Category: Forties Page 2 of 5

John Roerts-45

Name: John Roerts
Email: johnwroberts2002@yahoo.com
Age at time of Dissection: 45
Type of Dissection: Ascending
Date of Aortic Dissection: 27 December 2013
Tell Us Your Story:

Well it happened. It was only a few days after Christmas. We had just gotten home from visiting relatives in Kansas. It was about a six hour drive, nothing exciting or dramatic happened which is actually saying quite a bit. The drive on I-70 to heading west towards Denver can be a white knuckler from time to time. Nope nice day, great weather, kids were getting along easy easy.

When I got home we did some unpacking and then I thought I would take the dog out while my oldest Andrew and his twin sisters finished unloading the overnight bags from the Expedition. My dog Chubbs had been cared for by the neighbor kids who had probably taken her out just a couple of hours before we got home as that was their schedule. They loved dogs and especially loved Chubbs an English bulldog. So I leashed up Chubbs and headed towards our usual spot, we walked and then I headed back towards the house.


By the time I had gotten to the front door a pain from my chest was running like lava up the left side of my neck. It was a constant pain in those beginning seconds, and it seemed to only be getting worse. Luckily my bedroom is right by the front door and my wife Gina was in the bedroom checking emails or something. She immediately asked what was wrong. I told her about the pain, and she asked me to sit down or lay down on our bedroom floor. She asked me if I could smile, then asked me if I could raise my arms above my head. I found out later these were some tips about assessing stroke or heart attacks that she had picked up along the way. I could smile, so not a stroke. I could sort of raise my arms above my head, but my arms went numb. We talked briefly about driving or calling an ambulance. It was decided to call an ambulance.

I was very alert while I was lying on the floor. My life was literally passing before me. At one point it seemed like I passed out briefly from the pain. I thought about dying. I thought about me lying on my bedroom floor dead. What a terrible way to go at 45. Man dies walking dog. Andrew was on lookout for the ambulance. I asked him to wait for them at the end of the drive way so they could find me quickly. I remember he told me he could see them coming up the hill. They will be here any minute. I just got to hold on a little longer.

The paramedics did some triage and gave me a shot to settle me down and ease the pain. After a few tests, they strapped me into the gurney and loaded me into the ambulance. The trip seemed like it took forever. It was a quiet ride. No sirens, no speeding ambulance making the 8 mile trip to the ER. I got sick a couple of times. I could hear Gina laughing with the driver while sitting in the front seat of the ambulance. I remember wondering if we were ever going to make it to the ER. Once we arrived at the emergency room at the Castle Rock hospital things took a swifter pace. The room filled quickly with doctors, nurses, and other specialists there to figure out what was going on with me. The early indicators were leading them not towards stroke or heart attack. Those tests came back normal.

My blood pressure was high, but not shocking high, the EKG was normal. I had good motor response and was very aware of what was going on. That was all about to change.After about 20-30 minutes I went in for a CAT scan of my chest. It was so painful just lying on the hospital bed. I could tell people were very concerned by the look on their faces as they walked past my room. This is a smaller hospital on what I would suspect was a very quiet night until I showed up.

Not long after the scan the decision was made that I needed to be transferred to another hospital. The staff quickly prepared me but was very vague with me about the details of my condition. I found out later that this was done intentionally. The gory details were explained to my wife. This was done to keep my blood pressure from rising and making a bad situation worse.

Getting into the flight for life helicopter was pretty bumpy. It almost seemed like I was the first patient that they had done this type of transfer. It was difficult for them to get me into the helicopter. There was a lot of discussion about where the nurses were going to sit and how to arrange me with all of the gear that was inserted into my body. After about 20 minutes, I was arriving at Porter hospital in Denver. I do remember seeing the lights of the city before I landed. It must have been about 1 a.m. by now.

After the landing and transfer into the hospital, I don’t remember much at all. No memory of anything really for the next day and half. I would wake up and feel a lot of pain. There were people around, friends, a lot of family. I could barely breathe let alone talk. I would press my morphine button as much as I could to help fight the pain. Most of the time I struggled to find the button that was pinned to my hospital gown on my chest.

The days that followed were painful and long. I quickly realized what happened and it was explained in general what had happened. I was in shock to say the least. I was lucky to be alive. I was lucky that my wife made the 911 call to get an ambulance to the house. I was lucky that the doctors in the ER found my aortic dissection in the first hour of being there. I was lucky that I had an excellent surgeon available to do the life-saving procedure. With all of these things happening like this I know that it wasn’t really luck.

God had given me another chance at life. I don’t know for how long, but I know that today I am alive and that I am blessed to be here on earth with my wife, kids, and all of other blessings that God has put before me.

Wayne Petralia-48

Name: Wayne Petralia
Email: wpetralia1@nycap.rr.com
Age at time of Dissection: 48
Type of Dissection: Ascending
Date of Aortic Dissection: 23 October 2008
Tell Us Your Story:

I was sitting at my computer in the middle of the afternoon and suddenly–WHAM! I felt a sharp pain in my upper chest/lower throat and immediately knew that this wasn’t just an incidental sharp pain that hits me periodically. I went on WebMD.com to see if I was having a heart attack and quickly ruled that out. By the time I finished that search, there was pain in between my shoulder blades and pain creeping up the side of my jaw.

I remained surprisingly calm and called Saratoga Hospital. Naturally, I was advised to call an ambulance right away but I decided against doing this. Instead, I called my mother and a friend and told them I was driving to the hospital, that something very serious was happening to me, and that I didn’t think I’d be getting checked out and released. I remember being concerned that my car was going to be parked in the Emergency Room lot and I thought it would have to be moved by someone because I was certain I wouldn’t be leaving the hospital that day. I drove the 1.5 miles to the hospital and informed the first staff member I saw that I was having heart attack type symptoms. Instead of bringing me into the emergency treatment room, I was brought in behind the receptionists, put into a wheelchair and had my vital signs checked.

A short while later, a physician approached me and said he was sending me in for a CT-scan. He wanted to know if I could climb onto the imaging table by myself. I informed him that I could. By the time the CT-scan was finished, over an hour had passed since first experiencing initial pain and symptoms. Shortly thereafter, the same physician appeared and laid it all out for me. I still remember his words:

Mr. Petralia, you have a major leak in your aorta and are in need of immediate surgery. I have notified Albany Medical Center and they are assembling a team of cardiac physicians, and I have a flight crew warming up a helicopter. We’re flying you straight down to Albany Med as soon as we can. You can refuse the surgery if you want, but I guarantee you’ll be dead by the end of the day if you do……and unfortunately, there’s a good chance you’ll be dead at the end of the day anyway due to the size of the eruption (it was 5-7 cm) but we’re gonna do everything we can for you so just try to remain calm and try not to move too much.

I was completely taken back by hearing this news. I was certain that I was about to die any minute and was actually waiting to feel my consciousness to start slipping away or for the pain to increase—something to signal that these were my last moments alive. I was disappointed that I couldn’t contact any family or friends to say goodbye. Several minutes later, I was flown 40 miles to Albany Medical Center and was descended upon by at least 6-8 doctors, as I recall. They kept asking me how long I had high blood pressure, and I was getting annoyed at this. “I never had high blood pressure!”, I told them, and their reply was, “You do now”. My brother and a good friend arrived shortly after I did, and I wrote out a living will and gave it to my brother after being told my chance of surviving the surgery was near 20%-30%. The three of us exchanged what were thought to likely be last words and off I went on the gurney.

The surgery was expected to last about 4-4.5 hours. It actually lasted almost 6 hours and as it ended, I went into a seizure and flat-lined for about 2 minutes. After reviving me, I wouldn’t come out of the anesthesia and was in some sort of coma for a few days. I don’t exactly know if it was induced or just a complication from the surgery. In either event, the ICU staff was not too optimistic that I’d be coming out of this soon, and passed this along to my daughter, who was at my side every day holding my hand and telling me to wake up.

A few days later I awakened unexpectedly and surprised everyone. The first thing I saw was my daughter and ex-wife standing in front of me crying. I couldn’t speak at all. I remember my daughter yelling for the nurse–“Shane!, Shane!–he’s awake!, he’s awake! The nurse ran in, took a quick look at me and quickly dampened a washcloth before coming over and washing my face and wetting my lips with it. I could barely comprehend being alive at that point, but I remember her saying—“Congratulations, you made it!” Then she kind of cocked her head half-sideways and said….”Most people don’t!”

The next day I was walking and I got noticeably stronger every day. I was released a few days later. My total stay was about a week. At first, I had trouble sorting out all the pills I was required to take, being very weak mentally and physically. I was taking about a dozen different medications, initially. It took a whole year before I felt strong enough to push ahead with my life. I was unemployed at the time of the event, and I had no idea what to do to rebuild my life a year later, as the country’s economic situation was not too good. I decided to learn Quickbooks and Peachtree accounting software at a local community college and took a managerial accounting course there, as well to complement my Bachelor’s degree in Finance. After 2 semesters, I took the GMAT exam at age 50 and applied to, and was accepted into the Graduate Studies program at the State University of New York at Albany. I only took 2 courses per semester, being unsure of how much course load I co
uld handle, but managed to get through it all and graduated this past May with a Master’s degree in Professional Accountancy at age 53.

Even after 5 years, I’m haven’t recovered the tip-top physical shape I was in prior to the Ascending Aortic Dissection, but I don’t have any lingering after-effects that I’m aware of. My medications, initially over $800 worth each month, have been drastically reduced. I now take one Pravastatin, one Amlodipine, one Atenolol, and one 81mg aspirin per day.

It wasn’t until after well after all this went down, that I learned about aortic dissections and how deadly they are in nature to most people who are stricken with one. To those reading this, tell everyone you know that if they EVER have chest pain that compels them to go to an emergency room, DO NOT LEAVE WITHOUT GETTING A CT-SCAN!!! I read that aortic dissections can be misdiagnosed as indigestion and other less serious maladies, and that many sufferers are sent home and die within 48 hours. After finding this out, I feel even more fortunate that the correct diagnostics were performed without delay at Saratoga Hospital, and that the surgeons at Albany Medical Center were exceptionally skilled at repairing such a large dissection, and reviving me as the surgery ended.

Nate Klinkhammer-35

nathan lake minnesotaIt’s hard to know where to start to make this a coherent narrative because if I included all of the twists and turns that I took (internally and externally) from May 7th-17th it would be a long time before I could stop, and we’d all be left with more questions than answers. At least, that’s how I feel today. In truth, every day brings more answers, moving me slowly towards whatever passes for my new normal life.

One of my surgeons told Krista and my sister that it was unlikely that I would remember anything other than being at a t-ball game. Unfortunately for you and me, that wasn’t the case at all.

May 7th was supposed to be memorable because it was my first day training my replacement at OUS. It being her first day, we didn’t get too much done, but I assured her that, “Tomorrow we’ll get a great start and really get into the guts of this job.” Ha, ha – she had no idea the lengths to which I would go to avoid weeks of training.
May 7th was also Krista’s last day out of town at the OSU College of Business awards ceremony. It was her first ‘big’ trip in her new job, and the kids and I were excited to hear how things went.

May 7th was supposed to be – and was – Mia’s guitar lesson. After which, we headed to Subway, grabbed a sandwich and the kids and I went over to Alex’s t-ball field for a game against the Orioles. During the game I was coaching the pre-school first baseman on the finer points of his position –
“Ok, Emmet, what do you do when the ball gets hit? . . . That’s right, run to first base and point your glove at – ” And then there was a popping sensation in my gut followed by excruciating, unrelenting pain.

May 7th was not supposed to include any type of stabbing pain. Now on the sidelines, nothing that I could do would make the pain go away or even abate to any meaningful degree. I remember thinking that – despite the pain – this had to be something simple and stupid. Gas pains? I didn’t have any idea what was causing it, but to turn on so abruptly, without any precursors or precipitating event, it couldn’t be anything serious. Still, I’ve hurt myself a lot in my life, and this was beyond any of those bumps, bruises or contusions

Which brings me to the first silver lining of my adventure, the grandmother extraordinaire of Alex’s teammate Quincy. Did I mention that she is also a nurse? Because, despite her other qualities, that’s the reason I decided to take a little walk over and sit next to her. The best compliment that I could give at this point is that, minutes later, I was getting into my car (my sister at the wheel) to head up to the hospital. I remember thinking that it was a good thing we didn’t bike to this game because it would have been a much longer ride by bike (ha, ha).

