Category: Thirties Page 1 of 2

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.

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
Tell Us Your Story:

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.

Fay N-31

Name: Fay N
Email: nasrfay@yahoo.com
Age at time of Dissection: 31
Type of Dissection: Descending
Date of Aortic Dissection: 2 April 2013
Tell Us Your Story:

I‘m 32 years old, and i just found out a month ago that i have a descending aortic dissection, 5.8 cm in size. Here’s my story:

I gave birth to my beautiful baby girl on March 29, 2013. 4 days after i gave birth, i was home sitting down on the couch having lunch, when i suddenly felt the most agonizing, worst pain i have ever felt. It was as if i was stabbed in the back, or as if i was having a heart attack. i couldn’t speak out for a few seconds to let my mom know what was going on, then i started screaming that i was dying, and i couldn’t breath.

I was curled up on the floor because i couldn’t lie down on my back because the pain got so much worse. By the time the ambulance arrived, i had been screaming for about 30 minutes. They had to take me to the hospital sitting down because it was impossible for me to lie on my back. They gave me the oxygen mask so i could breath better.

We got to the hospital, everyone was clueless, they gave me some pain meds, and decided it was a severe muscle spasm. i went back home, and i was still in very bad pain; i woke my husband up in the middle of the night and told him that i needed to go to the hospital, so we went to a different ER, they refused to admit me because they didn’t know what was wrong. Then we decided to go to another ER, they gave me a shot of pain killers and sent me home.
I was still in pain for days, i couldn’t sleep at night, and couldn’t lie down on my back because of the shortness of breath, on my side because of the C-section. It was hell!



A doctor came home to check on me, and decided to give me Valium because he also thought it was a muscle spasm, but it was the only medication that made me feel a bit better.

I lived with this pain for about a month, back, chest, lower back , etc.. During this year and a half, i always felt tired, anxious, a little bit depressed. I felt that there was something wrong, but i never thought to look further.

I used to wake up in the middle of the night to the stabbing pain between my shoulder blades, sometimes in my upper abdomen, but i always thought it was stress. Until last month, i went for my yearly check up, and my gyno told me to get an abdominal echo to make sure that i didn’t have gallbladder stones (which it turns out i have 2), and this is when we found out!

I’m still trying to accept this fact. I thank God that I’m still alive, because a lot of things could’ve gone wrong during this year and a half, especially that the first 2 years after a dissection are the most critical.
My doctor tells me I’m lucky, specially that i was already on beta blockers all this time because of my tachycardia.

He also told me that i shouldn’t get pregnant again, anyways, even if he did allow me, i wouldn’t take the risk, because I’m almost sure that pregnancy was one of the risk factors. It makes me sad that i won’t have another child, but then again, i thank God i have a beautiful girl.

Now i can say that my level of anxiety went up a little bit, i worry that something might happen to me. A doctor in the US told me that i should have an operation soon, while my doctors back home say that i should wait because the risk of an operation is higher than medical management. i want to get another medical opinion from Europe to make up my mind.

This is my story, i would like to end by saying that definitely my family’s help and support, specially my husband and my sister, are giving me strength and positively to overcome this. I need to stay healthy and do whatever i can to be here for them and for my baby girl.

Danielle Haines-32

Name: Danielle Haines
Email: elleisrad@gmail.com
Age at time of Dissection: 32
Type of Dissection: Descending
Date of Aortic Dissection: 5 May 2013
Tell Us Your Story:

When I went to my local ER at the end of April, I thought I was having a panic attack. It had happened before, my chest would start to ache and hurt, and I would go in and they would give me a shot to help me relax, then send me home.

This time was different, because when Dr. Turner realized that I have Marfan’s Syndrome, he asked me to get x-rays. When those came back, he was worried, and asked me to get a CT scan. I was worried at that point, because I know doctors don’t just send patients out for extra tests “just because.”

Come to find out, I had two major dissections in my descending aorta–one that was almost the size of a soda can. He immediately told me that I had to have emergency surgery, but there simply wasn’t anyone qualified in my state (Kansas) who could perform the operation. It took them a long time to get things in order, because none of the surgeons locally wanted to take my case, because everybody was certain I was going to die.


Eventually I had a consulting surgeon who signed on, as well as a cardiologist locally, and the next thing I knew my mom and I were on a private jet on our way to Houston.

After taking all the tests to make sure that my body was healthy enough to take the surgery, Dr. Safi (the amazing doctor who performed my surgeries) decided that everything was fine and we were ready to go. Some time after my first surgery, they told me that I had to have a second surgery, because I had so many issues with my descending aorta that they simply couldn’t do it all in one surgery.

I spent 39 days in the hospital. Two people got fired because of the way they treated me, as well as their other patients. It wasn’t until after my second surgery that I realized how close I was to dying. I was only 32! Surgeries like this are supposed to be for older people, not people my age. I still cry about it sometimes.



It’s been five months since my first surgery, and on the 22nd it will be 5 months since my second surgery, and I’m still in major pain on a regular basis. My PCP is at a residency clinic, and every time he has a new student working with him, they always timidly ask me if they can see my scar. Sometimes I feel like a freak. I don’t have anyone to talk to that understands what I’ve gone through, or what I’m still going through. This is the single worst thing I’ve ever gone through in my life, and if I was religious, I’d pray every single day that I never have to go through anything like this ever again.

Tarana Desai-34

Name: Tarana Desai
Email: taranad@gmail.com
Age at time of Dissection: 34
Type of Dissection: Descending
Date of Aortic Dissection: 26 November 2013
Tell Us Your Story:

It was the weekend and there was lots to be done before our lives changed forever. My husband and I were excitedly counting days as we were expecting our first baby. We were looking forward to welcoming our child and were anxious to have him / her as part of our family.

I had a very smooth pregnancy except for the usual morning sickness. Was really active and enjoyed the feeling of my baby inside me. Since it was our first baby we both had decided not to find out the sex and let the surprise build up over the 9 months.

On 22nd November, 2013, Friday we had our 36 weeks doctors appointment. Doctor Ghosh once again confirmed during the 3D scan that the baby had not inherited any of my sharp features and looked exactly like my husband and all I was doing was carrying him / her for 9 months. The baby was doing great so my husband and I decided to celebrate as our wait was going to be over soon.

23rd November, 2013, Saturday was the beginning of the weekend. There was a lot on my to do list to do as we prepared for the little one. I had decided to get my hospital bag ready and was in great spirits. Being an early riser I got done with my household chores and was chatting with my parents when I felt a throbbing pain in between my chest. I promptly hung up the phone and rushed to my husband. I told him I was in pain and that I felt like I was having a heart attack.


We both obviously panicked but started thinking of options where we could go to get medical help. We first decided to go to the nearest hospital but decided against it and headed to the Matilda Hospital where I was due to deliver on 22nd December, 2013

My belief in the quotation “A friend in need is a friend indeed” became stronger with this experience. My husband called our close friends for support when we headed to the hospital and they were by our side until the entire ordeal was over.

