Category: Forties Page 1 of 5

William Overdevest-49

Name: William Overdevest
Age at time of Dissection: 49
Type of Dissection: Ascending
Date of Aortic Dissection: 20 December 2015
Tell Us Your Story:

H ello. I live in Simcoe ON. I live alone, and fortunately when my ascending aortic dissection began. My brother and nephew were over watching Sunday night football. About 10;15 p.m I felt a tight feeling in my jaw. It moved to my neck, back and lower back immediately. My brother called 911.

I was lucky the area Dr. was familiar with Marfan s Syndrome, which I mentioned I had. He sent me immediately to Hamilton General by ambulance. During the ride to HGH. Dr. Driver who s presence was requested by Dr. Bardon, the ER Dr. AT Norfolk General. Whatever he did he saved my right arm and leg, which were black and blue from the blood clots, and I was most likely going to have them amputated, did something in the 45 minute ride to Hamilton, that saved my limbs. I arrived at HGH at about 1 a.m. At 1;3 ish.

Dr. Adel Dyub arrived, and examined me and spoke to me and my family. He assembled his team, and I went into the OR at approx. 4 a.m. The surgery was about 15 hours. My organs had shut down and began dying. I have been told that my organs had to be removed and I was literally put back together. My brain was frozen to 23 degrees F. for approx. 25 minutes.. I have only recently learned to some extent what I had been through.

I have been told many many times I am a true miracle. That in my case, if a 1000 people came in like me, I am the one that survives.. I spent 8 and a half days in ICU. I had been complaining about my tongue, and it was quite swollen. 3 weeks after the surgery, my tongue basically exploded.

I was rushed back to Er area . I lost 4 litres of blood in 3 and a half hours, before I was brought in to the OR. where Dr. Corman a professor at Macmaster Hospital. Miraculously managed to cut out died tongue tissue. Reattach my tongue and stitch up a 9 cm long by 1 cm wide and a half cm deep. Which it has held together and healed nicely. I spent 4 days in ICU for this procedure. I have covered briefly what I had gone through.

I am told that I am famous. I assume in the eyes of the medical community. I had signed waivers permitting publications of what I experienced, in order to help Dr.s learn from my ordeals. Currently I am part of a group study of 300 people taking Entrersto. Fyi April 18th 2016. I was rushed back to HGH. For heart failure, my ejection fraction was down to 19% and I was told, it had to go up.

That if it continued to drop, it didn t look good for me. I spent 4 days in the cardiac care unit at HGH. Again the staff was amazing. I Hope this brief explanation helps. Thank you to everyone that helped to save my life. Beginning with my brother Frank, the Dr.s at NGH, and everyone at Hamilton General Hospital. A Special thanks To RPN Colleen Powers and Irene Travale 5 South, Dr. Buchanan Dr. Corman . Dr. Dyub. My cardiologist Dr. Greg Curnew, his staff. And the nurse tending to me through this Entresto study Aleks. I can never thank you guys enough. I hope this helps Thanks
William Overdevest

Todd Kozelichki-45

Name: Todd Kozelichki
Age at time of Dissection: 45
Type of Dissection: Ascending
Date of Aortic Dissection: 9 August 2016
Tell Us Your Story:

Please take a look at this link on YouTube. It can also be found at the Nebraska Medicine Facebook site. It has had several thousand views on their Facebook page, and many on the links I have shared with others on my own page.

Relates to my story, and recognizes the excellent treatment I received at Nebraska Medicine. Please share with others, or post on your website if you want. I am also willing to provide a written description of my experience if this is something you would prefer. You can contact me at for questions, suggestions or comments.

I enjoy your website. Thank you for your time.

Todd Kozelichki
Omaha, NE

Mike Sylvester-46

Name: Mike Sylvester
Age at time of Dissection: 46
Type of Dissection: Ascending
Date of Aortic Dissection: 17 December 2016
Tell Us Your Story:

My name is Mike Sylvester and I live in Duluth, MN. At about 9 p.m. on the evening of Dec. 16, 2016, I developed what I thought was indigestion. I have had stomach issues in the past, so I took some antacids, but the pain didn’t go away. After doing several web searches, I determined that I may have heart issues, something I had not ever dealt with in the past. My wife was working all night, and my stepson had gone to bed, so I drove myself to the emergency room (bad idea, even though I felt alert and had no other symptoms). After arriving at the hospital, they quickly transported me to the heart and vascular center, where they determined I had a minor blockage, and they were going to put a stent in my heart. They said it was a minor procedure, and that I would only be hospitalized for a day or two. At around 4 a.m., my wife sent me a text message asking where I was.

I told her I was at the hospital with the flu, and maybe a minor heart issue ( I told her to get some rest and to come to the hospital the next day). That was the last thing I remember, until waking up on New Year’s Day. What follows is what was told to my by my wife, family and the medical staff at Essentia Health:While I was coming out of anesthesia from the stent surgery on Dec. 17, my heart doctor (Dr. Joseph Doerer) noticed that I was nauseous, restless and in pain (I do not recall any of this). Evidently there was some discussion about whether or not these symptoms were from the anesthesia. Thank God, John Ritter and others that he recognized the symptoms of an aortal dissection and whisked me off to the CT Scanner as my sleepy and disoriented wife was left to wonder what was going on.

When I returned, they informed her that I had a very serious Stanford Type “A” ascending aortal dissection. I was prepped immediately for surgery, as my surgeon, Dr. Terry Olivas, informed my wife of the grim situation. I was given a 30 percent chance to live, at best. The surgery and recovery took 10 hours. The next two-plus weeks were nothing but a blur, thanks to my ICU delirium, caused by painkillers like Morphine, Fentanyl and others. The time consisted of horrific nightmares, hallucinations and paranoia, along with just a few memory fragments. I initially had liver failure, kidney failure and my lung collapsed.

I was taken off the ventilator and put back on several times. My digestive tract quit working, so they had to pump my stomach. I was given and antibiotic to which I was allergic (unknowingly) and my throat and tongue swelled. I was injected with steroids, so my blood sugar soared, at which point they injected by with insulin. I also ended up with a serious blood infection. I had tubes sticking out of my arm, stomach, neck and wrist. The days passed slowly for my wife and family, as the prognosis worsened. After two weeks, the surgeon told my wife I had “turned the corner.” I awoke a day or two later, thinking I had been out for a day or two. Much to my shock, it was New Year’s Day. Unfortunately, my muscles had atrophied so bad, that I could hardly lift an arm, much less get out of bed.