At this point, I still thought that – painful as it might be – it couldn’t be ‘a big deal’. Alex was still playing in the game, and in those few minutes I couldn’t even see where Mia was (playing with one of her friends as it turns out). Some of our friends on the team were going to look after them, and anyway, wasn’t I probably going to be back soon anyway? Why worry them unnecessarily? I’m glad that I’m telling the version of the story that ends with many more hugs and kisses and chances to show them that I love them rather than the version where I just disappeared in the middle of the game. The same with Krista – at this point still in Portland at the awards banquet. It seemed like a big – painful – ado about nothing.

We pulled into the wrong bay at the hospital, but I assured my sister that I could walk in while she parked. No lines (hooray for a slow day in the small town of Corvallis), and before I knew it I was scrambling for my insurance card in my wallet. Krista left me a copy of her new card on the banister rail at home. I could picture where I left it that morning because I would just grab it later. I pulled every single card out of my wallet before I finally found my insurance card.
The doctor at the ER asked quick – apparently revealing questions – and shuttled me right into a CT scan. The pain was, if anything, growing and getting harder and harder to think straight through. I finally knew that something was wrong when the doctor came back and said that the CT scan revealed an aortic dissection from my heart down to my hip. Yeah, I didn’t know what it was either: http://en.wikipedia.org/wiki/Aortic_dissection. I knew that it was serious when he deferred all of my follow-up questions to the cardio-thoracic surgeon who was, “coming in right away”.

The kids were at the t-ball field. Krista was up in Portland. My sister was at my side, and my dad was on the way. I asked the nurse for a pen and a paper because what else do you do at that point? Mia is 7, Alex is 6. I tell them I love them every day, but think of all of those other things that have gone unsaid so far. What about everything else? Things that I was saving until they were older. Things that I just hadn’t gotten around to yet. Heck, Krista and I are celebrating our 10-year wedding anniversary this year; not nearly long enough.

So I wrote. At the end of my first page the surgeon arrived. This was too big for them to handle in Corvallis. They were going to get me on a life flight helicopter up to Portland. What was the prognosis for this operation? How long was recovery? What else should I know? She deferred those questions to the surgeons up in Portland.
I called Krista at this point. She’d gotten the high points from my sister, and there’s not much to say about that call. I wanted to say everything, and couldn’t say nearly enough. She would meet me at OHSU.
So I wrote some more. Another page of the same. What else could I do? I had to assume that the very earnest doctor and other ER folks were doing their jobs well (they sure were), and my best bet was to stay as calm as possible and write. It didn’t feel like a death sentence, but it didn’t not feel like one either.

They gave me morphine for the pain, and the pain chuckled and kept right on going. I got bumped from their first choice of locations at OHSU. Historical note – this was the second time I was bumped from a helicopter trip. The first was at MassMutual when we were going to take the helicopter in to NYC. Bad timing for me on that one as well. At MassMutual our #2 option was taking the train. Fortunately for me, the ER doctor found another available surgeon at Legacy Emanuel in Portland. The Life Flight folks would take me up right away.
One of my nurses in the ER was the father of one of Mia’s soccer teammates. I’m sorry to say that I didn’t even notice until I was being wheeled out, but looking back it was amazing how many friends and acquaintances were looking out for me every step of the way. It was like a bucket brigade except that’s a terrible analogy because that would mean that I was passed friend-to-friend along the line until they threw me into the fire. Hmm… I’ll have to work on that one.

Trundling along in a gurney out to the helicopter. If you’re over 5’10” you don’t fit in one of these helicopters. I was folded up accordion style and was wedged into the passenger bay. My feet – legs doubled up – were pressed against the forward bulkhead. I asked if it was ok for my feet to be pressed against it, and was told, “Yeah, that’s no problem. Just don’t push on it.” That gave me something else to focus on not doing. Pain started spreading into my back at that point. Under normal circumstances I would have said that it was due to how I was contorted, on my side, on a stretcher for half an hour. I was reassured by someone letting me know that it was possibly the dissection getting worse.

The Life Flight company Reach sent us a survey about their performance. On it, they asked if I would recommend them to my friends. I guess that would have to be an enthusiastic, ‘yes’. If you’re ever in need of emergency transport from Corvallis to Portland, don’t book on Southwest, fly with Reach. Sure, it’s a little more expensive (about $45,000 before insurance, and worth every penny), but they gave me in-flight morphine and even called Krista on departure and arrival. When we were leaving they told my dad that they would be up to the hospital in 24 minutes. He said, “So about a half an hour?” They said, “no. 24 minutes”. Service!

In all honesty – I wasn’t in the best state of mind to judge such things, but they fly low, they fly fast and the trip was remarkably smooth (again, morphine didn’t seem to touch the pain, but it couldn’t have hurt the ride).
The helicopter arrived at Legacy Emanuel and – after jimmying me out – I was rolling through the hospital doors and …. into a construction zone? On unfinished drywall in front of me was a sign made out of blue painter’s tape, ‘OR ->’. Super! I guess we’re headed in the right direction. Down a long under-construction hallway. Past some guys in scrubs hanging out in a doorway (no door in sight), but the sign there said X-Ray. Then through the doors to the operating room. It was 100% due to my trip through the construction zone, but the OR was shiny and bright and looked like it was set up in a garage. That’s not a fair statement at all – nor is it true, but my impressions of the room were what they were. And those impressions didn’t extend to the folks standing, scrubbed, under those bright lights. What I knew with complete certainty was that my life was completely in their hands. Fortunately, as with so many other people at every step of this story, that faith was entirely deserved and subsequently rewarded.

Other minor things happened (although it’s hard to believe that I’ve left any details out of this story), but they got right to work and the curtain dropped on the pre-operation half of my story.
The story could have ended there. Or at least taken a different, much sadder, turn – told by a different author. Facts are facts. For me it was just like a light switch turning off in my head.

The surgery was 6+ hours, my unconscious recovery for a while longer. I know that so many people came together around my family during that time, bridging many gaps in many ways. I feel like I’m selling those efforts short with such a fleeting mention, but I couldn’t possibly do them justice and I don’t know half of what everyone went through. In a very real sense, I wasn’t there to experience those good deeds. I had the easy part; I just slept.

Until I woke up again. I couldn’t breathe. I was choking on something. I don’t remember much pain, although I’m sure it was there. I do remember not being able to breathe. I thought it had something to do with the tube stuck down my throat, and tried to fix that problem. That’s how my arms got tied down. Eventually (may have been the next minute, might have been the next day) Krista told me that the tube wasn’t stopping me from breathing, it was helping me to breathe. And in a moment of clarity I remember thinking, “Oh, yeah, that makes sense.”
When I was lucid I remember clawing my way back to steady consciousness only to have it slip away. I kept forgetting that I could open my eyes. I had fitful dreams.
Then I started to recover.

I was awake for longer periods of time. Aside from Krista and my parents who were a constant presence at my side, I remember a stream of friends and family – Rebecca, Alex, Mia, Ginny, Kim, my in-laws (who made the trip from MA on a moment’s notice to watch over the kids). So many more people sending care to me and my family.
From there it got easier, but for me this whole period is pretty hazy. I counted time by the number of tubes that were removed from various locations on my body. I was transported out of the cardiac ICU onto a regular ward. But only for a day or two.
Then things turned south again.

I’m an unreliable narrator at this point. The more compelling story during that time – and really from the moment I went under the knife the first time – will be told by Krista in part 2.
The story above is mostly details, details, details. The tapestry on which all of these details were stitched is rich with loving family, terrific friends, compassionate medical professionals and a caring community of which I am fortunate to be a small part. Many things have changed in my life since the events chronicled above, but all of the vital constants in my life have remained. I appreciate every moment of bonus time that I now have to share with you all, and look forward to many more memories to come.

Part II:
Mayday: The Aortic Dissection Story, Part 2
It’s astounding how quickly – in the matter of minutes – life can change. Life as we know it, life as we’ve built it. And life that doesn’t always go as we’ve planned it. One minute, I’m sitting in a banquet hall at the Downtown Marriott in Portland, satisfied that our event has gone off without a hitch; the next minute I’m being paged over the loudspeaker, ushered out of the room, and told in that grave tone you never, ever want to hear, “There’s a phone call you need to take.”

One minute I’m talking to Nathan on the phone, trying to tell him everything I ever wanted to tell him, but rushing to get off so he doesn’t hear me burst into tears; the next minute I’m sitting in the ICU waiting room listening to Dr. Hill say sternly, “This is extremely serious. If I don’t go operate on him right now, he is going to die. And even if I do operate on him right now, he could still die.”

The six plus hours we sat in the waiting room while he was in surgery were easily the worst six hours of my life. I sat staring at the door, waiting for something to happen, breaking down every time a “code blue” was called (we’d later learn that they’ll never call a code blue for someone in surgery, but didn’t know that at the time). I was physically ill – sick to my stomach, as I spent six hours trying to figure out how the hell I would to tell the kids that their dad was gone; and how the hell I could be strong and carry on so I didn’t screw them up for the rest of their lives. And I spent six hours refusing to read the good-bye letter he had written and given to Rebecca to give to me.

I learned over the 10 days Nathan was in the hospital that the single best feeling in the world is relief, followed closely by hope. When Ben, one of our favorite ICU nurses came in around 5 a.m. to say that they were stitching him up, there was that glorious feeling of relief – he made it. When he said his vitals looked stable, there was that glorious feeling of hope – this could work out. We were by no means out of the woods yet, but that little bit of relief and hope were enough to push me through until the next big questions – did he have a stroke? and is he paralyzed? – were answered.

Dr. Hill came out and talked with us, and seemed pleased with how the surgery went. I remember noticing how much his demeanor had changed. He was hopeful that Nathan would be able to exercise again, although he would no longer be able to play basketball. He told us how Nathan was put on the heart and lung machine, and his body was cooled (to 82°F) while they performed the Bentall procedure. He informed us that part of his aorta was replaced with a Dacron sleeve, and he now has an aortic valve that we’d be able to hear tick. He mentioned Marfan Syndrome as a likely cause, and although that has since been cleared of being the culprit, we took a bit of comfort in knowing a possible answer to the question “why.”

I was surprised at how quickly we got to see Nathan after surgery. His mind came out of the anesthesia quicker than his body, and he did not like the breathing tubes in his mouth, but he was not yet breathing on his own. I remember telling him not to try to pull the tubes out, and getting a huge eye roll – and right then, I knew his mind was A-OK. We had to get him breathing on his own before they could take the tubes out. We learned so much (more than we ever wanted to know) about all the machines and equipment. When the output was grey on the screen, he was breathing on his own. I would tell him to breath, and I could tell on the screen he was listening to me and breathing on his own. At one point I said “hey, he’s listening to me!” and with his eyes closed he held up his thumb and his pointer finger as if to say “just a little bit.” And that small gesture was huge – it meant that the Nathan I know and love, was right there with me.

The next day and a half was a flurry of activity in the ICU. Dr. Hill was happy Nathan didn’t need any blood transfusions, and everything seemed to be going great. The first 12 hours in the ICU after surgery were busy, and our nurse, Nelia, was on her toes the entire time. Nathan still had the breathing tube in his mouth when she was signing off of her shift, but he made a point to sign “thank-you” to her to show his appreciation.

Slowly machines and tubes were removed from his body, and he was moved from the ICU to the cardiac floor on day 3.

We (I always had some combination of Gary, Susan and/or Rebecca with me) obsessed over every blip, beep, bell, test and measurement they took. Nathan got up to go for a walk. He went to the bathroom on his own. He was pretty coherent, and pain was manageable. It seemed to be going well until the evening of the fourth night.

Nathan was in excruciating pain. He couldn’t stay in one position, he couldn’t get any rest, and he wasn’t super coherent. He would try to sit up to get comfortable, and his oxygen levels would tank. I was running out to the nurses station every fifteen minutes – this couldn’t be right, could it? How could the pain be getting worse, and not better?

