Category: Descending Page 2 of 9

Michael Shoemaker-50

Name: michael shoemaker
Age at time of Dissection: 50
Type of Dissection: Descending
Date of Aortic Dissection: 3 January 2006
Tell Us Your Story:

I had a type b aortic dissection…went to ER with symptoms scribbled on paper in case I became unconscious. Numb from waist down. At one point I had a ghostly white foot and a purple foot. ER doc quickly ruled out heart attack, then paid attention to my scribble notes. Sent me thru the CT Scan, then to cardiac intensive care. No surgery…dissected both thoracic and abdominal. Stopped smoking. Blood pressure meds keep my blood pressure reasonable. (120/68 or so)….

Fay N-31

Name: Fay N
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
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.

Vangeline Perry-45

Name: Vangeline Perry
Age at time of Dissection: 45
Type of Dissection: Descending
Date of Aortic Dissection: 31 July 2013
Tell Us Your Story:

On this beautiful July day I enjoyed my day with family and co workers. I had planned a evening of fun as well with family. I arrived at my home to prepare to go out. As I arrived to my home I started to feel funny. A feeling unknown, I had not felt this feeling before.

I continued on to bathroom where my husband stated I fell to the floor and he picked me up and hurried me to the near by hospital. Where they air lifted me to a hospital that was equipped to handle my condition. I had no clue what had happen to me after arriving home. 5 or 6 days later I awakened to tubes and machines every where. The doctor responsible for my survival is Dr.Anderson and his team at heart institute of Greenville NC.

I am grateful for their quick response and positive words and constant intervention of my medical needs. I suffered a aortic dissection with a thyroid mass caused by graves disease. I had to have a incision to the right leg do to pressure that caused drop foot.

I pray that one day I can repay these awesome professionals for their loyal dedication to ensure my recovery.I had no idea what was happening nor what did happen to me. There was no early signs. It is very important to get regular check ups and pay attention to what your body say to you.

Marie Fishwick-56

Name: Marie Fishwick
Age at time of Dissection: 56
Type of Dissection: Descending
Date of Aortic Dissection: 31 October 2012
Tell Us Your Story:

My name is Marie Fishwick and I was very busy 56 year old working upto 42 hours per week caring for others. I have a back ground of high blood pressure for around 20 years and although I always took my medication I didn’t always keep my checks ups (stupid I know) due to fear of knowing what my blood pressure was. I wish I had now.

On Wednesday 31st October 2012 I woke up at 7am to get ready for work then ten minutes later while still in bed I had sudden severe pain in my lower abdomen at the front, within minutes it went round the back the upwards to my chest. I knew it seemed serious but thought I would try painkillers and indigestion remedies first, after an hour I got myself to the hospital and explained what was happening. I was immediately taken through to a&e and checked for heart problems but nothing was found.

I have never been in as much pain, nothing they gave me stopped it and I couldn’t keep still. After xrays, blood tests and different pain relief I was eventually sent for a ct scan more than 6 hour’s after arriving at hospital. I had moved to the assessment ward by this stage where a sister in charge and a training specialist came to me and pulled the curtains round the bed. They told me I had a descending aortic dissection and it was serious, I knew quite a lot about the body and knew immediately what I had, I was alone and scarred as I had sent my family home to return later at visiting time. My daughter was pregnant with her first child and I hadn’t told her I was in hospital- how could I tell her. I rang a good friend to come immediately and explained I couldn’t tell my family but knew I had to.

At visiting I told my husband and mum and was taken on to coronary care unit, I was put complete bed rest with oxygen, monitors, catheter, drip and various other things and was told it could mean an operation. I could hear them on the phone all through the night talking to other hospitals about me and putting them on standby. The hospital I was in didn’t see many people with an aortic dissection. I survived the night and was told the first 72 hours were critical. I knew I had to try and keep calm due to my blood pressure going up, I survived the critical time limit and was given morphine all the time I was in but it was never enough to get rid of the pain.

After 16 days in hospital I went home with lots and lots of medication and I was petrified of dying, the amount of fear is unbearable and you feel so alone. I knew no one with the condition and knew of no backup on the Internet. I had the worst time over the next few months, couldn’t eat, sleep and lack of interest. I should have had a hospital appointment after six weeks but it turn into 16 weeks, I though I was losing the plot and went to the doctors for an increase in my antidepressants, he was very supportive. I cried and cried for months. Now I am nearing my second year a things have changed so much in my attitude towards my condition, yes I’ve got it but I need to live my life without fear and I do. I have found groups on Facebook with similar and much much worse, I consider myself lucky. Please try to let your fear go or it will eat you away

Balusamy Suthagar-47

Name: balusamy suthagar
Age at time of Dissection: 47
Type of Dissection: Descending
Date of Aortic Dissection: 24 November 2013
Tell Us Your Story:

I am a practicing Pediatrician from India, aged about 47 years,not a smoker,not an alcoholic but a known hypertensive for more than 10 years had acute type 2 aortic dissection ,been placed stent on 15th day of the insult.

