Category: Descending Page 1 of 9

Kurt Zivelonghi -57

Type: Descending
Age:57

It all started when I was watching TV. I bent over to look at my computer, and this pain felt like someone was taking a knife slicing me up the middle and up into my chest. At first, I thought that I may have strained a muscle because I was into working-out with weights but after a few minutes of this pain I knew something was terribly wrong.

I had this instinctive feeling that I couldn’t wait for a ambulance so I took myself to the hospital which was only a few miles away and I knew exactly where it was, because it was right next to my bank. When I got there they asked me all these questions about my pain, how severe it was and told them it was the worst pain that I ever felt, and if I felt nauseous.

After some tests, they told me that my aorta was splitting apart and I knew that having an aorta splitting apart is a serious situation. They gave me some morphine and prepared me to be transferred to another hospital which had a heart specialty facility. When I arrived at the hospital I was immediately put in cardiac Intensive care unit where I spent a few days talking to the nurses and family members.

After about the second day I fell into a coma and all I remember are these weird dreams . After 3 weeks I finally woke up by prodding by the nurses. Evidently, they wanted to come out of the coma, because what I heard was “Kurt time to get up” and them pulling at me to get me on my feet. They didn’t pull in a hard way, they were gentle with me.

I remember in my dreams was them making me stand up and sitting me in this chair. After six weeks I finally was released from Cardiac ICU and sent to physical rehabilitation for a week where I learned to walk and swallow again.

And finally released to my brothers care where nurse came for two weeks.
the effects were that my left hand is paralyzed, depression and sundry other problems and when I left rehabilitation they gave me about 15 prescriptions yo take for my blood pressure and various other problems.

Dominique Pair-69

Name: Dominique Pair
Email: mdpair@earthlink.net
Age at time of Dissection: 69
Type of Dissection: Descending
Date of Aortic Dissection: 9 January 1916
Tell Us Your Story:

After a night with friends at the movie The Revenant, and feeling wonderful
Arrived home and began to feel like there was a vice tightening around my neck.

Living a mile from Emory University and Emory emergency room and realizing I was experiencing a very very strange sensation I jumped in my car
and drove myself to Emory emergency room having sent my boyfriend home
earlier.

Miraculously I was diagnosed and in emergency surgery within 45 minutes with less than 50/50 chance of survival. Thanks to Dr. Steven Macheers,and team, Who happened to be on site for a conference that night he saved my life, and I feel wonderful today or year and a half later !!!!!

Tony Taylor-65

Name: Tony Taylor
Email: mandmboy@yahoo.com
Age at time of Dissection: 65
Type of Dissection: Descending
Date of Aortic Dissection: 3 March 2014
Tell Us Your Story:

I have been monitoring this excellent forum for three years, and I thought it was about time for me to weigh in here. I am doing it mostly to offer an alternative set of circumstances that can indicate an aortic dissection. In a nutshell, three years ago I had a small hemorrhagic stroke, and in the course of the diagnosis the doctors discovered that I had a Type B aortic dissection that extended “all the way down.”

The point I want to make is that my dissection was accompanied by no pain whatsoever; the stroke and dissection were completely unrelated. So in a sense that stroke was the luckiest thing that ever happened to me. It revealed a serious problem that I might never have found out about until it was too late.

In the intervening three years I had an endovascular aneurysm repair, but I am fine. I have been lucky with no pain. From this point on it’s all about blood pressure control and being careful with what I lift and how I lift. So except for the initial few weeks of being scared, I have gotten on with my life with only a few common-sense changes.

Richard Reed-65

Name: Richard Reed
Email: richardcreed702@gmail.com
Age at time of Dissection: 65
Type of Dissection: Descending
Date of Aortic Dissection: 22 April 2017
Tell Us Your Story:

I was on a motorcycle trip with a a good friend in rural Eastern Washington State. We were spending the night in a nice old hotel in Republic after a day of riding mountain passes, exploring small towns and enjoying the views of lakes, rivers and mountains. My friend Ed was in bed, finishing up his journal entries for the day and I went to take a shower. Bending over to wash my feet I felt like I had been stabbed in the chest by a bayonet.

I figured it was a bad case of indigestion and tried to go to bed. After 3 hours I knew this wasn’t right and woke up Ed, told him I was having chest pains and to call 911. Ed’s a test pilot, having served in the Marines, so he remained calm, took charge and got on the phone. After giving the operator our location and room number there came a knock on the door. Ed opened it to find the hotel owner telling us he’ll have the paramedics back right up to the door. Turns out he was the towns fire chief. Ya gotta love small towns.