We were attended by the doctor on call at the hospital who diagnosed it to be acid reflux and prescribed paracetamol to relive the pain. By the time we headed back home the pain had subsided drastically and I decided to eat something as it wouldn’t be good to miss a meal for the baby. The food made me uncomfortable and I threw up and only felt better after I took the paracetamol. Spent the evening in mild pain and hence decided to accept our friends dinner invite to divert our mind and enjoy the change. However, the pain continued and the evening wasn’t as much fun as we would have liked it to be.

Through the night the pain subsided and I woke up on 24th November, 2013, Sunday to a cheerful me in good spirits to wish my sister on her birthday! Sunday was great, spent it on household chores, watched tv and relaxed. Had an early dinner and we must have slept for about an hour and my worst night of my lifetime took over both our sleep.

The pain started on 24th November at 10:30 pm and stopped only around midnight on 26th November, 2013, Tuesday the day two people were born – My second life and my baby girl my life.

The night of 24th November was a sleepless one. I had piercing pain in the middle of my chest and at the very same point behind my back. I used to feel relief with a hot water shower and a hot electric pack on my back. My husband and me hardly slept as we tried anything that worked to relive me off the pain.

Through the night we decided that on 25th November, 2013, Monday I would not stay alone at home and head to a close friends house for a day. However, that need didn’t arise as at 5:30 am the pain really intensified and we decided to page my obstetrician and rush to the hospital once again.

Lucky for us he had an emergency and was already at the hospital. We tried once again to continue with the Saturday doctors diagnosis and treat me for acid reflux however the medication didn’t relive my pain and seeing how pale I looked the doctor took a call that I should be immediately rushed to one of the best public hospitals in Hong Kong, Queen Mary Hospital.

The system in Hong Kong is that for all medical complications the patients are rushed to the teaching / public hospital. What seemed forever we waited for the ambulance and was taken to the labour ward for diagnosis. Initially things moved slowly. They started monitoring my baby’s heartbeat and I was relived to know that the baby was doing great.

Through the day different doctors came and checked on me. The pain had subsided from what I understand due to the blood pressure medication I was given. By evening they had narrowed down on what was wrong with me. My aorta, the most important artery in the heart supplying blood to the body had ruptured and needed to be fixed immediately. They would need to do a Caesarian section first and get the baby out post which the heart surgery would be done.

By night there was a lot of activity around me. Doctors doing tests, nurses attending to me, forms being signed, decisions being made, etc. By this time it was decided that my parents would fly down as the risks of the surgery were high. We left the onus on our competent doctors to make the right decision to make the operation a success. It was suggested by the Cardiologist that we would need to do a CT scan along with contract to determine the extent of damage done. This would mean some amount of harm to my baby. It was a right decision as to save a life another had to be affected, however our doctors insisted on it and with the baby already turned and by 36 weeks the chances were only his / her legs would get affected if at all.

One of the cardiac surgeons who was a part of the team to operate on me, explained to us my health condition, details, procedure, time taken and risks of the operation. My husband and I spent over two hours once I got transferred to the Cardiac-thoracic ICU in preparation for my surgery. We joked, chatted and relived some of our fun moments together from the past as neither of us wanted to even think of the repercussions of this operation.

On 26th November, 2013, Tuesday around 1 am the time had come to put this entire ordeal behind us. I was escorted to the operation theatre. With a smile on my face I bid farewell to my husband and our close friends who patiently waited outside to help us through this sudden development in our lives.

My awake moments in the operation theatre were the most scary ones. Over 20 doctors and nurses surrounded me as they prepared for what might be the toughest operation I will ever go through my entire life. I prayed to god for an outcome that he thought was the best for me and my husband.

My operation went on for almost 12 hours. I thank The Lord for giving strength to my husband through what must have been the toughest night of his life so far. I gave birth to a healthy baby girl. My husband was so disturbed and stressed with the entire situation that all he needed to know from the nurse when our princess “Isha” was born and being taken to the N – ICU was if the baby was doing ok. Isha was called the “miracle baby” in the days to come at the hospital. Rightly said she fought through the entire struggle strongly by my side. Isha in Sanskrit means Shakti / Strength which she definitely gave me to fight through. As I came out of the effects of general anesthesia the first thing I wanted to know was how my baby was doing.

All the doctors and nurses of the cardiac unit prayed hard for me and my baby as this was the first such operation in over 2 – 3 decades. Things were uphill from here on. My positive thinking and inner strength helped in my fast recovery. I was out of the Cardiac- thoracic ICU in about 24 hours and discharged from the cardiac general ward to start a new phase in my life in 9 days.

Amit Khanuja-36

Name: Amit Khanuja
Email: amitkhanuja376@yahoo.com
Age at time of Dissection: 36
Type of Dissection: Descending
Date of Aortic Dissection: 26 August 2011
Tell Us Your Story:

Hi!!
My life changed on and after 26th August 2011. And I think, it has changed for good.
I am Amit Khanuja aged 36 as on 26th Aug 11. I am a 6ft 4 inch tall with good build and weighed 106kgs while all this happened. I am an Indian and have tall family members, Father- 5 ft11inch, grand father 6fts+, paternal cousins- 6ft 1-3”. Never had any family history of heart disease or death due to a cardiac arrest. Height was a sign of proud, where average Indians are not so heighted, I was tall of the lot. By profession have been in Sales and I am a Sales Manager, working with a Telecom company in India. Married for 6 yrs at the age of 36 and have a 2 yrs young daughter.

I have been a smoker ( A pack a day) since last 14yrs and have been both (hereditary) hypertensive and diabetic for last 4yrs.

How did it start?
It was a normal day to work and was on field visit with a colleague of mine. Had skipped lunch and around 4pm opted of having a roasted corn. Had a smoke later and suddenly I felt suffocating. Threw the cigarette and within fractions of second started getting pain in chest. Asked my friend, to park the car aside and press hard on my chest, while I kneeled on his car. Despite doing so, no reduction in pain. An abnormal pain, which was under the ribs but I could sense, it is not in heart. An acute pain as if someone is fingering up my diaphragm and an excruciating pain to tolerate. I asked my friend to rush me to a doctor and all this happened in City Bhopal, MP, India. I was showing all signs of a cardiac arrest and was asked to cough vigorously till the next medical rescue. I was taken to an emergency ward of Bhopal Memorial Hospital. They immediately took my ECG and BP both were normal but pain did not subside.