At one point, I was told to keep encouraging him to take deep breaths, so I did what I was told: “NATHAN, YOU HAVE TO BREATHE!” I yelled – this was serious business. He hadn’t said anything in hours, but he mustered up the energy to whisper back, “Krista. I didn’t lose my hearing.” Even through all this, Nathan was the one keeping it real and making me laugh.

The next day, his blood pressure continued to drop, as did his oxygen level. They tried everything to to help, including tipping him upside down in the bed. The nurses finally called the doctor in and they decided to re-admit him to the ICU. We were on high alert again, and all the anxiety and fear started rushing back. I remember crying to the doctors and nurses, and asking them if I needed to have my kids come see him right now (they were scheduled to come see him the following day). I knew this was a horrible question to ask and a terrible position to put them in, but I needed to know: did they think he was going to die? Something was definitely going wrong, and they weren’t quite sure what yet, but they kept me calm. They always had a plan, and as a planner, that made me feel better. In retrospect, I’m thankful I stayed away from Googling all this stuff until after I got home, because I probably would have had my own heart issues if I had done so.

At this point in the story, I need to give a huge shout-out to all the amazing doctors and nurses that helped us. We were told by numerous people that Dr. Hill was one of the best doctors in the country at performing this particular surgery (the phrase “world famous” was used). Dr. Hill also kept telling us that he had a scheduled day off, yet we kept seeing him – either in scrubs coming out of surgery, or making rounds checking on patients. He finally decided to take a well-deserved day off, and Dr. Dubose filled in for him. When Dr. Dubose came in to take a look at Nathan, he presented me with this little sandwich baggie with flower petals in it:

aorta 4
He said he was with his 4-year old daughter when the call came about Nathan, and he explained to her that he had to go help a daddy and his family, so his daughter picked those flowers to give to us to make us feel better. So when I say we had amazing service, these are the kind of things I’m talking about.

Dr. Dubose suspected that Nathan may have some excess fluid, and explained that they could do a simple procedure to relieve the fluid if that was the case. They took him for a CT scan to confirm.aorta 2

Turns out it was worse than anticipated – Nathan was experiencing cardiac tamponade;
basically he was bleeding internally into the sac that surrounds his heart, and he needed to be rushed back in for another emergency open heart surgery to repair it. I had only a minute to talk to Nathan, and was at a loss for words. I was trying to have a “moment” with him, in case it was the last, but what do you say? I started with, “Nathan, you are strong -” and before I could get any further, he interrupted in song and continued “no one can tell us we’re wrong….searching our hearts for so lo-ong.” So on that note – singing Love is a Battlefield – he was swept off, leaving me half in tears and half cracking up.

This surgery went pretty quickly. We were waiting in the family lounge off the wing of the Dr. Jonathan Hill “Hall of Hope” – Dr. Hill even has his own hall named after him for all the contributions he’s made to the hospital and treating cardiothoracic traumas.
Photo in the “Dr. Hill Hall of Hope”
aorta 5

I was sick to my stomach (again), so at one point I got up to go to the bathroom,and I heard someone whistling walking down the hall….I turned and saw it was Dan, another one our favorite nurses, coming to look for us. I thought to myself that he couldn’t possibly be coming to deliver bad news if he was whistling, but still braced myself for the worst. He said everything looked stable and they were sewing him up – relief. Shortly after around 8 p.m. on May 11, Dr. Dubose came out with a great OR report – everything went really well – and I don’t know if it was sheer exhaustion or what, but the feeling of relief was so great I almost felt intoxicated I was so happy. He explained that it’s very rare for someone to have cardiac tamponade 4 days post-surgery (if it’s going to happen, it usually happens within the first 48 hours following surgery), but it was all fixed. Yay!

When we went back to Nathan’s room in the ICU there was the flurry of post-op activity, but it was different, and the euphoric feeling faded pretty quickly. His chest tubes were bleeding – a lot – and there was someone there specifically “milking” the blood through the tubes to keep them clear. This went on for hours through the night, and things didn’t feel right. They gave him blood transfusion after blood transfusion (or FFP for “fresh frozen plasma” as those of us in the know call it). It was not going well. We peppered the nurses with questions, and I remember hearing Dan say “get Dubose on the phone, I need some answers.” The directive was clear – his bleeding needed to slow down significantly by 5 a.m., or they were going to have to take him back in.

We watched helplessly as he continued to bleed, all night. Finally at 4:30 a.m., Dr. Dubose came back and told us that he couldn’t wait any longer, and they needed to take him back into the OR. He wasn’t sure what was going on, but the only thing to do was to open him up and find out. Dr. Dubose asked how I was holding up, and I was a wreck. I could see that he felt horrible – he had just left us telling us everything was going great, and there we were again, less than 12 hours later, having to say goodbye before they cut open his chest and break open his sternum (although there probably wasn’t much breaking involved by this, the third time).

Nathan still had the breathing tube in his mouth, a central line in his neck and was pretty heavily sedated, so he wasn’t able to speak, but as I said goodbye and told him I loved him, he held up his fingers in the shape of a “W” and with that I knew exactly what he was saying: All I do is win. It was his way of telling me everything was going to be OK. So again, in the middle of a life-threatening issue and he’s trying to make ME feel better. Pretty amazing.

The third surgery took a bit longer than the second. When it was over, Dr. Dubose came out again, and worried he’d lost some credibility with us, tried to convince us that it truly went well. He said there were a few clots he cleaned up, but other than that, everything looked good. He left Nathan open for some time just watching his heart beat, and made every doctor and nurse in the room come over and look at it to ensure he didn’t miss anything. He told them, “I have to go back out and face that family again, and I need to make sure everything is OK here.” Relief was a little harder to feel after the roller coaster we’d been on, but that news was the single best Mother’s Day gift I could ever get.

Nathan seemed to bounce back after that surgery. Maybe I’m exaggerating a little, but that’s what it felt like. It was literally night and day – he came around pretty quickly, all his vitals looked good, his bleeding was normal.
Chest tubes with “normal” blood flow.

Thank goodness, as this was the day the kids were coming up to see him. Originally we planned on them coming that day because we thought Nathan would be close to going home, and we hoped he’d be feeling well enough to walk around and talk with them. We didn’t anticipate surgeries #2 and #3.

When Mia and Alex got there, he had been out of surgery for a few hours, and while he was doing “great,” he still had machines hooked up all over him. I had to prep the kids with what they were about to see. I explained to them that daddy just had another surgery, and he had a tube down his throat so he can’t talk very well or very loud, he has a lot of machines hooked up to him, and he’s still very sleepy.

Even with the preparation, it was still scary to see the person who is the rock of our family like he was – I could see the tears in Mia’s eyes. Alex thought it was pretty cool that Nathan had a “glowing finger.” Apparently he had been bragging that his dad is now a cyborg (due to his mechanical heart valve).
aorta 3
Nathan was able to say hi – but just barely. If you talked to him, he’d open his eyes and try to respond, but not long before he fell back asleep. It was good to see them – Nathan and I have never both been away from them for more than a night. So to suddenly be have both of us gone for a week was hard. It was also hard for them to imagine what was going on, so it was good for them to see him with their own eyes. The good news is that I got to see my mom and my kids on Mother’s Day – not under the circumstances I would have liked, but we are all about the silver linings.
In the ICU “suite”

The next day things were going good and Nathan wanted to try to stand up. He got up successfully, but as he was sitting back down, he mentioned his heart felt funny, and at the same time all the alarms started going off – his heart went into atrial fibrillation. I really started to question how much a human body could take (his physically and mine mentally). Dr. Dubose explained and reassured us that the heart is really resilient (the brain? not so much. but the heart can “take a joke”). We were told that this was a really common complication that is an easy fix. At that point Susan and I had to get out of the room for a bit just to take a break and try to eat something. Gary stayed with Nathan while Susan and I went to the cafe – and it was within an hour that Gary sent a text saying his heart clicked back into rhythm and things were looking good again. Ahhh, relief.

That was Monday, May 13th, and the last major complication. They talked about moving Nathan out of the ICU, but they were waiting for a bed to open up. It was the perfect scenario – he was well enough to be moved, but he was still under the ICU care.
aorta 8
He was finally moved back to the cardiac floor on May 15th. Things were going well – his kidney and liver function had suffered due to all the blood loss, but the numbers were on the rise with every test. Echocardiograms and CT scans all looked good. He was eating. He got to shower and shave. We were happy.

The last trick was to get his INR level (blood clotting factor) up….but they agreed we could give Nathan injections at home for that (and by “we” I mean “Nathan” – I think we all know how I am with needles). He was finally released from the hospital on Friday, May 17th. Hallelujah! aorta 6

At-home recovery probably deserves a blog of it’s own – it was not easy. It was super scary to go from round-the-clock care to nothing. I think we ended up back at the hospital the following week 3 different times, just because we weren’t sure what constituted normal healing vs. something to be worried about.
aorta 9
One of the most amazing parts, though, is how much support we had. My parents and brother jumped on a plane as fast as they could to come out and stay with the kids. Friends started a meal train for us, and we had meals delivered to our house every night for over a month. Nathan got a brand new La-Z-Boy, our house got cleaned, the kids got picked up and taken out, people sent cards, gifts, messages and prayers. The list goes on. It was simply amazing, and I’m not sure what we would have done without our village.

It’s hard for me to reconcile – even to this day – how something like this can happen to someone like Nathan. Nathan, who has never smoked a cigarette in his life, who drives exactly the speed limit, who exercises regularly, who eats a vegetarian diet, who doesn’t even drink coffee, and who lives his life always trying to “do the right thing.” But one thing is certain – all the positive choices he’s made in his life combined with his champion attitude all came into play when it counted the most.aorta 1

On a final note, I truly can not say enough about the team Nathan had Legacy Emanuel. Dr. Hill and Dr. Dubose were amazing, but in each surgery, there was a team of other doctors/specialists (cardiologist, anesthesiologist, nephrologist, PA’s, etc) that all played an important part. Many of those people we never met, so the following is only a partial list. A huge thank you goes out to:

Dr. Hill
Dr. Dubose
Dr. Farris
Lauren Ciolli (Dr. Dubose’s PA)
Scott Frazee (Dr. Hill’s PA)
Nelia
(Dreadlock) Sue
Mary
Andrea
Stephanie
Mikki
Heather
Dan (who we had 4 times)
Ben
Yvonne
Kristin
Katie
Sam
Tim
Marjorie
Lacy
Peggy
Marla
Renee
Kathy

You are all amazing!

Steven Riley-49

Name: Steven Riley
Email: steven.riley@det.nsw.edu.au
Age at time of Dissection: 49
Type of Dissection: Ascending
Date of Aortic Dissection: 25 September 2012
Tell Us Your Story:

Hello, I’m Steven – aged 49, high school teacher/librarian, married with children. I live in New South Wales, Australia. This is my story. It’s a bit of a detective tale, but I hope it might shed some light on the aortic dissection (AD) experience.

It begins with a car accident. I’m driving home after work through a heavily wooded landscape. My health is ok, although I’ve had an odd watery kind of asthma lately. Another motorist fails to give way at her stop sign, and crashes into my car. I try and swerve to avoid the collision. Her car sustains minor damage. On the other hand my car leaves the road at top speed, flips, rolls several times, catches fire in the engine bay. As a passing motorist runs up and uses his fire extinguisher on my car, I casually brush broken glass out of my hair, step out of my vehicle. My car is a total wreck but somehow, miraculously, I have survived with not a scratch! An ambulance arrives and I am taken to my local hospital.

I have an asthma attack while waiting to see a doctor. But after an examination I am told “That’s not asthma. We’ll keep you in hospital and run some tests”. I am given an echocardiogram. Initial diagnosis – heart failure, fluid on my lungs, heart valve needs replacing eventually. A dietician visits me and tells me I’m on fluid restrictions, and that the doctor will be discharging me within a few hours. Great news.

Then a dramatic turn of events. The medical registrar visits me with some news. They have detected a tear in my aorta. A CT (computed tomography) scan is organised. After the scan the registrar tells me something that I will never forget. The tear runs from the top of my heart down to my groin! It’s known as an aortic dissection – a medical emergency of the first magnitude. She tells me that I am the luckiest person she has ever met (it should have already killed me!), and that I have a %70 chance of surviving the operation. My wife and son arrive. We are all upset (an understatement).