They got me to the local hospital where all the typical heart tests came back negative. The on-call doctor, who happened to be the Chief of Staff at the hospital (them small towns again) noticed the chest x-ray showed an enlarged aorta and called for a medevac helicopter to take me to Spokane where they had an excellent cardiology unit.

By now I was on a morphine drip, and chatting with the flight crew of the helo. I wanted to try their night vision goggles as I am an engineer for the FAA and helped certify a few of these. Anyway, after arriving at Spokane they gave me another battery of heart tests including a stress nuclear test, only to find nothing wrong. FINALLY after a change in shift, the doc looked at my CT scan and knew I had a Type B Aortic Dissection, and immediately changed my meds and stopped the tests.

Spent two days in the hospital, then my wife who is a nurse drove me home to Seattle. A cardiologist at the hospital where she works took on my case and directed me to stay off from work for 6 weeks. After 6 weeks I started working part time and slowly increased my time, but finding it difficult.

Three months later I am back at work full time, and am doing OK. Still can’t lift anything heavier than a ham sandwich and can’t play with my grandsons, but they still like to cuddle and let me read to them or watch Pixar movies. And no riding motorcycles, which is a bummer but I am alive.

The couple who ran the hotel put my bike in their shop to keep it safe, and my sons drove over in my truck tow weeks later to bring it back home. Love them small towns, and they are now our friends.

I still have trouble keeping my BP low and am on a dozen or so pills. My job is stressful so my bosses and I are working on a plan to keep the stress low until I retire in January 2020. It bothers me not being able to take care of my home and turning these tasks over to landscapers, and worse, I took my truck to Jiffy Lube for an oil change. I always took care of my owns stuff and paying someone else to do it grates on me, but, I am learning to live with it. And my wife, what can I say? She saw angel. I see the doc for a follow-up i two weeks and will update this story.

Rg A-44

Name: Rg A
Email: Alejo_org@yahoo.com
Age at time of Dissection: 44
Type of Dissection: Descending
Date of Aortic Dissection: 2 February 2017
Tell Us Your Story:

It Happened on a cold winter morning about 8:30 AM. I had a sensation of a bunch of pins shooting up my chest to my neck and under my chin. My breathing became labored after that and I became light headed, I also remember being thirsty after that. The days before I remember having discomfort in my back.

I was using cocaine during my mid early teens to my early 20s, I also used meth from my later mid teens to my early 20s. I smoked an average of less than a pack a day for 15yrs. I drank alcohol heavily for almost 30yrs until I was 41. I also worked moving large heavy items by myself that would usually require more than two people to move safely.

I usually always have have had low BP, but it was normal for my BP to sky rocket when I was in pain. I also want to state that doctors usually have never been able to to find a pulse in my right arm. I had a heart murmur when I was an infant, and grew out of that, I also had asthma when I was young and grew out of that.

Peter Rose-67

Name: Peter Rose
Email: peter@pjamr.com
Age at time of Dissection: 67
Type of Dissection: Descending
Date of Aortic Dissection: 10 January 2013
Tell Us Your Story:

Iexperienced what I initially thought was a heart attack a strong pulsating in my heart with Pain about 6/10 but it radiated to my back and pain intensified to 11/10. I lay on bed and my wife called an ambulance. I thought I was finished and said goodbye to my wife. The Ambulance took me to Taree Hospital in NSW Australia where they checked everything and gave me a CT Scan. They diagnosed a type A aortic dissection and at Taree they were unable to operate.

The ER doctor came and told me I was very sick and needed surgery. I asked what my chances of survival were and he said about 60% but I suspect he thought I was going to die. I was flown to Newcastle in a twin engine fixed wing air ambulance where I was instantly admitted to Intensive Care. I knew I was very sick when my family including Grandchildren suddenly started arriving in the ICU of a hospital which was 180klm from where they lived I was given Xrays ,Ultra Sounds and another CT Scan and after several days of lying in ICU they told me I had a Type B descending dissection and that they would not be operating.

The treatment was aggressive control of blood pressure with regular CT Scan to monitor situation. After several weeks in Hospital I was able to come home. Initially I experienced some pain in my upper legs when walking more than 50-80 steps and I thought this was deconditioning caused by being in a hospital bed flat on my back for several weeks but later found out it was because the blood flow to my legs had been compromised. Apparently I am lucky because people can experience Kidney. lung and other organ failure as a consequence of aortic dissection.
I am now stable ( touch wood ) taking pills each day.