I was screaming with pain and I got my first dose of pain killer injection. The pain did subside in some time and I was asked to take a chest X-RAY. While I was standing in front of the plate for the X-ray I was asked to press myself to the plate. I felt a sudden relief from the pain and hence repeated pressing myself in similar manner few more time. By this time I was feeling completely normal and left for home and so did the doctors allow me. Reached home around 9pm, after having my dinner the pain again started. Was again rushed to the nearest hospital, Peoples hospital and kept in ICU that night and the second pain killer was injected by 11pm. I dreaded the pain will arise again but was sure that since I am in an ICU under doctor’s supervision will be taken care immediately. Next day morning I was asked to take an CT Scan . The CT scan reflected some patches of blood on my lungs and hence was detected tuberculosis TB. I was immediately administered TB medicines. By this
time, it was already evening of my second day, and had already taken 4 heavy doses of pain killer injections.
TB medicines were heavy medicines and I was puking ever hour of medicine intake. It was regular for me now -medicine intake to painkiller injection which went on till next 3 days. By the end of 4 th day the pain had subsided and my bodies acceptance to this heavy antibiotic dosage of TB had increased.
I was suggested to take a second opinion and better consultation by my seniors to more qualified doctor and hospital, The Bombay hospital, Indore, MP, India. We reach this place in some couple of hours drive from Bhopal. I was asked to get hospitalized the same night in order to conduct some test. It was 1st Sept 11 almost midnight when I got hospitalized here. I kept on throwing up in every few hours. My BP by then was 180/100. Reasons detected- my TB medicines are heavy dosed, hence decompose the medicine from a compounded tablet to individual tablets of each component. This treatment kept on for another 3 days and yet there was no reduction in nausea or vomiting. My appetite kept on reducing day by day. I had sleep less nights and restless days. I kept complaining of sever head ace. My BP kept on rising up from the day I got hospitalized here and it went up to levels of 240/130. Having sever pain in head. As a gunny-pig there were several test conducted – Brain CT Scan, f
ull body scan , Cerebro spinal fluid test and what not. Yet none of the doctors here were either able to control my sky rocketing BP nor were able to put me at rest or sleep. I was also suspected to have kidney failures ( Serum cretin 8.4 levels) and was suppose to undergo dialysis. I was to undergo and CT angio but since my serum cretin was more than 8 ( normal mot more than 1.3) which was abnormally high, immediate reduction was treated. I was injected saline for next 6 days. I had been in ICU for more than 15 days now, at Bombay hospital and no one was able to give me a relief. There was one symptom which I acknowledged and raised it to my doctor. Soon after I ate (within 30 mins or so), I would get some abnormal pain in my abdomen, which would subside if I took a pain killer. Through this my Doc got some clue and was referred to a cardiologist. The cardiologist also could not afore hand detect any problem but with some study on internet could find that around 18 days b
ack i.e. 26th Aug 11, I had an TYPE B Aortic dissection.
Upon acknowledging the same he also mentioned that he no clue of any treatment and I was the first case of AI in this hospital of repute. Hence was asked to be immediately taken to either Chennai, Bangalore or Delhi ( Major metro towns) for further treatment. My family members dreaded that my conditions were so worst that if I could travel by air. (Other means were out of questions.) They dreaded with all IV’s and being in semi conscious state, will I be able to take a flight. Rather will the airlines allow me to fly in this condition. They were asked to camouflage my pain and appear to be normal, to travel to Delhi. I was given a cosmetic wash, a good shave and combed hair to make me look normal and make me fly from Indore to Delhi.
Meanwhile my case papers were already referred to the Medanta- Medicity hospital to Dr. Anil Bhan. Thankful to the doctor (Cardiologist) of Bombay Hospital, Indore who took no time to declare, that he was helpless and I should be immediately taken to some other doctors for further treatment. Had he hidden this fact, my case could have gone worst.

The 19th Day , I was flown to Delhi and in 2 hrs we landed. I was rushed to Medanta Gurgaon in No time and in emergency ward, I came across my GOD figure Dr Anil Bhan. He was there in hospital at 11pm on my arrival and rushed me to ICU. On his first look he said I show all signs of Marfan Syndrome. By the time I reached Delhi I was with sever headace and high BP of 240/130. My S Creatin ratings had dropped from 8.4 to 3.2 by this time. In next two days Creating came in normal limit and I was confirmed arota dissection. Dr Bhan here got my BP under control in 10 hrs of hospitalization but suggested a natural cure route, as I was already 19 day down when dissection occurred and body had adopted the natural route of cure by then. I was detected Type B AI with left side blood supply problem, especially in the lower left limb/ leg, having blockage.

I was in Medanta with 10 days of hospitalization improving day by day. One I got discharged got re-hospitalized with gastrointestinal complications and took its treatment for another 10 days in Medanta and 25 days at my In-laws home. When I was discharged from hospital I was so frail and weak that I complained giddiness every time and was barely able to walk for 15 steps.

By the time I recovered completely after 3 months I has lost 35kgs weight, a compromised kidney and had blockage in left lower limb. Again thanks to both the Dr’s in Medanta. Dr Bhan and Dr Parikh that I didn’t undergo any surgery and was advised medication and strict BP control for next 6 months.
My life has changed in this Six month. There is always an uncertainty of life or fear to have re-dissection. Though I joined my JOB but my profile has changed. From the main line have been shunted to off stream work.

Physically I have been a controlled BP and can walk for an hour n half now but with small breaks of 3-10 sec every 200/300 mtrs.

But yes this dissection has given me a real sense of life. Had been planning for Future until all this happened, when the next day is so uncertain. This incident has shown me real vales of family members and have shown real faces of true friends. I now try to enjoy each moment and day, as future is uncertain and crude planning will not help.

Thanks for passing by and sparing time to read. My purpose of adding this story on site was to leave my coordinates for other Indians, who may contact me, to help them directing to the right Doctors for Aortic dissection treatment.

I may be called at +91-9826470264 for any help.

Mike PO-38

Name: Mike PO
Email: miquelromi@yahoo.es
Age at time of Dissection: 38
Type of Dissection: Descending
Date of Aortic Dissection: 22 July 2011
Tell Us Your Story:

A fter a suddenly big chest pain, I spent a weekend in the clinic. The diagnosis was an abdominal and thoracic aortic dissection.
In the ICU, I made a passive treatment during a week.

I have an aunt with an aortic aneurysm, this was the reason why I have genetic testing done, the result has been a mutation in the gene act-2.

Now I have a very normal life. Although I’m waiting for future medical revisions, I hope an stability in my aorta.

My desire is that my children have not inherited the mutation of this gene. I hope that researchers find a treatment to improve the gene.

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

Vadim M-32

Name: Vadim M
Email: meleshuk@gmail.com
Age at time of Dissection: 32
Type of Dissection: Descending
Date of Aortic Dissection: 3 April 2007

Tell Us Your Story:

I had a traumatic AD after a skiing accident – high speed tree collision after losing control and flying off a drop. The accompanying injuries included ruptured diaphragm, collapsed lungs, descending colon tear, fractured ribs, kidney damage and muscle/ligament damage. I was able to slowly roll to a visible place where someone noticed me and reported to patrol.

After being evacuated from the mountain I was sent to the closest hospital where they put a stent in my kidney and forwarded me to the regional trauma hospital (Harbor View in Seattle), where I got the lungs and diaphragm repaired and descending colon ressected. Then my condition deteriorated; I was not responsive for a few days and was transferred to another hospital (UWMC) for thoracic heart surgery. Dr. Aldea (countless thanks!) installed a Dacron graft.


I was able to get up (oh misery) in two weeks and next day I had staples removed and discharged 45lb lighter than pre-surgery. Getting off the morphine and then off oxycodone was a bitch with the amount of pain I was having. Partial recovery and learning to walk again took another three weeks, and then I was back to work. I then took part in a guided cardio rehab program for a month, which mostly returned me back to a decent shape. A few months later I stopped taking metoprolol and was cleared for all physical activity.