I didn’t have any complication and I now work only in the morning between 10am to 2pm.I regularly go for a slow walk for about 3km a day.After the illness I was detected to be borderline Diabetic with HbA1C maintained well below 6% withT.Metformin 250 twice daily.

Other medicines I take are T.Metoprolol 100 mg Bid,T.Telmisartan 80mg plus Hydrochlorothiazide 12.5mg in OD,T.Clinidipine 5mg BD,T.Clopidogrel 75mg OD,T.Ecospirin150mg OD,T.Storvas 2omg HS,T.Larpose 2mgHS and my BP is maintained below 120/80mmHg.I don’t get get sound sleep in the afternoons.In the night I have a nice sleep with a sedative.

I wish to have at least 2hours sound sleep in the post lunch session also.What to do?

What are the parameters to be taken care off for longevity of my life? because there is no clear data on life expectancy in my illness as well)how many hours shall I work per day?

What about driving on my own for a short distance?
shall I indulge in sexual activities/

I do get palpitation in the post lunch session despite normal HR and normal ECG findings at that time.Why? and how to get relived from it?

I know pretty well that there is no data available about the lifespan,I wish to know how proceed further in terms of activities,drugs,time of review and the need of second opinion.

Dr.Suthagar Balusamy
Suriya Hospital,
10,arignar Anna Street,
Annur Road,Mettupalayam-641301
Coimbatore Dist.,Tamilnadu,India.
91 9952166966

John Snow-56

Name: john snow
Age at time of Dissection: 56
Type of Dissection: Descending
Date of Aortic Dissection: 18 February 2010
Tell Us Your Story:

My story starts 15 years before my dissection and probably saved my life , my father died from abdominal dissection so I new some of the symptoms and new it could happen to me because they told me then it was herititary . My story starts on a date I’ll never forget . I had judst finished dinner and was visiting with wife and son started to get up and it happened the most terrible pain I’d had in my life and I tolerate pain pretty good but like this.

Wife called 911 she thought I was having heart attack but I new better I had seen my father and right away what was happening god was and still working for me . To make long story short went to er flew me to Houston where in my opinion the best thorasic surgeon in the world they also found an anurism in aorta same location as descending disecction they I endoscopic insertion of 14 inches did well after surgery went home in 3 days two were later had another tear life flight back to Houston had another endoscopic insertion extended another 4 inches need to mention my heroes.

Name Dr casselli saved my life by grace of god and support of my loving wife and son and great friends doing well . The only problems are the limitations I was pretty active but now can’t do what used to but thank god every day that I’m still here with friends and family . The Dr told me I was miracle because I had tear and anurism at same time and survived

Marty Parker-54

Name: Marty Parker
Age at time of Dissection: 54
Type of Dissection: Descending
Date of Aortic Dissection: 23 December 2010
Tell Us Your Story:

I am female. I was pulling on a board in the bottom of the closet and felt a pain in my back. Pain got worse and spread to chest as well. I went to the hospital and was given morphine which did not relieve the pain but was given nitro glycerin and pain started easing.

A CT scan was done and it was discovered that I had a dissected aortic aneurysm. I was transferred to a larger hospital and was in CCU for 8 days on pain and blood pressure meds. The Doctor consulted over several days with doctors at the Cleveland Clinic. The decision was made that I needed open surgery and repair with dacron graft. The Doctor said the aneurysm was only 4.3cm.

It took about 18 months for me to feel normal again but am very thankful the decision was made to do the open surgery. I believe I would have died if they had sent me home on meds. I am followed closely by my cardiologist. I do have an enlargement of the ascending aorta as well.

Kev Heywood-50

Name: Kev Heywood
Age at time of Dissection: 50
Type of Dissection: Descending
Date of Aortic Dissection: 17 April 2014
Tell Us Your Story:

With no symptoms I was sat watching tv with my son at 9.30 in the evening when I felt the most intense crushing pain in my chest. It very quickly spread into my upper back and then knew I was a spot of trouble. After 5 minutes I asked my son to call 999 and the ambulance arrived within five minutes. I remained fully coherent and was able to answer fully all questions by the paramedics and even the ecg gave no indication of my condition. I was taken to hospital after about 30 minutes and even walked to the ambulance!