I live with the pain in my legs but try to exercise when possible. Apparently my aorta has about 50% effective blood flow and my legs have less. I feel tired all the time and some days have difficulty getting the energy to get out of the chair.Its difficult to get GOOD Information as most GPs don’t have up to date knowledge on the condition and the specialist I see every 9 months only rely s on his notes.

Recently I found that I was getting side effects from the beta blockers and visited my GP who ordered blood tests and found a skin cancer on my shoulder which needs removing ,suggested I had a irregular heart beat but after 6 weekly visits I had to remind him that the reason I went to see him in the first place was a Type B dissection and side effects of the drugs. I am lucky to be alive 3 years later but I wish there was more information available about my condition.

Dawn Walker-47

Name: Dawn Walker
Email: dawnwalker363@gmail.com
Age at time of Dissection: 47
Type of Dissection: Descending
Date of Aortic Dissection: 31 August 2016
Tell Us Your Story: My name is Dawn and I live in a village in Lincolnshire, U.K.

On 31 August 2015 I awoke early in the morning to a severe stomach pain. After a few minutes it eased but after going to the bathroom and getting back in to bed I was hit by pain which I have never felt before.
The way I describe it is like being an acid explosion throughout my whole torso.
My husband checked my blood pressure and as we had 2 readings of 190 He decided to take me to hospital. I was feeling nauseous, clammy, extremely irritable and I did vomit on about 4 occasions.

A CT scan showed an aortic dissection, descending the length of my aorta with a small aneurysm towards the bottom.
My brother had died suddenly from AAA just 7 weeks before and if I had told hospital staff it is not likely I would have had a CT scan.
After my brother died I suspected I had a rare connective tissue fault called Vascular Ehlers Danlos Syndrome. This has proven to be the case, I got the official diagnosis in December last year.

I was initially placed on BP lowering meds for my dissection and went on to have an operation on 1st October 2015 to replace almost all of my aorta.
Complications afterwards led me to bleed heavily, believed to related to VEDS, and I was left with t8 paraplegia. This spinal cord injury is complicate.

I know I am lucky to be alive but everyday I am still in pain from my surgery and from being a paraplegic.
Life is extremely hard but I am trying to do what I can to raise awareness of this rare condition and I am also trying to write a book which includes many poems, telling of my experiences.

Thankyou for reading this. I wish you all well.

Dawn

Vivienne Rumbold-57

Name: Vivienne Rumbold
Age at time of Dissection: 57
Type of Dissection: Descending
Date of Aortic Dissection: 27 June 2016
Tell Us Your Story: Hi Brian,

I‘m finding it very stressful as do not seem to be able to find out if my husband should be like this now.

My husband was rush to hospital on 27 June 2016 with mostly stomach pains and fortunately the doctor took a ct scan and a Dissection of Aorta – type b intra-mural haematoma/Aorta dissection was diagnosed.

He was rush to John Radcliff Hospital Oxford for surgery but fortunately they decided they would not do as they said they would control with drugs to lower is blood pressure.

He was in lots of pain and they said it was due to constipation from the morphine.

Six days later he was sent home 1July 2016 with loads of drugs and we were very happy but it’s been very stressful as he is still in lots pain and I had to get emergency doctor out and his bp was 140/85. The prescribed him ibuprofen as well as paracetamol plus extra constipation stuff.

He is still having bad night’s and not sure if constipation or what and when phone up hospital they say to talk to my GP and then vice versa. I just really want to know if this is normal.

Unfortunately I never saw a doctor at the hospital as they seem to do there rounds when I wasn’t about. The only thing I was told not let his blood pressure go over 130. This seems to happen just before he takes his meds in morning.

He has another ct scan in 4 weeks. Are you able to tell me if tears can mend by themself? Sorry for long e-mail and typo etc so very tired and stressed.

Cheryl Symonds-71

Name: Cheryl Symonds
Email: casymonds2@gmail.com
Age at time of Dissection: 71
Type of Dissection: Descending
Date of Aortic Dissection: 16 February 2016
Tell Us Your Story:

Hello, my 71 year old mother, Claire, swam 3x a week, hiked, fished, walked, rode her bike, and suffered a major a.d. While on a volunteer shift at the medical center where she helped out several hours every week. She fainted, did not appear to have any warning signs that we’ve heard.

She never smoked, drank a little wine here and there, ate well, never any b.p. medication or concerns, had a healthy physical 1 month prior. I’m not sure yet the type of dissection, need to speak to my father more. She immediately was paralyzed on her left side, lost her kidney function, and lost consciousness about 1 hr after they airlifted her to a larger hospital from the med center.

