ask for any of it back! That’s TRUE love and my brother is the epitemy of that God Like brother that everyone would like to have! I am so blessed again by the GOOD Lord for him.
John Ritter, the John Ritter of three’s company that I always used to watch? Yes.. It was true! He did die of an aortic dissection. At that time, that was all I knew. John Ritter dead at the age of 54, September 12th, 2003.
As time went on, I was able to start gaining my strength back and able to get my lungs back working. I had this Blow Tube thing that I had to blow into a few times an hour it seemed like to work on the pressure and capacity of air that my lungs could produce. I also remember that I was given this heart shaped red pillow from the hospital to hold close to my chest if I had to cough. I still have this pillow today. As well as this teddy bear that my wife had taken my kids to build a bear to make for me. It has a recorded message that says, “Hi daddy, this is Olivia and Owen, we hope you get better soon, we LOVE YOU!” I have this bear right by my night stand, almost 5 years later! I love my wonderful kids, they are the reason for my persistence in helping others, I got a chance to still be with them and some of us have not been so lucky. If I can and I do, help others, it’s my way to give back.. Which I will get into in a few.
My son was going to a preschool across town and there was a golf course near there. It was surrounded by sidewalks. As it was time to pickup my son, my wife would pull into the parking lot of the school and I would start walking down the street seeing how far I could walk each day. Little by little I would go further.
However, I started to notice a pain in my right hip. I had never had any hip problems and thought this was wired. It seems to have moved down to my right calf after a week or two of daily walking. I was concerned as I had to actually stop walking for a while, sit down and rest for a few before I could go on. I decided to go to my doctor, he sent me to get an ultrasound of my legs/arteries and I remember going to the doctor and they said I had “claudication” and it sounded serious to me. I thought to myself, what in the heck is going on now? Would this be permanent? What is causing this? I found out that claudication is something that older folks get from hardened arteries and it’s really the inability for blood to flow through the artery freely, it’s getting blocked to some degree.
About this time, I started doing my own research on the net. I would put in the words “aortic dissection” in the Google search engine and everything that popped up was scary. I couldn’t read but a sentence or two and it was all about death and not good news at all. I was frightened. I was wondering why? Why isn’t there anything positive? I happen to stumble across the term, Marfan syndrome and it turns out that many of those folks with that disease are also very susceptible to aortic dissections. Specifically, they have very weak connective tissue which cause the aorta to be week and easy to dissect.
While searching, I came across the Stanford University site for the center for Marfan’s syndrome and Connective Tissue Disorders. I ended up sending an email to them and was asking them about my situation with the claudication symptoms. I had also read about a procedure called a flap fenestration where the basically poke a hold in your false lumen over to your true lumen and this opens up some blood flow. I ended up getting in touch with another miracle person from God, Dr. David Liang. He’s the head cardiologist at Stanford in this department and works closely with one of the top surgeons there as well, Dr. Craig Miller.
He’s known for being a one of the best in the world for Aortic Dissection and aortic valve replacement surgery. I told David about my symptoms, sent him a copy of my latest CT scan I had at the time. I ended up going down there, I was scheduled to have a flap fenestration done on my left leg and a stent put in my right leg by their top radiologist. My parents also met us down at Stanford and were going to watch the kids the day of the surgery. I was sent through a battery of tests for blood flow and an echo cardiogram and CT Scan. What was the pits was I had my CT scan done on a Saturday, my surgery was to happen on that following Monday. During my CT scan, just after the lovely injection of iodine/contrast, the CT machine quick working! They didn’t get the pictures.
They said, I‘d have to come back the next day as I could not have more radiation that day. I had to get it out of me, which is a routine I have to go through yearly, with the once a year CT/Angio and the 6 months Echo cardiogram. It was really cool, we can back the next day and I got the CT done, then David took us into the main room where we say the CT scan up on this big TV screen. From the tip of tip of my head to my lower extremities, I could see everything. An Aortic Dissection like I have shows up like a white line running down the aorta. In my case, it was down the middle of my all the way down to my left iliac artery. My AD runs literally from about 1 cm above my Aortic Valve all the way up both carotid arties and all the way down to my left leg right above the point of bifurcation. After the review of this, I finally was able to realize what a double barreled aorta really means. It’s basically having one half of your body’s major organs being fed by one side of your aorta, the true lumen and the other half is known as the false lumen.
After the review of the CT scans in their fancy studio, we proceeded to go up to another section where I was given a treadmill test and I believe something called a “burke” test. I was all rigged up with these electrical nodes all over my chest which had to be shaven in some areas. With a dry razor, that is not fun at all! They basically take the readings of all your vitals before the exercise begins, then they do the actually treadmill test and after 15 minutes I was toast, I was immediately put back on the table and they took the BP readings from all the different cuffs that I had attached.
We then went into a near by room and reviewed the Echo cardiogram that I had actually had earlier in the day. Those are the easiest tests to get done with the tremendous amount of detail that they can tell. If you ever are told that you can have an EKG versus an Echo Cardiogram, I would opt for the Echo… It’s way more definitive with key information. In my case, it was determined here that I might actually have what is called bicuspid value. From what I gather, it’s a form of a connective tissue disorder that also leads to the weakening of the aorta. What’s even more interesting is that David was amazed that the technician that actually did the Echo was their most senior tech and had missed calling this out. However, it was really hard for David to find it, but he did see the leaflets stuck together. This also leads to some leakage due to two of the leafs being stuck together.