I am bundled into an ambulance and with sirens blaring and lights flashing, I am hurried from my local hospital to the larger surgical hospital. I arrive to see a team of surgeons, anaesthetists and nurses assembling. The open-heart bypass surgery lasts seven hours.


The operation is a Bentall procedure: the ascending aorta and aortic root is replaced with a Dacron graft, the aortic valve is replaced with a mechanical valve. It sounds simple. But the surgeon has since told me the operation is the “Rolls Royce of heart procedures”, that it has the highest mortality rate of any heart operation.

Now begins many days of pain, medication, physiotherapy, depression, psychological dislocation, hope. Sometimes all of the above in the same day!

But a question remains – when was the dissection? When did the lumen (inside wall) of my aorta develop a tear? The doctors question me closely about my car accident – no, I never lost consciousness during the accident; no, at no time did I feel any level of pain during the roll over; yes, I was wearing my seat belt the whole time. Nothing. They ask me about any severe pain in the last couple of weeks.

Then it dawns on me… About eight weeks before the accident a strange and frightening incident unfolded. I had gone to bed around ten o’clock. About 30 minutes later I felt awful heartburn and pain in my gut. It became more severe, the chest pain developed into something agonizing, the pain then moving into my left leg. I fell out of bed, screaming. It looked like a heart attack. My wife rang an ambulance. Then something odd – between the terrible pain and the arrival of the ambulance the pain subsided.

All I wanted to do was empty my bowels. I assumed it was some kind of gastroenteritis. The paramedics arrived and gave me an ECG. No adverse results. They took me to my local hospital where the doctors diagnosed gastro. The chest pain confused them, but they failed to test me with a CT or echocardiogram. I don’t really blame them: aortic dissections are rare, and require a lot of suspicion on the part of medical staff.

The important part to remember is that after my dissection I walked around for eight weeks before my car accident! Eight weeks! Consider this: Risk of death in untreated aortic dissection – 25% in first 24 hours, 50% in first 48 hours, 75% in first week, 90% in first month. And I had been going about my normal life – working, gardening, driving, cooking, getting stressed – for eight weeks before diagnosis! No wonder my cardiologist calls me the luckiest person he’s ever met!

Since then I’ve been back in hospital for a week with pericardial effusion – or fluid around the heart. This is a fairly common response to heart surgery and requires a course of medications, including diuretics to clear the fluid.

What’s the conclusion to all of this? Well, there is no conclusion (except the Big Sleep, which is everyone’s conclusion, and is hopefully a while away yet). Careful monitoring, management, lifestyle changes – these are the outcomes. I still feel very very lucky.

Thomas Grabowski-44

Name: Thomas Grabowski
Email: grainwetski@gmail.com
Age at time of Dissection: 44
Type of Dissection: Ascending
Date of Aortic Dissection: 3 November 2011
Tell Us Your Story:

I was getting dressed for work one Thursday afternoon when I felt a pain like nothing else I’d ever experienced before. My experience was a sudden, very intense, quick radiating pain starting from the centre of my chest- feeling like fire. I was so rocked by it that I couldn’t open my flip cel phone to call me wife on the main floor of our house. DO NOT IGNORE SUCH AN EVENT AS I ALMOST DID- GO TO A HOSPITAL. I WOULD NOT BE TYPING THIS IF I HAD LISTENED TO MY SECOND REACTION AND JUST TRIED TO REST. DO NOT REASON WITH YOURSELF. Once my wife had driven me to the hospital ( I chose this route as we live six blocks from a hospital and would in emerg before the ambulance would have gotten to our house- I encourage everyone to call 911 immediately ), I was admitted after initial triage. Blood tests showed it wasn’t a heart attack, and morphine would not subdue the pain.

I was transferred by ambulance to St. Boniface Hospital – a Centre of Excellence for cardiac care- and in quick measure was given a CT scan. I was wheeled back to the ER and almost immediately was told I would be prepped for surgery. I knew it was quite serious when the asked if my wife was there, to which I responded ‘no’, and they asked if I had anything to say to her before I went under, since I might not be coming out. My acute ascending aortic dissection required emergency surgery. The surgical team came in one by one over the next few minutes and introduced themselves, then i was wheeled into the operating room. The heart and lung machine looked intimidating. I was given two injections, one in each hand- one feeling warm and one feeling cold- and that’s all I remember until…

Fourteen hours of surgery and two days of deep medical sedation later, I woke up weak and intubated. They noticed I was awake and asked me some cognitive assessment questions, and I spent the next two days trying to write on a pad, as they kept me intubated for a few days following surgery. After I was extubated, they started to get me on my feet, and slowly learned the proper way to stand up without the use of my arms and chest muscles, and try to walk very short distances with oxygen and a walker. Having people hold you up, helpless, and wipe your bum for you is a very humbling experience. After several days in the critical care unit I was transferred to the ward, where I spent the next six days piecing together what exactly had happened to me – I didn’t learn the true gravity of my situation until I hit the internet once i was discharged.

The info the doctors told me after surgery was new knowledge so I had trouble processing and understanding it, as I had no context or frame of reference, and had never,ever heard of an aortic dissection before. DO NOT BELIEVE EVERYTHING YOU READ ONLINE ABOUT THE CONDITION- TRUST YOUR SURGEON AND DOCTOR (everyone is different, so your experiences will be slightly different that that of others’). My weakness continued on ward, and I suffered hypotension due to medication once I got home; Don’t stand up too quickly or you’ll pass out- a bad scenario with a sternum laced together and not yet fused.

After several months of sleeping exclusively on my back, I started with small excursions out of the house for walks. Easy does it; a few houses away then back home. Later in the week a few houses further then home- slowly going further and further until I could make it a regular activity. KEEP MOVING AFTER YOUR SURGERY. DO NOT WALLOW IN PITY OR BE AFRAID TO MOVE- JUST BE PRAGMATIC AND CAREFUL.

I just passed my one-year anniversary- or as friends and family refer to it, my first birthday of my second chance, or my ‘aortaversary’. I’m down sixty pounds and maintaining, haven’t smoked for one year – when you wake up after surgery with a tube down your throat, quitting is surprisingly easy- and have now included light swimming into my routine. every day is a test, and I have good days and bad days, but I eat very healthily and look forward to every moment I’ve been granted. I am grateful, humbled, and reflective, and love every minute of it.

Be strong, be well, and live. Every pain is not a recurrence. every twinge is not another episode, but be conscious of your body, and treat it well.

Tony Purtell-42

Name: Tony Purtell
Email: mpurtell@frontier.com
Age at time of Dissection: 42
Type of Dissection: Ascending
Date of Aortic Dissection: 15 February 2011
Tell Us Your Story:

This is the short version of my story. I will work on a better version, and submit it later.

On February 15, 2011 I was at work in my office at Midgley-Huber, when I began to feel weak. I had neck and back pain and felt a need to lie on the floor. I told my boss to call 911 and that I think I was having a heart attack. An ambulance rushed me to the hospital. They ran some tests on me and found out after extensive testing, that I had an ascending aortic dissection. The doctor said that it had dissected from “stem to stern”. I guess that I have had HBP for years.

I lost 4.2 Liters of blood during the dissection, causing my blood pressure to plummet; I had 27 strokes, my body started shutting down, I lost a kidney (my good kidney is only about 30% functional), I was on dialysis for a while, got a staph infection MSSA (Methicillin-Sensitive Staphylococcus Aureus),urinary tract infection, a bladder infection, and was in a coma for two and half weeks. I have (hyper-sensitive) neuropathy in my left leg and foot from nerve damage. If I step barefoot on an extension cord strung across the carpet, it is excruciating. The staph infection got into my lower sternum and they had to remove it. Now it clicks sometimes when I lay on my side.

The neurologist told my wife that I would need constant supervision, continuous around-the-clock care, and that I should not be left alone, as I might burn the house down. It is a miracle that I am alive today. I had to learn to walk again. The recovery has been amazing, but slow. My wife was by my side the whole time. I am now driving, after retesting to assure everyone that I am a safe driver.

Amber Dulyanai-45

Name: Amber Dulyanai
Email: amberdulyanai@yahoo.com
Age at time of Dissection: 45
Type of Dissection: Ascending
Date of Aortic Dissection: 25 February 1965
Tell Us Your Story:

One night I’m on the phone with my boyfriend. I’m grumpy with him. I’m in a great deal of back pain, I think I’ve pinched a nerve in my back. I’m short of breath. I believe,due to my ex’s threats of custody, I’m having a panic attack. So I get off of the phone, take two Advil and two sleeping pills and go to bed. The following morning I take more Advil and go shopping with a girlfriend for my sons birthday. Apparently I’m such a grumpy JERK while out shopping my girlfriend asks me what is wrong with me.

I tell her I don’t feel good. God bless girlfriends! She had a fancy phone on her, Googgled my symptoms and said “we need to go to the hospital, it says your having a hart attack. I was (short of breath, saver back pain, nausea, and a strange and mild numbness in my left arm) You would think that would be a no brainier, but I never get sick. First we went to urgent care. They did an ekg. nothing showed, but the doctor said there was definitely something wrong, and called ahead to the hospital. All of my memories from here on are fragmented, so I have depended on those closest to me to tell me my story. My aorta was blown up like a balloon.

They took x-rays to fined an artery they could use to graft. During the x-rays they found kidney cancer.My aortic surgery was 11 1/2 hours. They said my hart and lung machine was turnd off for 18 minutes so he could work. This was done three times in all. They kept me in a medical coma, not sure how long. The tube down my throat to feed me, I was told I kept pulling it out. During one of the times they replaced it, it tore my vocal cords and paralyzed my throat.

I was in the hospital for three weeks. During that time I also had throat surgery to pull the remaining vocal cords together so I could at least speak in the future. No one told me I needed rehab. I am dealing with chronic pain. I think I’m dealing with depression. My long term memory is good, but my short term memory is shot. I was athletic, dancer, gymnast,etc… I also sang. I had a vary nice voice. I come home from work and sit, because that do’s not hurt. I no longer sing, and the only time I listen to music is in the car, so I can’t here my self sing. Thank god I have a job! Thank god I’m up-rite! My surgeon had said to me ” Every time I see you you amaze me.” “I never expected you to get off the table. When I came home my identity was lost. I wasn’t the person I once was. I had no idea who I was. I’m still finding that out.

Lance Tibbetts-42

Name: Lance Tibbetts
Email: lance.tibbetts@unh.edu
Age at time of Dissection: 42
Type of Dissection: Ascending
Date of Aortic Dissection: 11 July 2011
Tell Us Your Story: Aortic Dissection Survivor

Ihave always been a healthy individual, played sports in High School, enjoyed golfing and hanging out with my wife and kids. I had my most recent physical back in October of 2010 and all blood work and EKG and blood pressure looked great. So what happened to me this past summer in July just shook my family to the core. On July 11th while at work taking care of the Athletic Grounds for the University of New Hampshire, I suffered my first symptoms of an Aortic Dissection. I was mowing our game soccer field and felt a rush of blood to my head. It went up both sides of my neck, proceeded to create “lightening” bolts in my eyes before it went down into my back and chest. I was all alone on the fields that day which consist of 55 acres.


As I struggled to breath I remembered thinking “just relax, you can breathe through this, you have one more field to mow”. Typical guy I would say. I tried to work through the pain and labored breathing until I couldn’t take it anymore and called my wife and then I got in contact with my primary care physician and was encouraged to go to the ER. I had one of my coworkers drive me the 8 miles to the ER Department and was admitted. While there they performed an EKG (which I think is a joke), chest x-ray and did blood work.

After spending 6.5 hours in the ER, the doctors told me I suffered a Migraine and they wanted me to see my Primary due to the fact they heard a murmur. I proceeded to tell them I have never had a murmur and they still didn’t do any further testing. Mind you my last 1.5 hours in the ER where spent sitting in a chair in the hallway, because they needed a bed and I wasn’t a priority anymore. So, I was discharged and proceeded to drive 1.5 hours home with my Aorta dissecting. When I got home I immediately tried to relax, but I was in too much discomfort. Later that night when my wife and I went to bed, I was sitting up and looked at her and said “Honey, I am going to die tonight”. Well after that comment I was on my way to ER #2. Once again we drove in, we should have used the Ambulance. We spent another 6 hours in the ER with the doctors proceeding to tell me I had a severe chest pull. All they did was look over ER #1’s lab work and test. Even though I mentioned I felt like I was going to die, the ER doctor in charge said I didn’t meet the profile for further testing.