Two days later I was taken to intermediate care in a wheelchair, unsure if I would ever walk again. The medical staff assured my that my body would recover, but it was up to me to get back in shape. After the first day, I was given a walker. I went 10 feet and back before collapsing in a chair in my room. The next day I did two walks, then four, then eight. I soon had a chart with X’s recording my number of walks. After only five days, I was sent to a rehab and physical therapy center. I was told I would be there for two weeks. The therapy was brutally difficult. We got up at 7 a.m., ate breakfast, and then had therapy from 9 a.m. until noon. There was speech therapy, physical therapy and occupational therapy. There were many times I felt like I was going to collapse or black out.

After the therapy sessions ended, I would spent time walking the halls, getting additional exercise. After four days, I was told that I was being discharged the next day. I walked out the front door of the hospital on my own on Jan. 11. I was told by the medical staff that I would be off work until the end of April, at the earliest, and I was immediately scheduled for 36 sessions of cardiac rehab. I worked hard in rehab and on my own to get stronger. My wife doubted I would ever work again. Six weeks later I was cleared to go back to work part time, and will be full time by the end of March.

The medical staff have given me a clean bill of health and said I will have no physical limitations. My only restrictions are in regards to my diet, which now consists of low sodium, low saturated fats and no alcohol. I now feel like a new man and am ready to start enjoying my life.

Scott Terry-42

Name: Scott Terry
Age at time of Dissection: 42
Type of Dissection: Ascending
Date of Aortic Dissection: 20 January 2016
Tell Us Your Story:

It started off as a normal Wednesday morning. I had just arrived at work and was on my way back to my desk from getting a coffee when I felt an unusual pain in my chest, unlike anything I had ever felt before. I initially thought it could be indigestion which I tried to clear with water. After that didn’t work I told a colleague that I needed an ambulance.

Thankfully I worked five minutes away from the nearest hospital – Queens Medical Centre in Nottingham, UK. In emergency I had the usual ECG and blood tests for a heart attack. While the blood tests ruled out a heart attack the ECG showed a slight abnormality. I also had significantly different blood pressure readings in both arms. I ended up staying in hospital for a couple of days while doctors determined what the problem was. During that time I was allowed to walk around, have showers etc.

On the Friday morning my dissection was discovered after a CT angiogram. After that I was on complete bed rest. I was transferred by ambulance to the Trent Cardiac Centre at City Hospital in Nottingham as they deal with the Type A dissections. To cut a long story short I had aortic root surgery on the following Wednesday, 1 week after my dissection. I now also have a St Jude mechanical aortic valve and will be on warfarin for the rest of my life, along with my other heart meds.

After being discharged from hospital one week after my operation, I was readmitted after a couple of days due to a severe infection in my arm where the cannula was inserted. Following that I was readmitted a further two times – once I collapsed while having blood taken for my INR (it turns out I had flu). This meant another week in hospital. The second time my INR was dangerously low, which was another week in hospital.
It is now almost one year on and life is pretty much back to normal – a new normal. My lovely wife, wonderful 10 year old twin boys and I have now relocated back to Australia, the Sunshine Coast, and I am in the middle of having my first annual check-up.

The amazing thing about my story is that we had moved to the UK (from Melbourne, Australia) 18 months earlier to spend time with my family. We were actually planning to relocate back to Australia on the day of my dissection but had changed our minds about two months earlier, deciding to extend our stay.

William Koch-45

Name: William Koch
Age at time of Dissection: 45
Type of Dissection: Ascending
Date of Aortic Dissection: 6 November 2016
Tell Us Your Story: As told by wife Cricket:

It was a normal Sunday. Watched football and then chores. We are in the process of remodeling our bedroom and Bill needed to get nails from our son’s house who lives about a mile away. He told me he would be right back. I continued the “demo” and my cell phone rang. At first it sounded like Bill was having a stroke as he said, “I….I….I….pulled over.” I immediately knew something was wrong. He told me where he was at and I grabbed my keys calling 911 at the same time heading out the door.

(Later I was told that I was actually Bill’s 2nd call. His first was to 911 who didn’t answer)

I reached Bill right as the ambulance arrived. He was rushed by ambulance to ER about 2pm of a suspected heart attack. Preliminary EKG was normal but still had chest pain and trouble breathing. Dr.’s kept asking what he ate for lunch and dinner the night before eluding to heartburn. They said they would keep him overnight for observation. I sent the kids home (boy 19, girl 15). As morphine wore off, pain increased and I insisted on a CT scan.
CT scan ordered. CT scan showed Thoracic Aortic Aneurysm causing an aortic dissection (rip). Cardiothoracic surgeon and team were immediately called. Surgeon explained seriousness of diagnosis and gave him a 35-40% chance of survival. Dr said mortality rate very high. Thank God his aorta (just) ripped because if it had ruptured he wouldn’t be here with us.

I called the kids to come back at 11:30pm to see their dad before surgery.
Bill went in to surgery shortly after midnight. Surgery done at about 5am. Dr said an anuerysm had been on his ascending aorta at least a couple years but it wasn’t found until it started to rip. They removed and replaced 7cm of his aorta.

Bill has 0 risk factors: non-smoker, low blood pressure, low cholesterol, 45 years old, athletic, not overweight, etc. Dr.’s attribute all of that to his survival but surgeon 100% sure genetic and insisted on having the children scanned and tested on a regular basis.

Bill has been home from the hospital a little over a week now. (He went to ER on Sunday and came home Friday) He is healing but gets short of breath just putting his socks on. Right now, we are just taking it one day at a time.

Rosalie Wetherell-49

Name: Rosalie Wetherell
Age at time of Dissection: 49
Type of Dissection: Ascending
Date of Aortic Dissection: 2 February 2009
Tell Us Your Story:

Hi, I’m Rosalie, AKA, Roe. I’m a Stafford type B ascending survivor. My dissection goes back a whooping 7 and a 1/2 years. It happened on Super bowl Sunday. I had spent the day alone because I had felt to lousy to go to a party with my husband. I was crazy restless and had, had extreme gas building up under my rib cage for the past 6 days. I had been throwing up every thing I tried to eat or drink. That night I finally fell asleep on the couch when an insane tearing woke me up. I knew some thing epic had just happened.