I was given pain relief enough route to little effect, I think a spray under my tongue and aspirin? The paramedics were brilliant again when we arrived at the AnE (which I believe saved my life) and I was in a bed almost immediately bypassing a pretty long queue, and wired up blood tests taken and morphine orally. Things moved along eventually having a ct scan which finally diagnosed a descending aortic dissection. Pain relief and other drugs were then given to me, and things become a tad hazy at this point but remember being moved by blue light ambulance to QE hospital in Birmingham to a specialist unit and understand I then spent 2 days in intensive care unit and then 17 days in the coronary care unit.

My treatment was to control my blood pressure with medication rather than surgery, which I understand research shows to be the preferred option, although this took quite a while to get me off IV to oral meds.
I left hospital with a large bag of 12 different types of medication and here I am resting and trying to do as I’m told. I have bought a blood pressure monitor and recording readings to give to my gp on our regular appointments.
I realize I am so lucky to have got through this so far and appreciate I have a long way to go, however I’m scared of what the future will bring… I have so many questions on that but will try to stay strong.

Paul Rackham-48

Name: Paul Rackham
Age at time of Dissection: 48
Type of Dissection: Descending
Date of Aortic Dissection: 19 May 2012
Tell Us Your Story:

Iposted this on but as I’ve enjoyed reading the stories on this site I thought I’d add mine too. I often find myself nodding along to peoples’ observations on their own strengths and weaknesses, the joy of family and friends, and the wonders and limitations of the various elements of the National Health Service, or whatever health service you use where you are in the world.

The 19th May 2012 looked like being a good day. I could see I was getting fitter due to cycling 20 miles a day as I had just completed a 45 minute run around the park. It was my daughters 18th birthday so we had Bucks Fizz and smoked salmon for lunch and were looking forward to a family meal out at a local restaurant.

During the car drive there, the dissection started with a severe pain in my chest and abdomen. Luckily I was able to pull the car over to the side of the road and the ambulance was there in a few minutes. Like many of you know, the pain is indescribable and through the tears and fighting for breath I can remember seeing my four children lined up on the pavement watching me being treated in the back of the ambulance. I can’t imagine what my wife Jacqui was going through as she followed the ambulance in the car, but I do know how grateful she was to one of the ambulance crew who negotiated for her to leave the car on the ambulance ramp so she could come straight into the A&E with me.

St. Thomas’ Hospital has to be one of the best located hospitals there is, on the south bank of the River Thames in central London, with views across the river to the Houses of Parliament and Big Ben and downriver to the London Eye. Despite the fact that it is a regional referral centre for Aortic Dissection it took about 24 hours to be correctly diagnosed. I had severe pain in my stomach and the most excruciating back pain. I can still remember the relief of sucking down the syringes of morphine. Luckily I was sent for a CT scan for a pulmonary embolism and they discovered the dissection. I thought they had been pretty brisk and efficient but they stepped up into another gear when I came back from the scan. By this stage Jacqui had gone home, the pain had been getting less, everything had seemed calmer – I was still expecting people to tell me I’d had a bad case of wind and to send me home! After the initial shock of going to A&E, she then had the lovely experience of getting the “please come back to A&E, it’s a bit more serious” phone call – courtesy of a lovely A&E nurse who lent me her phone.

The Vascular Team took over and whilst rushing to insert the arterial line and get me admitted to the High Dependency Unit, explained what had happened. It was a Type B dissection, the “good” type apparently because it doesn’t always require emergency surgery, although I latter found out that it has its own complications.

The next two weeks were spent hooked up to the machines and drips whilst they tried to get my blood pressure and heart rate down and work out whether I needed surgery. The staff were fabulous but it was my family that kept me sane. Seeing them at visiting time was like cool water on a hot day. Two of my sisters even travelled back from Spain to see me.

Apart from telling me how shocking I looked in the dusky pink hospital pyjamas, and not to look online at all the scary information about Aortic Dissection, everyone was most taken with the view from my window bed and disappointed that I was discharged the day before the Queens Jubilee Thames River Pageant that floated right past.

Getting home after two weeks was fantastic, but I did succumb to the internet and scared myself silly, at the same time realising how lucky I had been. I tried making sense of the prevalence, incidence and survival statistics but ended up just telling myself and others I was really unlucky to have an Aortic Dissection but more lucky to survive it – well that’s how it felt anyway.

Everyone rallied around and we had more more home made dinners donated than we had room to store. No one would let me pick up anything heavier than an iPad and I regularly veered between bouts of self-pitying angst – why me? and elation – thank the stars!