They heavily sedated me and sent me on my way. I stayed out of work and saw my Primary where he proceeded to order a CT Scan through Cardiovascular Consultants. I was not able to get in until the 22nd of July. I went back to work on the 18th of July on nonrestrictive duty and proceeded to work in 90 plus degree days mowing, painting fields and lifting 50 lb bags of fertilizer all week. I went to my CT appointment on the 22nd, I walked into the appointment with a coffee in hand and the tech immediately gave me a echo and then excused herself and left the room.

At that time a doctor came in and said “Mr. Tibbetts, you are going to the hospital for emergency surgery, you have an Aortic Dissection”. My response was “at least it is not a heart attack”, that is where they proceeded to tell me the severity of what I had. I called my wife and told her I was having a procedure in the hospital and she needed to get in ASAP. By the time my wife showed up I was already 20 minutes into surgery. When I arrived in the ER via Ambulance, Dr. W met me at the door and asked me if I was a religious man, I said yes why? Dr. W said I was going to need gods help to get through this. Dr. W told my wife that it looked like a bomb went off in my chest.

My aorta was torn from my heart past my aortic arch. About 7 inches total. I spent 99 minutes on bypass and my aorta wasn’t repaired, it was replaced. During the operation, clergy were called in twice to administer the anointment of the sick, and my family was being prepared for the worse. Dr. W, came into the family waiting room raised his hands and said “It’s a miracle”. Now the only concern was brain function. I went 9 minutes longer than anyone ever did on bypass for Dr. W. Well, I had a CT of my head and everything looked good. During the CT they saw 5 more areas of concern with my heart and aorta.

I proceeded to have a angioplasty surgery and thankfully everything came out okay. For someone who wasn’t expected to make it off the table to be able to write this is truly a work of god. I am trying to piece my life back together. It hasn’t been easy, I still struggle daily with cognitive issues and I have started to see a Therapist to deal with all the emotional baggage that comes with what we go through surviving something like this. I will leave you with some advice…..If you ever feel you are having a heart attack or a dissection, call the ambulance. Don’t drive, have the professionals take you in and fight for the right test. Get a CT or an ECHO and fight for you right to live.

I wonder if things could have been different if it was detected 10 days earlier.

Lance T
New Hampshire

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Terri Diewold-48

Name: Terri Diewold
Age at time of Dissection: 48
Type of Dissection: Ascending
Date of Aortic Dissection: 25 August 2010
Tell Us Your Story:

The day that changed our lives was August 25, 2010, my husband had felt “heart burn” and a sore throat while at work. 4 hours later he was sent by ambulance to the hospital for what they thought was “heatstroke”. 5 hours after I met him at the hospital, he was undergoing surgery to replace his aortic valve, with a mechanical valve, and they also grafted in a new aortic artery. It was the longest night of our lives, surgery was approx. 10 hours.

He made it through the surgery with a few complications..he had A Fibrillation which in October of 2010 they performed a Cardio Adversion which got him back in rhythm. Since the surgery he has what we call “episodes” where his heart will race and his blood pressure will peak and he gets chest pain that will last approx 10 minutes. It is controlled by meds so his “episodes” are only few now. His right side of his heart, we were told right after surgery wasn’t working properly, they said it was probably in shock from the surgery, but now 1 1/2 years later, it is still the same.


They are also watching him for an existing tear in his artery (which is being watched and he is on meds to keep his blood pressure and heart rate down). He also has extreme fatigue. We are ever so thankful that he made it through and that we still have him here today, as we were told that if it was anyone else, with the damage that he had they would not have made it. He is doing well, the Cardiologist now says that what he has now is the best that he is going to get and that there is nothing else that they can do for him.

He cannot work, as even a little activity exhausts him. He is quite upbeat most of the time. Since September of 2010 when he was released from the hospital we have felt like we’ve been left out in left field and have pretty much found most of our information from our own research. Most people don’t understand what we have been through and are still going through. Most people look
at him and say when are you going to be back to normal? I don’t care about normal anymore, just that he is here.

Contact Terry

P.S. Thanks for stopping by to view our stories. Please help me keep the site going by shopping at Amazon.com-It’s very much appreciated. Brian Tinsley founder of AorticDissection.com Shop Amazon’s Gift Cards – Perfect Anytime

Todd Seger-46

Name: Todd Seger
Email: ondeckinc@msn.com
Age at time of Dissection: 46
Type of Dissection: Ascending
Date of Aortic Dissection: 29 January 2011
Tell Us Your Story:

It has been exactly one year now! I waited to post this until I survived one year, so I could give thoughts of you reading this from your beds, HOPE. Last year I was putting out the trash and smoking that last cigarette for the night. Don’t Smoke! Sharp pain in my chest, different then the times before…

Told myself stay calm get inside to my wife Suzanne… Honey stay calm get your keys and drive me to the hospital. She was white as a sheep. She did drive faster then ever before. When I got to the hospital they ran all the normal cardiac test and said they couldn’t find anything wrong… But just to be on the safe side lets get a Cat Scan.. I went to the x-ray dept. at the regular pace… But on my way back down the attendant was running… I knew things were now, not all right.

The doctor in the E.R. stated that my aorta had split apart and that it was not good. He asked if I’d like to have the priest come down. My wife started crying.. I said, How bad is it? Answer: You most likely won’t survive the surgery, if you would survive, you will more then likely be paralyzed or have brain damage…. I gathered myself in the face of death. I’ve been here before in the military as a medic for the Marines. Nurse can you get me a power of attorney and a do not necessitate form please.

The E.R. doctor told me he had called the surgeon and he’s one of the best in the country and he’s on his way.. We are going to get you ready for surgery now. My wife and I spoke with the surgeon 2 minutes before they rolled me in and I asked again, what are my chances Doc? 5% he said, but I’ll do my best. My thoughts went straight to my 11 and 12 year old daughters from my first marriage, Celine and Alaina…I won’t get to say goodby or tell them how much I love them….They will end up reading it in a old birthday card or Christmas card… Very Sad! My step daughter and her boyfriend showed up to help my wife through the long night ahead… 12 hour surgery…Thanks Kim, Thanks Greg.
Three days later I woke in a semi standing position and I couldn’t believe I survived…. I had made my piece with God and was ready to go… But I made it… I wasn’t that religious before but I thank God a lot now.


9 days in intensive care, 1 day on the ward, 3 months in and out of my own bed, and the feeling that life would never be the same. I know during the first three months home my wife wished she had drove a little slower getting me to the hospital…

Little by little you get more strength and energy, You can’t help it when your lifting all thoughts pills to your face…Ha Ha. Eat smart, no smoking, and exercise, and try and stay calm, even when the jerk in front of you can’t drive. My wife would ask me why I don’t take my own advise…here.
I was back to work in month 4.. doing light supervising, month 6 doing light lifting, month 8 took a 3000 mile trip to Florida… Yes fly….

Today is 01/29/2012, No smoking for one year today, my steel cut oats got cold writing this.. I’m going to the dump today to clean out a trailer of roofing material from a job I did yesterday… I lost 35lbs., gained a new perspective on life, and plan on seeing my daughters give birth someday…. LIFE!

P.S. Thanks for stopping by to view our stories. Please help me keep the site going by shopping at Amazon.com-It’s very much appreciated. Brian Tinsley founder of AorticDissection.com Shop Amazon’s Gift Cards – Perfect Anytime

Good Luck, and know that I was once reading these blogs, just like you.

Thanks for stopping by to view our stories. Please help me keep the site going by shopping at Amazon.com-It’s very much appreciated. Brian Tinsley founder of AorticDissection.com (please book mark the link once you get to Amazon.com for future purchases!)

Jonathan Kern-47

Name: Jonathan Kern
Email: kernjonathan@att.net
Age at time of Dissection: 2009
Type of Dissection: Ascending
Date of Aortic Dissection: 19 October 2009
Tell Us Your Story:

I am a radiologist. I found my 5.5cm ascending aortic aneurysm by accident. My doctor wanted to check my kidneys by ultrasound because of new onset hypertension at age 47. I did an MRI (for free) instead. I accidentally saw the aneurysm, confirmed it by CT angiography, and had bicuspid valve replacement and ascending aortic graft placement in October 2009.


By the way I am convinced hypertension is a side effect of bicuspid aortic disease. Also I did not have valve stenosis or regurgitation, but still had a significant aneurysm.

What I want to ask others is this: did you have severe generalized anxiety or panic attacks in the years, or decades, before diagnosis, and did aneurysm excision cure it? For me, the answer is a resounding YES. Labile hypertension is associated with the bicuspid aortic disease/aortic coarctation spectrum of disease.

If anxiety attacks are a chronic manifestation of aortic aneurysm with labile hypertension, I hope it gets more awareness.

Thanks for stopping by to view our stories. Please help me keep the site going by shopping at Amazon.com-It’s very much appreciated. Brian Tinsley founder of AorticDissection.com (please book mark the link once you get to Amazon.com for future purchases!)

Kurt Kempt-48

Name: Kurt Kemp
Email: kurt.kemp@gmail.com
Age at time of Dissection: 48
Type of Dissection: Ascending
Date of Aortic Dissection: 12 December 2011
Tell Us Your Story:

The evening of December 11th I was playing a part in our church’s Christmas Cantata. It was a readers theater so I had to stand up and sit down frequently. When I stood up for my first lines I got really dizzy and almost passed out. I completed my lines and sat down. The dizziness remained and I started feeling a “squish” in my chest every time my heart beat. Then I started getting sharp pains in both elbows.

I made it thru the cantata and drove home immediately afterwards. When I got home I could not get comfortable. My wife stayed up with me and at 1am chest pains started and we drove to the ER in Saginaw MI. They rushed me in as a “possible heart attack” and the EKG showed it was not. They x-rayed my chest immediately, then when they saw my Aorta they sent me for an immediate CT scan. They came back to me and said my Aorta was 3 times it’s normal size and dissecting severely. I was immediately wrapped up and flown by chopper to UofM in Ann Arbor where I went shortly thereafter into surgery.


I was in the ER in Saginaw about 1 hour. Everyone involved said it was a miracle I was alive when they opened me up and saw what had happened. Surgery was 17 hours. I was in ICU for 4 days, then released from the hospital 3 days later. I have had nothing short of a miraculous recovery and it’s only by the grace of God I am here today. Yesterday was January 18th, 2012 and I started back to work full time in my office. From miraculously alive to working back full time in 5 weeks. Amazing.

Thanks for stopping by to view our stories. Please help me keep the site going by shopping at Amazon.com-It’s very much appreciated. Brian Tinsley founder of AorticDissection.com (please book mark the link once you get to Amazon.com for future purchases!)

Traci Taylor-41

Name: Traci Taylor
Email: oohredhot@hotmail.com
Age at time of Dissection: 41
Type of Dissection: Ascending
Date of Aortic Dissection: 21 December 2011
Tell Us Your Story:

It was 6:45 am and a typical work day for me….or so I thought. I was getting out of a particularly warm shower when I felt a sudden sharp stab of pain going through my chest, neck and ears. I immediately saw nothing but black and then tiny stars.

I managed to make it out of the bathroom and collapse onto my bed. My first thought was “I am having a heart attack!.” I reached for cell phone, falling to the floor, and called my mother who lived 10 houses down the street from me. She arrived in a few minutes and got to my landline to call 911.

The entire time lapse from pain to paramedics was about 7 minutes. Paramedics arrived on scene to transport me for “possible heart attack”. Once I arrived at the hospital, it would be another 30 hours in the ER before the doctor found the Dissection through CT Scan. Everything moved quickly after that.


I was packaged and transported to another hospital where a surgical team was waiting. My parents were told they needed to say goodbye in case I did not make the long drive to the other hospital. After a 71/2 hour surgery to repair the dissection and blown heart valve, I spent 7 days in the hospital, I do not remember the first 3.

Now here I sit, recovering, 9 days later! I never thought that I was going to make out of my house alive and now I am days into my home recovery.