To shorten my story, 3 days later was when a young Dr. had the where with all to order a CT scan. and saw the very small part of a tear. He ordered a second scan on my chest and found the tear went up another 58 cm. They found room for me in an ICU unit in a hospital 30 miles away from my very small home town.

I don’t remember a whole lot about the ride over. I remember doctors swarming around me. Being rolled up and down hallways, in and out of elevators. The sound of nurses telling me to be still. I was in and out of my senses for what seemed a very long time.

Two days later I was being filled in on my situation. I had been admitted with a blood pressure of 260/190. and a heart rate of 136 and climbing. My prognosis was grim at best Here is where my story gets interesting. Three years earlier on Nov.2 cnd of 2006 my dad had been life flight to the very same hospital with darn near the exact same condition. My father was 83 years old when he suffered his AD. His dissection was located at his aortic arch. It was a complete blow out. The arch was actually severed in 3 pieces. He survived this impossible condition for 11 days.

I found out via an Aunt at my dad’s funeral that 1 of his brothers died during surgery at an attempt to fix an AD in 1996, my uncle was 83.

My team of doctors decided against surgery for my case. I was in ICU for 12 days and sent home with a sack of blood pressure medication. At the time of my release my blood pressure was at 138/127, my heart rate was 72, and I was some thing of an oddity. The nurses aid who was wheeling out to checkout area made this very odd statement, “I’ve never checked any one out of here before, I usually take them to the basement.”

On that note, here I am 7 and a 1/2 years later. I’m taking care of myself by staying on my medication and living an incredibly laid back life style. I have to say this one thing. (maybe this is why after all these years I’m reaching out to people who know exactly what it’s like to live with condition.) I’m not sure where or when this amazing turn of events will take me, but I know this for sure, my dissection changed my life for the best. I’ve been reunited with Christ, my family, met some brave,courageous people and found that my own life has meaning and boundless forward motion. I truly believe a positive out look is more than half the battle. I thank you for all the information you have provided. There was a lot of new things I have at my disposal if I decide to look into some different treatment options.

Stay alert and be ever on the look out. God bless you, Rosalie M. Wetherell.

Gracie Stanwyck-47

Name: Gracie Stanwyck
Age at time of Dissection: 47
Type of Dissection: Ascending
Date of Aortic Dissection: 17 April 2013
Tell Us Your Story:


My name is Gracie, and I am a survivor of an ascending aorta dissection. I had been home from work with a very bad headache, as well as something that I couldn’t quite pinpoint. I was very restless and had a feeling of doom before my husband showed up at home unexpectedly.

He had just asked if there was anything he could get me to help me feel better when it happened. My heart jerked twice before I lost my eyesight as well as any feeling in my right leg and arm. My husband immediately called 911.

I live in a very small community, so getting an ambulance to my house only took 5 minutes. I was taken to our local hospital and then flew by helicopter to Boise, Idaho, which took 57 minutes. A team was already waiting for me to arrive.

The surgeon that saved my life will always be my hero. I now have an abdominal dissection that I have to live with, and continue to have scans to make sure there are no changes.

It is very hard to live with the knowledge that I have a very fragile aorta, but the good news is that I survived.

Elizabeth Luipold-42

Name: Elizabeth Luipold
Age at time of Dissection: 42
Type of Dissection: Ascending
Date of Aortic Dissection: 13 September 2010
Tell Us Your Story:

I started feeling sick on the weekend but didn’t know exactly what was wrong. Ion Monday September 13,2010 I went to work but by noon my life would change forever. I got up from my desk and was lightheaded, chalked it up to a panic attack and went outside and called my family doctor just to be safe.

The office informed me to get to er as they thought I was having a stroke. Stubborn me, went back In to work but a coworker quickly put me in her car and off to the emergency room. Other then a little jaw pain, I had no symptoms!!

I figured I would be back to work in a hour or so. After a few tests, and a ct scan that was never finished because they saw the dissection, I was rushed back to my room and then told to get my family members In asap! As they arrived I was being prepared for life flight to the Cleveland clinic.

I was told to say what I needed to say as I might not be able to later. I had to tell my 17yr old and 15 yr old I loved them, knowing I might not make it to Cleveland for surgery. My husband was on the road working in St Louis Missouri and was driving to get to me.

I said my i love yous and good byes on the phone. I made if to the Cleveland clinic early evening and was prepared for open heart, still not realizing how bad I really was! After 7 hour surgery, I survived!!! I have another dissection that they are watching now!

And in 2013 I was diagnosed with thyroid cancer….this too I am surviving!!

Mike (no last name given) -47

Name: Mike not needed
Age at time of Dissection: 47
Type of Dissection: Ascending
Date of Aortic Dissection: 25 December 2011
Tell Us Your Story:

It’s really too long to write or type for that matter, but in summary, i had been training to run a marathon and on Christmas morning i ran a quick 7 miles after opening presents with kids and family. it was later that night after the days festivities that disaster struck.

I had just got ready for bed around 11pm when i felt a pronounced “pop” in my chest followed by intense heartburn and then pain down my right leg. I tried to ignore it by drinking water and sleeping but it didn’t help. my father had died during surgery for an Aortic Aneurysm and that memory kept me awake so i called my fiance’ and told her to take me to hospital or I was going to dial 911.

My fiance took me to hospital where i was diagnosed with a type A dissection of aorta . I was then rushed by helicopter to Beaumont hospital in royal oak Michigan. I survived the surgery to repair aorta and also a section of my femoral artery.

I suffered a massive stroke during surgery. i was in coma for 3 weeks then i spent 3 months in a rehabilitation program relearning how to walk ect. because of stroke.

Karin Bertozzi-46

Name: Karin Bertozzi
Age at time of Dissection: 46
Type of Dissection: Ascending
Date of Aortic Dissection: 16 October 2014
Tell Us Your Story: October 16th

A day of new meaning for me. One year ago today after teaching two great classes, I fainted in a local market while getting lunch. In a matter of minutes, everything in my life changed. I was rushed via ambulance 2.2 miles to Suburban Hospital (part of the Johns Hopkins network of hospitals and directly across the street from NIH).