June was passing and Fathers Day and my birthday had never felt so good. I thought everything was going well till I mentioned to my entertaining Hypertension Consultant that I was still getting increasingly bad back pain as well as increasing pain in my legs when walking. Well, after he’d finished telling me to use beetroot shots and to buy The Wine Diet, he told me I should mention this to the Vascular Team. On their advice I was back in A&E the same day and after another CT scan was told I needed a stent graft for my complicated Type B dissection.

The operation went well, apart from developing a grapefruit sized haematoma where they made the incision in my groin. I am now the proud owner of a GORE TAG stent graft in my thoracic aorta. The surgeon told me it cost £16,000 – not quite the Six Million Dollar Man I remember watching as a kid -“We can rebuild him……..”

Looking back it was a really hard time for everyone. My eldest daughter was doing her A Level exams, so I was really proud that she got excellent grades, and my other daughter said the best bit about me being home was that it would stop all the “helpful visitors” putting the cutlery in the wrong drawers. The children also had the fun of going through their own scans for signs of abnormality in the aorta. They found that my eldest son does have a slightly dilated aortic root, so we’ll have the blood tests to see if we have a “mispelt gene” and await his MRI scan for more information. I’ve recetly signed up for the genetic research programme being run by the John Ritter Research programme. No contact sports for him in the meantime. My youngest son has developed an even more empathetic nature than he had before, often checking if I’ve remembered my tablets and trying to convince me that the main difference is that I’m not so wreckless as I was before.

So, nearly two years on and I can’t say I’ve totally adjusted to my new life. The pain has mostly gone, but I still get the intermittent claudication. I’m back at work but am exhausted a lot of the time. I’m off the career hamster wheel and just concentrating on getting through the days. I really struggle on stairs, even though I can do a brisk walk on the flat for about an hour now and I know Jacqui worries about me. She works even harder than she already was doing to keep the family and home going and I love her more than ever.

My most recent MRI showed a good result according to the Consultant. The aorta is 4.3cm and he thought everything looked pretty stable, though one leg and kidney are now supplied off the false lumen. I forgot to ask him what happens if the false lumen thromboses and the blood stops flowing through it. I’m due another scan in October this year so I’ll check then. I’m learning that I need to listen to my body but not to worry about every little thing!

My blood pressure and heart rate are well controlled but I have a love/hate relationship with the medication. How can you not love something that reduces the risk of further dissection, but I could really do without the tiredness and spaced out feeling.

So that’s me – another AD survivor!

Tarana Desai-34

Name: Tarana Desai
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.

Donald Cox-52

Name: Donald Cox
Age at time of Dissection: 52
Type of Dissection: Descending
Date of Aortic Dissection: 12 October 2013
Tell Us Your Story:

I woke about 5am the pain was incredible. I believed I was having a heart attack. I took several low dose aspirin and tried to drive to the hospital, which was about 25 minutes away. I made it a mile, saw a State Patrolman at the gas station, by this time I was cramping and losing control of my legs. he called for an ambulance, within minutes several police vehicles were there and they were trying to keep me calm, which was working fairly well.

The ambulance arrived and I was quickly loaded and the EMA tech started an EKG. Within minutes he told me that it was not a heart attack. But my blood pressure was 297/189 so i was given nitro glycerin. He told me he thought it was an acute gall bladder attack, this calmed me down much more. I was taken to RMC medical Center in Anniston AL, In the emergency room the nurse also said she thought it was a gallbladder attack. But the pain was coming back bad and I was given a shot of Daluded in my IV. within a few minutes.

I was taken for a CAT Scan. When the results were read I was put on a Life Flight Helicopter and flown to UAB hospital in Birmingham AL. I remember being rolled toward the door there and not much after that. I was in CICU for a few days. On Wednesday I was put in another room I remember things after this. I stayed there until Friday and was released. My Doctor was James Daves, he saved my life and whatever time I have left on this earth I owe to him and the staff at UAB. I was horribly over weight, smoked and am a 4th year student at Jacksonville State University.

I have not smoked another cigarette, I have lost 30+ pounds so far. Right now I am scared that I do not have a future. I go back to Dr. Daves in January for another CAT Scan, it will tell a lot about my future.

Bill McCall-56

Name: Bill McCall
Age at time of Dissection: 56
Type of Dissection: Descending
Date of Aortic Dissection: 9 October 2009
Tell Us Your Story:

After working the 2nd shift as a Practical Nurse@ the Veterans Administration, I went home looking forward to a day off before working the week-end. While enjoying some private time with my wife, I suddenly had a lower back pain which I thought was the worse possible time to have a muscle cramp.