My Dissection was an unfortunate result of uncontrolled HBP. I never paid enough attention! I ate what I pleased, I was an avid softball player, and I thought that was enough. I took blood pressure meds, but had not seen the Doctor in 6 months!!!!

I now know, that I need to take full control of my pressure and make sure i follow all of the guidelines to try and prevent any future issues.

Traci

Thanks for stopping by to view our stories. Please help me keep the site going by shopping at Amazon.com-It’s very much appreciated. Brian Tinsley founder of AorticDissection.com (please book mark the link once you get to Amazon.com for future purchases!)

Jim Thompson-47

Name: Jim Thompson
Email: jim@netgate.com
Age at time of Dissection: 47
Type of Dissection: Ascending
Date of Aortic Dissection: 19 Aug 2009
Tell Us Your Story:

And now, a story. This has to go somewhere, so it might as well go here.

During the Summer of 2009, I spent 9 weeks in France. Two just outside AIX, followed by a weekend in London to see Hard Rock Calling – 2009, then six weeks in Annecy, studying French, and following Le Tour de France. I went to see DMB and Steely Dan play the The Montreux Jazz Festival during that time. The Tour also stopped in Annecy for a time-trial around the lake. When I was finished with my studies, I took a train to Paris, and met my wife there for a slightly early 20th anniversary; getting drunk and touring the art museums. During my return I stopped for several days in Las Vegas to see my brother and father. I returned to Hawaii Thursday, August 13.


On Sunday, August 16, while sailing the Etchels in a race off Waikiki, I heard a loud ‘bang’ just as the pole was made during a downwind jybe. The sound was immediately followed by a complete inability to trim the kite, and, yes, the mast moving away from me. We had snapped the backstay, and the mast was folding. It swept the man on the deck into the water. I grabbed him, and, when the boat stopped, lifted him back into the boat.

This was followed by approximately 45 minutes of me in the water, recovering the sails, and bringing the mast (which was slowly sinking the top-end) back up to the surface, so we could get it back on the boat. After that, we got towed in, put the boat away inspected the damage and drank a few.

On Thursday, August 20, during a race on a different (40′) sailboat in Kaneohe Bay, the skipper called for a kite douse just before we rounded the first mark. The foredeck crew left for the foredeck, which was bad, because we were going to douse into the companionway.

I decided to do the take-down myself. A decision that nearly cost me my life.

I managed to get the entire kite in the boat, but noticed at the end of the effort that I felt… well, I felt like shit. My mind was cloudy, and I felt really tired. I remember asking one of the (now returned) foredeck crew, the same man who four days earlier I’d plucked from the ocean off Waikiki, to run the tapes on the kite, because I couldn’t remember if I’d managed to bring it down without putting a twist in it. I remember thinking that I must be really out of shape.

I finished the sail, and helped put the boat away, feeling really exhausted. I wanted to just go home, but the wife had spotted some old friends, who wanted to go to dinner. So we went. What I didn’t know then, was that I’d suffered a Type 1A (ascending) aortic dissection, and the clock was ticking down the hours I had left to live.

The following morning I felt a lot better. Friday night was a campout with the Scout Troop, so I ended up spending a lot of the day carrying up heavy equipment and boxes from below the house, cleaning it up, and loading it in the truck. Then I loaded our son, and left for the campout.

I felt fine until about 7:00pm, then my world started to change. My right leg went completely numb and was paralyzed. While I was sitting in a chair, the dissection had progressed the full length of my aorta, causing a spinal infarc (potentially the cause of the numbness), and finally occluding the right branch of my femoral artery (the other potential cause of the numbness and paraplegia.)

My right leg was “off-line”, I had lost the ability to both control it, and feel any sensation in it. If I looked away, my right leg felt like it was a huge ballon. (Though I was not, “Comfortably Numb”.) If I touched my right leg, my fingers had a sense of touch, but my leg (foot, etc) did not.

An assistant Scoutmaster called 911 and they sent an ambulance.

The paramedic (in the ambulance) took my vitals (bp 120/80, pulse 62) and declared that I was in better shape than he. The ‘low’ vp worried me, because at the time I was on a cocktail of 3 bp meds that were sufficient to lower my bp to around 135/90, or so. So in reality, my BP was abnormally ‘low’. Subsequently did the little blood test for the proteins released during a heart attack and declared that I hadn’t had one. ( I didn’t think I’d had a myocardial infarc, either. I wasn’t sweating, had no radiating arm pain, wasn’t tight in the chest, etc.)

And yes, I arrived at the hospital in my Scout(master) Uniform. Don’t laugh.

The ER doctor and hospitalist (essentially your “GP” while you’re in the hospital) found that I had no (discernible) pulse in my right leg. They even used a “Doppler” (a sonographic instrument) in an attempt to find blood flow at my femoral artery (in the groin), behind the knee and in the top of my foot. These were all present in the left leg/foot, but not in the right, even with the Doppler. Note that the Doppler is normally sensitive enough to ‘hear’ air bubbles (embolisms) go by in the arteries, never mind the (much) louder pulse. There was no pulse anywhere in my right leg.

The ER doctor also checked for the proteins (creatine kinase-MB fraction and troponin) associated with heart attack, decided I hadn’t had one, and started down a branch in his differential diagnosis, chasing stroke. He sent me for a CT scan of my head.

By the time I went to the room where the CT scan was done, I had some feeling back in my right leg, and could move my toes. I managed to stand up from the gurney, and move myself to the bed/platform on the CT machine. When I did, the paralysis and numbness immediately recurred. I noted this to the attending ER doc upon my return to the room. Didn’t seem to matter much to him. (I thought it was an interesting fact.) The CT scan came back negative.

He then attempted a spinal tap, which never succeeded in taping spinal fluid (lets just say it hurts and leave it at that), despite his four attempts. This all took until around Saturday 2am.

Meanwhile, my BP was stable all night at 120/80, but my pulse was oscillating between 50 and 25 bpm. Yeah, I typed that right. Every time my pulse would drop below 40, the monitor would sound an alarm, and every time the alarm would sound, some tech would eventually show up to clear it. This went on for HOURS. I don’t know why they were clueless about deciding that a pulse kept dropping below 40 bpm was a problem.

Having failed in his differential diagnosis, the ER doctor then decided that what he wanted to do was admit me for observation. The hospitalist objected, informing the ER doctor that first he needed to determine what was wrong with me.

And by this point (between 2 and 3am), both the ER doctor and the hospitalist had each told me a couple times that they had “no idea” what was wrong with me. I do remember the hospitalist saying out-loud at one point (earlier in the evening) that I “didn’t look like a Marfan’s patient”. This, along with the lack of pain, probably resulted in him deciding to not chase dissection.

Painless acute aortic dissection in which paraplegia is the only presenting sign is rare, which tends to explain the failure in differential diagnosis. Most doctors would, especially if they’d decided that I didn’t have Marfan’s syndrome.

Around 3am, the two docs decided to call a vascular surgeon in for consult. (“Help!”) Apparently when they called him, they described my symptoms, and explained that they’d reached a dead-end. When he arrived, he was quite a bit older than the two docs I’d been dealing with. He introduced himself, and then asked to hear my version of the events of the evening. I probably had to tell the story five times that night.

When I was done, he responded that my symptoms didn’t make sense, and that he’d had this same thought on the drive to the hospital. And then he said, “when the symptoms don’t make sense, think dissection”. He sent me for a CT scan “with contrast” that would cover the chest and abdomen.

They had to run the scan twice, because the first time the heart “blurred” due to my (abnormally) low heart rate, crossed by the bed of the CT scanner moving at its “normal” rate.

By the time I got back to the room, they had their answer. The vascular surgeon said, ‘well we know what’s wrong with you now’, told me that I needed surgery, that I needed it (right) now, and that he wasn’t the right guy to do it, as he only worked on extremities (arms and legs), but that they had called the right people and they were on their way in. He then described a dissection in layman’s terms.

It probably took me three minutes to put all the information together. I finally asked, “Wait, you said aorta. Am I having open heart surgery?” “Yes.” was the response. “Oh.” said I. “Fuck!”, I thought.

A few minutes later, a tech came in to catheterize me. While normally they use a surgical lube (think KY Jelly) on the catheter, and the lube contains a local anesthetic, I got neither of these little comforts, because they didn’t want any complications from a potential interaction during the surgery. It hurt. I shouted and shrieked several times as they inserted it. My wife had been with me in the ER the entire time, except for while I was out of the room for the CT scans, and while they had attempted the spinal tap. So, she got to see me shriek like a little girl as a guy shoved a tube into my penis.

When the cardio team showed up, the surgeon introduced himself. Dr. Wu. He described the procedure, and gave me the standard opportunity to ask questions. I’d just seen Steely Dan play earlier in the Summer, so I had the audacity to ask, “Are you with me Dr. Wu?”, then had to explain the lyrics to Steely Dan’s “Dr. Wu”. (Heh heh.) I asked if I could get a second opinion (a joke, but he didn’t take it that way).

Seriously, what the F*** was I going to ask, my chances for survival? With my wife in the room? Had I asked, and had they decided to tell the truth, they would have let me know that 8 out of 10 people who have an ascending aortic dissection die before the surgery is complete. Another 1 of those 10 don’t leave the hospital alive post-surgery. Many end up with organ (kidney, liver) failure, or are paralyzed for life.

Five of those 10 don’t even make it to the hospital. John Ritter died six year prior, with a less dangerous descending dissection because the ER docs failed to recognize what was happening until it was too late. Lucille Ball died of a less dangerous dissection. Albert Einstein died of a less dangerous thoratic dissection.

Every doctor I’ve told this story to has had a very similar response. They quietly look at me and explain that I’m extremely lucky. One was astonished that they’d found it at all. Most people with ascending aortic dissections drop dead when the dissection compromises either the one of the carotid arteries or one of the coronary arteries. Descending or thoracic arteries are still deadly, but they’ve missed these important arteries which supply the heart and brain.

Anyway, I signed the form, then the real fun began. They prepped me (IV in each arm, in addition to the one the paramedic had started in the ambulance), with a series of syringes attached to a square of cardboard taped to my right arm. They asked me no less than eight times which drugs, supplements, and medications I was taking (or ‘on’). I answered each time with the list of BP meds. They wanted to know when the last time I’d taken recreational drugs. 1994, while I was on tour with Lollapalooza was the honest answer, which I gave. I was asked how much alcohol I drank, (2-3 beers / week at the time) and if I smoked. I’d smoked two Cuban cigars over the Summer while I was in France, and the surgeon allowed that he’d have probably done that, too.

Around 4AM on Saturday August 22, 2009, I underwent six hours of emergency open heart surgery to repair a the dissection. This was followed by another five hours when they had to go back in and fix a leak. All in all, I was ‘under’ (including recovery) for 30 hours, and, I’m told, around 45 minutes in a state of suspended animation, without blood flow.

I’d been dead (no perfusion, no blood flow anywhere, no heart beat, no running heart-lung machine) for 45 minutes. The only reason I’m able to type this today is that during the first surgery, I was cooled to 18C in order to both stop my heart and keep enough of me alive while the heart / lung machine was off. (They had to replace the aortic arch with a Dacron ‘tube’.)

I awoke Sunday afternoon around 3pm.

I remember on waking up and my wife coming to visit, that the CICU nurse explained that I’d been cooled to 18C. I asked my wife to convert that to F, because despite trying, I couldn’t hold the calculation in my head long enough to complete. I could multiply 18 by 9, (I remember doing 90+72) but division by five of the result (easy!) was beyond me. I couldn’t “hold state”. I could get to 30, but not 32. Remember, this was all in my head.

My wife was busy looking for a C->F function on the her phone. I ‘barked’ at her, (I was impatient) reciting the formula (literally “18 times 9 divided by 5, plus 32”)

This yielded both an answer (“64.2”) from her, and an internal thought that maybe I was going to be OK.

Later that evening, “John” the PA (on the CV surgery team) arrived to see me and explain that the following day, he was expecting me to get out of bed and complete two ‘laps’ of the floor, and that the day after I owed him four ‘laps’. On my fourth day (Wednesday) in CICU, they decided that I could be moved to a room on the cardiac floor.