I have not taken BP medication since, but when I was getting back into physical activities, I was monitoring heart rate and blood pressure, letting it go when the numbers didn’t look right. In 9 months from the surgery I recovered enough to start skiing and snowboarding again, although now the fun is partially spoiled by the fear of falling; I certainly am much more careful now. I completely stopped kite surfing, again for the fear of falling, and I stopped commuting on a motorcycle although I am still riding recreationally.

I am also cautious, although not uncomfortable, when lifting heavy stuff (>3 0% of my own weight). One thing I never got comfortable with is jumping, especially on the trampoline. After just seconds of jumping my heart rate jumps drastically, not sure whether this is related to blood flow or to anxiety about the effect of extra acceleration on the graft. After 3½ years, the repaired dissection practically does not affect my life, for which I am extremely thankful.

Vadim

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Mandy Wyant-37

Name: Mandy Wyant
Email: mandyleigh1969@yahoo.com
Age at time of Dissection: 37
Type of Dissection: Descending

Date of Aortic Dissection: 26 November 1969

Tell Us Your Story:

My story is really hard for me to write but after reading everyone else’s experiences I feel like I should share mine. I was pregnant with twins and on November 22, 2006 they both were delivered without a c-section and I was on top of the world.

They were born only a week away from my due date so I was able to take them home the day after Thanksgiving. My birthday is November 26th so 4 days after they were delivered, I was holding my daughter Jennifer around 4:00am in the morning when this weird burning sensation radiated done my spine and I literally sat up immediately and lost my breath.


When it was over I called for my mother who was staying to help me with the twins. I told  her something just happened and it was not normal. I thought I could not breath right and only felt comfortable on all fours. They called 911 and a policeman arrived and comforted me until the ambulance got there.

The pain was setting in between my two shoulder blades and it was extremely painful. I kept thinking that my epidural had something to do with it because of the way my pain went down my spine in the beginning. I was rushed to Martha Jefferson hospital where my angel Dr. Snufin quickly diagnosed me with an aortic dissection.

From there I was transported to the University of Virginia hospital. Little did I know how serious this was because they did not want to tell me due to anxiety and stress, but they wanted my entire family to come to the hospital because they were afraid I would not make it through the night. This dissection had already killed my left kidney and was working on my right one. I was rushed into surgery and a Radiologist named Dr. Arslen saved my life.

After a week in the hospital I was sent home with tons of medication to keep my Bood Pressure down to prevent complications however I could not stand up without passing out. I could not even take a shower without having a chair to sit in. It was horrible.

Finally I was put on the right dosage of meds so that I was able to somewhat function. It is now going on 4 years since my dissection but my life has been anything but normal I went back to work on a reduced work schedule but could not handle it because I felt like crap all of the time with no energy. I went on disability and applied for Social Security  benefits and was approved rather quickly.

I personally feel impending doom from this experience as I am definitely not the same person. I have been through tremendous bouts with depression and find my life extremely stressful. I believe my husband is in denial and he is not really supportive. I have accepted that this could happen again and I that my life has been shortened  but the only thing that does keep me going are my twin girls.

They are thriving and definitely a handful. I just wish I could be a lot stronger and do the things my girls need from their mother. I could go on and on, but I will end it for now. Thanks for this web site for allowing our personal stories I just wish my story was more happier but it really is not.

Sincerely.

Mandy

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

Brendon Roberson-36

Age at time of Dissection: 36
Type of Dissection: Descending
Date of Aortic Dissection:  8 April 2010
Tell Us Your Story:

Hi my name is Brenda Roberson I was a cna working for hospice ,I Started my day as any day ,had been working over time and we had been short handed lift heavy pts. on that life changing day me and my ass. had 12 pt to see that day! we done 4 i think and had lunch and went to our next pt and pt refused so we talked with the pt and family on our way out i felt like someone had hit me in the back with a ball bat! my partner was like are you Ok . I said i need to set down so we got in her car and i thought I’m having a stroke i got sick ,hot etc she rushed me to a place like north point .

I was vomiting the had me then in a ambulance and the next thing I knew I was in ICU .I thought it was a dream I’m 36 and have been dealing with high BP since I was 17 in and out of hospitals it got better at times.but this has been LIFECHANGING FOR ME. I was very active a go getter I’ve been married 18 years . and have 1 daughter So on April 8 2010 i was told i had thoracic abdominal  aortic dissection that wasn’t repairable at this point in time.


80 %blockage to my right kidney.it reads aortic dissection flap is present just distal to the origin of the left sub-clavian artery making this a type b. it descends through the remaining length of the thoracic an abdominal aorta,into bilateral common iliac arteries,clot at right proximal iliac artery narrows the remaining right iliac lumen to a thin crescent, narrowing 80%  I could go on and on but if you have had this happen you no what I’m talking about.the doc have put me off work ,its been awful  and i feel like i should bee getting better but i can only walk 30 yards and I’m give out i guess from all the meds I have filed for disability  and got turned down twice , if this is so life threat n why is it so hard to get disability and mine has not ruptured so they say if it does i have less than 5 min. and i will bleed out and die ,I’m not to lift over 5 pounds the docs tell me just to keep walking ,

I’ve got no pulse in my right leg they think they might be a blockage in that leg but nobody in East Tenn has a clue they all are like it just takes time  well if I sat around every day and thought  this could rupture at any time  i would b e nuts! So can any body offer any advice  PLEASE!

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

Donna Sullivan-37

I was a 37 year old female who was pregnant. During labor the baby’s heart rate had dropped and an emergency C section performed. I thought the worst was over. When i went home to enjoy life with my daughter, 5 days later i experienced a very sharp pain in my upper back and then became unable to breathe. I thought it… was complications from the c-section but i was rushed to the hospital to find out that I have Type b Aortic Dissection which thankfully is being controlled with meds so far.


I get a Ct Scan every 6 months and for the past 4 years the tear has remained stable but the anxiety each day and especially before each scan is unnerving. The Dissection did cause the shut down of part of my liver which is now Fibrotic but i am glad to still be here. I go on the internet daily to see if there are any better prognosis but it seems this condition is so rare that only 40% survive past ten years and I am so thankful to be alive but want to at least see my daughter turn 18.

I hope there will be more advances real soon to give us survivors long term hope. thanks for having a group. It was helpful reading other stories of survival.
Donna

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

Jennifer Butler-38

Personal Stories: Jennifer Butler

My name is Jennifer and I am 38 years old. One week after the birth of my 2nd son, I developed chestpain and was rushed to the ER via ambulance. After spending the entire night and next day in the ER, they performed a heart catherization and discovered that I had had a heart attack but fortunately, there was minimal damage to my heart. No stents were required at that time. I was ready to be released when I again experienced chest pain and was sent back to the cath lab where they discovered I had experienced a major heart attack and they inserted 3 stents in my LAD (left anterior Descending) artery. I was kept in the hospital for a total of 11 days with my young sons (4 yrs old & 1 week old) at home. I was sent home on blood thinners, blood pressure meds and cholesterol lowering drugs.