No matter what I tried the pain didn’t go away, about 3am it lessen and I finally fell asleep. When I awoke the next morning my back pain was still present & now I also had lower abdominal pain. Knowing that it wasn’t normal I drove my 4by4 Suv to the Emergency Room where my primary physician had privileges.

Walked to the Triage Nurse who took my blood pressure and asked if I could walk to a stretcher. With an IV in each arm and numerous test, I spent 10 long days in CCU.

The staff was surprised when I was discharged because I wasn’t expected to survive the first night.

Mike Kay-52

Name: Mike Kay
Age at time of Dissection: 52
Type of Dissection: Descending
Date of Aortic Dissection: 19 December 2011
Tell Us Your Story:

To start with my story, I was diagnosed with a descending aneurysm the morning of my aortic heart valve replacement for a bicuspid aortic valve back in October 2000. The aneurysm was confirmed during surgery but it was not large enough for them to repair at the time. I received a St Jude’s mechanical valve and life was great after recovery.

Fast forward 12 years and while I was at work I suddenly had excruciating pain in my chest. I made it back to my office and ran the symptoms of a heart attack through my head but I wasn’t having radiating pains to my arms or neck. I got up and walked outside and a waved over a fellow employee. I walked back to my office, sat down in the chair and then the pain really settled in. The “elephant on my chest” to pain radiating from my chest to my back and lower back. My friend called 911 and the journey began.

I was transported to the local hospital where my surgeon who had installed my heart valve and diagnosed my aneurysm was on rounds. He knew right away what the problem was (he had been watching it since the diagnosis through CT’s). After the 3D CT confirmed the dissection, I was also told that my aorta was a aneurysmal mess.

I was transported to an Orlando hospital where I was suppose to have the aneurysm repaired. After three days of planning the surgery it was decided that I would be going to Shands at the U of F for surgery. OH NO!! Gator country for a Hurricane fan. (have to have humor, for life is truly short).

I was transported to Shands via ambulance (took two ambulances, the first broke down after 30 minutes on the turnpike) and after spending six hours in the CICU I was told that I would have surgery the following day. Fifteen minutes later after my BP dropped out I was wheeled to surgery where Dr. Martin and Dr. Ramoa repaired my further dissecting aneurysm.
After 4 hours of surgery my family was notified that I had made it through the tough stretch of the surgery and after another 6 hrs of surgery was wheeled in to the same CICU.

All I can remember of the immediate post surgery was Dr. Martin asking me to move both my legs and saying “the patient has movement in all extremities”. He patted by legs and then it was lights out for almost 48 hours. My Christmas present that year was a new chapter of my life. That and having that damned ventilator removed.

I spent twenty days in three different hospitals. The majority of them in Shands surrounded by blue and orange (but I’m not complaining, just noting). I spent 27 minutes on the H/L machine this go round. I have 17 cm of 30 mm Dacron aorta and 7cm of 10 mm Dacron attaching my left subclavian artery to the graft. All that through an extended thoracotomy.

I am truly lucky to be writing this story. It didn’t look good there for awhile. While I do not like the “new me”, I have PTPS and I am taking meds that makes my short term memory like catching water with a sieve, I am happy to be alive. It is amazing how the human body reacts to pain, shock, surgery, anesthesia and recovery. I still suddenly remember things that occurred while I was in the hospital from the wild nacoticaly induced dreams to the gentle care that was given by the nursing staff. Email me if you have any questions about future surgeries or just want to chat.

Thank God for Modern Medicine!!

Tshombe Hamilton-41

Name: Tshombe Hamilton
Age at time of Dissection: 41
Type of Dissection: Descending
Date of Aortic Dissection: 8 May 2011
Tell Us Your Story:

My name is Tshombe Hamilton and I am an aortic dissection survivor. Here is my story:

When John Ritter died of heart an aortic dissection in 2003. His death sparked something inside of me. I don’t know what it was but it was something visceral.

On May 8th 2011, Mother’s Day, I had driven from Goldsboro NC back up to Ashburn VA where I was living. I had been living in Ashburn for the last two years. I had gotten a job promotion, and I left my family back home in NC. Every week I was coming home to see my daughters at the time ages 14,12 and 7. The drive from NC to Ashburn 5 hours one way so 10 hours round trip I would leave early on a Friday and make it home by 11 or 12 with the DC/VA traffic.