She continued to breathe on her own, b.p. remained good until near the end. She passed 3 days later in the hospital, peacefully and without pain thanks to the I.v. Meds. It was a complete shock. Her father suffered a similar incident at the same age, however he was a heavy smoker and drinker, so I think my mother wasn’t concerned for herself as she was not.

They did find my grandfathers and repaired it and he lived another 10 years. I am wondering for myself and my 2 sisters, should this be a big concern now with our family history? What is the appropriate age, if any, to start requesting tests for ourselves so that we may end up with different results? Thank you.

David Griser-56

Name: David Griser
Email: captdave1@comcast.net
Age at time of Dissection: 56
Type of Dissection: Descending
Date of Aortic Dissection: 12 December 2015
Tell Us Your Story:

L et me start by saying what a driven and giving person you are Brian this site is full of great info thanks. I have a type b dissection right next to my left sub-clavian artery and so far has not grown into a aneurysm lucky me.

I have had 4 doctors opinions whether to operate open type or stent or just watch it by CT scan. What can i do to keep this dissection from growing besides meds,dieting,light exercise?What are my limitations down the road. Thanks

Marg Venables-59

Name: Marg Venables
Email: venables_37@yahoo.co.uk
Age at time of Dissection: 59
Type of Dissection: Descending
Date of Aortic Dissection: 20 February 2013
Tell Us Your Story:

Sudden sharp pain in chest and back thought it was indigestion took to hospital very quickly diagnosed and treated in hospital for a fortnight and now on loads of pills for my blood pressure not feeling to bad but lack energy and can’t walk as much as I used to not much info about it given xx

Cathy Tarr-47

Name: Cathy Tarr
Email: Cathy.tarr68@btinternet.com
Age at time of Dissection: 47
Type of Dissection: Descending
Date of Aortic Dissection: 29 August 2015
Tell Us Your Story:

I am a 47 year old woman who has had known hypertension for the past 3-4 years. This has been controlled with medication ( or so I thought ) and otherwise was fit and well. on 18/29/2015 I went shopping, just a normal day. Approximately 3 hours later i felt “unwell” and needed to sit down becoming hot and clammy. As i sat the pain started in my chest, central, severe, and a thunderbolt of burning that radiated to my back. I knew this was not normal.

As I waited for emergency transfer to the hospital my legs were tingling and i was losing power in my limbs. Within 20 minutes i was paralyzed from the waist down.

I was rushed to hospital. Luckily i had a CT Scan fairly early as a heart attack was eliminated by a very good dr. I was transferred to another specialist hospital for emergency surgery.

Luckily the surgeon decided that surgery was too risky as my BP was far too high but i spent 9 days on Cardiac Intensive Care, 7 days on Coronary Care and a further 8 weeks on a cardiac ward. My aorta had dissected and bled into my spinal cord causing permanent damage.

i am now 14 weeks post descending dissection controlled by a whole array of anti-hypertensive medications and pain relief. I have learnt to walk again but have a left sided weakness. I am terrified this may happen again to me and its taken over my life.

I want to get back to my old independent life but at the moment need mobility aids and lots of practical support.
Thank you for reading my story.

Edwin Flores-32

Name: Edwin Flores
Email: edweb1f@ail.com
Age at time of Dissection: 32
Type of Dissection: Descending
Date of Aortic Dissection: 9 November 2015
Tell Us Your Story:

I was watching a football game when I started to get sharp back pains, as they day went on the pain intensified and into the night I can monk her take the back pain, thinking they were muscle spasms I took pain medication and still no relieve, so I got up went to the ER with major mid back pain.

When I got there I told them I was having tightening in my chest so I could been faster, after sitting in the ER for 2hrs the ER doc decided on a ctscan and found the dissection I was immediately airlifted to a cardiac hospital, the cardiac doctors have decided to treat it medically and not opt for surgery.

I was in ICU for 3days to get my blood pressure and heart rate under control, I just came home today. I’m totally lost on now what? Monitor my blood pressure taking two different blood pressure medication. Any tips are welcome thank you

Carmen David-33

Name: Carmen David
Email: Carmencmay@gmail.com
Age at time of Dissection: 33
Type of Dissection: Descending
Date of Aortic Dissection: 15 May 2015
Tell Us Your Story:

May 14, 2015 at 10:11pm I gave birth to my second baby girl. 22 hours later, while nursing her on May 15, 2015 around 8pm, I had an aortic dissection. It was soon labeled an Aortic Dissection Type B-Complicated. I was still in Labor and Delivery and felt a severe onset of pain. I was young, healthy and active, I was not pre-eclamptic, had no risk factors, delivery was vaginal with epidural and went smoothly. I felt fine until it happened. A ripping pain started from the base of my neck down my entire spine, then immediately a wave of pain across my stomach then it hit me in the (left) chest and straight through my body to my back.