It was very quickly discovered that I was suffering from an ascending aortic aneurysm with dissection. 12 hours later I emerged from surgery with a new and improved section to my aorta, a repaired valve and lots of uncertainty surrounding my prognosis. 18 long ICU days later I was sent home with over 16 major meds in my bag and a double chamber pacemaker implanted under the muscles of my left chest. 10 weeks later I was released to cardiac rehab. After 12 long months of physical therapy, emotional therapy and spiritual questioning, I have maybe? found myself “close to being” on the other side of this (for now)

It is said the average adult heart beats 35 million times in one year. I can honestly say I have felt every one this year. Strong and faint, happy and sad. Beats that are irregular, beats that are strong and syncopated. I have felt beats that have been filled with life and beats that have felt lifeless. I have felt fast beats and slow beats. Beats filled with confidence and many filled with fear.

I swear the sound of my heart beating fills a room, especially at night when the house is quiet.

Somebody asked me if I was going to do something special to mark this “aorta-versary”. I am happy to report today has been a very normal day. The weather was perfect (much like a year ago). My normal day unfolded – school carpool, a quick stop at the grocery store, rehab, Mass, 7-11 for a Slurpee, high school volley ball game, and out for dinner. There is something to be said for normal.

Celebrate the normal. Health is a gift. Every heartbeat should be felt.

Thanks to all who have gotten me through this year. I can’t say that enough.

So grateful, every day.

Andre Williams-41

Hi, my name is Andre Williams. I had an Aortic Dissection Feburary 14, 2012, six month before that I had a Hemorrhagic Stroke on right side of brain. Both were do to high blood pressure.

I was first diagnosed with with high blood pressure (Hypertension) when I was 24. The only problem then was I didn’t take it seriously. All of my Doctors told me, my blood pressure was off the charts. As I got older I started taking it more serious. I guess not serious enough. In my mid 30’s it started to get worse. Every time I saw a Doctor, my pills were increase.

On June 26, 2012 my Anniversary. It all began. I was at work and didn’t feel good. I told my boss I was going home. Driving on the way home, I took a different way then normal. I was hard for me to turn. I turn the wrong way. When I finally got, home. I stumbled up the stairs as my wife asked me whats wrong. Then tried to used the bathroom couldn’t unbutton my pants she had to help me. I laid across the bed. My wife felt my arm, she said ” your arm is freezing cold” I wanted to take a nap but luckily, she called for help, I was having a stroke. When I was at hospital, they told me I had a brain bleed stroke (Hemorrhagic). She saved my life

6 months later I was in driveway talking to a friend. I waved by and felt a twinge in my upper back in between my shoulders. I was a pinched nerve in your neck, but the pain was intense. I couldn’t get comfortable at all. Finally I told my wife, I was going to go out back and get in the hot tub. The lid was to heavy. So I took a long hot shower. It felt great, took a lot of pain away. The next day the pain was still intense, So I had my family walk on my back to crack it. The next morning I soaked in the bathtub for about 2hrs. Then my wife came in and told me I looked blue. She told me we were going to the hospital or she was calling my mom. Didn’t want to hear it from mom.

Now we are at St. Ann’s Hospital Westerville, OH. We go in the check my blood pressure its 210/147. So they rush me back I tell the Dr. I need something for pain. My records show that I hate pain pills. She ask if she could do a CT scan, that’s when it hits the fan.

The Dr. returns and tells me the pain is from a hole in my aorta. Also I had to be life Flighted (helicopter) to another hospital. I wouldn’t go that way. They squad me to Mt Carmel East. Where Dr. Patrick Wells is waiting for me. He told my wife and I, that I had to have emergency open heart surgery. Not to mention that there was a high chance I could pass. I Asked if, I had time to call my family. He said no, “you were already bleeding to death for 2 1/2 days, we are behind the 8 ball.” I kissed my wife.

God is good and my wife is smart, because I’m still here. I now take 14 blood pressure pills a day. That’s the only way to control it.

I do have a question, does anyone who had this surgery think about dying every time they think they feel something.

Thank You for listening,
Andre Williams
” We are all survivors”

Monique Hoekman-48

Name: Monique Hoekman
Age at time of Dissection: 48
Type of Dissection: Ascending
Date of Aortic Dissection: 4 April 2014
Tell Us Your Story:

It was another Friday evening, I was at home with my hubby when i suddenly felt the need to go to the toilet. My husband asked: Hey, what are you doing? You cant even stand on your feet! I felt an incredible pain on the chest and from that moment my lights went out.

My husband grabbed me from the floor and called 112 (911) It took only 5 minutes before the ambulance arrived. They brought me to Isala Clinics in Zwolle and after some examinations I got diagnoses: Aorta-Dissection A. It would be very risky operation and my family said goodbye. For some reason I feel Lucky I cant remember a thing from that night.

It must have been a horrible night. In the morning my husband was called, the operation had been successful. During the operation they put me on the heart/lung machine and cooled my body to 18C During that time I experienced to be in a space with soft lights shining on both my parents ( they passed away couple of years ago) they were just standing there in front of me, we didn’t speak and it felt good. no emotion at all. How long t took I really don’t know, maybe 5 min, maybe an hour but suddenly my dad said: ” No, you cant come with us yet ” and they were gone.

Has anyone else the same experience? When I woke up I already left ER and I had to stay in hospital for 10 days. Slowly I realized what happened. There is a chance that I need another operation because of the damage the dissection caused the first time and it scares me. I will never be the same, but every morning when I wake up I more than grateful and I never take things for granted anymore, coz got a second chance and that’s more than I deserve.

Jamie Fitzgerald-41

Name: Jamie Fitzgerald
Age at time of Dissection: 41
Type of Dissection: Ascending
Date of Aortic Dissection: 24 July 2014
Tell Us Your Story:

It was July 24 when i had just spent the day out shopping with my wife. i arrived home and watched a bit of tv. My wife went to work.