We then went back to David’s office and this was still all on a Sunday! That’s how amazing David was, he’d come in on his day off to help me! Sunny his assistant was also there and amazing! That group at Stanford is the best of the best! David reviewed all the tests, Echo, CT, physical exam and he determined that he would call off the surgery scheduled for early Monday morning. I think I had to be there at 5:40am on Monday.
I was relieved to not have to go through the surgery! One thing that David determined was that I was suffering from depression. A common event from people who go through open heart surgery. So, I was prescribed to take the drug called Lexapro, 10 milligrams to be exact daily. I am still taking this today, and I believe it helps me.
2. the starting of my website, www.AorticDissection.com:
When I returned back home, it was late in 2003 that I decided I wanted to give something back. I was literally given a second chance at life. I was able to come out on the good side of the 50/50 equation. I was alive and great full and full of gratitude. What could I do to help? I had always dabbled around in the domain name business and actually had sold a few domain names in my past and made a small amount of money. I had actually been using the Microsoft Front page program and had built a small domain name website.
I started work on building the AorticDissection.com website. Well, it turned out that someone had reserved the Aorticdissection.com, .org, .net and .info names trying to capitalize on the John Ritter death. How pathetic I said to this guy that had reserved them. I ended up paying $100.00 for the names if I remember right.
I started my site with all the information that I could find related to the subject of Aortic Dissections. I wanted to put my story out there, so I created a Personal Stories section. It wasn’t long before I started getting questions sent to me on email about AD. Dr. David Liang and Dr. Craig Miller said that they would help me with the questions, second opinions and actual surgeries of patients that I sent them. As the site began to get more notice, I got more requests to add stories. I also built a newsletter that I could have people sign up for and send out information to them when new stories are added. As of 2/16/2008, I have 159 stories.
I also started a Forum with the site. It’s a place where other survivors and folks can come and share their experiences and daily life struggles and victories that everyone goes through. An Aortic Dissection affects not only the patient but everyone around them. As of today, we have 726 members, over 1, 590 posts and members from all over the world including places like India, Australia and China. I have been able to team up with the top surgeons in the world. These people take my referrals and also provide second opinions and help reviewing CT scans as well. I have Cardiologist, Vascular surgeons and Radiologist that help me. I am so thankful to be able to give something back!
My goal of the site was to spread the word and knowledge about just what an Aortic Dissection really entails. It’s also my goal to help educate everyone, including ER doctors on what to look for. I have teamed up with various AD experts around the world and am very proud of the lives that we have been able to save. The second and third opinions that we have been able to offer. The amazing benefits that they forum provides and the personal stories section. Every time I get an email, it’s usually in the first one or two sentences that I am thanked for putting the site together. That’s what I feel God called me to do was to give back all that I can to help others. There’s the Tyler Kahle story on there, as well as some of the latest genetic testing that is being done.
They have found a link a gene that has been shown to cause AD. Just look at the Kahle story, the Dad, unfortunate death of Tyler and then his brother and uncle having a dissection. It’s sad, but this helpful information has led to doctors for instance at the Methodist hospital changing they way the ER doctors treat patients that might be potential AD diagnosed. They developed a new check list of questions (posted on my site as well) on what to ask, such as is there a history of AD in your family for starters? If so, be warned to go out and get yourself and your family as well. See if you can get an Echo Cardiogram done as not everyone can go to the doctors and request a CT scan. In the case of John Ritter, it turns out that he apparently had a full body scan, a few years (2 I think) before his tragic death, yet they claim no enlarged Aorta or Aortic root showed up.
Today, I am back playing competitive tennis. I finished #7 in the Pacific Northwest Men’s 45 singles division. I am captain of my USTA 4.5 team, I play tennis both singles and doubles 4-5 times a week. I can play a 3 hour singles match. However, and having run 6 marathons before, I can barely run/jog one time around a ¼ mile track. Unfortunately or fortunately depending on how you look at it, that’s just the way planned for it. It’s largely due to my claudication symptoms. However, I can honestly say as well, that your body produces now veins that help carry the blood back up to your heart and from when I started back playing tennis, I could play only a point before I would have to bend over and take a 30 second rest to get my calves from aching. Fast forward almost 3 years, and I am able to play a 3 hour competitive singles match and not even have to sit down between the odd games on the change over. I also am doing some light dumbbell work as well. I don’t go over 25lbs, my bench pressing of 325lbs days are long gone.
In closing, I am proud of the work that I have been able to get done so far. It’s only the tip of the iceberg. There is a mountain of educational training and awareness that needs to occur on a world wide level and my goal is to be the catalyst to help drive this awareness and most important of all, prevent unnecessary miss diagnosed deaths from lack of training and knowledge. Knowledge is power and because I have been given the second chance at life and God’s grace to continue living, I must use my passion and determination and will power to drive forward and spread the knowledge to the people who need it the most, everyone single human being on this planet.
Happy New Year! Almost… Been a while… I am still trucking along, just hurt my back yesterday playing tennis and had to miss this mornings 05:30am doubles. I am sitting here with my back brace on trying to hope that it gets better soon! It’s been a bit over 6 years now.. I am still taking my BP meds and my aorta has remained stable. In fact, I believe that I don’t have to get yearly CT’s anymore-that it will be every 5 years now.. Best of luck in 2010!