This was Sept ’07. In Dec ’07, they discovered at cardiac rehab that my EKG was abnormal. I required another heart cath where a 4th stent was put in. From Jan ’09 til June ’09 I was feeling great! I had lost 30 lbs. on Weight Watcher’s and was feeling really strong and good. Then I started developing chest pain while walking on my treadmill. A 4th heart cauterization discovered that I had several blockages and triple-bypass surgery was needed. In June ’08 I underwent the surgery. One day after my surgery, which went quite well, they did a routine scan of my heart and the technician discovered I had a tear in my aorta. I remember thinking this can’t be good. I was kept in the hospital for 2 weeks total. I later found out from my husband that I was only given a 50/50 chance of making it 48 hours. Then I was only given a small chance of making it 2 weeks post surgery. But, its been over 7 1/2 months since my surgery and I’m still here and doing good.


I have had genetic testing and it was ruled that I do NOT have Ehler’s Danlos or Marfan’s. They also checked for TGFBR1 and TGFBR2 which came back normal. The geneticist want me to have a chromosome analysis next. As of now they “remain unable to offer a unifying genetic diagnosis” for me.

My cardiologist believes I have suffered from SCAD (spontaneous Coronary Artery Dissection) which can happen to women in the weeks following birth. Its a condition where the high levels of Estrogen during pregnancy can weaken the heart and cause the vessels to tear.

Living with this condition has been difficult for me. I had thought that after this much time, I would be getting over my daily thoughts & fears of dying. I have seen a therapist and have taken Xanax off and on for anxiety. I’m trying to learn how to live with this condition and not let it consume me. I have two young boys & a loving husband to live for. I don’t want to leave my boys without a mother at such a young age. I try not to get on the internet because all the news about aortic dissections is so grim.

I have CT scans every 3 months right now to check my aorta. I have another one this week and I always get so anxious until I hear that everything is ok. The best news I can hope for is that nothing has changed. So far, since my surgery last June, the tear has not gotten worse. So that is good.

I just pray that I make it long enough to see my boys grow and mature. I also pray that they come up with some kind of surgery that will cure me. Some way to stitch up the tear? I’m not ready to leave this earth. I want to hold my grandbabies and grow old with my husband.

I need support! I would love to talk with other survivors and learn from others how to cope with this scary, life-threatening condition.

Thanks so much for reading my long story.

Jennifer B.

Jennifer B-38

Personal Stories: Jennifer B

My name is Jennifer and I am 38 years old. One week after the birth of my 2nd son, I developed chestpain and was rushed to the ER via ambulance. After spending the entire night and next day in the ER, they performed a heart catherization and discovered that I had had a heart attack but fortunately, there was minimal damage to my heart. No stents were required at that time. I was ready to be released when I again experienced chest pain and was sent back to the cath lab where they discovered I had experienced a major heart attack and they inserted 3 stents in my LAD (left anterior Descending) artery. I was kept in the hospital for a total of 11 days with my young sons (4 yrs old & 1 week old) at home. I was sent home on blood thinners, blood pressure meds and cholesterol lowering drugs.

This was Sept ’07. In Dec ’07, they discovered at cardiac rehab that my EKG was abnormal. I required another heart cath where a 4th stent was put in. From Jan ’09 til June ’09 I was feeling great! I had lost 30 lbs. on Weight Watcher’s and was feeling really strong and good. Then I started developing chest pain while walking on my treadmill. A 4th heart cauterization discovered that I had several blockages and triple-bypass surgery was needed. In June ’08 I underwent the surgery. One day after my surgery, which went quite well, they did a routine scan of my heart and the technician discovered I had a tear in my aorta. I remember thinking this can’t be good. I was kept in the hospital for 2 weeks total. I later found out from my husband that I was only given a 50/50 chance of making it 48 hours. Then I was only given a small chance of making it 2 weeks post surgery. But, its been over 7 1/2 months since my surgery and I’m still here and doing good.

I have had genetic testing and it was ruled that I do NOT have Ehler’s Danlos or Marfan’s. They also checked for TGFBR1 and TGFBR2 which came back normal. The geneticist want me to have a chromosome analysis next. As of now they “remain unable to offer a unifying genetic diagnosis” for me.

My cardiologist believes I have suffered from SCAD (spontaneous Coronary Artery Dissection) which can happen to women in the weeks following birth. Its a condition where the high levels of Estrogen during pregnancy can weaken the heart and cause the vessels to tear.

Living with this condition has been difficult for me. I had thought that after this much time, I would be getting over my daily thoughts & fears of dying. I have seen a therapist and have taken Xanax off and on for anxiety. I’m trying to learn how to live with this condition and not let it consume me. I have two young boys & a loving husband to live for. I don’t want to leave my boys without a mother at such a young age. I try not to get on the internet because all the news about aortic dissections is so grim.

I have CT scans every 3 months right now to check my aorta. I have another one this week and I always get so anxious until I hear that everything is ok. The best news I can hope for is that nothing has changed. So far, since my surgery last June, the tear has not gotten worse. So that is good.

I just pray that I make it long enough to see my boys grow and mature. I also pray that they come up with some kind of surgery that will cure me. Some way to stitch up the tear? I’m not ready to leave this earth. I want to hold my grandbabies and grow old with my husband.

I need support! I would love to talk with other survivors and learn from others how to cope with this scary, life-threatening condition.

Thanks so much for reading my long story.

Jennifer B.

Raul Rodriguez-33

Personal Stories: Raul Rodriguez

My name is Raul Rodriguez; I am a 33 years old from El Paso Texas. I am 6’2 210 (now 198) pounds I have for the most part been healthy all my life except for my high blood pressure that has gone almost always uncontrolled since I was about 22 years old.

On November 21, 2007 I woke up and as I got out of bed I felt a sharp pain that seemed to rotate from my chest to my back. I thought for sure I was having a heart attack, so I chewed an aspirin and drove myself to Las Palmas Medical Center’s ER.

I arrived and after the verified my health insurance they took me in my vitals where all ok my BP was 185/120. They did an EKG, blood work and chest X-Ray and gave me 6cc of morphine for the pain. After a couple of hours a doctor went in and told me I wasn’t having a heart attack all I had was high blood pressure and it probably gave me a sore heart muscle. He told me he would give me a prescription to control my BP and to make an appointment ASAP with a primary doctor.

I called a Dr. I know German Reject and I was given an appointment the following Monday. I felt very good because of the morphine and the fact that I was told that my heart was ok. So I went back to work. That was the week of Thanksgiving and I didn’t take care of myself at all I exercised, drank alcohol, didn’t sleep well and stayed out vary late every day that weekend.


I didn’t even take the medicine prescribed to me by the ER doc because he wrote for me to take 1-4 pills a day and the pharmacist at Walgreen’s told me that didn’t t make sense I called the hospital so they could clarify but they where very rude, the PA didn’t let me speak to the doctor. They told me I had to go back to the ER pay another co-pay so they could give me another prescription.