I remember i had been feeling a bit off over the last few weeks and even went and seen a doctor sent me for some blood tests. Due to my shift work as a police officer i didn’t get the chance to have these tests done. (not that it would have helped)

Anyway i began to feel a little off i went into my ensuite and begin to splash water on my face. I remember feeling a blood rush up the left side of my body which felt like an explosion in my head. I stood there for a minute looking in the mirror wondering what had happened. I then left the ensuite and sat on the end of the bed. Something didn’t feel right i had a severe pain in the stomach and felt ill. I laid on the bed thinking that a rest might fix it (being a stubborn male) My 4 year old son was in with me i remember him going through the drawers making a mess. I then don’t remember what happened for the next 3-4 hours. My wife returned home and was yelling my name i sort of came to and could see a huge mess in the bedroom. i looked up and mumbled to my wife i might just hop into bed. My wife noticed that i didn’t seem right and appeared to be in a dazed state. She said i was looking grey. She rang her mother who was a couple of minutes away. (i don’t recal
l this) As soon as she arrived she started yelling my name. i could hear a muffled voice. I recall her saying call the ambulance.

10 minutes later i was awoken again there were two paramedics standing over me. They tried to take my blood pressure several times but weren’t getting anything. my wife recalls seeing their faces. They really had no idea what was going on. I was then placed on their trolley and put in the back of the ambulance i remember lights in my face and people trying to talk to me. I was very scared at this time. Apparently i kept slipping in and out of consciousness.

I don’t recall anything else from here on so i these words are from my wife.

I arrived at footscray hospital apparently looking like a smurf. A specialist paramedic had boarded the ambulance half way to the hospital. He had told my wife he really had no idea what was going on but it was very serious. He though there was some kind of blockage around my heart which he told the doctors when i arrived at hospital. Once i arrived it was all hands on deck my vitals were shutting down a heart specialist started to stick a drain in my chest and started to drain blood out continuously. Apparently my vital started to pick up and they stabilised me. A CT scan confirmed that my aorta had split and immediate surgery was needed if i had a chance of living.

At this time they arranged for me to be rushed to another hospital where Heart Surgeons were on standby. My wife was told to come in and say good bye to me in case i didn’t make it. She refused to do that. I was rushed to the Royal Melbourne Hospital prepped and straight into surgery. At this stage all my family were on there way in.

My wife was told the longer i was in surgery the better chance i had to survive. The surgery lasted for 9 hours. Part of my Aorta was replaced and my aortic valve was replaced with a mechanical one. my wife recalls the moment one of the surgeons came out and gave her a thumbs up.

It was approximately 2 days later that i came to. I didn’t recall a thing. I remember the Surgeon coming up to me and shaking my hand and telling me i was one tough bastard. He thought i had less than 10 % chance of making it through the surgery given how far along the dissection was.

All my vitals seemed ok but my kidneys were struggling a little. Somehow i didn’t need a blood transfusion which was to the surgeons surprise. I spent 9 days in hospital. I also found out that i had part of a descending dissection which will be monitored and treated with medication.

i am on several types of medications for blood pressure and warfarin for the mechanical valve. It has been 11 months to the day and it has been a slow recovery. The medications have been harsh and on most days i will suffer nausea and tiredness.

I returned to work at the start of December for 2 days a week doing desk duties. I am now up to 4 days a week as i wait to face the Police Medical Doctor to determine my future within the police force. It is possible i will deemed unsuitable. The job is stressful so no longer suits my lifestyle.

Before my dissection i was very fit. Played basketball pretty much all my life and worked out at the gym on a regular basis. I have since seen a genetic specialist and am awaiting for the results.

I try to have a positive outlook on life but at times struggle. I am grateful for my second chance and now need to figure out what is going to suit my lifestyle if i am no longer suitable for the force.

I would like to say all the stories on here are inspirational. it is nice to know that so many other people in the world can share their stories.

Stay positive people….i know i am trying.

David Osborne-46 told by sister

Name: Sharon Osborne
Age at time of Dissection: 46
Type of Dissection: Ascending
Date of Aortic Dissection: 31 May 2015
Tell Us Your Story:

My name is Sharon, my lovely brother David who was 46 years passed away Sunday morning 31/05/2015 post mortem was complete with cause of death as:- Cardiac tapenade due to haemopericardium. 1B.
Rupture thoracic Aortic dissection.

My concerns are that David’s death could have been prevent, David collapsed 3 days before is death with a pain from his groin right up to his chest and had cheat pain and breathing difficulties, ambulance came did a did a quick ECG of his heart and check his blood pressure and took him to hospital.

A Dr. at hospital was told of David’s collapse and pain that he had suffered just before he collapsed although the pain had lessoned David had quite bad lower back pain, Dr ordered tripon test for heart attack one at 9pm and another at 2am in the morning, both come back negative. David also had a chest xray dr said for checking of collapsed lung, this come back clear.

Dr allowed David home and David passed away 3 days later. David was in good health generally although was prescribed antibiotics 4 days before his passing for a chest infection, I am tormented by the fact that my brother could have been saved if a scan and the aortic dissection was diagnosed at the hospital.

Please let me know your thoughts, thank you.

Roelie Pomstra-Melein-47

Name: Roelie Pomstra-Melein
Age at time of Dissection: 47
Type of Dissection: Ascending
Date of Aortic Dissection: 26 December, 2014
Tell Us Your Story:

Dember 26th I woke up in the morning and felt really bad. I felt tight in the chest and I asked my husband to call the emergency service. Luckily my husband did not discuss this and called the emergency services. We live in a small village and it is difficult to find our house so my husband went outside and walked towards the main road. After 10 minutes the ambulance came and the paramedics started their examination but could not find what was wrong with me. They took me to the nearest hospital in Assen. They thought maybe it is a heart attack pulmonary embolism. In the hospital I told the ER doctor what my symptoms were and that I was never been sick before. I work for the airline and I have never called in sick for 26 years. I do not drink, not smoke and work out for at least 4 times in a week. (Spinning, bootcamp and bodypump) The ER doctor immediately ordered a CT scan which was a really good decision.

This showed that I had a aortic dissection type A (ascending) and it was a massive one. I was rushed to another hospital in Groningen. The UMCG. They perform open hart surgery here. When I arrived in Groningen my children and family was there and I had to say goodbye. The situation looked so bad that the surgeons did not think I would made it throughout the surgery. It was the most horrible moment of my life. But I did made it! After 12 hours of surgery and being om the heart lung machine and my body was been cooled down for some time they brought me to the intensive care. I woke up 2 days later. The doctors told my husband to bring friends so I would wake up from their voices. I was on artificial respiration for several days. I also had a few complications: a pulmonary embolism and a thrombosis arm. At night I had deliriums, but the nurses told me that was quite common after such a long surgery. The surgeons ( I was lucky to be operated by the best thorax cardio surgeons in the hospital: Prof. Dr. Mariani and Dr. Koene) replaced the aortic arche. The aortic valve was in good order and did not need replacement.