This time I had been done to visit my mother for Mother’s Day. I had had returned and was sitting in the chair eating Raisin Bran when a pain shot down the left side of my neck and went int my chest. I thought right then I was having a heart attack so I went to the kitchen and chewed up two aspirin. I got to my car and drove myself to the hospital. When I got to the ER, I realized that I had forgot my wallet, so I drove back to my apartment and picked it up. I went back to the ER and told the nurse I think I was having a heart attack. They checked my and the Dr said the test that they ran showed no evidence of an attack so they kept me overnight for observation.

The next morning the cardiologist can by and said that they did not see anything except a murmur but it was nothing to worry about. He signed my discharge papers and as I was leaving I remember asking him, “You sure I don’t have what killed John Ritter from “Threes Company ?” He said no. This was Monday May 9th.

The next day I woke up to some of the most excruciating stomach pains. I figured on top of everything, I was now getting an ulcer. I went to CVS and got antacid hoping that would ease the pain but it did not, I went to bed hoping it would go away. That was Tuesday May 10th.

Wednesday May 11th. I woke up with my stomach still hurting. I went to work but then had to go to the Dr. becacuse my pain was so bad.

So I go to the Dr. and she had an intern with her. She tells me to come back in a week?!?!?!? I tell her that if I have to come back she needs to give me some pain medication because my stomach hurts so bad.

I guess that triggered something within her because she sent me over to have a contrast test done. I hate needles because I have little veins. they did the contrast test and sent me home.

Later the Dr called me saying I needed to get to the hospital as soon as possible. They had found a tear in my aorta. She asked if I needed an ambulance and I said no, I could do it.

I got to the hospital and they informed me that I needed to have another contrast test to locate where the tear was. They informed me that the body cannot take two contrasts in one day and that my kidneys would probably shut down and I would be on dialysis for the rest of my life.

They did the test and called in Life Flight. They airlifted me to Inova Fairfax where Dr. Lee operated on me for twelve hours. They also gave me a bypass. This was Wednesday into Thursday.

The weirdest thing about being under is there is no sense of time. I came too almost 2 days later. They had repaired a 6 centimeter tear in my aorta. It had descended down to my kidneys which was why I was having the pain in my stomach.

When the cardiologist came by he was speechless. Not only I correctly called what it was, I had survived two days. He told me normally when that happens, you only have hours.

Luckily my kidneys survived the contrast. I am now back in North Carolina with my family. I hope that this helps someone. Thank you.

Sonya McLendon-40

Name: Sonya McLendon
Age at time of Dissection: 40
Type of Dissection: Descending
Date of Aortic Dissection: 5 March 2013
Tell Us Your Story:

Hello my name is Sonya, I’m from Louisiana, and I have been out of the hospital for two months after a diagnosis of AD. For me, this was not a disease I was unfamiliar with. Five years ago, I buried my mother, who passed away two years after her first surgery for her dissection. Upon a second surgery, her body could not handle it anymore! She suffered severely and left me too soon, but she is free now! Three years ago, my brother was hospitalized and also diagnosed with AD. He also had a surgery in which they were able to go in through his groin area and place a stent! Thank the Lord, he is doing wonderful now! His story is one of a successful fight!! So now, I am fighting the same battle!

On March 5, 2013, I was sitting at my desk at work when my perfectly healthy world fell apart!! It felt like I was hit with a board across the back. Even after having two family members diagnosed, I was misdiagnosed when I arrived at the hospital. I was sent home just to return on March 7 with severe pains throughout my upper body. On this second trip to the ER, I was correctly diagnosed, put on a helicopter, and sent to a hospital that specializes in cardiology in Houston. For five days, I lay in pain and tears while Dr’s ran test after test. Even being on a pump for pain, I suffered and cried. After another ten days in the hospital, they were able to send me home without surgery. I suffer daily with very low circulation to my left leg which is very painful when walking any distance. I was sent home with instructions to watch my blood pressure and manage the pain.

I have never been so terrified in my life.

My AD is very long, and I have an aneurysm closer to my abdomen! I have been home for two months now and feel like I am getting stronger by the day. I have gone back to work part time and gotten off of most of the pain medications. I feel as if I have a lot to learn about my disease, and some days, I still get really frightened about my situation. Somehow, it helps knowing that my brother and I are not the only people fighting this battle. It is also nice to see some of the individuals on this site who have survived ten years or more. It gives me hope that I will live and be here for my daughter.

Here’s to all of you survivors out there! I have Aortic Dissection and have survived!!