Monday morning I was going into work a little late to because I had my Dr’s appointment at 8:00 am. I woke up at 7:00 am and got up to brush my teeth; suddenly I felt like someone stabbed me. The pain was back 10 times stronger again in my chess and back. I have never felt something so terrible in my life. This time I could not drive myself I was literally rolling on the floor but somehow I managed to get to a phone and dial 911.

In minutes Firemen and Paramedics where in my house. They gave me something for the pain and rushed me back to Las Palmas Medical Center. I thought I was going to die! I got there and again I went trough the same thing. EKG, blood work and chest EX-RAY and I were told everything was OK. My BP was 167/89 this time, but they where going to give me a CT scan. It took a few minutes and a nurse told me the doctor ordered that I not move until he read the results of the CT scan. A PA walked in and told me not to move or panic but I had a hole in my aorta and I was going to need emergency surgery.

I remained calm but scared. After about an hour a heart surgeon Dr. Lyn said I may not need surgery that they where going to put me in ICU and control my BP. A few days later I was told I had a Type B Descending aortic dissection that went from right under my heart to my right leg, but with medication to lower my blood pressure it would heal in time. They also did some test for my kidneys and discovered one was not functioning because of reduced blood flow.

After a few days it seemed to go back to normal. After 11 days (a Friday) I got out of the hospital with 3 different types of BP medication. The following Monday I went to see my Primary doctor; he told me I should go to Houston and seek a second opinion. Then he checked my BP it was 170/90 he told me to check my self back to the ER. I spent 5 more days there and I finally got my BP under control with four medications. While I was back in the hospital my doctor was trying to get me MEDIVAC to Houston but was unsuccessful.  My cardiologist said he already got several opinions and at this time he is very optimistic that it will heal and I won’t need surgery.

The surgeon and my cardiologist Dr. De Luca both think I’ll be OK without surgery but my primary doctor is a little paranoid to the point that Drʼ De Luca told me not to let his anxiety make me anxious. I’ve been out of the Hospital for over a week and my blood pressure is under control. I have an appointment with my cardiologist in a month and I am scheduled for another CT scan in three months than every six months. I am back to work but I am not allowed to carry anything heavy. Other than having minor pains in my back that seem to come and go I feel great. I almost feel 100%.

The only thing is that I am very depressed but I refuse to take any antidepressants that will alter my mood. I feel that I’m going trough a good phase but something terrible is going to happen to me soon. I have yet to learn about someone who didn’t have surgery and had a happy ending. I know I am lucky to be alive and feel great but my future is very foggy to me I was going to get married and I planed on having kids, but now I feel I’ll make my wife a widow soon and I won’t be there for my kids. I don’t know what to expect.

Brain thanks for this website good bless you.

Thanks

Raul Rodriguez

Melissa Wilson-31

Personal Stories: Melissa Wilson Hello Brian,

My name is Melissa Wilson from Saskatoon, Sask. Canada.  I’m 33yrs old and am a aortic dissection survivor.  Two years ago I was diagnosed with an Extensive Type B aortic dissection, extending from the level of T6-7 extending distally through the remaining portion of the thoracic aorta as well as the entire abdominal aorta, with the dissection terminating in the common iliac arteries.

I see a GP regularly, as well as 6month check ups with a Cardiovascular surgeon.  Their approach to my treatment is too aggressively treat my B.P with Metoprolol 25mg 2x daily & keep my B.P regulated @ 110/70 or lower.  Recently I went to the ER due to extreme hypotension.  Getting another CT resulting in findings of a fusiform ectasia of the thoracic aorta starting where the dissection begins, measuring a maximal diameter of 3cm.  Ectasia tapering towards the diaphram & measures 2.4cm at the take-off of the SMA, left renal artery arises from the false lumen, hemangioma in segment 7 of the liver, also a small hypodensity in the liver, yet too small to characterize. There is replacement of the common hepatic artery, which arises from the SMA and follows an aberrant course.


I do believe the dissection occurred 4 1/2 yrs ago while living in Calgary.  I was taken to hospital & treat with an anti-inflamatory the pressure was relived & was sent home, with later findings a few years later of the dissection (info as above).  I am really confused about all of this & the Dr’s don’t really explain things to me.  I have done my research and know the end result, but I have NOT underwent any type of surgeries, things seem to be not getting any better!  I guess I would like if possible some type of explanation and options.  I feel that if surgery is needed why not soon before it’s too late & fatigue makes it hard to fight.  I am finding that the Dr’s here are not too sure what to do if that is fair in saying.  They recommend that I rest & rest.  I know that this is for info purposes only, but a better understanding & advice on other options would greatly be appreciated.   Thanks in advance, you web site is very informative.   In Spirit,   Melissa Wilson

Sally, Steves girlfriend-37

Personal Stories: Sally, Steve’s girlfriend

It’s been not quite a year since i almost lost my boyfriend, Steve. The worst year of our lives. It all started back in January last year When Steve came home from working late and walked through the door and fell at my feet convinced he’d pulled a muscle in his back, he looked so ill, I called the doctor who arrived 4 hours later, and said his blood pressure was too high and needed to go to the hospital.

When he got there they immediately detected a faulty aortic valve, so off for a CT scan he went and that’s when the dissection was discovered. A type B dissection to the descending aorta.

He was immediately rushed to Southampton general hospital where they performed a aortic valve replacement, and , Wait for it , a reducing aortoplasty to the descending aorta. To this day I still have no idea what that is.


It was a very slow recovery, after spending 7 plus hours in theatre, he got pneumonia and I almost lost him. After spending 3 weeks in hospital I got to take him home with me, it felt like bringing a new born baby home.

They told me if the valve had gone undetected for any longer he wouldn’t have made it, but unknown to us he’d been having symptoms for a good year, terrible palpitations, but being a bloke he ignored it!

Its a year on and apart from taking masses of pills everyday and a quickly fading scar, you’d never know he been through all that.Oh and an incredibly noisy new valve!

The only major worry now, apart from more possible surgery in the future, is that our 3 year old daughter, Lia, has inherited Steve’s dodgy aortic valve, but she is still a lively 3 year old and is showing no signs of ill health and hopefully not for many years to come.

This is a fantastic site and its been a great help reading positive stories, as like you said it all seems to be doom and gloom about mortality rates and such like.

Thanks, Sally. Poole, dorset, england.

**Update** 5/3/2007

This is a very positive update for what has been a very difficult 16 months.

Steve had his yearly MRI scan at our local hospital three weeks ago, and we have now had the best news we could ever wish for, His dissection is healing itself, there is only a partial part of it a few inches long that is still widened, the top and bottom of his aorta has healed up, the middle bit is still dissected, but his cardiologist says hopefully it should carry on healing up like the rest.

Isn’t that just FANTASTIC!!!!!

The Black cloud that has hung around over our heads for the last year is drifting away and its just so relieving I could cry.

Also we had our 4 year old daughter tested and she is just fine, her little ticker is working perfectly.

So it just goes to show that there can be a happy ending to aortic dissection, and I hope this story brings hope to all of you out there who need to hear something positive amongst all this Heartache.

Best wishes to all.