There are a lot of other details to the hospital stay that I won’t go into here. The nurses were, for the most part, great. I’m sure I was, by far, the youngest patient in CICU. It’s been explained to me that they liked me because there was a good chance I’d live. Most patients on the cardiac floor are enduring the end of their lives.

Ten days after I arrived, they let me leave the hospital.

It took me nearly three months to recover anything like normal brain function. (Google for “pumphead” or postperfusion syndrome, if you want to understand the ‘why’.)

On a follow-up (in March 2010), Dr. Wu explained that there was about 50cc of blood around the heart when they got me opened up. (I was close to pericardial tamponade.) I was probably minutes to hours from death. I also learned that the dissection starts quite close (around 1.5mm) from the aortic valve, but that it hadn’t compromised the valve. (They were prepared to do a valve replacement as well.) Once they re-established blood flow after the Dacron tubing was in-place, I again had a pulse in my right leg, so they didn’t investigate that further.

Both the ER doctor and hospitalist looked … embarrassed. Both visited me (once each) the day after I woke up. (I was still in CICU.) The ER doctor apologized over and over. He looked close to tears. I bore no grudge (and still don’t), and explained that I was alive, and he had learned something, and in the future, someone else would likely live because of it. The hospitalist was a bit more arrogant. I let it slide, because his decision to block my admittance for observation was a big factor in my survival.

I have some residual numbness in my right leg (especially during exercise). It was bad in the hospital, but has gotten better over the last year. I got a referral to see a neurologist (also in March). When I went, I explained my story. He then went and checked my record (I assume he looked over the case notes from the ER as well as the surgical report.)

He then explained that I’d “probably” suffered a spinal infarc, and that he had three patients in the hospital “right now” who had suffered the same thing, that would never walk again. (It’s also about 50% fatal.) He told me that he would make an appointment for next March, but I should cancel it unless it got worse. Basically, he threw me out of his office in the most professional manner possible.

You’re lucky to be alive… what’s your complaint, Mr. Thompson?”

It’s near the end of 2010 now, I doubt I’ll be keeping that appointment.

But as anyone might think, the events described above have acted as a certain ‘catalyst’ to improve my physical self.

And that, through a different series of events, has turned into re:Motion.

Thanks for stopping by to view our stories. Please help me keep the site going by shopping at Amazon.com-It’s very much appreciated. Brian Tinsley founder of AorticDissection.com (please book mark the link once you get to Amazon.com for future purchases!)

Robert Haisman-43

Name: Robert Haisman
Email: rhaisman@sympatico.ca
Age at time of Dissection: 43
Type of Dissection: Ascending
Date of Aortic Dissection: 15 September 2005
Tell Us Your Story: This web site is superb.  Future victims of aortic dissection (and there will be future victims, guaranteed) need to know about diagnosis and treatment.

Iwas 43 in September 2005 and woke up to extreme pain in my chest.  It actually felt like something “moved” inside.  I assumed I was having a heart attack and called 911.  The pain was so severe I thought I was about to die.  My wife and kids were all out of the house and I was alone.  I was worried they would come home and find me dead on the floor.

An ambulance arrived within minutes and paramedics rushed me to the hospital here in Sarnia, Ont.  I was quickly examined by nurses, doctors, etc.  Blood tests showed I had not had a heart attack, but the pain was crippling.


I was admitted for more examination.  Over the next few days I went through all the usual tests one can imagine, with no diagnosis.  I even passed a tread mill stress test!!

Thank God there was a veteran nurse looking after me who had a hunch that I may be experiencing an aortic dissection.  I was given yet another ultra sound and within 30 minutes loaded into an ambulance and rushed to University Hospital in London, Ontario.

Upon arrival I was met by a cardiologist, surgeon, and nurse.  I had a cable orally inserted into my stomach by the surgeon, and within 10 minutes he confirmed I was experiencing an ascending arotic dissection – a diagnosis missed by Sarnia doctors for 4 days, and thankfully figured out by a fantastic nurse.  THIS IS NOT A DIFFICULT DIAGNOSIS!  Simple equipment and thorough testing can reveal a dissection within one hour – let alone 4 days!  As we know, mortality rates rise by the hour when this simple diagnosis is not made due to a lack of basic equipment or medical competency.

At University Hospital I was in surgery prompty, and seven hours later I had a St. Jude aortic heart valve and graft keeping me alive.  I was back to work in 6 weeks.  I am now almost 50 and feel great, thanks to a wonderful nurse (Val) and a talented surgeon in London.

Robert Haisman

Thanks for stopping by to view our stories. Please help me keep the site going by shopping at Amazon.com-It’s very much appreciated. Brian Tinsley founder of AorticDissection.com (please book mark the link once you get to Amazon.com for future purchases!)

David Oneil-44

Name: david oneil
Email: ducanno12006@hotmail.com
Age at time of Dissection: 44
Type of Dissection: Ascending
Date of Aortic Dissection: 9 December 2011
Tell Us Your Story:

My father rang 999 on the 12th of September 2011 and said he thought he was having a heart attack so paramedics arrived done a ECG and said there was nothing but would take him to a.e as he was in loads of chest and stomach pain so when he arrived he told me his blood pressure was 208 but sent him home as they said there was nothing wrong with him so I told him to go to a different hospital so he did he done a urine sample and he had blood in it so transferred him again as they said they thought he had kidney stones.

I have never seen my dad in such pain he was keep pressing his stomach saying he could feel lumps the doctor told him to stop being daft then a cardiac doctor went and seen him on the 21st of September and asked him where he was getting the pains from he said his lungs….how do you know its coming from your lungs passed away the following morning got a post mortem and results came back he had a torn thoracic aorta and had a hemorrhage on the left side of the chest.

Massive heart attack is how he died so how 3 different hospitals failed to diagnose it??? he even told me it felt like the pains were going from his chest 2 his stomach. I still cant come to terms with how he’s been treated can someone give me some advice please?

Thanks for stopping by to view our stories. Please help me keep the site going by shopping at Amazon.com-It’s very much appreciated. Brian Tinsley founder of AorticDissection.com (please book mark the link once you get to Amazon.com for future purchases!)

Andy Hunt-44

Name: Andy Hunt
Email: andy-hunt@hotmail.co.uk
Age at time of Dissection: 44
Type of Dissection: Ascending
Date of Aortic Dissection: 21 June 1998
Tell Us Your Story: 21/06/1998
Mid summers day, Sunday no work, Fathers day, Wife’s birthday,
my girls up (9 and 7) and watching tv. It’s about 8ish get out of bed leave Wendy in bed. Go down to have a cup of tea and prepare breakfast in bed. Sit watching the news drinking that all important first cup. ouhh hot flushes up my arms, then across my chest. now pins and needles, this ain’t right. GIRLS GO AND GET YOUR MUM QUICK! Pass out. Come to. Need to lie down. crawl on floor to where the phone is, Wendy will need it and me close by it.

No recollection.

Remember Wendy talking to me she is on the phone.

No recollection.

Next door neighbour Lynne Arrives.

No recollection.

Strange things are happening inside my head everything is absolute jet black but high gloss and indistinct figures appear to be pushing against sheets.

Strange things are going on in my space. Absolutely brilliant red high gloss cars are being pushed sideways into the sheet.

Bouncing rice is happening, as though a drum is covered in rice and is being hit but no noise there never is any noise.

My eyes open where am I? there is a column with peoples names and dates on it I’m top of the list. There are later dates. Drift off.

The boop boop boop attracks my attention. A nurse talks to me she tells me I can not talk, rubbish of course I can. SH*t I can’t.
Wendy comes in and kisses me I mime hows the car. You’ve not been in a car crash honey, you’ve had a heart problem.

My brother and his wife Elaine come in they ask how am I doing? I can’t talk but need to let them know that inside my head is alright. Knowing he watched startrek I give the vulcan sign for live long and prosper.

I indicate to where my watch should be, I need to know the time,
How long have I been here.
Today is Friday 26th June. How time flies when you sleep.

Saturday 27th June. The tracheotomy tubes comes out I’m now able to breath for myself, and I can now talk. So many questions so little recollection ask that question again……..and again eventually it might sink in.

Very little pain these drugs are great ask the questions again damn these drugs they get me confused.

Some memory returns if today is Saturday 27th June it’s practice for the French grand prix. What a TV in ICU not heard of! Okay but only for the practice and if your good the race tomorrow. fall asleep again halfway through

What had happened:- I had a dissection aortic aneurysm on the arc. a 2cm Dissection that had caused bleeding into the pericardium. both squashing my heart but conversely forcing blood through the arteries keeping me alive..ish. I have no recollection of anything passed lying down near the phone.

I was operated on by Mr Odem at the Manchester Royal Infirmary ironically the day after his wedding and the day before he went on his honeymoon.
After the op, I was still bleeding internally and it was decided not to sew up my chest up till it stopped or the cause was rectified.
I was given the clotting agent Factor Eight and the blood thinning agent warfrin at the same time. Monday Night they sew up my chest.
Two more days in ICU then moved to HDU. and first shower.
I sit on a chair under the shower. Just having the water pour over me is fantastic, small things are great at the right time.
Two days later move on to ward. Just a question of building up my strength. A week later I’ve made good progress.
Let out of hospital on the Tuesday. Wendy and I have a discussion about whether I can go to the Pub or not. I need to for myself to aid my recovery I always went to the pub on a Tuesday to see my mates. Wendy comes to because I’m not fit to drive. This is not selfishness I want to know that I AM STILL ALRIGHT. I have a pint in two half pint glasses because as you know if your chest has been opened you can not lift more than a bag of sugar for several weeks. Part way through my second half I need to go home I’m so tired but sooo glad I got out.


As I write this it is thirteen years today since the operation. Since then I have moments of depression, a sort of survivors guilt. I needed counseling to come to terms with my changes to my life style. But I have always tried to be in control of my health, and not the other way round. I have developed coping strategies that suite me. I have attend college and gained new qualifications because I had to change jobs. I have had feeling of immortality. Somethings that I used to do I no longer do. If We want to do something we try and make it happen. We have been to Africa South America, and we will be going on our first cruise later this year. I’ve stopped playing the lottery because I won the biggest prize of them all A new life. I still drink perhaps to much I do somethings to excess, because I was lucky to have this time I have no intention of wasting it.

I’m not religious and don’t believe in a higher power but I often send private thoughts of thanks to Mr odem and his team. Without them I would not have seen my oldest daughter become a nurse or my younger play at the Queen Elizabeth Hall in music for youth.

I have not told you my wifes story because that is hers. Mine is easy to repeat because emotionaly there was nothing for me, as I have already said I had no recollection from lying on the floor near to the phone to waking six days later.
If you need to know any more about life after get in touch I will answer all questions honestly warts ‘n’ all.
Andy

Thanks for stopping by to view our stories. Please help me keep the site going by shopping at Amazon.com-It’s very much appreciated. Brian Tinsley founder of AorticDissection.com (please book mark the link once you get to Amazon.com for future purchases!)

Quentin Marsh-47

Name: Quentin Marsh
Email: Quentin.marsh@gmail.com
Age at time of Dissection: 47
Type of Dissection: Ascending
Date of Aortic Dissection: 23 May 2011
Tell Us Your Story: Aortaknowbetter.tumblr.com/FullStory

I was sitting at my desk looking at facebook (yes, facebook was almost the last thing I ever saw) when I felt a small explosion in my throat below my adam’s apple.

I’m referring to this as the ISD (I should’ve died) event.

My throat hurt terribly, I started to see migraine auras and everything started to get fuzzy. My heart was racing.
“This isn’t good” I thought and went to get a water.
The water didn’t help.
My heart was really racing and every part of my body started to tingle.
Andie, my poor wife, was in the lounge saying,
“Q, are you okay?” over and over but I didn’t have the breath to answer. My throat hurts so much.

Andie gives me a panadol. I lay on the couch and said
“Call an ambulance”

Sunday 22nd May, 2011, 18:30

The ambulance arrived and they asked me all the usual questions, took my blood pressure, asked the same questions again, did a 3-point ECG, called another paramedic in who had a 12-point ECG, then told me I needed to go to Emergency.
I tried to talk them out of it, of course, but Andie said we should go, so we went.
Off to St. Vincents.
The Paramedics were fantastic by the way.