I gasped and laid the baby down between my legs and called the nurse.They wanted to monitor me for an hour; I said no, something is extremely wrong. Then I remember a doctor asking me my symptoms, I said “I feel like I’m having a heart attack or something” to which his response was “you’re a little young for that”. My obstetrician came fairly quickly but I felt my breathing weak and speaking was slow and quiet already. A chest x-ray and EKG were normal so the thought was maybe something happened with the epidural, so I was sent for a CT scan. The radiologist found the aortic dissection.

I was rushed to another room in like the ER I think to do an A-line (arterial line to read my blood pressure internally) and docs/nurses were trying to call everyone searching for a doc to fix me or take my case. This left me in shock with the details I was overhearing, but that’s another story. I was careflighted from Texas Harris Methodist HEB to Texas Harris Methodist in Fort Worth where a doctor thought the type B dissection I had was manageable by medications but I continued to deteriorate. I had uncontrollable vomit/diarrhea, I could barely whisper and I felt my body shutting down. Much of it I was in shock I think and I just remember voices speaking around me.

That’s all I remember at that point in Fort Worth. Thank God my husband asked for another opinion. A third hospital said she needs surgery now but still the Fort Worth doctor thought he could handle it until ultimately I was so bad he said ok, yea, it’s probably in her best interest. They then ambulanced me to Dallas (storm made them unable to careflight me) to UT Southwestern Medical Center. I underwent surgery there because it was Type B Complicated meaning the dissection was involving part of the arch of the aorta, there was no blood flow to my organs nor to my right leg and they placed 3 stents.

The first surgery was the upper stent and two in my left leg because the arteries collapsed. I was still complaining of abdominal pain so a second surgery with another vascular surgeon was done and he placed 1 more stent, the thoracic stent that butts up directly to the higher one that half way blocks my left subclavian artery. For this surgery they also had to do a lumbar drain in my spine because the thoracic stent blocked a few arteries that supplied blood to my spine. With this they could manually manage blood pressure in my spinal column.

This lumber drain had to stay in 24 hrs after the surgery and I had to lie flat prior to removal and for the day of removal of the drain. In the end they explained that I had multiple tears or that the dissection went all the way down the aorta. I still have an abdominal tear they are monitoring. Meanwhile they had told my family there was high chance I would not make it through surgery, I had not seen my baby (s) and I woke up not knowing where I was and then had to stay in the ICU for 11 days. 3-4 of those days of admission and surgeries I have no memory of.

Then I didn’t get to see my children for 8 days because I couldn’t get out of bed and no children were allowed in ICU due to possibility of them getting sick, which I understood, but this killed me. I fortunately had no major complications after all this given the severity of what had happened. I was told I was lucky to be alive, not to have had kidney failure and that I was lucky to even have my right leg still. After finally somewhat lowering my blood pressure and stabilizing it with medications they released me on tons of medications. My symptoms since have included severe migraines due to the lumbar drain because it took a while for the blood pressure to equalize again in my spine. I could not stand or hardly move without getting these intense positional migraines.

If I coughed it was absolutely horrible. The immense amount of medication early on also played a role in the headaches and took a few weeks to go away. I also have a weak sensation in my hips/legs that even caused me to fall once holding the baby (my legs buckled), leg pain, left flank pain, swelling, abdominal pain/cramping, memory loss & just losing train of thought often, hair loss, severe fatigue, depression and extreme anxiety. I’ve been strictly told I should have no more children so I’ve had an IUD placed until I’m emotionally prepared for a tubal ligation. My husband has been supportive during everything. I probably would also not be here had he not asked for a second opinion. We have had much family and friend help early on after the ordeal and now have thriving little ones running around the house. I’ve been stressed about starting/being back at work.

My perspective on life has completely changed. I am trying to get back to a new normal routine though. I look back now to chest pains that began at 35 weeks (a month prior to dissection) but were dismissed as probably the baby’s foot up under my ribs, to my sister asking if they’ve checked my blood pressure because I looked swollen (which I told her I’m 20+ weeks so I’ve gained like 20 lbs and dismissed her) and the fact that the baby cried if I put her down at all once she was born, as if she was pleaded for me to hold her because something was about to happen that I would not get to for a bit. I have PTSD from this for sure and probably postpartum depression or hormonal changes affected me as well, but I feel it’s mainly been an emotional roller coaster wondering why this happened to me and I will never understand it.