Norma Hernandez-58

Name: norma hernandez
Age at time of Dissection: 58
Type of Dissection: Descending
Date of Aortic Dissection: 2 March 2013
Tell Us Your Story:

I have an aortic aneurysm but my doctors will not operate. I have to see the surgeon in August and he said if my aneurysm is bigger than he’ll operate.

Can someone tell me why my doctors are reluctant to operate? I feel like a walking time bomb.

Ron Koch-58

Name: Ron Koch
Age at time of Dissection: 58
Type of Dissection: Descending
Date of Aortic Dissection: 10 August 2012
Tell Us Your Story:

My dad was an unlucky victim of a descending aortic dissection. I am telling his story, because he unfortunately died just a day after he was diagnosed with this. I am his daughter Katie and attend college in Missouri. At the age of 20 I lost my father to this horrible diagnosis.

I will never forget that weekend. I feel like that it was just yesterday. I was at work Friday night calling my dad a whole bunch of times to tell him that I got my keys to my new apartment. I was so excited to be finally moving in. He never answered but he soon called me back and left a message on my phone. My dad and I talked almost every day while I have been at college. I would say that I am a daddy’s girl, always was one. He left me a voicemail and I soon called him back, and we talked about my new apartment and I told him that I would call him tomorrow, because I was at work. I wish that I knew that would be the last time I would ever talk to him on the phone.

That night he was woken up by some severe chest pain and horrible back pain. He has surgery on his back years ago and I think that is what he thought was wrong with him. He even drove himself to the hospital that night. I woke up to a text message from my brother to call him. I thought that was unusual because I never talk to him. I called him and he told me that there was something wrong with his aorta and that I shouldn’t worry about it. That he has a 90% chance of survival. That he would be fine and not to make the drive down to the hospital. I was about 2 hours away and being studying in the health science field, I just knew something was not right and so of course I made the drive down there.

I woke up my whole family that was back where I lived and told them to get to the hospital. My parents were divorced, so they did not know yet. I told my mom what my brother told me and something did not seem right. Of course I was right and my mom told me I needed to get there as soon as I can. Once I got to the hospital they pulled my sister and I aside and told us that he had a descending aorta dissection and that it was very serious. He was in the ICU when I finally got to the hospital to see him. His left Kidney was already gone from the lack of blood to it. They also could not do surgery because it was so severe, if they opened him up he would of died immediately. We were told to sit and wait and hopefully his blood pressure would stabilize. They sedated him that night.

The next morning which was Sunday changed my life forever. I got the worst phone call of my life. This time it was my sister calling me telling me dad was doing really bad and I needed to get to the hospital. I was crying so hard at that point my sister put my mom on the phone. The first thing I asked her was “Is my father going to die” and she replied back to me “I honestly don’t know Katie”. When I got to the hospital the priest was already there. They gathered us in a room and explained to us what happened over night. Everything from his heart down was completely gone. He had no function anywhere and gang green already set in. We were told to decide if we wanted to take him off life support we could.

As a family we decided that he would not want to live as a vegetable and was going to die either way. We took him off of everything and he passed within minutes. He was already gone. On August 12, 2012 my dad was taken away from me. He was an amazing father and I miss him so much. My whole family and I now have to get yearly CT scans, because we are all tall and it is possible that we could suffer from it too. I am still dealing with the loss of my father and sometimes don’t know how life will go on. Losing my father at my age definitely showed me a new look on life. I value every single second I have with my loved one. I know this story was long, but I think that everyone should be aware of this. If you have any questions or anything at all please feel free to email me.

Michael Burt-52

Name: Michael Burt
Age at time of Dissection: 52
Type of Dissection: Descending
Date of Aortic Dissection: 17 April 2011
Tell Us Your Story:

Iwas planting shrubs in my front yard three days before my 53rd birthday. I was just about to wrap things up, and I picked up a very heavy pot of clay that I had removed to dump it over my back yard fence. I felt a sharp pain in the middle of my back and knew immediately something had gone terribly wrong. I dropped the pot of clay and walked the short distance to my front door. I sat down in my living room and told my wife to call an ambulance. Instead, she decided she could get me to the hospital faster herself and drove me to the ER. I instinctively knew that whatever was wrong with me, I needed to sit as still as possible.

I was not in any pain and walked into the ER under my own power. I was placed in a wheelchair and told to wait for an intake nurse. My wife wasn’t going to wait and let them know that my condition was serious and that I needed attention ASAP. I don’t remember anything after that, but my wife said I was wheeled in for a CT scan with contrast, and the technician confirmed that I had a descending abdominal aortic aneurysm dissection. Apparently I remained conscious and supplied them with personal details for the intake, even asking if I would be well enough in time to drive to my stepdaughter’s out-of-state college graduation in a month.