Sunday 22nd May, 2011, 19:30

We arrived at St. Vincent’s and I was taken into Emergency. They asked the same questions the Paramedics asked, then took blood pressure, blood tests, more questions but nothing unusual was apparent.
I have two bungs sticking out of me from the paramedics and the attending physician says she can’t use them for taking blood so she finds an unoccupied vein.
One unusual thing though, they couldn’t get a blood pressure reading from my right arm.
There’s no room on the wards for me, no room in Epworth, so it looks like I’m going to spend the night in Emergency.

Andie goes home around 10ish.

Monday 23rd May, 2011, 07:30ish

Not a bad night on the emergency bed considering. I actually got some sleep.
Young student-type doctors have been flitting in and out all morning to look at me but I have no idea yet what is going on. I get to go to imaging to have a chest x-ray done… or was that last night?
A kid comes in and does an echo, which is an ultra sound of my heart. The little punk just rips my ECG tapes off and takes most of my chest hair with it. He doesn’t take his iPod earplugs out.
Punk.
A nice Doctor comes in and asks if it’s okay to have his students come and look at me and for one of them to examine me.
“Sure”, I say. After all most people in this hospital have been all over my business by this stage.
He wants to have a look at me before they come in. He looks at my eyes, fingertips, toes, takes a pulse from my left wrist, then my right.
“Hmmm”
(uh oh)
He tries to take pressure from my right arm
“Oh”
(shit)
“Have you been for a CT scan yet?”
“Nope, just a chest xray”.
“Nurse, he needs to go up for a CT scan as soon as possible”
(uh oh)
In comes his students. They’re just kids. I feel old.
One keen young guy volunteers to examine me. He does all the same things the nice doctor did but seems to be having trouble getting pressure from my right arm. He shrugs it off and takes pressure from my left arm instead.
(ba bum) I think.
He gives his diagnosis which sounded really impressive.
It was wrong.


Monday 23rd May, 2011, 12:00ish

The nice doctor goes on to explain what his diagnosis is (he’s being very nice to the student who volunteered to examine). They start throwing big, important and scary sounding words around.
They’re getting excited!
They all start trying to take a pulse from my right arm. There is only a very faint pulse. The left pulse is strong.
(my right side is dead?)
“Listen closely to the left” the doctor says
“Can you hear it? thump thump pssssh”
(shit this isn’t good)
The doctor sends the students off and then sits down to try to explain it to me.

All I hear is, false lumen, heart, aorta, CT scan will verify.
Okay at this stage I’m getting a little worried.

(Heart? WTF! There’s nothing wrong with my heart goddammit).

Monday 23rd May, 2011, afternoon-ish

Andie hasn’t come back in yet.
I’m sent to imaging again. This time to get a CT scan. They inject something into my arm at the same time as the image to get the contrast. Then I’m back to the emergency bed.

Andie comes in and the nurse says she has time to get a coffee if she wants, it’ll be a while before we get the image.
Almost as soon as Andie leaves the Big Guns come in. They have my results.
Doctor Nixon, the cardiothoracic specialist, starts talking.
I hear, aortic dissection, walls of the aorta have split, could be massive blood loss, life-threatening condition, must operate as soon as possible.
(What?! Shit.)
“What are the risks”, I ask
(Dick) I think (What a dumb question. Let me guess… death?)
“Well, there is a risk…..”
(yep I knew it)
“Okay…”, I said
“…No choice really is there. Let’s do it.” I said sounding rather calm.
I sign a few things and start to worry about Andie. She’s not back yet.
They start prepping me straight away and before I know it I’m on the gurney to go to the theatre.
Where’s Andie? I try to ring, no answer.

Dammit they can’t take me without letting me say goodbye to Andie first. I’m getting scared now.

The nurse is great. She’s not letting them take me anywhere.
Andie arrives finally and is in shock. They explain it and she’s standing there with her coffee stunned.

My poor baby.

We get to say our goodbyes and I’m off.
I wasn’t scared but I was terrified of leaving before Andie got back.

Monday 23rd May, 2011, 18:00

We just left emergency and Andie behind and I’m on my way to the theatre.
I’m feeling pretty calm considering how quickly this has all happened.
We get there and 4 or 5 people descend on me.
One takes my left arm and starts trying to find a vein. He manages to eventually put two huge bungs in.
Another is trying to put something in my neck.
One of them must be the anesthetist.
They both finish and the last thing I remember is the anaesthetist saying something.

Thanks for stopping by to view our stories. Please help me keep the site going by shopping at Amazon.com-It’s very much appreciated. Brian Tinsley founder of AorticDissection.com (please book mark the link once you get to Amazon.com for future purchases!)

Tuesday 24th May, 2011


I wake up and a nurse tells me I’m in ICU.
Everything hurts, my chest, my groin, my nuts (what?), my back, my head.
I feel like a big bruised, sore pin-cushion.
She says she needs to take the tube out of my throat so out it comes. That hurts.

I cough

***WHAM***

That was a mistake. Sooo sore.

I spit out a handful of brown sludge.
“Good!” the nurse said.
Her name is Jane (Jayne? Must find out). She’s lovely and looks worried. She gives me a folded towel to hold over my chest for when I cough. They call that a teddy.
A Doctor comes around and says,
“Excellent! You’re doing very well.”
More doctors, I recognise the Big Guns. They’re all smiling and looking happy.
“Amazing” one says
“Deep breaths, try to cough and rest.” another says
Doing all three hurt but I do it.
(Suck it up boy!)
Everything else is vague, more blood tests, constant blood pressure tests (it’s on automatic), constant ECGs.

They weigh me by putting me on a seat. I feel helpless. I’m also big… 111kgs. I was 106 when I came in and my left hand looks like a rubber glove filled with water.

I remember the nice Doctor coming in to talk to me. I can’t thank him enough.

I have a drain in my mid-section, 5 bungs across both arms, a massive bung in my neck, a drip going somewhere, 12 ECG points and a catheter for my urine (Sweet!)
My shoulder blades hurt and there’s so many wires and tubes around or on me that I can’t get comfortable.
Jayne gives me a sponge bath. Even that hurts.
A couple of technicians come in with a portable x-ray machine and I get an x-ray.
Andie is in. Apparently she was in in the morning but I was in distress so they didn’t wake me up.
Weird stuff is happening.

Tuesday 24th May, 2011, hallucinations and weird dreams

I was told that I might have hallucinations because of the drugs. They were right.
I’m hallucinating, demons and strange looking people talking to me. This is at the same time Jane and Andie are talking to me.
I read comics so I take it all in my stride.
I hear people around me talking to no-one and I laugh (that hurt).
I start answering my hallucinations too (wheeee!!)

Wednesday 25th May, 2011

Jane is taking care of me.
It’s noisy in ICU.
People are still talking to their hallucinations.
I become dependant on the bed remote. Not comfortable, go up, not comfortable, go down.
No point in trying to sleep, it’s too noisy and I’m having a good conversation with my hallucination demons.
The doctors come around, they’re going to let me out of ICU once they find a bed in the wards. I think I’m last in line.
IT’s not until 16:00ish that a room comes free and I’m off again!
Jane takes me up to my new home.
Ward 4, Room 15 is my new home. It’s alright, quieter and I get a window (cool).
Now I have a bed remote and a TV remote.
Andie and Mum come in for a visit but not much to see here. Just a 111kg bruise trying to heal.

The first thing I ask for is my phone and charger so I can tell everyone who doesn’t already know, well, know.
Andie takes that picture of me and I post it on Facebook. There’s an avalanche of responses. Text messages start flying in too. It’s just what I needed.
I get some dinner but not hungry.
Still too many wires and tubes to be comfortable but try to sleep.

Thursday 26th May, 2011

On the ward today but much the same procedure.
Blood pressure on constant monitor, carrying the ECG pack around with me, blood tests being taken, popping pills.
No appetite yet.
The doctors come around and I ask if they can
“take some of this shit out of me please”.
Yes! They agree to take the things out that aren’t being used.
Bungs from arms, Gone!
Bung in neck, Gone!
Drain in midriff, Gone!
Catheter, Gone! This removal was not pleasant but now I can have a pee by myself.
Andie and Mum are back in, it’s nice to see them.
I have a new nurse and she’s wonderful. Her name is Jess.
It’s time for a shower! Jess is going to shower me, the poor girl, but I’m still in a lot of pain so she needs to be there. It is soooo wonderful to be clean again. Especially to be able to shave my face and head. It makes such a difference.
I get flowers from nab! From the guys in the NextGen Batch team.
I get a hamper from nab! From the Batch hardening guys.
Tim and Z are coming in for a visit tomorrow. So is Dana. Can’t wait. It’ll be nice to talk to someone without having to show them my stuff.
I’m feeling so much better and they give me a new med to make me pee. Time to lose some of the fluid they forced into me.
I go for my mandatory walk around the ward, deep breath and cough.
I’m peeing for the rest of the day.

Friday 27th May, 2011 – Saturday 28th May, 2011

Great news! The doctors just finished with me and said I could possibly go home tomorrow (Saturday). I can’t wait.
Shower and shave, by myself this time. It’s important to stay well groomed.
Feeling alot better.
I go for my mandatory walk around the ward, deep breath and cough.

Tim and Z come in for a visit. It’s good to see them.

Dana and Jason come in later too. It’s great to see them too.
Andie comes in later, she’s happy with the news.
Friday nights sleep was awful, awful, awful. Not even going to talk about it but we had problems with a new patient in the room and she kept us all awake. I really need to go home to heal.

Saturday arrives, so does Andie and the Doctor. He says it’s looking good and all I need to do is pass the final CT scan and blood test.

I get weighed again and it looks like I’ve peed 8kgs of fluid out of me overnight. I’m now 103kgs.

I get the results of the CT scan and blood test and I’m good to go!

I sign a bunch of things, get my meds and we’re off.

Home by 14:00.

Now time to recover.

Eric Short-46

Name: Eric Short
Email: Airtime22@aol.com
Age at time of Dissection: 46
Type of Dissection: Ascending
Date of Aortic Dissection: 17 March 2006
Tell Us Your Story:

Ihad just driven home to NC from Brooklyn visiting my mom who had been ill. 656 miles during the day on a Friday. I was in my bedroom and a weird feeling in my chest came over me and I knew there was something wrong. I yelled out to my wife to call 911.

They arrived in 7 minutes and immediately gave me nitro glycerin as my blood pressure in my right arm was extremely higher then on my left side. I walked down our stairs as the stretcher could not turn (our stairs wind) plus I am 6’5″ 250.

I was taken to Northeast Medical in Concord NC. A Dr. Takla advised me that I would need surgery to save my life. All I know is I had a calmness which I never had and before I know it its Sunday I had undergone 20+ hr surgery–needed to be revived twice and also contracted compartment syndrome in my right arm. I lost use of my finger due to the condition.

Due to the love, attention and support from my wife, daughter, family, nurses, attendants and doctors I am doing well.

GOD is good!!

Thanks for stopping by to view our stories. Please help me keep the site going by shopping at Amazon.com-It’s very much appreciated. Brian Tinsley founder of AorticDissection.com (please book mark the link once you get to Amazon.com for future purchases!)

Gene O’Neil-45

Name: Gene O’Neil
Age at time of Dissection: 45
Type of Dissection: Ascending
Date of Aortic Dissection:  9 April 2009
Tell Us Your Story:

As I packed for a visit back home to Detroit and to join friends for the Tiger’s opening day, I was struck with a strange pain in my chest, more discomfort than pain. I thought possibly I had strained my chest but the discomfort continued.

At 10:30 PM I had Shannon rush me to North Cypress Hospital in Texas where an  alert CT technician identified my AD. The staff immediately explained the situation I was in, which was not good and made arrangements for me to life flighted to Hermon Memorial in the Houston Medical Center.


The very gifted Dr. Hazim Safi performed the surgery that saved my life. Though the surgery was a success my recovery was difficult including months in a medically induced coma. However, two years later I am fully recovered and thank God for each additional day he has blessed with with to share with my family and friends.

Contact Gene

Thanks for stopping by to view our stories. Please help me keep the site going by shopping at Amazon.com-It’s very much appreciated. Brian Tinsley founder of AorticDissection.com (please book mark the link once you get to Amazon.com for future purchases!)

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