I feel like I can’t work or function normally or for long. I just wish to rest or do nothing stressful and just enjoy time with family and friends. Nothing else matters to me. I just hope I can live a long life to see my girls grow up, get married, hold grand-babies and hopefully not let the stress of this all rip my husband and I apart either. Really I could go into further detail on my feelings and how my body has felt after all of this, but that would be a novel.

I hope my story helps someone else know that they are not alone. I don’t feel so alone now that I’ve seen a few other post-delivery stories and survivors. I’m a believer in the Lord God Almighty and I praise His mercy on me and the grace bestowed to me. I’m a true believer in the power of prayer through all this more than ever before…but I’m still human, have my bad days, am not understanding of it and just want to get over this hump.

I wish I could just be me again…or figure out the “new” me stat. I’m trying to be positive, grateful and not dwell. I research and read a lot on this recently, not to dwell, but to gain more knowledge if possible. It’s only been 6 months since and I’m much better. I will never be the same, but someday I’ll figure out my purpose and God’s reason for leaving me here on this earth. In the meantime, I just plan to live, love on my family and thank our Heavenly Father.

Connie van Bemmel-53

Name: Connie van Bemmel

Country: The Netherlands

Date of birth: 07-08-1961

Dissection descending (type B) December 2012

My name is Connie. On December 17th 2012 I drove in my car to pick up my daughter. I felt great. I do have the habit to drive until my tank is almost empty. This was one of these moments. I decided to go to fill up at the gas-station. This saved my life. I went into the gas-station to pay when I felt a terrible burning pain in my back. I had to sit down and after a few minutes I had to lay down on the ground because I lost all power in my body.

A lady came to me and yelled that they to had to call an ambulance. She also went to my car to get my phone and called my husband. In the meantime I lost the feeling in my legs, I couldn’t move anymore and was scared to dead. In the ambulance they gave me lots of medications to reduce the terrible pain. It worked and I also got back the feeling in my legs.

My husband and children arrived. The ambulance brought me to the hospital where they made a scan (I can’t remember that at all). I saw a lot of serious looking people, who told us what had happened. I had a dissection type B. I had to stay in the hospital for at least 3 weeks. When I reacted well on the medications and my blood pressure would stay low, I could go home. If not I would have a big operation with lot of complications. I heard the story but it didn’t had any effect on my. Was it me they were talking about? Later my daughter told me that I was the only one who was completely calm. They brought me to the Intensive Care.

I reacted great on the medications. They brought me to the nursing department. After 2 days the vascular surgeon came and told me that I could go home. I was very surprised because at that time I was in the hospital for just one week. At the same time I was glad because it was Christmas. I went home without any information from the doctors. After 6 weeks I came back to talk with the vascular surgeon about the second scan, which was made.

The scans raided him. He had not seen them before. We saw that he was uncertain. He had to speak with his colleagues because the situation was complicated. He told us that I had to have an operation and to make a new appointment. For us the situation for was so terrible that we decided never to go back to that man again. We went for a second opinion to Amsterdam.

There the vascular surgeon explained everything to us. I had an dissection type B of my lungs up to my groin + 2 aneurysms, one in my chest and 1 in my belly, just where the aorta of kidneys began. These aneurysms were growing. In my opinion there was no other way than having an operation. The situation could only become worse. They decided to operate me in July 2013.

During this period I have had a lot of medical check ups. By giving me some time the wall of the aorta could become stronger what could reduce the risk of a rupture during the operation. The operation took 11 hours. They called my family that the operation went well but the next morning my family received the call that I wasn’t doing very well. They had to operate again.

During the night I lost a lot of blood. My blood pressure was very low and my belly was swollen. The heart/lung-machine had to run at full power. My family was told that the risk was high that I wouldn’t make it and if I did, the chance was big that my kidneys or other organs didn’t work anymore. Next day they decided to check my kidneys. During this check another artery was damaged, so they had to operate again to stop the bleeding. But I made it.After a week I woke up.

I could move my legs and everything inside was still working. I was frail but I felt pretty well. They brought me to the nursing department. There were ups-and-downs but after 3 weeks I was good enough to go home. YEAH. My condition was zero but every day I walked a little bit more. They gave me something again the pain in my back and ribs. The skin of my belly was ruptured, caused by the serial of operations. It felt heavy and made walking more difficult.