Sally And Steve

Paul Caputi-35

Personal Stories: Paul Caputi

Hello, my name is Paul Caputi and I have marfans. On Dec 22, 1999 I woke up with a bad back and chest pains it felt like someone was tighting my chest with a belt. I went to the hospital, one of the Doctors want to send me home with some muscle relaxers.

This one Doctor want to run one test he already knew I had marfans. He put me on a cat scan and found the tear. I got life flight to umass Worcestor, in Mass. after two weeks of being there take blood pressure meds. On Dec 30,1999. I told one of the nurses that I did not go to the bathroom all day and I was drinking water like a fish.


They put in a catheter and I still didn’t go. The Doctors rushed me to the cat scan, and they found that the tear ripped to my kidneys and was blocking them. At that time they gave me, my last rights while they life flighted me to Mass General Hospital where Dr. Richard Cambria saved my life by repairing the tear.

In 2002 of March I went to New England Medical and had the anueseym repaired. Just this March 2, 2005 I two anueseyms removed in my left groin {iliac}. Back in 1995 I had a abdominal aueseyms removed. I still will not let this syndrome beat me. I am not dead yet and that’s is how I live, I coach my stepson in football and in basketball. thank for you time and god bless.

Contact Paul

Sheba MacDougall-31

Personal Stories: Sheba MacDougall

Hi, my name is Sheba and am a 31 year old female. Tuesday February 1st 2005 I underwent emergency aortic dissection surgery.

The day was like any other day; I woke up, had my coffee, got the kids ready and dropped them off at school then headed to work. I felt fine, just another day Right????

Well, Around 2:00 in the afternoon, I stood up from my desk and was talking with a co-worker, then it happened, all of a sudden Ouch my bottom jaw was pounding, burning it felt like needles in my jaw. But, I thought that it was just my teeth were bothering me and I needed to go to the dentist again. I went back to my desk to get a drink, I needed to sit, but my water bottle was empty. My chest started hurting a little, but it felt more like anxiety or something, as I was walking to get more water, another co-worker commented that my chest and neck was all broken out with hives. I started getting a little nervous; I thought maybe I was having an allergic reaction.

So I started thinking about everything I ate for the day – nothing was new or different. I grabbed my friend Angela and told her to stay with me; I was getting a little more scared. Back at my desk, she told me to call my doctor I was not looking to good. I called my doctor, apparently only the nurse was available to come to the phone, and she was on another call. I told the secretary my symptoms but the nurse was still unavailable, I gave her my cell phone number and told her to call me, I was going to head over there and see them or go to the ER.

As I was driving over my doctors nurse called. It was getting harder for me to talk, like I was out of breath, and it was a little painful. I told her I was going to go to the emergency room, I was real nervous. The nurse also thought I was having an allergic reaction and said I could come there and have her check me out. I asked what she would do to make me feel better, she suggested that I take benedryl; I asked if she had benedryl there? Once she told me she didnt have any, I told her I was going to the Emergency room.

As I think back, I dont really remember the drive over to the ER, which probably was not the smartest thing I ever done, but I do remember walking in. I just felt so weird; I was convinced that I was having an anxiety attack or allergic reaction.


I signed in, within a few minutes I was called to see a nurse, she checked me over, she too thought I was just having an allergic reaction. She left the room and within a few minutes a young doctor peeked his head in and said yes to give me some benedryl. I was told that I should feel better in 15 minutes. She sent me back to the waiting room. I remember sitting there thinking, I should get back to work- I will be better in 15 minutes. But for some reason I stayed (Thank God) because what happens next changed my life forever.

I was waiting for just a few minutes. A nurse brought me into a makeshift room with curtain walls. She gave me an EKG, the results were fine. As I was waiting to talk with a doctor, I checked my messages at work, after a few minutes the doctor came in, Doctor Michael Schwartz. I told him my symptoms, he looked at the EKG, hum. it looks fine. He ordered me an X-ray. The X-ray came back fine too. He requested blood tests. I must have had bad veins that night because my arms were deep purple with bruises.

I should have taken pictures of the bruises because I have never seen anything like that in my life. I looked gross. The doctor was asking me more questions with his interns behind him, he even thought at one point it may be heartburn and ordered up a medicine cocktail for me to drink. As I was waiting for the cocktail to work, I started to return messages left on my work phone. I also made a call home to let my mother who was watching my kids that night (Bridgett 11 and Devin 10) that I was at the hospital, not to worry and I would probably not be home in time for dinner. I told her that I am having an allergic reaction and at this point I still believed that.

After waiting for the drink to kick in Doctor Michael Schwartz came in to see how I was doing. Since there was no improvement he made one comment that I will never forget and will forever be grateful I hate not figuring out what is wrong with my patients. He ordered a CT scan. I can not show my gratitude enough for him, so many people die from an undetected dissection. But Dr. Michael Schwartz was not going to let me go home with these symptoms with out figuring out what was going on.

While I was wheeled down to the CT scan room, I was talking to the man bringing me there, telling him I was just in this same hospital a few months back and the nurses I had were so great, and to see if they were working tonight, I wanted to say hello. That previous stay resulted in back surgery for removing a broken disc. Yes, this has been a tough few months!

When I finally got in the room for the CT scan, the nurse commented on my bruises. I told you they were bad. I was purple from the wrists all the way up to the middle of the arm. She took a look at the IV that was placed in for the dye. She noticed that there was some swelling on the underside of my arm. This was the saline they put in to make sure they got the vein. I guess they missed? She took the needle out, and poof- another bruise.

She tried another vein, and poof again- a bruise. She ended up calling someone else to get a good vein. At this point I started crying a little, why am I so bruised up, why am I not feeling better; this does not make any sense to me. I get up on the bed and she wants me to lay down. It hurt so much to lay down, I remember thinking this is not right. What is going on now, wondering if its related from my back surgery from a few months before? But it was my upper back that hurt now not the lower where the surgery was.

So we put a few pillows under me and I tried to deal with the pain! When they were done I looked through the glass window where the technicians were, a few more people came over to look, they had concerned looks on their faces. I started crying again, but looked away thinking its just in my head. I am fine there is nothing seriously wrong with me.

No one said anything and I was brought back up to the ER. I still was in good spirits, I asked the man wheeling me back, if he found out if my nurses were working and if was he able to get in touch with them. He said they were working; he could not get them on the phone but would stop up on the floor to let them know I was here! I was excited to say hello to them again, they were so wonderful to me and my family. When I arrived back to the ER, I was brought to a room, a real room, not the makeshift one with curtains for walls. I should have known this was not good.

Once I was in the room, I said I needed to use that bathroom, the nurse Amy said I needed to wait for the doctor, he would be right in. I thought that was weird? I got a bit annoyed. She was right, the doctor would be right in. Dr. Michael Schwatz stood at the end of the bed and said, remember I told you we look for the obvious things that may be wrong and sometimes there is something rare that we find, we did, you have a tear in your aorta and need surgery. He described what was wrong, I had a tear from the arch of my aorta all the way down to my stomach, but I really did not under stand the severity of it all until days AFTER the surgery.