A team of surgeons was assembled, and I had a graft inserted to repair the dissection. The surgery went well, but I developed several serious complications that made the surgical team suspect that I might not survive the surgery. Specifically, I developed pneumonia which led to fluid-filled lungs and 100% respiratory collapse. I developed a GI bleed, and my kidneys shut down as well.

For several days after the surgery, I was kept in a state of limbo with a cocktail of drugs including Propofol and Fentanyl in order to keep me conscious enough to follow orders but not enough to realize the dire state I was in. I was having numerous unpleasant hallucinations throughout this period and did not know I was in the hospital. I was intubated and kept restrained to prevent me from removing the tube or becoming agitated and doing further damage to myself. The respiratory physician decided not to treat the pneumonia unless my fever spiked. It didn’t, and I eventually began to recover from the infection on my own, but I was kept in the ICU for two weeks while my body tried to deal with the complications I was experiencing.

After two weeks, the ICU staff were able to remove the tube from my throat, and I was able to breathe on my own. My mind and memory were still pretty foggy from the sedatives I had received, and although I knew now that I was in a hospital, I did not understand why. My wife was allowed to stay with me during this time, and she was eventually able to supply me with all the details.

Because of the respiratory complications and the fact that I was a taking coumadin and my INR wasn’t stable yet, the surgeons were very cautious about discharging me. After two weeks in recovery, I pressed the doctors to let me go home where I could monitor my INR myself, and the chief surgeon signed the discharge papers on 12 May. I agreed to work with a home health nurse to assist me in rehabilitating my ability to stand, walk, and talk. I remained off work until 3 July.

15 years previously, I had suffered about of bacterial endocarditis that damaged my aortic valve. I received a six-week regimen of antibiotics for the infection, and a year later, I had the valve replaced. During the triple-A surgery, the surgeon removed my artificial valve, cleaned it up, and re-implanted it.

It took a bout 9 months for me to return to what I would call 85-90% normal. I returned to a more or less normal lifestyle although I have to monitor my BP, and have become somewhat more sedentary than I was before the surgery. I continued on my coumadin regimen and metoprolol tartrate (to control my BP). The only other meds I take are unrelated to my condition: thyroid hormone (high TSH/low hormone) and cymbalta (to prevent anxiety attacks). I still do not feel 100% and try to maintain a low-key lifestyle now with regular checkups.

Marc Janis-65

Name: Marc Janis
Age at time of Dissection: 65
Type of Dissection: Descending
Date of Aortic Dissection: 19 December 2012
Tell Us Your Story:

Over the years I have tried to maintain a level of fitness which would benefit my health and also set an example for the athletes I coached on the high school level. At age 65 I was still training for half-marathons and worked out regularly in the gym. A routine checkup with my heart doctor in Sept. led to an abdominal ultrasound since my birth father hadan abdominal aneurysm It was discovered that I had a 3.5 cm. aneurysm in my left side iliac artery. I was immediately referred to a vascular surgeon who placed me on beta-blockers and ordered a CT-scan. It was then discovered after the scan that I had an enlarged iliac artery on the right side. The surgeon recommended surgery within three months. He also suggested that due to my level of conditioning he was confident that I could handle the open surgery which would allow him to remove both aneurysms and graft a dacron tube/artery in place.

When I asked if I could still workout prior to surgery he said yes but cautioned me to keep my heart rate to 120 and below. I worked out everyday up to the surgery on the elliptical and occasionally on the treadmill. I did not do any lifting. Needless to say I was able to maintain my conditioning which allowed me to bounce back from the surgery in record time. What was suppose to be a 7-10 stay in the hospital turned out to be 5.

The surgery was a success and the doctor was extremely pleased with the outcome. After several days of walking at home I was back to the gym and the treadmill/elliptical in 9 days. As of this writing I still have until Feb. 13 before I can start lifting an running.

An interesting side note when I returned to the surgeon for my staple removal and checkup was that after he had me open and was removing the aneurysm on the right side was the discovery of an ulcerated area that was paper thin and would have been the spot that would have ruptured. He also removed my appendix so that another surgeon down the line would not interfere with the graft.

Several things standout in my mind concerning this experience.

1. Being adopted, I was able to find out some medical history about my birth parents.

2. Having that information prompted my heart doctor to order an ultrasound.

3. A highly skilled vascular surgeon who was confident in his ability.

4. All those years of working out paid off in allowing me to have the open surgery and recover at a much faster rate.

Finally I hope my story will reinforce the idea that fitness counts when faced with serious medical problems.

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