After 6 weeks at home I went working again, starting with 2 or 3 hours, because I was bored at home. At my work they gave me all the space I needed. They watched me carefully. The first year after the operations I had problems with my concentration and I could become very tired from one moment at the other. Even going to a restaurant or talking with friends could make me very tired. In the gym I tried to improve my condition little by little.

In October 2014 I had the operation to recover the abdominal wall. It went well and after 8 days they sent me home. It took another 6 months before I could truly say: I can leave everything behind me. I’m not thinking about it all the time. I’m not searching for answers or information anymore. But most of all I’m not scared anymore.It happened to me. I survived and now I want to live and enjoy my children and all the beautiful things.

The doctor told me that there probably will happen more “things”. I will deal with that when t happens, but now the sun is shining again.

Thank you for letting me tell my story.

Diane Harroff-54

Name: Diane Harroff
Email: wernerrn@yahoo.com
Age at time of Dissection: 54
Type of Dissection: Descending
Date of Aortic Dissection: 23 April 2013
Tell Us Your Story:

I was an ICU RN for more than 25 years. At work in April 2013, I became acutely dizzy, short of breath, and almost passed out. My coworkers took me to the ED and I was diagnosed with multiple acute pulmonary embolism I was admitted to ICU and later in the morning suffered 2 cardiac arrests due to the clots in my lungs. I had a total of 45 minutes of CPR and was lucky enough to survive. I spent 9 days in the hospital and went home. I complained from the time I woke up in the ICU about upper back pain between my shoulder blades. I returned to work on light duty in August, but upper back pain never went away. On September 1st 2013, I went to the ED because I had pleuritis and a rapid heart rate. Because of my history of pulmonary embolism, they did a chest CT, which showed a type B descending aortic dissection from my clavicle down into my right leg.

I spent 4 days in ICU on two IVs to control my blood pressure and again went home. I believe my dissection was caused by the CPR to save my life in April 2013. I have been unable to return to work due to upper back pain which has never gone away after 2 years. Doctors have done many tests and are unable to tell me why I have the pain.

My vascular surgeon told me that he didn’t believe it could be from the dissection, but I see stories here from others who also complain of the same type of pain. My disability organization from my former employer is saying I have to go back to work in a “sedentary” job. I am trying to fight that but don’t know what will happen.

Matthew Arnold-37

Name: Matthew Arnold
Email: mattso3000@yahoo.com
Age at time of Dissection: 37
Type of Dissection: Descending
Date of Aortic Dissection: 3 April 2015
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I will start by saying that I was a previously very healthy person with my only issue being slight hypertension. I first felt the dissection while getting into my car to go to work. It felt like every muscle in my back locked up at the same time. After sitting for a few minutes I decided I could deal with it and proceeded to drive to work. By the time I got there the pain was so intense that I immediately told my manager that I would not be able to work. I had to call my wife to pick me up as I no longer felt like I could drive.

When she picked my up she wanted to take me directly to the ER but I refused and just went home. I tied to go for a walk to see if that would help but that caused me to start to vomit from the pain. At that point I agreed to go to the ER to see what was wrong. The doctor at the emergency room seemed to recognize the symptoms right away and had me in a CT scan within a half hour. I had never heard of aortic dissection but understood how serious it is quickly when they had me in an ambulance rushing me to another hospital where there were specialists that were better suited to deal with it.

I spent 12 days in the Fairview University Minneapolis ICU while they struggled to control my blood pressure which had gone out of control with the dissection. From Saturday afternoon until the following Tuesday I was completely out of it. They called it ICU delirium due to the large amount of medication I was on. I do not remember much from those 9 days but it was a very tough time for my family. After the 12 days in the ICU I had 4 more days in the hospital before I was allowed to go home.

At present the doctors are looking at the options for stent graft surgery but my dissection is complicated and would require a bypass of the left sub-clavian artery. They want to see how I recover with medical treatment at the moment. I have been out of the hospital for 2 and a half weeks at the moment and still struggling with fatigue all of the time. At my last appointment they discovered that I only have 85% blood flow to my right leg which makes it difficult to walk very far due to muscle fatigue. I am hoping surgery will not be needed but also continuing to assess which treatment option will allow me to live a better quality of life.

Mike Koutras-61

Name: Mike Koutras
Email: Koutras1234@bellsouth.net
Age at time of Dissection: 61
Type of Dissection: Descending
Date of Aortic Dissection: 14 October 2014
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This is mikes wife writing his story. On 10/12/14 my husband was sitting down to watch the falcons game and had a extreme pain on the right side of his neck. He complained of having a really sore throat. This just seem to get worse by the hour, so i sent him to the doctor the following morning first thing. She looked in his throat and said it
could be a throat infection an gave him antibiotics to take.