After 9 days on ICU I was transferred to the normal thorax ward. My condition was very bad and it took me a lot of energy to walk a little. I also started to suffer heart fibrillation, but that seemed to go away. On January 12th I was released from the hospital and could go home! But after 1 day the heart fibrillations started again and I was being send to the hospital again. There I underwent a cardioversion. Then back home and I could rest for 6 weeks. During the emergency surgery my vocal cord has been paralized. I got speech therapy and now my voice is audible. After the 6 weeks of rest (of course I walked a little every day and did small things around the house) I drove in my car to the gym. There I started to work out again but of course in a very slow and easy way.

In the end of March I started the program of the cardiac rehabilitation. That consists of doing exercise in a group and cardio fitness. It is going very well! At the end of April I had a checkup with the cardiologist and he was satisfied and surprised how well I was doing. I asked of I could have 1 medicine less and he agreed. Now I have 4 medicines in Total: 1 blood thinner, 1 stomach protector and 2 high blood pressure tablets. I have seen a clinical geneticist because I would like to know why this happened to me. I am to young, no smoker, no t drinking alcohol, eating healthy, no overweight and never ever been sick, and exercising a lot. Now my DNA is been tested on connective tissue disorders. In July The results are expected. For the time being it is very important to keep the blood pressure low. I would love to get back to my work but that is the big question.

I am a flight attendant and the work is physically heavy. My cardiologist tells me I have to be very care full with static effort. So no more body pump. So I am Looking for other people with an aortic dissection type A and if they recognize any limitations with static effort. According to a lot of doctors I had a lot of luck to survive this aorticdissection and thanks to my condition I have had a very quick recovery. I hope to find some fellow sufferers! I live in The Netherlands but I hope that will not be a problem since we now can communicate via the mail! Thank You, with all the best wishes for your health,
Roelie Pomstra-Melein

Denise Agre-Gill-47

Name: Denise Agre-Gill
Age at time of Dissection: 47
Type of Dissection: Ascending
Date of Aortic Dissection: 30 October 2014
Tell Us Your Story:

M y husband, Kevin, suffered an aortic dissection in the early morning hours (12:15 AM was surgery time) of Oct 30, 2014. He stated earlier on the phone to me(he was living and working in Des Moines as the Fire Chief of the Des Moines Airport for Pro Tec Fire Services)that he felt like he had the flu and was headed to bed. About an hour later he called and stated he was going to the ER by ambulance due to back pain chest pain and jaw pain.

He called frequently to keep me updated at the ER and at midnight he called to say they were taking him into surgery and that the surgeon told him to call tell me what he wanted to tell me because it may be the last time he ever got to talk with me. Kevin was in surgery for 10 hours. He woke up out of surgery and was fine until the morning of Oct 31, 2014 when his right carotid artery dissected and he suffered a stroke. This was repaired in the cath lab. He was sedated because of pain of the next ten days. It was very much touch and go.

He was in the Cardiac ICU for a total of 14 days. The ICU nurses were AMAZING at Mercy Hospital in Des MOines, especially Nadira! His dissecting had gone over the aortic arch into the common carotid and up into the right carotid into the right subclavian. We were blessed! He is a miracle! He came home to Columbia, MO for rehab and he then suffered a pulmonary embolism. They had trouble regulating his blood pressure meds and he kept passing out. All this was dealt with and then his right femoral artery form a huge clot so they just got done by passing that.

He is doing well, but his work fired him for this condition. He is trying for disability but it’s hard because he is not 50.The government prefers you be 50 for disability. He is trying to find a job but no one wants him with this medical condition. We are taking one day at a time and hoping for the best

Kirk Billingsley-49

Name: Kirk Billingsley
Age at time of Dissection: 49
Type of Dissection: Ascending
Date of Aortic Dissection: 29 November 2009
Tell Us Your Story:

Hello my name is Kirk Billingsley and my aortic dissection occurred in my sleep. I was to travel to California for business the following morning and I went to bed early after feeling a strange pain in my neck. I do not remember anything after that point. I woke my wife in the middle of the night with what she had said were gurgling sounds.

Paramedics were called and I had already released my bowels and was being resuscitated. I was taken to a local hospitals ER that was not a trauma 1 site and was immediately flown by copter to the nearest trauma 1 hospital, the largest in the state. I was very lucky that the ER docs at my local hospital diagnosed my illness correctly and early on. I had flat lined when I hit the table just after landing where a team of surgeons began surgery. My tear was repaired, then I was opened again due to massive blood clotting and additional tearing. Somehow in IR I developed compartment syndrome in my right leg and it was a few days later that I had my leg amputated above the knee.

I remember none of this up to that point. I was in the hospital for 30 days. As you can imagine, this was quite a hard time for my family. My children both in middle and high school had to work through this ordeal as of course my wife did as well. I have always felt a certain amount of guilt having putting them through this. I learned to work with a prosthesis very well to the K4 level and even relearned to snow ski on two skis. I continued on as a regional v.p of sales for a few years but the traveling and pain in my residual leg was too great and took another position working at home with the same company.

I have since had my aortic valve replaced and after my last CAT I’ve been told it is failing and I have a 4.8cm aneurysm not too far from my repaired area. I see a Cardio doc at a children hospital that also studies and treats adult connective tissue disorders.

Marfans was ruled out and I have had genetic testing. Today I am more concerned about my children and their health. They have all been tested and treated by my cardio doc. They undergo heart scans yearly. So far nothing as been an indicator that there is anything wrong with them but they do have some side effects that have us deeply concerned. Right now I feel as though I am just waiting to die and I was a bit motivated by the ref in today’s Super Bowl that also had an aorta dissect So that’s my story. Thanks

John Quick-46

Name: John Quick
Age at time of Dissection: 46
Type of Dissection: Ascending
Date of Aortic Dissection: 10 March 2006
Tell Us Your Story:

It was just another day, getting ready to go to work and about to drive down one of the busiest stretches of motorway in Europe. I was sitting on the bed, stood up and felt like the top half of my body was detaching itself from the rest. Terror flooded me. I knew instantly that it was something catastrophic and I remember calling out “I do not want to die!” as I staggered towards the bedroom door.
I remember those few steps and seconds, but curiously from behind and to the left of me, like a camera recording it.
Then nothing.