He wanted phone numbers of family members for him to call, this was serious and there was a possibility that I might die. I told him to call my mom, she was at my house watching my kids and to call my husband Chris, he was working. As we waited for them to come to the hospital, they told me that they were going to give me morphine.

I told them that I did not want any drugs, but I guess my blood pressure was so high that I needed it. I knew nothing about blood pressure, what it is supposed to be at and so forth. I do now! Dr. Michael Schwartz told me he was calling down the Cardiac specialist from that hospital but at the same time he was coordinating a team at Massachusetts General Hospital (MGH). He told me that they are more equipped to handle this type of surgery. Again all of this makes no sense to me but I am so glad he did! He knew that the doctors at MGH have a facility more equipped to handle this procedure. Boy was he right!

The Cardiologist came down, reviewed the CT scan and agreed to have me transported to MGH. My mother and husband arrived, both looking completely horrified. I told them to relax I would be fine. I had no idea what I was in for! Its probably better that way. I even said to the doctor, I needed to get a second opinion, thats what I was told when a doctor says to get surgery. He said there was no time for second opinions; I would be dead by the end of the night if I did not get surgery. Well that put my mother and Chris over the edge. I started to worry, one never really knows how they would react when you are told you will DIE, I think I was in shock, I think I even told him, he was kidding?

He got a call back from MGH and told him that Dr. Alan D. Hilgenberg was on call and would be performing the surgery. Dr. Michael Schwartz said I was in the best hands, and could not have asked for a better doctor to perform my surgery. I thought, of course you would say that, what you are going to tell me this is the doctors first time and good luck?

I was prepped for the ambulance ride and Amy my nurse was coming for the ride to. I commented to her that she gets to come on a road trip, how fun. She was great, I think that nurses are really angels in disguise and the doctors are Saints. I would never have been so calm if it was not for her. She kept telling me what exactly was going on, and that I would be ok. My blood pressure was not going down so she kept giving me more morphine. I was starting to get a little silly.

We arrived at MGH, as I got out of the ambulance; I saw my husband, my sister Melanie and her boyfriend Chase. They all looked so scared. They brought me into the ER, and then Amy (the angel) said that it was going to start getting busy and lots of people were going to be coming in and being getting me ready for surgery. The nurses, doctors and everyone in the emergency room were so great they let my whole family come in the ER with me, little did they know how big my family was, my dad was driving down from Maine with his wife Justine, my brother Kevin, my mom came in with my step dad Dan, even my best friend Deb showed up, we said she was my sister.

There were so many people prepping me for surgery, and again with the needles, it was so hard to get some good veins to draw blood and put in the IVs that the Anesthesiologist had to do it. I remember seeing Dr. Alan D. Hilgenberg, he came to talk with us, I just remember his smile, and he made me think every thing would be fine. As I just about to be wheeled away, my family looked so sad, eyes were all field with fear and tears. I kept tell them I will be ok; my physic said I was going to live a long life. That must have been the morphine talking.

When they wheeled me into the operating room, they put me on the table and I said, When I wake up, even if I cant talk, just tell me that my kids are all right. Thats all I want to know. Just keep telling me that my kids are all right!

I woke up over 7 hours later! Thank God, well Thank Dr. Alan D. Hilgenberg and his team. He repaired the arch of my aorta, there still is a tear at the bottom near my stomach. They do not believe that I need surgery on that. If I take care of myself and have them keep an eye on me, I will be ok. I was in ICU for 2 days and then in recovery for a little over a week. The staff at MGH are the most amazing people, I did not realize until I left what great hands I was in. To this day people continue to tell me that.

I have had my post surgery appointments; one with my cardiologist Dr. Eric Isselbacher and one with the surgeon Dr. Alan D. Hilgenberg, whom I found out after the surgery are both Co-Directors of the Thoracic Aortic Center at MGH. I could not have asked for any one better to be taking care of me. I am doing well, my blood pressure is a bit high so I have new medication to take. I have started really watching what I eat, I would never have thought at 31 I would need to watch every little thing I eat and do. I know this is going to be a challenge for me, but I must, I have 2 beautiful children to raise and watch grow up.

It is hard to believe some days that just 2 months ago I almost died? I continue to be told that I Look great. But I dont always feel great, there are a whole bunch of emotions that come with this that no one is aware of, well no one that hasnt been through this. I still think I am like a walking ticking time bomb, even though my doctor said Im not, I still get nervous when I can feel my heart beating, and I have mini anxiety attacks. And if you remember, that is how this whole this started; I thought I was having an anxiety attack or something similar. I have found some comfort in reading other peoples stories, I see that I am not alone.

I have found helpful information on your website- Thank you! It has taken me a while to write about my story ( I know its long), I got very emotional at first when I started to think about what really happened vs. what almost happened vs. what could have happened. There are so many emotions, being scared, sad, and happy to be alive, self pity and then there is being mad. I did not think I would have been mad, but I do get mad, I get mad thinking, here I was, a 31 year old woman taking care of her self and family and this happens. Why? Why me?

I guess its all just part of the recovery process, and you have to have positive thoughts to get healthy.

Never take anything or anyone for granted- say THANK YOU!

Tell the people you love, just how much they mean to you.

Live your life like its the last day of your life, because we all know how precious and short life really is.

Thank you again Brian for providing this website.

Sheba

Here is some information that I thought you may be interested in.

The Surgeons at Massachusetts General Hospital perform more aortic arch reconstructive surgery than any other center in New England and they have great information about the surgery they performed on me, as well as other types on their website. They have included a section on Thoracic Aortic Disease research that Dr. Alan D. Hilgenberg was involved in. Doctor Michael Schwartz was right; I could not have been in better hands.

The MGH website has a live camera on selected surgical procedures where you can watch and ask questions, and on Thursday April 14th, at 4:30ED and Aortic Aneurysm will be repaired.

http://www.massgeneral.org/

or

http://www.or-live.com/massgeneral/1364/

Kevin M Little-38

Personal Stories: Kevin M. Little

I was diagnosed with a distal aortic dissection in November 2000. I developed an aneurism which required surgery in April of 2002. Basically, I had a section of my aorta relaced with a dacron tube/hose.

I am taking 1200 mg of Labetalol and 20 mg of Norvasc a day to control my blood pressure. (Half the dosage in the am and half in the pm )

The BP medicine certainly zaps your energy at times, and my legs get tired/achy quite easily. I can now walk all I want but can only jog a very short distance before my legs give out and begin to tire/burn ache.


I am simply thankful to God to even be here, and am constantly learning to deal with the changes that I have had to make. As many others have commented , it is easy to get depressed. All I have to do is look at others who have not been as fortunate, and I then feel fortunate and blessed.

It took a while for me to regain confidence that I could be active again. I finally came to the conclusion that as long as I didn’t get my blood pressure up too much, that I could be moderately active. Now I hike, ride a mountain bike (not aggressively), paddle a canoe, take wildlife photos, etc. I work full time as a dockmaster with my time split between outside physical work (being careful to avoid getting my blood pressure too high) on the docks and with paperwork.

If I can be of assistance to anyone who needs /wishes to discuss anything, contact me.

Thanks Bryan for a terrific site. I am sure this site helps many people.

Contact Kevin

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