By that night he was not feeling much better and had a really hard time laying in the bed on his back . He sat up most the night , his breathing started getting labored and i kept asking him, please tell me how you feel and do you realize you are breathing labored ? Long story short .

We went to the ER, I told the doctors all i knew. We stayed in ER most of the day from about 11:00 am till close to 9:00 pm and then a nurse came in saying she had been instructed to give him BP with some pain medicine through a iv and stand with him to administer every 5 min. Well the first five , and my husband sat up straight, seem to think clearer and started cracking jokes. All i knew then was it has to do with his heart.

Then around 9:15 they said we need to move him because the ER was getting full. By 9:30, he was on the OR floor and shaving him, saying Their is no bigger surgery than what this man is going to have and we
have no time to waste, we are talking seconds because its amazing that this man is even alive, we could lose him within the next second no joke!

Surgery 7 1/2 hours . My husband had a type A ascending aorta dissection / Aortic aneurysm. He made it. At 61, my husband made it.

I am thankful for this site, seems this world does not have enough information on this condition.

Ken Smolinski-50

Name: Ken Smolinski
Email: smo_fam@yahoo.com
Age at time of Dissection: 50
Type of Dissection: Descending
Date of Aortic Dissection: 4 January 2015
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I had a sudden onset of pain in both of the back portions of my hips. Within 10 minutes I had an added significant pain in the middle of my back. I was driven to the hospital and diagnosed with the dissection.

I have Ehlers Danlos Syndrome so surgery was not the immediate option. I remained hospitalized in ICU for a few days under intense monitoring. I was placed on Metoprolol Tartrate. I am currently being followed by a Vascular Surgeon, a Cardiologist and my primary care physician. I have returned to work full time.

Caroline’s Dad-69

Name: caroline Fleming
Email: carolinefleming9@gmail.com
Age at time of Dissection: 69
Type of Dissection: Descending
Date of Aortic Dissection: 5 February 2015
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My dad was a fit, healthy and handsome man all his life – 69 years young, he was a picture of health and could have passed for 50.
Dad was a great father and fantastic grandfather. Full of positive energy and fun.

On the late afternoon of 5th February 2015 he complained of pains in his chest, lower back and abdomen. The pain was so strong that he was taken by ambulance to the A & E department of Tallagh Hospital, Dublin, Ireland.
An ECG was carried out – this rule out the possibility of a heart attack. The focus after this was predominantly on my dads abdominal pain.

Morphine and anti acid medication was administered. The diagnosis was a bad case of indigestion – At approx. 2:00 am 6th February the medical staff offered my dad some tea and toast and then discharged from hospital – an odd time to be discharged, 2:00 am, but nevertheless – they were clearly happy to let him go. Within a half hour of leaving the hospital my dads pain worsened and he returned via taxi to the A & E at Tallaght Dublin – he was given more pain relief and a chest X – ray on 6th February at around 5:30 am – The X – Ray showed a widening of the aorta and it was this that lead the staff to the definitive diagnosis – Aortic Dissection Type B – My dad then waited for a CT Scan carried out at around 8:30 am.

It was decided that surgery was necessary BUT dad need to be transferred to the St James Hospital Dublin where they had the facilities to deal with such emergency surgery – Dad passed away during surgery – I feel saddened by the misdiagnosis – Medical staff seem to be ill informed about this condition and think it is a rare condition – I believe the condition is NOT so rare but rather medical staff and general public are not made sufficiently aware of the condition. For all those who have died of a massive heart attack – we have no idea how many were actually aortic dissection unless postmortem exams are carried out. Aortic dissection is often wrongly diagnosed – I am told because it presents itself in many different ways – Terrible pain to the Chest ,Back and Abdomen are classic presentation – A CT scan was not offered to my dad – Apparently the hospital can’t offer a scan to everyone who complains of a pain. His pain was extreme enough to be administered morphine.



Dad is dead now – but i can’t help thinking that if people were more educated and informed he may have been given chance – The misdiagnosis of this condition must stop. It is one of the most serious medical emergencies a person can have – So please STOP misdiagnosing this killer – as for rare…rare relative to what ?? More people die each year of Aortic dissection than we really know – and what we really know is that more people die of aortic dissection than of aids. We need perspective on this killer and all A & E staff the world over should be aware –
My dad TIM FLEMING was loved by many and he will be sadly missed – what a beautiful human being , who loved life and had so much more to give.

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