About twenty minutes later (I have since calculated), for some reason, I regained consciousness. But there was total nothingness. I had no idea what I was, or who I was, where I was or what being ‘where’, was. But gradually my identity returned to me and I knew I needed help. I tried but initially could not, remember what the number was for emergency services.
In London because of its size and high density traffic, paramedics tour the city on motorbikes, so they can get to people ahead of an ambulance. So – “Can you get the front door open?” A simple, obvious but crucial question.

I have read many stories on this site about misdiagnoses of aortic dissections and how the critical tool for diagnosis is a CAT scan. Luckily for me at Charing Cross Hospital in London, they scanned me straight away and found the problem, but its comparative rarity or the lack of exposure of ER Doctors to it, was shown by me hearing the cardiologist explaining to the main medic on duty “Can you see it…it’s there…” Doctors learn on the job, how else can they?

Not much was explained to me, but I was told I had a problem and would need surgery and was going to be transferred to another hospital. I felt reasonably stable though I was probably sedated by this time. But I remember the feeling of a heavy weight on my chest and one moment when a sudden pain went through my back that was so strong, that I’m pretty sure I levitated off the gurney. I could see it alarmed the Doctors. By now my stepson had arrived at the hospital and as they prepped me ready for the transfer (catheter etc.) a team formed at the end of the bed waiting – two Doctors, two ambulance men. There seemed to be a long wait, apparently for an anaesthetist. Suddenly the female Doctor went ballistic “what the f^^k are we waiting for – we need to f^^king go now”. I heard this and looking back now, it all felt surreal. A short time before, my everyday life was proceeding and now it seemed control of my life was slipping out of my hands. That things were obviously very ser
ious, was confirmed when even more medical staff climbed into the ambulance, including the cardiologist. I would later learn that my aorta had leaked five out of the eight pints of blood into my body, which obviously causes massive blood pressure drop and the high possibility that the heart will stop with so little pressure and blood to pump. I felt fragile in the ambulance, weary. I was afraid but accepting at the same time, if that makes any sense. A phone was passed to me and I spoke with my wife who was in Spain at the time. She told me to hang in there for everyone.

On arrival at the Hammersmith Hospital, a surgeon waved a piece of paper at me. “You need to sign this, John” I hesitated. “You don’t have a choice, John” Then there were those few seconds as the anesthetist did his thing and I wondered if I would ever wake up.

The following day at around midday, I did.

I had suffered a Type A Aortic dissection, which had been repaired with a Bentall root replacement (prosthesis). My aortic valve had been damaged and this was replaced with titanium. As everyone who has suffered this knows, this surgery is complex with the connective tissue of the aorta often compared to wet toilet paper – a nightmare to work with. I’m in awe of these surgeons who are artists with their skills in such repair. Because fitting a new valve is such a delicate and precise work a pumping heart makes it very difficult, so the heart is stopped while this is stitched in and the patient kept alive on a by pass machine. I reflect back sometimes on those hours of which I know nothing and during which Mr. Punjabi and his team saved my life. Thank you, Sir for your selfless work during the surgery and after, when you were so compassionate to me, and when you toured the wards and could tell I was in a lot of pain.

The next few days in intensive care, were a blur. As is customary, it seems, two nurses on rotating shifts, sat on a raised platform with an array of machines and data and kind of ‘flew me’. Oxygen was blasted into my lungs for hours to get my lung capacity up. Pain came intensely with a post- operative pleural effusion, but also in tasks that I had previously taken for granted, like breathing. I also had atrial fibrillation. But I grew stronger.

Not long after it seems the lower half of my aorta dissected from the prosthesis down to the bifurcation in the legs. This I’m told is too extensive to operate on – there are too many risks of blood loss, paralysis, and organ damage. Now that I actually have studied my aorta, I can see why, as I appreciate what a supply highway it is to all parts of the body – kidneys, liver etc. This condition is managed defensively by blood pressure medication and beta-blockers, with the aim of reducing any spikes in pressure, which might stress the aorta and risk widening the dissection or worse, and to generally keep blood pressure in the 120/80 range. I’ve come to notice how blood pressure rises for me are very emotionally related. If I am worried about something it will rise. Even the anticipation of taking it can cause a big increase, (evidently the fear that it might be high), which then comes down dramatically as I take subsequent readings. How the mind and emotions can play with us!

This whole event has been life changing in so many ways. There are positives as well as negatives. Having been so close to death, I am more sanguine about its inevitability and aware of my own mortality. I try not to sweat the small stuff and I think I am more resilient to life’s knocks, They’ve come a plenty as the injury has caused an economic tsunami for my family. But it has also made me look at how I live my life and pushed me to take on projects that I always wanted to do.

I have now trained in counselling, specializing in hypnotherapy and in helping people who have suffered life changing events and struggle with the trauma of that (often labelled as PTSD – post traumatic stress disorder) Having been there myself, I understand the challenges, the rehabilitation, the worry, the loss of confidence, the fear of the future and daily life, to name but a few.

I’m happy to offer members of the forum help in managing many of the issues we all encounter – fears, change of lifestyle, depression, anxiety issues with meds etc.

Daryl Lilburn-47

Name: Daryl Lilburn
Age at time of Dissection: 47
Type of Dissection: Ascending
Date of Aortic Dissection: 13 October 2013
Tell Us Your Story: Hi

My name is Daryl Lilburn, I am now 48 and work in the finance industry. I live in Sydney, Australia, and up until October last year one of my hobbies was long distance running – I had run six marathons over the past several years and was training for the Honolulu marathon in December.

Just for some background, I had had testicular cancer when I was 21. This was pretty extensive – there were tumors in my lungs, liver and lymph glands down my spine. The chemotherapy was very intensive but thankfully I made it through. I thought I had used up my “Get Out of Jail Free” card back then and had always assumed that next time in a life threatening situation I would not be so lucky. There were not at that time a lot of people who survived having cancer so extensively.

Part of my philosophy then was to keep as fit as possible. I traveled to Melbourne to run the Melbourne half marathon on Sunday 13th October 2013 as a sort of training run. I ran very well and was very happy with my time. That evening I went to the airport to fly back to Sydney. Just as I was sitting down at the airport terminal I felt a horrible feeling under my lower jaw, and a very uncomfortable indigestion like feeling in my chest. On a hunch I took out my iPad and googled “heart attack symptoms”. I got the shock of my life to find my symptoms matched and I should get help ASAP.

I rang my wife who was home in Sydney. She told me to go see the Qantas staff. As calmly as I could I walked up to some Qantas people and told them “Excuse me, I think I have heart attack symptoms”. They sat me down, kept me talking and called the ambulance. At this stage I thought it was probably just a muscular problem in my neck.

When I got into the ambulance my ECG was taken. The ambulance guy said “I don’t think you are having a heart attack but there is something funny on your ECG”. When I got to the hospital they took a quick CT scan. A doctor eventually came back and told me that I had a hole in my aorta, and that I only had a few hours to live if they did not operate straight away.

It was about 10 pm at night by this stage, and they had to call all the staff in to perform the surgery. I was told I would have to have a graft on my aorta from a vein in my leg, and that I may have to have an aortic valve inserted – they weren’t sure from the scan.

I called my wife and gave her a running commentary as I was being wheeled into theatre. This helped calm me down. The last thing I recall they were shaving my chest and the anaesthetist put the mask on.

The next thing I recall was a nurse saying “Daryl, its 4 pm on Monday – your surgery took 12 hours”. I was in ICU and my wife had flown down from Sydney. I recovered quickly from the surgery – far quicker than expected. The theory was I had done so much long distance running my brain was used to running on low levels of oxygen. The surgeon also told me my high level of fitness had probably saved my life.

I took six weeks off work as I recovered from the operation and got used to the fact I now had an artificial heart valve. I had been through a major life threatening illness before so I already had an appreciation for how precious every moment is – but over the ensuing weeks I still had nightmares and sometimes, in the evening, I would feel very afraid for no clear reason. I also had a lot of trouble coming to terms with how the heck I ever got two “Get Out of Jail Free” cards.

I am not allowed to have my heart rate go above 125 bpm, and have restrictions on how much weight I can lift. Up until now, I have not been allowed to run, but since I was told I could walk as much as I liked I winded up walking 10 km or more per day.

The cardio finally told me I could run a couple of weeks ago (still observing the bpm limit). Its slow going, and I often have to stop to walk, but its a nice feeling to be out running again.

The cardio believes I have a genetic disorder that caused my dilated aorta (which I had no idea of until the aortic dissection occurred). She also thinks high blood pressure (for which I had been taking medication) probably contributed.

It has helped a lot reading the stories from other people on this blog, so I thought I would contribute my own. Would like to hear from anyone else with the same problem on their approach to exercise after recovery from an ascending aortic dissection. I now feel very good and as “normal” as I will probably ever feel. And good luck to all of you!

Michael Sullivan-45

Name: Michael Sullivan
Age at time of Dissection: 45
Type of Dissection: Ascending
Date of Aortic Dissection: 16 August 2009
Tell Us Your Story:

Life was on cruise-control. I was one week past my 45th birthday, had a good job, house, family and no health issues. 2 years prior at a regular checkup, my PCP noted that my BP was elevated to 170 / 90 and asked me if I would consider going on meds to lower it but I resisted, saying to him and myself “I can lose 10-15lbs and exercise to control it naturally”. I missed my follow up with him the next year and the house of cards came tumbling down two years later on Sunday morning 8/16/09.

Unlike most of the stories I’ve read here, I had no pain when it went down. I woke up around 9 on that Sunday and made my way downstairs. Along the way I noticed that my right side was uncoordinated. My right eye was blurry and depth perception was off. I reached for door handles and missed and walked with a limp. My wife Karen and I both knew it wasn’t a typical ailment. I did the only thing I could think of and took 2 Advil. We got in the car and went to a regional medical center. The doc there knew right away that it was the aorta and scrambled a Life Flight out of there to UMASS in Worcester Mass.

Somewhere between the two hospitals I started to get pretty moderate pain in my right shin and started sweating profusely.

I arrived at UMASS and met the surgeon Dr. Okike. He explained as patiently as possible to me and Karen that this was as about as serious as it could be and that I needed surgery right away or I wouldn’t survive a day. He operated on me for 14 hours and during the operation I had several strokes. (I dispute that theory because I feel that I was exhibiting signs of stroke when I woke up at home .. whenever it happened, my brain fried a bit due to lack of blood / O2 and I am left today with blindness in my right eye and some other smaller deficits ). the After the surgery I went into the ICU and the MD staff told Karen “IF he survives this, he will never walk again”. My kidneys failed and I stayed in a coma for over a week. I had terrible psychosis while in the induced coma and it took a good few days or maybe even weeks for my mind to clear after waking up. I fought against anyone who touched me and tore out tubes and wires. When I did wake up, I had to be on dialysis every
day and seemed to be in a CAT scan or contrasting dye MRI every other hour. Somehow I made it out of there and into a rehab hospital and eventually home on Veterans Day 11-11-09.

Miraculously, my kidneys both started to function again and I no longer require dialysis.

Follow ups with UMASS Cardiology (Dr Robotis) showed that my repaired aorta had started to narrow and my heart function was pretty negatively impacted so he referred me to consult with Cardiology at Mass General (Dr. Eric Isselbacher and Patricia Riley) and they gave me the news that the repaired aorta was going to have to be redone. Dr. Thomas Macgillivray did an “elephant trunk procedure” on Memorial Day weekend 2010. They even managed not to laugh when I asked them “will you be using an actual elephant’s trunk to do it then” ?

Since the 2nd surgery, things have slowly improved. I used the following analogy to explain to my sister and it still holds true :

Imagine you’re living on the roof of a 100 floor building and one day you fall off but survive.
When you wake up the doctors tell you “you can climb back up and get your life back to normal but you can only go one step up every day”
It is a demoralizing thought but slowly and surely you climb up one stair every day.

A week goes by then a month then a year and you look behind and say “wow I’m not back to the top (my old life) but I am putting some stairs behind me”

That’s where I am now, somewhere between the ground and the 100th floor, glad to be alive with my family but still scratching my head wondering what’s going to happen next.

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